The Sexual Experiences and Sexual Abuse of Women with Learning
The sexual experiencesand sexualabuse of women with learning disabilitiesin institutional and community settings.
A thesis submittedto NEddlesexUniversity in partial fiilfilment of the requirementsfor I the degreeof Doctor of Philosophy
Michelle McCarthy (B. A. Hons., B.PH., M. A. )
School of Social Work and Health Sciences
Mddlesex Urýversity
March 1997 ABSTRACT
Using in-depth interviewswith seventeenwomen with leaming disabilities,this research focuseson how the women experiencedtheir sexuality.Attention is paid both to their consentedsexual experiences and sexualabuse, as well as to other relatedmatters such as contraceptionand sexual health.
The main findingsof this researchare that only a small minority of the women were very positive about their sexual lives. Ile majority lacked control in terms of deciding for themselveswhat they wanted to do, with whom, when and how. Most of the women experiencedexclusively or predominantlypenetrative sex. A lack of sexual pleasure generally,and orgasmspecifically, was reported by all the women. In addition very high levels of sexual abusewere reported. The findings of this researchare discussedin the context of other relateAwork in the learning disability field, and other researchon the sexualityand sexualabuse of non-disabledwomen.
One of the most important findings is that, with a few exceptions,there were very few differencesin the experiencesof women who lived, or had Hvedin hospitals,compared to women who lived in communitysettings. The quality of the womeds experienceswere more directly determinedby the natureof the relationshipsthey had with men;whether men were abusive or aggressivetowards them; the womerfs levels of self-esteemand assertiveness;the availabilityof sexeducation and support.
Policy and practicerecommendations are madewhich relateto increasingwomeiYs sexual safetyin lean-dngdisability services; achieving justice if they havebeen abused; changing the contentof sex educationto includemuch more of an emphasison womerfssexual pleasure, choices,and consent.Recommendations are also madefor supportingmen in their sexual relationshipswith women. ACKNOWLEDGMENTS
My thanksgo to the following people: the seventeen women with learning disabilities whose experiencesand views are disabilities representedhere, and to all the many other women with learning who have sharedpersonal, and sometimes painful, information with me;
my colleagueson the Sex Education Tearn, who not only supportedme and my work whilst I was there, but who welcomed me back after I left and who thus made the completion of this researchpossible. David Thompson was not only instrumentalin providing this support,but he also read and commentedon the final draft of the thesis,for which I am extremelygrateful;
Helen Cosis Brown and JeanneGregory for their encouragementand expert supervision over the years- manythanks. 77ze sexual expefiences wd sexual ahuse of women with learning disahilities in insiftutional wid community setlings.
CONTENTS PAGES
CHAPTER ONE - RTMODUCTION 1-5
CHAPTER TWO - NIETHODOLOGY AND NETHODS 643
CHAPTER THREE - LITERATURE REVIEW Perspectiveson sexualityand sexualviolence 44-68
CHAPTER FOUR - LITERATURE REVIEW Lean-dngdisability ideologiesand sexuality 69-107
CHAPTER FIVE - FINDINGS 108-174
CHAPTER SIX - DISCUSSION 175-196
CHAPTER SEVEN - RECOMMENDATIONS 197-221
APPENDIX - INTERVIEW QUESTIONS 222-225
BEBLIOGRAPHY 226-252 1
CEUPTER ONE - INTRODUMON
Women with learning disabilitiesare women too' (Williams 1992:149). This fact, and it implications,now so obviousand importantto me, hasnot alwaysbeen at the forefront of my mind. From the mid- to late-1980s,I was either working full time with peoplewith learning disabiliýiesor trainingto be a socialworker, with a view to returningto the learningdisability field. During this time, I was closelyinvolved with a smallgroup of other women in settingup and running a rape crisis servicein our town. I was also part of a supportgroup for the local Women'sAid refuge. At that time I consideredmy work with women on issuesof violence and sexualabuse, and my work with people with learningdisabilities, to be two completely separateareas of interest. Nobody I knew, nor anything I read at that time, suggested otherwise.However, onceI facilitatedmy first group for women with learningdisabilities, my eyeswere openedto the fact that, particularlywith regardsto sexualabuse, those women had much in commonwith other women. From that point on, I beganto seemany connections (and some differences)and my working ffe changed.During my social work practice, I becameincreasingly interested in supportingwomen with learningdisabilities in their personal and sexualrelationships and this led to me taking up a post which was solely concernedwith issuesrelated to sexualityand learningdisabilities. By the time this researchbegan in 1992,1 hadbeen employed for threeyears as the TeamLeader of a smallspecialist sex educationteam for peoplewith learningdisabilifies. Ile teamwas based,and worked predominantly,in three ' big hospitals for people with learning disabilities in a shire county in S.E. England. Nevertheless,the team membersspent a significantproportion of their time (in 1992this was approximately25%) working with peoplewith learningdisabilities in communitysettings, such asgroup homes,hostels and day services.
The SexEducation Team was setup (with me as a foundingmember) in 1989,originally with a focus on HIV prevention.It was initially funded by the Regional Health Authority's IRV Preventionbudget and managedby a local Health PromotionUrk It later becamean integral part of the NHS LearningDisability Trust in which it was based.
As the only woman on the team, I was responsiblefor all individual and group work with womenwith learningdisabilities. My work covereda broadrange of issuesrelated to sexuality, such as: safer sex education;support and counsellingregarding relationships and sex; sexual 2
abuseprevention work; counseUingand support for women who had been abused;as weU as sexeducation in the commonlyunderstood sense of the term.
My direct work experienceon the team, and a small piece of academicresearch based on it (McCarthy 1991) hadgiven me somegood insightsinto how women with learningdisabilities were experiencingtheir sexualfives. However it was noticeablethat the growing body of literature regardingsexuality and learningdisability did not explore or describethe reality of actualsexual experiences of actualwomen and men; rather the literature was 'about sexuality' in a more abstractsense. In chapters three and four of this study,I haveset my own work in the context of the literature on sexualityand lean-dngdisability, as well as in the context of researchand thinking on sexualityissues more broadly. The motivation for this research,then, was to fill the gaps in my own knowledge,but also to fill the gaps in 'knowledge'in a wider sense.
I decidedthat I would thoroughly investigatethe sexualexperiences and sexualabuse of a samplegroup of women with learningdisabilities. My position at that time was ideally suited to the task, becauseit was an integralpart of my job to talk to individualwomen with lean-dng disabilitiesin hospitaland communitysettings about their sexualfives. However it is important to note that at the end of 1993,1changed jobs. I took up an academicpost where the focus of my work was still the sexualityof peoplewith learningdisabilities, but where I had much less direct contact with people with lean-dngdisabilities themselves. I managedto negotiate a situationwhereby I returnedto the sex educationteam for 1/2dayor I day per week for a two year period and I continuedmy interviewsthat way. Only three of the seventeeninterviews in this study were conductedin the areaI moved to for the new job. This is becausethere are considerabledifficulties in gainingaccess for researchpurposes to individualswho use learning disability services: with a subjectmatter as sensitiveand personalas sexualexperiences, it provedvery difficult for me to gain entry to servicesand those people who usethem.
I was very aware at the outset of the researchthat it would probably not benefit the respondentsthemselves in any directway. However this is not unusualin researchand it is not necessarilyproblematic or unethical,as long as both the researcherand researchedare clear aboutit: I
3
[..] it should be noted that even if researchhas little impact on the fives of those includedin it, it may be important for the category of personsthey are takento represent.Thus, work on rape, or women'shousing problems may be too late to alleviate the suffering of those directly involved in it, but can contributeto legislation,policy or the behaviour of agenciesin ways which later enhancethe experiencesof others(Maynard 1994:17).
Although it is true that the seventeenwomen involved in this researchwill probablynot profit in anyway from the end resultsof it, neverthelessI was confidentthat they could benefitfrom the process.I was also anxiousto avoid the situation of being overly intrusive with relative strangers(bearing in n-dndthe natureof the investigation).I thereforemade a commitmentthat I would not talk to any women with learning disabilitiespurely for researchpurpos es. This meantthat I arrangedall seventeeninterviews to take placein the context of my providingthe women with educationalor counsellingsupport on relationship/sexualityissues. There is a full discussionin chapter two on how I attemptedto get the methodologyright.
Using serni-structuredin-depth interviews, I haveobtained information from seventeenwomen with learningdisabilities' on the following areas:the rangeof sexualactivities they engagein; their preferencesand dislikesin relation to that; their knowledgeabout their bodies;decision making and control over sexual activity; coerced or forced sexual activities; their sex education;their impressionsof other people!s sexualfives; their sexualand reproductivehealth including their use of contraception.The original set of questionsI deviseddid not include questions about how the women felt about their appearanceand how they rated their attractiveness.One of my supervisors,Helen Cosis Brown, pointed this omissionout to me and becauseI agreedthat they were important considerationsin any explorationof womerfs sexuality,they were then added.However it meantthat the first woman interviewedwas not asked these questions,although the subsequentsixteen women were. (See appendix for interview questions.)
The political context of this piece of work is one wherebyI have tried to make explicit how women with learning disabilitieshave, by and large, been renderedinvisible in two human rights struggles,where they have a righffW place: namelythe womens movement;and the movementtowards normalisation/ socialprogress for peoplewith learningdisabilities. In this researchstudy I havesought to rectify theseornissions. In chapter three I arguethat it is due 4
to feminist activism,research and scholarshipthat it is possibleto recogniseand challengethe sexualoppression of women. However I also argue that much fen-dnistanalysis and many feministshave traditionally ignored the very existenceof women with learningdisabilities. It has fallen to those of us who work within the learning disability field and who are also feminists,to make 'mainstream!feminists aware of the experiencesof women with learning disabilities.Encouraging and facilitating women with lean-dngdisabilities to speak out for themselveshas been an importantpart of this process. In chapter four I arguethat althoughthe principlesof normalisationand ordinaryliving have beenof enormousimportance in servicesfor peoplewith learrdngdisabilities, they havetended to obscure pre-existinggender inequalities(and indeed inequalitiesbased on race, sexual orientation, class). Sexual rights have rightly had a fairly prominent place in the general demandfor rights for people with learning disabilities.My work (and that of others) has demonstratedthe necessityof recognisingthe genderedsexual fives that peopletend to five and has spelt out what the implicationsof this are for manywomen with learningdisabilities. Theseare highlighted in chapters five and six.
One of the important theoretical contributions;of this work then, is that I have used a methodologywhich makes analysesalong the axes of both gender and disability. This is importantbecause it hasbeen argued that:
the intersection feminism disability has been .. of and studies one of the least explored becauseof the dominanceof disability as the primary category of analysisand the avoidanceof feminist studiesto include disability in their categoriesof difference.This process,whereby women with disabilitieshave Men through the gaps of defmition, theory, and consciousness,has manufactured a silence around them and their experiences(Chenoweth 1996:394).
In this researchstudy I wantedto avoid an analysisof the experiencesof women with learning disabilitieswhich suggestedthat any oppressionstemmed purely from their gender. I also wanted to avoid some of the familiar traps of some research from a disability rights perspective:unproblematically accepting a malenorm; andbeing firmly rooted in, and relating exclusivelyor primarilyto, the experienceof peoplewith physicaldisabilities.
This piece of researchhas taken place during a time of considerablechange in servicesfor peoplewith learningdisabilities and in the wider context.But the changeprocess has been far 5 from smooth. The large institutions for people with learning disabilitieshave continuedto close,but communitybased provision continuesto be under-resourced.In addition there has beenthe introductionof the'internal market'in the NHS andthe developmentof NHS Trusts. CareManagement and assessment have alsobeen introduced in the social care market,which hasbecome increasingly fragmented. Far more researchis neededto monitor the effectsof the various social policy changesupon the lives of individualswith learningdisabilities. There is a widespread assumptionthat all aspects of He are fundamentallydifferent dependingon whether a person fives in a large institution or small community based setting, with the community being always assumedas superior to the institution. A comparison between institutional and community settings has been an explicit feature of this researchand my findingssuggest that with regardsto one aspectoý fife, namelysexual experiences of women with learning disabilities,there are far fewer differencesthan might have been expected. Despite this, I am very clear in my discussion(chapter six) and recommendations(chapter seven)why this particularfinding should not be used in any way to argue for the continued provisionof hospitalbased services.
Working from a feministperspective (integral to which is a belief that many sexualproblems are a result of socially constructedgender roles and expectations)I anticipatedthat any recommendationsresulting fi7om this researchwould be in the realm of the social or political, rather than the individualor private sphere.Indeed this is what hastranspired: whilst someof the recommendationsin chapter seven suggestchanges that individual women with learning disabilitiesmight be enabledto make,most of the recommendationsinvolve stepsto dismantle the wider, structuralforms of oppressionthat the womenface. 6
CHAPTER 2- METHODOLOGY AND METHODS
In this chapterI will briefly outline someof the major principlesand practiceguidelines of the three different researchperspectives which are most relevant to my work: ethnography, disability researchmethodology, and feminist researchmethodology. I will discusshow my work both relates to, and departs from, these perspectivesand how it is, in fact, an amalgamationof elementsfrom all three. An examinationwill also be made of some of the particular considerationsinvolved in researchingsensitive topics. In the final section I will outline the actualresearch methods used and why they were chosen.
Methodology
Ethnography
Ethnographyis often saidto be the work of describinga culture (Spradley1979). Through a possiblemixture of participant observation,analysing documentation and interviewing, the ethnographeraims to be able to describeone group of peopleto another. Ethnographyalso describesbehaviour in its natural setting. The ethnographershould not be aiming to remain completelyobjective from the subjectsof her/hisresearch (even if this were possible)nor to becomingso enmeshedin their fives,that any descriptionsof them are completelysubjective. Ethnographyis essentiallyinterpretive.
Consequently,much traditional research terminology misses the point of a lot of what goeson in ethnographicstudies: generating hypotheses, control groupsand independentvariables may be irrelevant when the task is to describeand interpret a society or part of a society. Agar suggeststhat 'the languageof the receivedview of sciencejust doesnot fit the detailsof the researchprocess very well if you are doing ethnography'0985: 12). However, if this is true, it doesnot meanthat thereis no researchprocess and that it is simply a matter of observingand reporting. Fielding (1993)states that to understandsocial behaviour, the researcherneeds to understand the subject's'symbolic! world, i.e. the meaningspeople apply to their own experiences.The researchermust try to see things as the subjectsdo, adopting, as far as possible, their perspective. This is the introspective, empatheticprocess Weber called 'verstehed(1947). 7
Ethnographyand participant observationhave their roots in anthropology,a field of study which requiredresearchers to go to a societyalien to their own and participatein people'sdaily fives, watching what happened,listening and asking questions. Consequently,much ethnographicevidence comes to the researcherin unscheduledand informal ways. This can make the material very difficult to document,but neverthelessit can be both powerful and appropriateto includeit.
Most ethnographersbelieve that the longer and better you get to know your subjects,the deeperand more complexyour understandingof their world will be. Rappore is a vagueand much used term, which essentiallydescribes the elementof positive quality of relationship betweenresearcher and researched.Without this rapport and if the subjectsdo not fike and/or at leastrespect the researcher,s/he will not be 'aflowedin. In ideal circumstances,this rapport would develop naturally,but there is no doubt that the researchercan use certain tactics to help it along, e.g. dressingand speakingin a fashion closeto, or at least acceptableto, the researchsubjects. On a simplelevel this could meanwearing ieansrather than a businesssuit to interview teenagers. However, there is a fine line for researchersbetween facilitating rapport and manipulatingunsuspecting subjects, or indeedpatronising them. As well as these tactics, it is also common for ethnographersto adopt the role of 'acceptableincompetent! (Daniels1967), so that the researchsubjects have to show andexplain things to the researcher.
In every human society, languageis the primary meansfor transn-dttingculture from one generationto another.T'his is also true with regardsto the transmissionof informationfrom the researchsubjects to the researcherin ethnography. However, languagealone is not the only transmitterof cultural knowledge,and this appliesequally to research.Observations must alsobe madeand very importantly,inferences drawn. As no researcheris evergoing to be able to see and hear everythingabout a particular culture or group in society, inferencesmust inevitablybe made.Malinowski pointed out that becausepeople in their own culturestake their fundamentalassumptions for granted,'the ethnographermust draw the generalisationsfor himselý must formulate the abstractstatement without the direct help of a native informant! (1950:396). To make an acceptableinference, the ethnographicresearcher must explainwhy that inferenceis better than any other and tie in that inferencewith the broaderknowledge of the society.Further, the inferencemust be ableto clarify subsequentsituations. S
This researchstudy is basedon ethnographicprinciples and practices.My aim was to describe the sexualfives of women with learningdisabilities. My materialwas gainedby spendingtime with the women, listeningand askingquestions. I also interpretand draw inferencesfrom their directly reported information, placingthis in the context of observationsthat I make of their environmentsand infon-nationthat comes to me informally via a number of channels. Ethnographicstudies are alwaysqualitative ones, usually with a small samplesize. This results in an emphasison the depth, intensity and richnessof the material obtained,rather than on providing a sweepingoverview. My work hereclearly fits into that pattern.Likewise, aswith a lot of other ethnographic studies, it is in the tradition of what Fielding (1993) calls 'pathbreaking!research, i. e. exploringthe hithertounknown or obscure.As my literaturesearch in chapterfour will illustrate,this researchoffers the first in- depth insight into the way women with learningdisabilities experience their sexualfives.
Ethnographicresearchers have tended to emphasisethat it is importantfor researchersto learn how to understand and speak the same language as their subjects. With its roots in anthropology,this would havemeant in manycases, actually lean-dng a foreign language.But evenwhen the researcherand researchedshare the samenative language, it is importantnot to assumethat each knows what the other is talking about. Some of the difficulties of interviewing people with lean-dngdisabilities are discussedlater, but for me it was also important to be aware that many peoplewith learningdisabilities (particularly those living in hospitals)have slang terms or jargonjust like any other sub-culture.For example,being 'up the pold meansgetting angry or losingyour temper,and not, as somemight assume,a slangterm for beingpregnant. Clearly, in the context of my research,it is very importantto know that!
This researchdiffers from some other ethnographicstudies in that there is no elementof participantobservation. With regardsto the womerfs generallife experiences,there was no possibilityof my living alongsidethe women with learningdisabilities in theirnaturaT settings (nor would I have had any wish to do so), thereforeI could not gain first hand experienceof what their daily fives were like. I do have insights into this from having worked in these settingsfor a considerableperiod of time, but I am the first to admit that this is not the same. 9
With regardsto the women'ssexual experiences, which after all, form the raison d'etre of this research,these are also not amenableto direct study. Becausein societypeople's actual sexual activity (as opposedto representationsof it) is consideredan essentiallyprivate matterbetween the people concerned,the only ethically acceptableway of directly observingpeople! s sexual behaviouris if the subjectsvolunteer freely to take part. As my researchsubjects were not volunteersand moreoverbecause people with learningdisabilities are generallyconsidered to be more easilysuggestible than the generalpopulation, it would havebeen completely unethical evento suggestdirect observation.Therefore I was entirely dependenton first hand accounts of it. WhUst this may be a departurefrom traditional ethnographicstudies, it is a method consistentwith most other, usuallymuch larger scale,research projects into sexualbehaviour, e.g. Kinsey 1948,1953,Me 1976,1981.
A politicalperspective on disability research The oppressionof people with disabilitiescan be seenon a number of levels. For example, discriminationagainst people with disabilitiescan be measuredby their lack of equalaccess to employment(Ravaud et al 1992,Labour Research1992), housing (Dunn 1990,Fielding 1990), healthcare 03ax et al 1988),and by almostany other factor one caresto mention.As a result of such discrin-dnation,people with disabilities (like women, black people, gay men and lesbians)have formed social and political movementsto fight their oppressionand campaign for equality.It is in this context that in recentyears, a smallnumber of writers and researchers who themselveshave physical disabilities (and some of whom are also feminists)have started to challengemany aspectsof researchon disabledpeople. Their challengesrevolve aroundthe lack of researchin the first place,how that researchwhich hasbeen done hasnot proved itself useful to disabledpeople! s fives, how it has been done on disabledpeople by non-disabled peopleand how it haspathologised individual disabled people and their problems(Oliver 1990, 1992).In short, 'disabilityresearch has, in the main,been part of the problemrather than part of the solution'(Morris 1992:157).
Oliver statesthat:
the process of the [research] interview is oppressive,reinforcing onto isolated, individual disabledpeople the idea that the problemsthey experiencein everyday living are a direct result of their own personalinadequacies or financial limitations (1990:8). 10
If this is the case,then the positive and practical suggestionsput forward by writers such as Morris and Oliver are very useful; i.e. to COntextualiseresearch within a disability rights perspective,which identifiesthat it is the non-disabledworld which deniesopportunities to, andoppresses, disabled people.
Some disabledpeople are demandingthe right to be given the means(including accessto education,jobs, and resources)to do researchthemselves. In the absenceof this, they demand to be consultedabout the type of researchdone, its methodsand the use to which it will be put. It is suggestedthat the methodologyof researchmust changeand be built upon trust and respect,building in participationand reciprocation,so that researchitself would becomepart of a developmentalprocess which includeseducation and political action(Oliver 1992).
There is nothing in the literatureon the politics of disabilityresearch that I have read which makesany referenceto researchon people with learningdisabilities. It is written by people with, and focuseson, physicaldisability and assumesthe subjectsof the researchwould have the intellectualcapacity to contributeto the researchprocess in the ways describedabove. However, there is a separate,and small, body of literaturewhich is written by non-disabled researchersabout working collaborativelywith peoplewith learningdisabilities (Minkes et al 1995, Townsley 1995, Young 1996). This literature points out that, unlike in the physical disabilityfield, the pressureto makethe researchprocess accessible to thosewho traditionally had been only research subjects, has not come from people with learning disabilities themselves.Nevertheless, the literaturesuggests that it is both possibleand desirable to involve peoplewith learningdisabilities at all stagesof the process,from settingthe researchagenda to disseminatingthe results. However, Nfinkes et al do point out that including people with learningdisabilities in 'arguablythe most complexpart of the researchprocess' ie dataanalysis, hasproved particularlyproblematic (1995: 97).
Wbilst I agreethat involving people-Aith leaming disabilitiesin research,as researchers,is a developmentin the right direction (see p.30), I also feel that those who are proposing such movesneed to give more considerationto the different contextsin which researchhappens in lean-dngdisability services.When work is commissionedby a serviceand/or is funded by a governmentdepartment or major fundingbody QvEnkeset al 1995),it maywell be possiblefor all concernedto invest their time and financialresources to in making researchaccessible to 11 people with learning disabilities. However, not all research is conducted under these conditions. Practice-basedresearch, such as mine, is often done in rather different circumstances(McCarthy 1995). Throughout the whole of this study, only the actual time spent interviewing women with learning disabilities was done during my work time. Everything elsehas been done in my own time. In addition there hasbeen no funding for the research, other than my employer paying approximately half of my tuition fees to the University and my travel expenses.Other researchers,with little or no fundingand very limited work time available,would find themselvesin a very similarposition to mine,ie effectivelynot in a position to provide resourcesor supportfor any peoplewith lean-dngdisabilities with the meansto do the researchthemselves, or evento work alongsideus.
In this study I certainly informed the women with learning disabilitieswhom I interviewed what I was doing in very simpleterms, e.g. 'I am talking to women about sex, so I can leam more about it and try to make sure women get the help they need'. The actual words 'research','methods', 'policy', etc. would not necessarilyhave been used,because they would not meananything to most of the peopleI worked with. But neverthelessI tried to seethat the women had a basicunderstanding of what I was doing. However, this was to try to gain their informedconsent (for a fuller discussionon this seep29) andit was not a consultationprocess. Although eachindividual woman had to agreeto my askingher questions,she was not asked whether she agreedwith the whole tenet of the researchin the first place. That said, some women did spontaneouslysay they thought it was a good idea and if a significantnumber had saidit was a bad idea andwhy, I would certainlyhave listened carefully to that.
Minkes et al suggestthat where it is not possibleto involve peoplewith lean-dngdisabilities as researchers,all researchneeds to focus on their needsand ensurethat they are enabledto expresstheir opinionsand interests(1995). In Morris' (1992) paperPersonal and Political. a FeministPerspective on ResearchingPlýýcal Disability, shesuggests two maingroundrules that non-disabledresearchers should follow. The first is to turn the spotlight on the oppressorsrather than the oppressedand the secondis to put the personalexperiences of individual disabledpeople into a social and political contextýwhilst at the sametime giving a voice to the 'absent!research subject. Thesewere certainly my intentionsin this research study. 12
Morris also assertsthat it is not very helpful to talk about disabledwomen experiencinga doubledisadvantage, because the negativeimages of disadvantagecan contributeto the actual experienceof oppression. I agreethat this is the case,but at the sametime it is surelynot very helpful to avoid statingan obvioustruth -'that living as a disabledperson in a world that highly valuesa lack of disability and living as a woman in a patriarchalsociety is to experiencea double disadvantage(Deegan and Brooks 1985, Williams 1992, Hutchinson et al 1993). Similarly,to be a black woman in a societywhich discriminatesagainst both black peopleand women or to be a lesbianin a societywhich discriminatesagainst same-sex relationships and againstwomen is to experiencedouble disadvantage.Indeed some Black disabledwomen have spokenabout their experienceof 'triple discrimination!(Francis 1996:12). Clearly these arevery complexissues, for the experienceof being disabledor black or a woman is going to be different for individual people,even though they sharesome of the samecharacteristics. People!s own personalresources such as their family and cultural background,their own personalityand their materialresources will inter-relatewith factors of externaloppression to produce different sets of circumstancesand different feelingsof oppressionassociated with them. Neverthelessit ýeemsunhelpful to avoid all referenceto 'double disadvantage!,for in doing so an opportunityis lost to highlight the fact that there are many layersof oppressionin operation. As long as it is madeclear by the commentatorthat s/hebelieves there is nothing wrong with any of the abovestates of beingper se,but ratherthat it is the responsesthat these 'conditions'generate in people (who,usually, do not sharethem) which are at fault, then I am fairly comfortablewith the phraseand conceptof 'double disadvantage!and at times in this researchI highlightwhere I think it is operatingfor womenwith learningdisabilities (see page 185).
Feministresearch methodology Feministresearch grew out of the secondwave of feminismin the United Statesand Western Europe from the 1970s onwards. As women were analysingthe impact of gender power relationsin all spheresof life, it was inevitablethat traditionalresearch methodology would be scrutinisedand found to be as male dominatedas any other academicpursuit at that time. Researchmethodology was thereforereconstructed by feministsto reflect the changinggender politics andgender relations of wider society. 13
Thereseems to be a generalconsensus of opinion in the literature,that there are no suchthings as feminist researchmethods (i. e. techniques,specific sets of researchpractice). Claimsthat hadbeen made in the late 1970s/early1980s regarding the divide betweenquantitative research methods= male = bad vs qualitativeresearch methods = female= good, have largely faded away (Stanley& Wise 1993).Conversely, there doesseem to be a consensusthat there is such a thing as feministmethodology (i. e. a fi-ameworkor perspective,a set of guiding principles). Theseprinciples concern the researchprocess itself, i.e. who is researchingwhom, what about, how andwhy, aswell as broaderissues, such as the useto which the researchmay be put.
With regardsto the researchprocess, the need for reflexivity has been emphasisedby many fenfinist researchers(see, for example,Acker et al 1983,Clegg 1985,Harding 1987,Stanley 1990). Reflexivity is a reactionto the clairnsof objectivitythat had traditionallyformed part of the positivistresearch paradigm and which was basedon a beliefthat the socialworld could be studiedin the sameway as the naturalworld. Reflexivity is basedon a belief that knowledge obtainedfrom researchis dependenton the assumptionsunderpinning it andthe methodsused to obtain it. Consequently,both the researcher'sassumptions and her methodsmust be made explicit. Somewriters go finther and assertthat biographicaldetails such as the researcher's class,race, culture, gender,beliefs and behavioursshould be 'placedin the samecritical plane as the overt subjectmatter, therebyrecovering the entire researchprocess for scrutiny in the resultsof research'(Harding 1987:9). However as I have alreadyexplained with referenceto the politics of disabilityresearch, such biographical details do not necessarilytell you anything very much about individual people. Neverthelessat different points in this researchstudy, (where it has seemedrelevant) I haveattempted to 'place!myself, both as an individualand in relation to my researchsubjects. This is usually in terms of explainingshared experiences, rather than biographicalfacts. Moreover, considerablespace has beengiven to reflecting on the actualresearch methods used (see below).
Another centralprinciple of feministmethodology is the rejectionof a traditional androcentric bias, which subsumeswomerfs experiencesinto merfs,i. e. assumesthat womeds experiences will be the sameas merfs and thereforeuses generic terms to describeresearch subjects and their actions. This is certainlytrue with regardsto peoplewith learningdisabilities, who in the professionalliterature and/or services provided for them, areusually referred to aspeople with learning disabilities,and not as women and men, or as girls and boys, with different and 14 potentiallyconflicting needs and experiences.By choosingto focus this researchstudy on the sexualexperiences of women with learningdisabilities, I am actively seekingto redresssome of the traditionalandrocentrism.
Also fundamentalto feministmethodology is a rejection of the traditional public/privatesplit, an ideology which hasplaced mens concerns and activitiesin the public, thereforenoteworthy, sphereof life andwomen's concerns and activitiesin the private,therefore unimportant, sphere of fife. Feminist researchmethodology takes from feminist activism the belief that the 'personalis political'. To see the personalas political meansto see the private as public! QýUcKinnon1987); thus womensexperiences and meifs behaviour(as so much of the former is dependenton the latter) are forced onto the agendafor public scrutiny. Much of this researchstudy (especiallythat involves which relatesto -sexual abuse) placing the private experiencesof women with learningdisabilities in a public and political context. This research study follows the path laid down by activistsin the womeds movementas well as by other feministresearchers, without which the exposureof the extent of sexualabuse of women and childrenby men would not havebeen possible. Sadly, as a society we are nowherenear a completepicture of the true extent and nature of abuse,but hopefully this study will be a usefulcontribution to the wider picture.
Moving away from the researchprocess to the purposeand outcomesof research,there is agreementamongst feminist methodologists that researchmust aim to be of use to women, in the sensethat it contributesto challengingand ending oppression(Stanley 1993). Just as someethnographers (e. g. Spradley1979) have argued that knowledgefor its own sakeis not a good enough reasonto undertakewhat might be intrusive, lengthy and costly research,so feminist researchershave also emphasisedthat 'the questions an oppressedgroup want answeredare rarely requestsfor so-calledpure truth. Instead,they are queriesabout how to changeits conditions'(Harding 1987: 8).
Becausein certain contexts knowledge can give accessto power and becauseresearch findings can be distorted and used for purposesother than those which were intended,the feministresearcher has a responsibilityto seethat the researchis, at the very least,intended to benefit womeds interestsand to do what she can to prevent it from being 'misused'. In relation to this, Finch 0984) describeshow her fears that her researchfindings would be 15 misinterpretedand used against the women she had interviewed about their childrens playgroupsprevented her from writing them up for someconsiderable time.
The questionas to who can researchwhom is centralto all three researchperspectives I have discussedin this chapter. Researchis still largely carried out by those who have power on thosewho have little or no power. This is clear from a disability researchperspective, where able-bodiedpeople have invited themselvesinto the fives of disabledpeople, asking all manner of questionsand in the caseof medicalresearch carrying out all kinds of intrusiveand abusive procedureswithout regard for the feelingsof the individuals on the receiving end (Morris, 1992).
Within the traditions of sociology,the most powerfuL i.e. white, middle class,able-bodied, heterosexualmen haveprotected themselves from scrutinyand this hasproduced what Liazos 0972) describesas a sociology of 'nuts, sluts and perverts'.It is incumbenttherefore upon feminists,amongst others, not alwaysto 'study down, but also to 'study up' and 'study along and study ourselves. Whilst efforts have certainly been made in that direction, feminist researchcannot really claim to be egalitarian,for it is still largely 'us' (what Stanley& Wise (1993:7) call the 'theorizingresearching elite! of feminists),researching 'thenf, i.e. women. I cannotmake any other claimsfor this research.However, I think it is importantto note that, despitethe fact that this researchfits theoreticallyinto the oppressivemodel of one of the elite 'us'researching 'thenf, this is not necessarilyhow it feelsto the subjectsof the research.Firstly, this is becausethe women with learningdisabilities I intervieweddid not haveany awareness or understandingthat there are such peopleas academicsor feminists.Secondly, on a more general level, my knowledge oý and skills in, interviewing combined with my natural inclinationand consciousefforts to be pleasantýfriendly and respectfidof the womens dignity and privacy led to a situation whereby the women seemedto feel valued, rather than oppressed,by me. This is exploredfurther later.
Within the field of ethnographyit hasbeen claimed that somegroups are especiallyvulnerable andhave a right not to be researched(Fielding, 1993). No exampleswere given, nor was the point elaborated,but one could speculatethat individualsor groupswho do not understandthe nature of the researchnight come into that category.Furthermore, using 'captive groups' (again,no exampleswere given) for researchhas been described as 'anti-feminisf(Ehrlich 1976 16 cited in Stanleyand Wise 1993). Clearly, I do not agreewith either of the abovestatements, for to agreewith them would meanthat no researchcould ever be done on children,adults with severelearr-dng disabilities, anybody in prisons,hospitals, schools or other institutions.To a large extent people!s vulnerability can be protected by the use of anonymity and confidentialityand by the researcherbeing sensitiveto people!s dignity and rights of privacy. Not to researchpeople because they are perceivedto be generaUyvulnerable and/or because they are (perhaps literally) a captive group means they could be rendered even more vulnerable,as there will be an ignoranceabout their circumstancesand how they aretreated.
To summarise,the in-depth qualitative nature of my researchmethods fits into both the academictraditions of ethnographyand feminist researchprinciples, whilst at the sametime meetingsome of the set criteria of good disabilityresearch principles, i. e. giving peoplewith disabilitiesan opportunityto voice their experiencesand opinions.The researchmethodology fits into the ethnographictradition becauseI am seeldngto understandand describethe experiencesof one set of peopleto another.It is from a disabilityrights perspectivebecause it activelychallenges the pathologisingof individualpeople with disabilitiesand firmly setstheir ' experiencesin a wider social context. My methodologyis simultaneouslyfrom a feminist perspective,because it focuseson womeds experiences,seeing these in both personaland political contexts:it also challengeswomen's oppression and its aim is to improve the fives of womenwith learningdisabilities.
Particukrr considerationsforresearching senvtjve topics Thereis a smaUbut growing body of literatureconcerned with the processand practicalities of researchingsensitive topics (seeRenzetti and Lee 1993,Lee 1993).In relationto research,the label'sensitive! is sometimesnot definedat all, and a common-senseapproach is taken as if the term were self-explanatory(Renzetti and Lee 1993). Common-sensedefinitions are useful insofaras most peoplewould understandthem to includetopics which are difficult or taboo to talk about socially, such as sex or death (Farberow 1963). However such self-explanatory definitions are not useful in understandingresearch where the topic itself may not be particularlysensitive, but the context of the researchis, such as Brewer's (1990) researchon routine policing in Northern Ireland. 17
'Sensitive' meaning 'socially sensitive' researchhas been defined as being more or less synonymouswith 'controversial': Sieber and Stanleydefine it as 'studiesin which there are potentialconsequences or implications,either directly for the participantsin the researchor for the classof individualsrepresented by the research'(1988: 49). This is a very broad definition and,I would suggest,not very clearbecause it could encompasspositive or negative,large or small consequences.Lee offers an alternativedefinition of sensitiveresearch as being that which'potentially posesa substantialthreat to thosewho are or who havebeen involved in it' (1993:4). At a first reading it is hard to see how my research,which most people would considerto be sensitive,could be understoodas posing a substantialthreat to the women involved.However, Lee goeson to further define'threat' as eitherbeing an 'intrusivethreat, in that it deals with areasof life which are private, stressfulor sacred;as possibly revealing information which is stigmatisingor incriminating in some way, or where the research impingeson political aligm-nentsie it exposesthe vested interestsof powerful personsor institutions and/or exposescoercion and dominance.As my researchclearly involves delving into a very private sphereof life, does reveal albeit limited information about some of the women themselveswhich is stigmatising(such as acceptingmoney for sex) and does expose sexualcoercion and dominanceof some groups and individualsby others,then on all three countsit would be classedas sensitive.
As well as being a potentialthreat to the subjectsof the research,it is arguedthat somekinds of sensitiveresearch pose a potentialthreat to the researcher.Research on humansexuality is singledout as being the area most likely to lead to this. Although it has not been my own experience,some sexuality researchers(see Troiden 1987 for a fuller discussionof this) experience'occupational stigma! because of their study of sexuality.They feel their work is trivialised, that their professionalinterest in sexuality is deemedto be related to their own personal sexual faings or excesses,that they are assumedto share the same sexual characteristicsas those they study(Fisher undated), particularly being assumedto be lesbianor gay if they study homosexuality.It is also suggestedthat academicpromotion may be hindered,as the topic is deemedto be too specialisedas well as controversial. As I have indicated,I havenot experiencedthis 'occupationalstigma! myself This is possibly becausethere is a well - establishedstrand of sexualitywork within the learningdisability field and, as my literaturereview demonstrates,I am certainlynot working in isolation.However, I havebeen aware that assumptionshave been made about by own sexualexperiences based on 18 my professionalinterests. For example,it has been assumedthat I have experiencedsexual abuse myselC becauseI am 'so' interestedin the sexual abuse of women with learning disabilities.This is not the case,although the assumptionitself is an interestingone - it would notý after all, be assumedof a speechtherapist that they had personalproblems with verbal communication. Also because I have publicly' (through my writing and conference presentations)been very critical of much of meds sexual behaviour and of the way heterosexualmasculinity is constructed,it has been assumedthat I must be either lesbianor celibate,when in fact I am neither.
However, this is not to suggestthat if researchersdo sharecertain characteristicswith the subjectsof their researchthat this in any way invalidatestheir involvement.On the contrary,a sharedinterest or experiencecan enrich a researcher'swork and certainlyit is not necessafflya factor which leadsto the researchor researcherbeing lessobjective than anotherperson. The needfor reflexivity, which is outlined abovewith regardsto feminist researchmethodology, would indicate a needfor the researcherto explorethe effectsof sharedexperiences on their work. For my part, I assumethat the assumptionsmade about me on the basisof my work in this field, remain in the realm of the personal and have little or no discernibleeffect on my professionallife. Certainlyto date,I havehad no trouble getting my work taken seriously,and althoughthe range of my work is narrow and specialised,that, insofar as it is a problem,is a self-inflictedone.
It has been argued(for exampleby MacIntyre 1982) that certain areasof humanfife are too privateand too sensitiveto be researchedand therefore ought not to be:
certainareas of personaland sociallife shouldbe speciallyprotected. Intimacy cannot e)dstwhere everythingis disclosed,sanctuary cannot be soughtwhere no placeis inviolate(1982: 188).
This would be aUvery well if everythingthat happensunder the cloak of intimacyis positive, lawful and healthy and-that sanctuaryis only sought by those who have nothing to hide. However much of feminist researchand activism over many years has been devoted to exposingthe exploitationof womenwithin intimaterelationships in the supposedsanctuary of their own homes.Indeed researchstudies on sensitivetopics are importantprecisely because 19
'they challengetaken-for-granted ways of seeingthe world' (Lee 1993:2) and 'addresssome of society'smost pressingsocial and policy issues!(Sieber and Stanley1988: 5).
Justas I arguedagainst those ethnographerswho felt that certain groups of peopleshould be protectedfrom research,I would argue againstcertain topics or fife experiencesnot being open to research.It seemsto me that if people are willing to sharetheir experiencesand certainconditions are in place to ensuretheir contributionsare respectedand as individuals they are not exploited, then there is no subject that cannot be researched.Moreover the argumentsthat certain people or certain topics should be avoided becauseof the potential negativeeffects research can haveon the subjects,overlooks the potentialpositive effectsthat researchingsensitive topics can have.Kvale (1983 cited in McLeod 1994) arguesthat a well carried out researchinterview can be an enriching experiencefor the subjects.Kennedy Bergen,regarding her interviewswith women who had experiencedmarital rape, statesthat most of her subjects'claimed that speakingabout their experienceswas catharticand saidthey were gratefulto havea sympatheticfistenee (1993: 209). In addition there is the positivedesire expressedby someresearch subjects, including at least one of mine, to use their own painfW experiencesto help others.
Moving onto the particular conditionsneeded to safeguardthe rights of subjectsinvolved in the researchof sensitivetopics, it is clear that few, if any, are exclusiveto this work; rather they are an extensionor elaborationof good practicein researchgenerally. McLeod describes a 'small set of basic ethical principles'derived from counsellingand medical practicewhich needto be apphed:
These are beneficence (acting -to enhanceclient well being), nonmalificence (avoidingdoing harm to the clients),autonomy (respecting the right of the personto take responsibilityfor himselfor herseloandfidelity (treating everyonein a fair and just manner)(1994: 165).
Although preserving the anonymity of researchsubjects is not explicitly mentioned in McLeod's Est (possiblybecause it may seemlike statingthe obvious)this is, of course,of the utmost importance.
It is generaUyaccepted in the literaturethat, whilst informed consent of subjectsis important for all researchstudies, the more sensitivethe topic, the greaterthe needfor ascertainingtruly 20 informedconsent (Renzetti and Lee 1993).McLeod (1994) goesinto somedetail aboutwhat informed consentactually means and why it may be difficult or impossibleto obtain it from certainpeople eg childrenor adultsin a highly distressedstate. But what the sensitiveresearch literaturefails to do is to offer any clear guidelineson proceeding(or not) if informed consent cannotbe obtained.The ethics of researchwith subjectswho cannot give informed consent becauseof intellectual limitations and/or lifetimes of conditioning to comply with other people!s wishes, are not addressed.Rather, it is implied that problems regarding informed consentcan all be overcome,if handled in a sensitiveenough manner. Some researchers, engagedin work with people with learning disabilities,including myselý come to different conclusionsand this is an issueI addressin more depthbelow.
One of the other primary concernsin researchingsensitive topics is the distressthat may be experiencedby the subjectsduring the actualinterviews. It hasalready been stated that this is far from inevitable,but clearly there is greaterpotential for distresswith sensitivetopics than innocuousones. There is conflicting advicein the literatureabout dealingwith distress:whilst all adviceindicates the needto anticipatethat distressmay occur and plan in advancehow to support subjects at the time and afterwards, thereafter researchersapproach the matter differently.Brannen and Collard (1982) arguethat althoughresearchers need to be supportive and seekto containhighly emotionallycharged scenes, it is essentialfor a researchernot to becomea counsellorto the subjects.Kennedy Bergen, on the other hand, takesthe opposite approachand argues,with referenceto a woman who had becomeparticularly distressed, 'it was not problematicfor me to comfort this woman (both during and after the interview) as I hadnot compartmentalisedmy identity into counsellor,researcher and woman! (1993: 208). This is the approachI adoptedwith the women with learningdisabilities I worked with in this study,partly becauseit seemsmore intellectuallyand practicallysound and partly becausethe context in which I carried out the researchCie during sex education/ counsellingsessions) effectivelydemanded it. To have tried not to be a counsellorduring the researchpart of my sessionswith the women would have been particularly confusingfor those women whose understandingof my researchrole was limited (this links with the issueof informed consent, which is addressedin more depth below.) In addition I made an ethical decisionthat were there ever to be a conflict of interestbetween my needfor researchmaterial and a wornads needfor therapeutichelp, then the latter would alwaystake precedence. 21
Given the nature of the topics discussedduring sensitive research,the demands such discussionsmay makeon the subjectsand the skills requiredof the researcherto conductthe interviewsin a respectfulway, it is clear that there is someoverlap between the researchand counsellingelements of such a task. When the two are conflatedin this way, it is usual to consider what researchhas to offer counselling: obviously the knowledge gained from research,such as greaterinsights into people'sbehaviour and feelings,can contribute to the delivery of more effectivecounselling services. What is often overlooked,however, is what counselling and good interviewing skills have to offer research.McLeod (1994) argues convincinglythat counsellingtheories can help to makesense of the relationshipbetween the researcherand the subjectand the effects of this relationshipon what is said, or not said. In addition,he claimsthat experiencedcounsellors may makegood researchersin the sensethat they will have skills in establishingrapport, be good listeners,ask and answer questions constructivelyand sensitively- in short they will have developedthe necessaryinter-personal skills to facilitate discussionon topics which are hard for most people to talk about. In my own research,my prior experiencenot only of counsellingwomen with learningdisabilities on sexuality issues, but working with people with learning disabilities more broadly was invaluablein helpingme to both designand conductthe researchinterviews (see below for a fuller discussionon methods).
Interviewingpeoplewith learning disabilifies As I have remarked elsewhere,'interviewing people with learning difficulties is not a fundamentallydfferent processfrom interviewing anybodyelse! (McCarthy 1991:24). The researchersstiff have to decidewhat the focus of the interview is going to be, an interview schedulehas to be drawn up, respondentshave to be selected,the questionsput and the answersand interactionanalysed. However, havingsaid that interviewingpeople with learning disabilities is not whoUy different from interviewing other people, it also has to be acknowledgedthat it is not exactlythe same.There are differences,some obvious, some more hidden.
SDe I- Cifficcomideradons One of the more obvious considerationsis that the ability to answerquestions is, in itselý partly a function of intelligence (Flynn 1986) and people with learning disabilities, by 22 definition, have an intellectual impairment. The body of literature regarding interviewing people Aith learningdisabilities is small and within it there does appearto be agreementthat the way questionsare worded hasmore significancefor peoplewith learningdisabilities than for the general population. In other words, bearing in n-dndthe intellectual impairment, people!s ability to answeraccurately can be maxin-ýisedor minin-dseddepending on how the questionsare put. One of the foremost researchersin this field, Sigelman,along with her colleagues,has demonstratedthat people with learning disabilitieshave a greater tendency than other people to choose the last option in either/or and multiple choice questions (sometimesreferred to as recency).This tendencyin somepeople with learningdisabilities is well known to thosewho work closelywith them. However, despitethis tendency,Sigelman et al still recommendthe useof either/orquestions in preferenceto questionsrequiring yes/no answers(1981a). This is becausethe tendencytowards acquiescence(answering yes to a questionregardless of its content) is even more marked with this population (1981b). The tendencyto acquiesce(long sincerecognised also in the non-disabledpopulation, in surveys for example (Wells 1963)) becomesmore pronouncedthe greater the degree of learning disability and the more abstractand subjectivethe question. Simons et al (1989) argue, however,that askingthe kind of questionsSigelman did in 'laboratory' conditionswas likely to generateuncertainty and doubt in the minds of the subjects,something they describeas 'a positiveinducement to acquiesce!(1989: 13). More recently,Rapley and Antaki (1996) have provided a very convincingcritique of Sigelmanet al's work. They suggestthat peoplewith learningdisabilities are not inherentlyprone to acquiescence;they arguethat what appearsto be straightforward acquiescenceis in fact a highly complex process and can only be understoodby analysingthe perceptionsand motivationsof both interviewerand interviewee andthe dynamicsbetween them.
Preciselywhy peopleare more likely to answeryes to a questionrather than no, when they are uncertain,is not often discussed.However, Gudjonsson,as a result of his research,suggests that 'affirmative answersare perceivedto be more acceptableto the interviewer and are consequentlyless likely to be challengedthan 'no' or 'donl know answers'(1986: 199). Wyngaarden(198 1) suggeststhe use of open-endedquestions to avoid the abovementioned responsebiases and this certainlymakes sense theoretically. However it has been noted by other researchers,notably Booth and Booth (1994) that open-endedquestions often do not facilitate people with learningdisabilities in talking freely and fluently. They found, as I did 23 with manyof my interviewees,that'generally speaking [our] informantswere more inclinedto answerquestions WIth a singleword, a short phraseor the odd sentence'(1994: 36).
It is apparentthen, that either/or,yes/no and open-endedquestions all have their lin-dtations when interviewing people with learning disabilities. What happens in practice is that researchershave to find their own style, basedon a likely mixture of the above approaches andvary it accordinglyfor eachindividual. For instanceat an early stagein my interviews,I lested' eachwomarfs tendencyto choosethe last option in either/or questions.Although the needto begin interviews with an open mind and 'test' people!s abilities is recognisedin the literature (Booth and Booth 1994), the actual difficulty in doing this is not explicitly acknowledged.For instanceI used the techniqueof repeatingquestions and reversingthe order of the options to test for the tendencyfor recency.But clearly this techniquehas to be used sparingly and/or done with tact and skill to avoid intervieweesfeeling patronisedor irritatedby it. That said,it is necessaryto makesome assessment of this kind and if I felt that anyindividual woman did tend to choosethe last option, I would endeavourto avoid this kind of questionwhere possible.Alternatively if I could anticipatea likely responseI would place this as first ratherthan last option, so the womanwas forced to give the mattersome thought. To give a concreteexample, I expected(on the basisof all my previouswork in this field and on traditionalsocial and sexualexpectations of women and men) the womento saythat it was menwho initiated sexualactivity with them andnot the other way around.Therefore I would phrasethe question'who startsthe sex,the man or you?' This meantthat womenwho would automaticallysay the last option had to take a momentto think whetherthat was the correct answer(for her) or not. I tendedto repeatand rephrasequestions often, somethingwhich is suggestedin the literature as being important to 'elicit the most complete response!(Wyngaarden 1981: 109). 1 also tendedto repeat,reflect and summarisethe womeifs answersback to them as we went along. This was to checkboth that I had understoodwhat they had said and that they had saidwhat they meantto say. As well as a concreteway of demonstratingrespect for the women and what they were saying,this was an importantstep in terms of trying to empowerthe women. In other words, it was a way in which I tried to ensurethat individually and collectivelythe women'sown voiceswere heard. 24
As many people with learning disabilities find the concepts of time and frequency very difficult, Flynn (1986) suggeststhese are best avoidedin interviews.Booth andBooth (1994) assertthat in their research(on the parentingexperiences of people with learningdisabilities) theseproblems could be overcomeif researcherswere satisfiedwith approximationsrather than accuracyand if concrete markers of time were used such as Christmases,holidays, childrens'ages. Whilst these are undoubtedlyhelpful techniques,it must also be recognised that the subjectsin the Booths' research,as parents,were at the more able end of the lean-dng disability spectrurnand thereforelikely to haveleast problemswith the abstractconcepts of time and frequency.My experiencein this researchwas that it was indeed problematicfor most of the women to say how recently or long ago somethinghappened and also how frequently or infrequentlythey experiencedsomething. I certainly had to be satisfiedwith appro)*ations and tried to develop a 'sense!,based on the entirety of what a woman said, how often or long ago somethingmay havehappened. I was satisfiedwith this, partly because therewas no other option, and partly becauseI was trying to gain an insight into the womaiYs own understandingof her experience,and so the detailsof when and how often something may havehappened were not alwaysrelevant anyway.
Rapport
The literature on the methodologyof interviewingpeople with learning disabilitiesalso deals with ethical issuesand building rapport. Atkinson (1989) and Booth and Booth (1994) both emphasisethe need to developgood rapportwith intervieweeswith learning disabilities.In these studies subjectswere interviewed in their own homes (sometimesmentioned in the generalliterature on interviewingas havinggreat significancein itself as a way of establishing rapport eg KennedyBergen 1993).Atkinson placesa lot of importanceon the informality of the interview, with the researcherbehaving as a guest eg always taking a gift for the interviewee(flowers, cake etc), complimentingthe persotfshouse, photographs, ornaments. Booth andBooth nevervisited any of their intervieweescarrying briefcases or clipboardsand tried hard not be associatedin the mindsof their subjectswith representativesof any statutory agencies.This was becausemany of their subjects,like other parentswith leamingdisabilities, had had tenseand difflcult relationshipswith professionalsinvolved in child protection work (Booth and Booth 1995).However, they recognisedthe difficultiesinherent in this; as middle 25 classpeople working with predorninantlyworking classparents, they felt conspicuousby their accents,clothes, cars etc.
My situationwas different in that I was never seeinganyone just for researchpurposes. All interviewswere carriedout in my role as sex educatorand therefore I was clearlyidentified as a worker in the serviceand no attemptwas madeto disguisethis fact. Most of my interviews were conductedin the office / counsellingroom that all other sex educationsessions took placein, rather than the persorfsown home. Whilst this may have lent the interviewsa more formal air, the reality of working in the homesof many peoplewith leamingdisabilities must be recognised.All exceptone of my interviewees( in hospital and the community) lived in sharedaccommodation and in order to have a strictly private conversation,often the only availableplace was the woman's bedroom. As people often do not have chairs in their bedroom,in effect this meansboth researcherand interviewee,sitting on the bed to discuss sexualmatters. This shiftsthe atmospherefrom the informal to the intimate.Whilst it did not appearto be an actualproblem in any of the interviews(or indeedin my wider counsellingand educationalwork with women with learningdisabilities) it hasnevertheless always felt to me to be inappropriateand I haveavoided it where possible.
Wherever the interview took place, I always made consciousefforts to create an informal atmosphere.Women were always offered tea or coffee and biscuits: this offering of refreshmentsis particularlyimportant, as it is a way of signifying this is intendedto be an informal and friendly experience.It distinguishesthe sessionfrom other kinds of help people might receivein services(doctors, psychologists, teachers etc do not, to my knowledge,offer people cups of tea in their offices or classrooms).As a gesture,it symbofisesthe fact that I wish to give somethingto the women as well as get somethingfrom them. The fact that the offer of refreshmentswas never,ever, refused also indicates its importance.Likewise, whereI did interview women in their own homes,I alwaysaccepted the offer of a drink, evenif I did not want one. It is interestingto note however, that women did not usually offer me any refreshments,unless they were prompted by staff to do so. There is no way of knowing whether this reflected an uncertaintyon their part about the nature of our relationship,a generallack of socialskills or the fact that where they lived did not really feel like their own have felt like homes- certainlythe women I interviewedon hospital wards would not they 26
could, and may well not havebeen allowed to, wander into the kitchen and put the kettle on wheneverthey felt like it.
Another way I tried to createan informal atmospherewas to allow the women to smokein the office, when they askedfor permissionto do so. Clearlythe fact that I Wasin a positionto allow them to smokeindicates where the power Iay.' However, I personallydislike smoking and object to being in a small room with a smoker and I would usuallytell the women that I did not like it. They almostalways went aheadand smokedanyway, which pleasedme in the sensethat I took it as a sign that they felt they had somecontrol of the situationand were not behavingin a way to pleaseme. I alwayswore casualclothes to interview the women (which againclearly distinguishedme from the doctorsor psychologists)and spoketo the womenin a way which I felt was friendly, informal and on respectful and inclusive terms. The only exceptionsto this were the few occasionswhen one or two women behavedin ways which I consideredto be sociallyand personallyunacceptable, such as shoutingangrily at me (seep42 for a discussionon dealingwith difficult interviewsituations).
The Booths (1994), like many feminist researchers(eg Oakley 1981, Phoenix 1994) emphasisethe needfor researchersto be preparedto answerpersonal questions as well as ask them. Ferrarotti (1981) has stated that if researcherswant intimate knowledge from intervieweesthen the trade-off is to be reciprocallyknown just as thoroughly.This may be so in theory, but I would suggestit would take particularlyconfident research subjects to ask as much of the researcher,as is askedof them. Although I was preparedto, and in fact always did, answer any personalquestions put to me by the women I interviewed,in reality few personal questions were asked. Additionally at the end of every interview, I openly acknowledgedthe one-sidednessof the situationie that I hadasked them lots of questionsand explicitly offered eachwoman an opportunityto ask me anythingshe liked. This opportunity was almostalways declined, indicating either that they were not curiousabout my personalor sexuallife or that, despitemy effortsto createan atmosphereof equality,they did not feel able to ask me suchthings asI had askedthem. 27
Anonymityand confidentiality onymity and confidentiality are obviouslyas importantfor peoplewith learningdisabilities as for any other researchsubjects, but these can be difficult to explain. With regardsto anonymity,people need to know that their namesand any other identifying detailswill not be usedin the disseminationof the researchfindings. But for peoplewho do not read at all, or if they do, certainlydo not read, or haveany awarenessthat other people might read, the kinds of material researchfindings are likely to be reported in 6ourrials, non-fiction books, conferencereports), they may have very little idea what the researcheris actually talking about.Confidentiality can be easierto explain,as it can be relatedmore closelyand concretely to the individual'ssituation ie the researchercan reassuresomeone by using actual people's names,that their keyworker,their fellow residents,their sexualpartner, will not find out what have they said.Wyngaarden (1981) gives a clever exampleof a researcherdrawing a map of the country to show how far away the researcherwas going with the researchmaterial and that no-oneclose to the intervieweewould seeit.
important An point to make regardingconfidentiality is that researchershave to be clear themselveswhat they will keep confidentialand what they will not and this is not alwaysan decision. easy The more personaland sensitivethe topic, the more blurred the boundariesmay become,but evenresearchers who interviewpeople about what they might considerrelatively safe topics can find themselvesin difficulty over confidentiality.For example,a researcher askingpeople with learningdisabilities about their preferredtype of accommodation,could quite easilyhear from respondentsthat they did not like their group home becausethey were being abusedthere. The researcherwould haveto decidewhether to act on that information (preferablywith the co-operationof the individualwho had disclosedit, but perhapswithout it) or whetherto merelyrecord it as an interestingresearch finding.
Booth andBooth, whilst acknowledgingthe stressfor the researcherwhen they hearstories of individualsuffering, assert'our position is that confidentialitymust be upheld (1994:40). They go on to say that no researchershould be expectedto bearthis burden aloneand describethe 'referencegroup' they set up for support.Researchers would use this group to anonymously presentethically difficult or distressinginformation that they had heardin their interviews.This seemsa very appropriate course of action, although the fact that such information was presentedanonymously to the referencegroup suggeststhat it was neverintended that action 28
might be taken.This still leavesthe lone researcherwith the burdenof knowing exactlywhich individualwas suffering.The Booths relate that they had to listen to intervieweestalk about suchdistressing experiences as rape, incest and other child abuse.I assumethat this refersto adult intervieweesdescribing their own past experiencesof suchabuse and am left wondering what would havehappened if one of their interviewees,inadvertently or otherwise,revealed they were currently abusingtheir own child. This is by no meansbeyond the realms of possibility and surely would have challengedthe Booths' assertion of always upholding confidentiality.
My position with regardsto this aspect of researchwas somewhat different from other people!s, in that my researchwas carried out in the context of providing a sex education serviceto the women,who had beenreferred to me for that purpose.As the majority of the interviewswere carriedout under the auspicesof the Sex EducationTeam, I worked to the acceptedconfidentiality policy of that service.(As I hadbeen a founder memberof the team,I was well acquaintedwith the policy.) For those interviewsnot carried out under the umbrella of that team, I worked to the sameprinciples anyway. This meantthat the permissionof all peoplewith learningdisabilities was askedto feedbacka limited amountof informationto key membersof st4 in order that ongoing support could be provided after the short term interventionof sex educationwas over. If individualsgave their permissionfor this (which in my broad experiencehappened in almost all circumstances)then it was agreedwith them which named membersof staff the information would be shared with. If they refused permissionfor this sharing of personal information, they would be offered a completely confidential service. These, then, were the confidentiality arrangementsI made with the women I interviewedfor this study. However, it is worth noting that even if I had agreed completeconfidentiality, there are circumstancesin which I would have been preparedto breakit eg if I was given reasonto believethat the woman herselýor anothernamed person, was in dangerof imminentand seriousharm. Breaking confidentialityin this way may well lead to the breakdownof trust in, and thereforethe end to, the researchand /or therapeutic relationship,but that would have to be acceptedas the price to be paid: it is, as McLeod states, 'the basic moral imperative to respect and prevent harm to researchparticipants! (1994:172). 29
Informed cotisent Despitethe importanceof it for research,there is little in the literatureon interviewingpeople with learning disabilitieson the issue of obtaining informed consent.Most commonly (eg. Wyngaarden1981, Atkinson 1989, Booth and Booth 1994) there are descriptionsof the researchproject being explainedand peoplewith learningdisabilities simply being asked,by a memberof staff alreadyknown to them, if they would like to participate.This is the most obviouscourse of actionand indeed, it is hard to think of a better alternative.Nevertheless it is a flawed approach for a number of reasons: firstly, the commonly recognisedgeneral complianceand acquiescenceof many people with learningdisabilities would lead them to consentrather than declinein most instances;secondly, being askedto participatein research by a known (and presumablytrusted) memberof staff may well increasetheir tendencyto consent(although interestingly the Booths concludethe opposite);and thirdly, it assumesthat, through a brief and simpledescription of the researchproject, people with learningdisabilities, usuallyunfamiliar with the conceptand activitiesof research,will have sufficientgrasp of the information to really know what they are consentingto. It is my contention,and I have not comeacross this exploredanywhere in the literature,that it is onething to consentto the face- to-face aspectsof researchie consentto talking to an individual researcher,and it is quite anotherto consentto the hidden,or behind-the-scenes,aspects of researchie the researcher going away with your answers,analysing them, coming to conclusionsabout you and your situation (which you may not even understand,much less agree with) and then informing others what they have discoveredabout you and people like you. Obviously the more significant the learning disability, the less insight people are going to have, or be able to develop,about the hiddenaspects of research.The Booths, for example,working with more able people, observedthat 'peoplewere genuinely engagedby the idea that others might benefitfrom their experience.Perhaps, too, somewere flatteredby the prospectof featuringin a book' (1994:29). One of my interviewees(one ot if not the mostýintellectually able) also had a good insight into what I was trying to achievewith my researchand was keen to help others by telling me her experiences.Most of the other interviewees,I felt, had much less insight into why I was talking to them and what I was going to do with the informationthey gaveme. I explained,as carefullyand simply asI could, that fir-stlyit was so that I could learn more about how women with learningdisabilities experienced their sexuallives, and secondly once I had leamed more, I wanted to help other people understandand so would talk to people and write about what I had learned.This was so that we would then be able to give 30 womenbetter help andsupport with their relationshipsand with sex.Explained in this way, all the women I asked to participateagreed, although for the reasonsdescribed above and becauseof their generallack of familiaritywith the written word, how professionalsand staff are educated,how servicesoperate etc, I would questionwhether this amountsto genuinely informed consent.Homan is one of the very few other writers who hasprovided a critique of the way the principleof obtaininginformed consent is usuallyput into practice,especially with subjectswhose ability to understandis compromised:
A[n] assumptionis that consentingsubjects have a sufficient awarenessof what they disclosing The here differential are .... point we make refers rather to a vision of the socialresearcher and participants. The subjectmay havecontrol over the releaseof raw data,but the researcherattaches a significanceto thesethat untrainedsubjects may not This differentialintellectual is apprehend... capacity not confined to the use of children as subjects.(1991: 92)
Perhapsa more controversialquestion to ask, is whether genuinelyinformed consentfor the whole researchprocess is actuallynecessary. Clearly people need to give consentto those partsof the researchprocess they canunderstand and havesome control over ie. meetingand talking to the researcher,being recordedon tape, only answeringcertain questions.For the more hidden and longer term aspectsof the research,which many people are unlikely to understandand have little or no control over, three possible courses of action present themselves.Firstly, researcherscould invest much more time and effort in describingand demonstratingin as concretea way as possible,exactly what it is people are being askedto consentto. Secondly,people with learningdisabilities themselves could be fully involvedin all stagesof the researchdesign, data collection and analysis and dissemination(Townsley 1995). Thirdly, it could be acceptedthat somepeople with leamingdisabilities are not in a positionto give infon-nedconsent and so to developethical practiceto proceed in the absenceof this. Theseare not mutuallyexclusive options and much more work needsto be donein this whole area,as all options involve a lot more time and effort for researchers.But all seemlike more honeststrategies than assuming,on the basisof a few words of explanation,that peoplewith intellectuallimitations and little accessto the world of ideas,are giving their consideredand informedconsent to the whole of a complexresearch process.
As well as creatingmore work for researchers,such an approachwould also involve a shift in perspectiveamongst many people who sit on researchethics committees. My own experience and that of other researcherswho havetried to problematisethe notion of informedconsent 31
(seeBrown andThompson forthcoming (b)) is that ethicscomn-dttees find this hard to take on board.Typically they want assurancesthat informedconsent will be obtainedand they want to seeevidence of consent,ideally by a signedconsent form. They are not easilyconvinced that such evidenceof consent is often meaningless.For this research I went to two ethics comn-dttees,the first (at the NHS Trust) for permissionto proceed(where no particularissue was madeabout informed consent)and the second(at my own departmentat the University) for general ethical guidance.This second committee recommendedthat all the women I interviewedshould sign a consentform. I arguedagainst this on the grounds that a) manyof the women did not read well or at all and so it would be patronisingto ask them to sign a pieceof paperwhen they did not know exactlywhat was written on it; and b) it would have been extremelyeasy for me to get them to sign the form (or indeed anythingelse for that matter),given the perceivedpower and authorityL or anyonein my position, had. Although the ethicscommittee was sympatheticto (ratherthan totally convincedby) my argumentthat evidenceof consentdoes not necessarilymean genuinely and freely given informed consent (Roman describesthe signingof consentforms by subjectswho do not fully understandas a 'thinly disguisedindemnity principle! (1991: 93)), they were neverthelessadamant that evidence was necessary.We eventually agreed on a compromise,whereby I would record the conversationI had with eachwoman, in which I would explainthe researchproject and her consentto participatewould be recorded.However, on reflection,I was not happywith the compromisefor two main reasons.Firstly, all the women were assuredby me, when I was seekingtheir permissionto usethe tape recorder,that I would neverallow anyoneelse to hear the tape and in fact, that I would not keep the recordingafter transcription.I felt that to say that one part of the tape would be treated differentlyto the rest would createconfusion and possiblybe anxiety-provoking.Secondly, given that I believe, as other researchersdo (eg Booth and Booth 1994) that permissionto record someone'svoice must alwaysbe gained everytime the tape recorder is used)I could not quite work out the logistics of how I was meantto switch on the tape recorderto record the discussionin which I was to describethe research,before the person had agreedto take part in it. In the event becausethe ethics committee'srecommendation (which was not a conditionfor the researchto proceed),came afterI had alreadyinterviewed 15 women (the committeenot being in existenceprior to that), I decidenot to act on it for the remainingtwo women,because of the complicationsdescribed above. 32
Methods
Choosinga researchstrateSD, The researchmethod I chosefor this study was that of the sen-d-structuredin depth interview. The reasonfor that choicewas that I did not considerany other researchmethod to be as suitable.Based on my prior experiencein the field and on my MA research,I was starting from the premisethat the only people who can tell a researcherhow they experiencetheir sexualfives are the individualsthemselves; in the caseof women with learning disabilities, other people such as staff or carersoflen simply do not know. Thereforeit was clear that I would need a form of enquiry which went directly to the individuals concerned. Questionnaires,a common form of enquiry into explicitly sexual matters (eg I-Ete 1976, Quilliarn 1994),would not havebeen suitable because of the literacy problemsfaced by most peoplewith learningdisabilities. This meantmy researchhad to involve my taUdngdirectly to womenwith learningdisabilities and the optionswere to do this on a group or individualbasis. I had considerableexperience in facilitating sex educationgroups for women with learning disabilitiesand had observedthat generallythe level of discussionwas at a more superficial level than my one-to-one sessionswith women of similar abilities, who had had similar experiences.There is a suggestionthat using focus groupscan facilitate discussionthat might be inhibitedin the more intensesituation of one-to-onework (Thompson1996), but, although this soundsentirely feasible, there is, as yet, little evidenceto substantiatethis when discussing very personalmatters with peoplewith learningdisabilities. Therefore I felt that to maximise the chancesof the women feeling comfortable enough to be open and honest, individual interviewswould be the most appropriateresearch method.
I rejectedthe format of highly structuredinterviews, because they restrict the interviewerto pre-setquestions and do not allow for flexibility and follow-up discussion.Once againbased on my prior work and academicexperience, I knew sucha format would not work well with people 'with learning disabilities.It is necessaryto adapt one!s language and sentence construction with different people with learning disabilities,depending on their levels of intellectualability and communicationsIdlls. It would be impossibleto construct one set of questionsthat would suit everybody:the questionswould inevitablybe too complexfor some andpatronisingly simple for others. - 33
Just as highly structuredinterviews were judged to be inappropriate,so were completely unstructured ones. As explained earlier, open-ended questions often do not facilitate discussionamongst people with lean-dngdisabilities, who tend to give short answersand wait for the next questionor not answerat all. For examplein this research,one generalopen- endedquestion such as 'can you tell me about your sexual experiences?' would very likely elicit no response.This is not merely becausemy respondentshad learningdisabilities, but becausesex is a difficult thing for most peopleto talk about freely and at length.
Semi-structuredinterviews
It therefore seemedclear to me that semi-structuredin-depth interviews were the most appropriateform of enquiry.The interviewshad to be in-depth,because time is necessaryfor both parties(but particularlythe respondents)to developtrust and rapport. When the subject matter is as highly personaland essentiallyprivate as an individual'ssexual experiences, then brief or superficialinvestigations will not do. Another important reasonfor choosingthe in-depth semi-structuredinterview related to the overall context of my role with the women. The semi-structuredinterview most closely matchedthe style of work I was alreadydoing with the women ie individualeducational and counsellingsessions on a broad range of sexuality issues.In fact I made every effort to attemptto makethe activeresearch phase of my work as similar as possibleto the rest of the time we spenttogether. Aside from obvious advantagesof consistencyof approach,this was an ethical decision,designed to causeminimal disruption to any woman who might want to decidehalf way through the researchinterviews that she no longer wished to take part. She could then have continuedto receiveeducation and counsellingfrom me without any abrupt switch in my manneror support. This happenedin one caseduring this research.The only discernibledifference between those sessionsthat counted as researchand those which did not, was the use of the tape recorderfor the researchsessions. 17his was a small dictaphone- type machine,that was unobtrusiveand which the women did not seemto feel inhibited by. This assessmentis obviouslyfrom my perspectiveas researcher,but I would be surprisedif the women themselvesfelt differently.
I did not imposeany overall limit on the amountof time I spent Aritheach woman, although each sessionwas limited to a maximumof one hour (becauseit is hard to concentratefor longer than this and also becauseof the practicalitiesof daily fife and work). There was no 34 artificial limit set on the numberof sessionsI had with eachwoman and in practiceit varied from approximatelysix to twent.y weekly sessions,although not all of thesewould havebeen the interviews I used for researchpurposes. Clearly, working in this way is very time consumingand would thereforebe seenby someresearchers as a disadvantage.But from my point of view, I felt it would havebeen counter-productive, as well as unethical,to try to rush the women. Somepeople with learningdisabilities need a lot of time to think and speakand they deserveto be given that time and opportunity. Other people with learningdisabilities speaka great deal, sometimesvery quickly, in what seemsquite a compulsiveway. A lot of what they have to say seems,at first hearing, not to be very relevant to the topic of conversation.But sometimesit is and time needsto be spent 'sifting through!what is not relevantor important. Other people may talk in a way that is quite repetitive,but it is still important to listen to them carefully, repetitive and/ or echolafic speechby people with learningdisabilities may not be becausethey cannothelp it (as is often assumed)but because they aretrying to say somethingimportant and no-one is listening(Sinason"1994).
I madeefforts to be true to the principlesof feministresearch methodology I mentionedearlier by treating my respondentsas women with interestingand important things to say and not merely as sources of researchmaterial with whom contact would ceaseonce sufficient materialhad been generated.But obviously there were limits: however much they felt they hadto say,the women could not go on taUdngforever. I usedmy feelingsas a guidewhen to intervene;if a woman was taUdngat great length about topics not relatedto the researchor my broaderwork agenda,I did try to intervene- either to stop her talking altogether(so I could get a chanceto saysomething) or to bring her back to the topic in question.Most of the time this was not a problem, althoughon one occasionit was; at one point in an interview, one woman got engrossedin telling a story of interminablelength and simplywould not stop talking, despitemy pleas for her to do so. In the end, I had to threatento leave the room beforeshe managed to stop herself
Another potential disadvantageof my chosenresearch method is that it does rely almost entirely on first hand accountsfrom those involved and therefore relies for its validity on peoplebeing truthful. Other researcherson sexualmatters have had to face the questionof whether their respondentsare telling the truth: Kinsey (1948) felt that an experienced researcherwould be able to tell from the way a respondentspoke and from their body 35 languagewhether they were being truthful. He also checkedthe consistencyof interviews taken at different points in time and cross-checkedaccounts given by spouses;Schaefer (1973) reliedon a convictionthat as peoplevoluntarily taking part in researcNsubjects had no needto Heabout or distort their accounts.Other researcherseg Me (1976) do not mention the issue.
There is no reasonto think that people with learningdisabilities are likely to be any less truthful than other people. But sexuality is an issue that often causespeople anxiety and confusionand it is aloaded' subjectin that it is valueladen and this leadsmany people to want to give a certain impressionof themselvesand others. However, rather than dismissing individuals'testimonies as inherentlyunreliable on thosegrounds, my approachwas to take answersto individualquestions in the context of the whole accountand build up a picture of what is happeningfor that individual. For instancewhen enquiring into sexual abuse, researchersneed to be aware that some women (with and without learning disabilities)are reluctantto admit that they havebeen abusedor that menthey had meanýingfillrelationships with would perpetrateabuse against them (Kelly andRadford 1996).Therefore the somewhat stark questions'have you ever beenabusedT or 'hasanyone ever forced you to do something sexual you didn't want to do?' may well elicit the answer 'no'. However supplementary questionssuch as what kind of sex the woman Res and dislikesand what kind of sex she actuallyhas on a regularbasis, can be very revealing.This is also true of questionsabout who makesthe decisionsabout sex, who wants it the mostýwho likes it the most, who experiences pleasureor pain fi7omwhich activities. These questionsallow the researcherto build up a detailedpicture and can tap into experiencesand feelingsthat are otherwiseeasily overlooked. As I explainedearlier I took time to reflect back to the women the things they had said, to check with them that I had receivedtheir informationaccurately. This is not quite what is meant in the literature by 'respondentvalidation! (Silverman 1993), as this seemsto imply taking the whole body of one!s findings and analysisback to the researchsubjects for their critical reflection.This is not somethingI attemptedwith the womenin this study, for practical and methodologicalreasons. larn not aware of exampleswhere this had happenedwith peoplewith learningdisabilities, although the smallbut growing numberof researchprojects which involve people with learning disabilitiesat all stages(Young 1996) stand the most chanceof doing this successfully. 36
In addition to the possibility that certain individuals might not be truthful, or might be forgetflil, there is also the complexmatter of what it is possibleor sociallyacceptable to say about sexualmatters. It is not a simplequestion of peopletelling the truth or untruths.Rather there are questionsabout what does the truth mean in relation to 'telling sexual stories' (Plummer1995). IndividuaPs experiences are moderatedthrough public and highly gendered discoursesabout what is and what is not acceptableand appropriate.The lack ot and need for, positive sexualdiscourses for women is raisedin chapterseven.
However, it would not be true to say that aff my informationfor this researchcame directly from the women themselves,although certainly most of it did. I was also able to use the knowledgeI built up over a numberof yearsabout the environmentsthe women lived in and the other peoplethey associatedwith. It should be acknowledgedthat I did not have equal levels of knowledgeabout all the different environmentsthe women were in; for instanceI knew more aboutthe hospitaland group home settings(which appliedto 15 of the women), than about the situationsof womenwho lived or had lived in their own or family homes(two women). This knowledgewas often useful to substantiateor (occasionally)cast doubt on somethinga woman had said. Triangulation,the comparisonof data for corroboration,is commonlycited in the literature as being an appropriateway to attempt to validatefindings (Silverman1993, McLeod 1994).In particularit is noted that to be an 'insideeor 'empirically literate! (Roseneil 1993:189) ie already familiar with a system or environment,gives a researchera considerableadvantage in that one has a built-in truth check!(Riemer 1977:474 cited in Roseneil1993)
Sometimesthe fact that I had broaderknowledge of the circumstancesof the womeds lives, plus all my other experienceof worldng with a much larger group of women with learning disabilitieson sexualityissues, meant that I could makethe inferencesthat ethnographershave to make (see p.7). For examplein this study, one woman told me that she had stayedwith various non-disabledmen in their flats when she would otherwise have been temporarily homeless.Although she did not say it directly and may not even have realisedit on a consciouslevel, I inferred from other things she said about the men that they probably expectedsexual favours in return for providing a roof over her head.I felt confidentto make this inferenceon the basisthat my wider experiencehad shown me many examplesof non- disabledmen sexuallyexploiting women with learningdisabilities in situationslike this and no 37
examplesof actsof generosityand kindness, expecting nothing in return. Of course,I haveto, and do, allow for the fact that my inferencesmay be wrong. I have sought to presentmy findingsin such a way that thosewho wish to take issuewith my inferencesand conclusions candemonstrate how andwhy I amwrong.
Sample
The women whose views are representedin this study were the first seventeenwomen referredto me for sex education/counsellingwho fitted the criteria I had set for inclusion. Thesecriteria were that: the womenhad to havehad somesexual experience with at leastone other person; they had to be verbally articulate enough to be able to talk about.these experiences;they had to agree to discusstheir experienceswith me. There were no other criteria and althoughI had hopedto interview twenty women, this was unrealisticwithin the time frame I had set myselfand I decidedthat, due to the amountand richnessof the material I had collected,I could reasonablystop at seventeen.All interviewstook placebetween the endof 1992 andthe beginningof 1996.
Data analysis Becauseof the natureof the data and the investigation,a multi- stagednarrative analysis was undertaken(Stevens 1994). The first stagewas to transcribeeach interview, then read and re- readeach one separatelyuntil I was familiarwith eachwoman, what shehad saidand how she hadsaid it. For the secondstage, I reducedthe databy producinga summaryof eachwom&s accountýdrawing out key points and any significantfeatures of her telling of it. In the third stageI went back to the original dataset and reorganisedit so that for eachquestion I had all seventeenwomerfs answersmapped out together.I was then able to broadly categorisethe responsesonto a chart, a separateone for eachquestion. I thentook eachcategory in turn and returned to the data to interpret what the women had said and used their own words to explainor strengthenparticular points and / or the overallpicture. The fourth stageof analysis involvedexamining basic themes, patterns of sharedexperience and diversity.
This method of data analysis,sometimes referred to as the 'editing style!is consideredto be particularly appropriate when the goal of the research is 'subjective understanding, exploration, and/or generation of new insights / hypothesesand when scant knowledge alreadyvdsts'Wer and Crabtree1992: 20). As suchit seemedentirely suited to this research 38 project. It is a lengthyand thereforetime consumingmethod of data analysisand for all the researcher'sefforts, the end result may appearrelatively straightforward.However this is at least part of the point of it: Tarts are stnmg together to make new wholes - simplicity is sought beneaththe complexity' (Reinharz 1983:182). The alternative would be to give a purely quantitativeaccount of qualitativedata or to leavethe readeroverwhelmed with huge amounts of data to examine and interpret for themselves.As I have criticised I-Iite!s sexologicalresearch on both theseaccounts (see p. 54) this was clearly somethingI wishedto avoid myself
Reciprocityand identification As a feministresearcher, I havereflected on the needfor somereciprocity in the exchangeof information with researchsubjects. As I indicatedearlier, relatively few personalquestions were askedof me by the women I interviewed.But somewere and I was alwaysprepared to answerany questionsthe women put to me. I was occasionallyasked whether I engagedin specificsexual activities and this was a soberingreminder that evenwhen it is your job to talk and write about sex all day, as n-dnehas been for severalyears now, it is quite a different matterto talk aboutyour own sex fife. More usually,however, the women askedfor personal informationthat seemedto help them 'place!me as a woman (Finch 1984,Cotterill 1992)eg whetherI was marriedor living with someone,whether I had childrenetc. I am not marriedor living with a partnerand I do not havechildren, but I do haveoccasional sexual relationships with men. This meantthat my sexuallifestyle was similar to theirs in somerespects. I realise, of course,that I am vastly more privileged in many ways, but I was closer to them in this respectthan many of the other non-disabledwomen they would have come into contactwith eg staff and carers.Most of theseother women would have been manied/cohabitin&most with children and even if they were not, these assumptionsoften get made and go unchallenged.Whether or not the women I interviewedfelt more inclined to open up to me becausethey felt we may havehad thingsin common,is hardto tell. But it did seemto be the casethat with somewomen, at least,revealing personal information about myseT,could lead to the woman identifying with me or me with her and this definitely led to a feeling of connectionbetween us. For example,one woman saidthat shefound herself'giving in! to men sexually,that is having sex with them when she did not really feel like it herselýbecause to assertherself would risk causing a fuss, having a row. She was unhappy about this, but neverthelessfound herselfdoing it over and over again.To let her know that I understood 39 what shemeant, I saidthat I had donethe samething myselfand thought that probablylots of women had. The following discussionno longer focusedon her as an individual,but was an inclusivediscussion about women as'we! andus'. At other times, however, revealingpersonal information could have the opposite effect and leada woman to positionme asbeing Merent from her, asthe following exchangeshows:
MC: Has any man ever askedyou to haveit up the anus? NM: No MC: If they did, would you do it? NM: No, I don't think so MC: So you'renot soft then,not like me AM: Well, that's not always true, I have done things I wish I hadn't, but I do try to stand up for myselEIt's not easythough.
In my last few sentenceshere, I try to encouragesome identificationbetween us, not least becauseit was true, but also becauseI did not want to risk her putting herselfdown, by seeing me as a womanwho was necessarilymore skilled or assertive.
In both my researchinterviews and my wider work experience,I have tried to let the women know that I am 'on their side!.Finch (1984) suggeststhis is consistentwith major traditionsin sociologicalresearch. I do have a genuine feeling of concernfor, and solidarity with, the women with learning disabilitieswith whom I work. Therefore,it is not an attitude I felt obliged to adopt for the purposesof gaining accessto the womerfs fives in order to do the research.Because of this, conducting the researchhas had an emotional impact on me (Moran-Ellis 1996).1 haveoften felt great sadnessand rageat what manyof the women have been through. Occasionallythere have been momentsof humour and joy, but these have largelybeen as a result of the personalinteraction between the women and myself,rather than my reactionsto what they havetold me about their fives.As will becomeapparent in the later chapters,the overall tone of what the women have had to say about their sexual fives is negativeand depressing.As the researcherI havebeen enmeshed in this rathergrim picturefor a numberof yearsand it hasdepressed me too. However it hasnot alwaysbeen the predictable thingsthat haveupset me most: one of the worst momentsfor me was beingasked to sign the plaster cast of a woman who had broken her arm and seeingthe words 'retard!and 'spastic! written there by non-disabledstudents at her college,people she considered to be her friends. Realisinglater that I feli more upset about this small act of cruelty, than when other women told me about beingraped, I then felt guilty at havinggot my priorities all wrong. It must also 40 be saidthat along with the feelingsof sadness,I have taken inspirationfrom the strengthand resilienceof many of the women and this has helped me to retain a senseof balanceand perspective.
It is often stated,and generally accepted as beingtrue, that to be activelyinvolved in sexuality or sexual health work, workers have to be comfortable with their own sexuality (see for exampleKrajicek 1982,Lee 1996).1 havenever been exactlysure what is meantby this and nobodyever seemsto elaborateon it. All I can say for myselfis that I am in no doubt that my sexualityaffects the work I do andthe work I do affectsmy sexuality.As I reflectedin my MA research(McCarthy 1991),like many other women, with and without learningdisabilities, I have had both positive and negativesexual experienceswith men. These are not just things that happento the subjectsof my research,they are a part of my fife and I do not pretendto be objectiveor neutral in any discussionabout heterosexualrelations. What I have done in this researchis different a lot of other researchabout non-sexualtopics and difIerent from -from much of the researchmy colleaguesin the learningdisability field are engagedin, for example investigatinghow peoplewith learningdisabilities feel about their residentialor day services. Researchersof such topics rarely have any personalexperiences of their own to compare, contrastor reflect on.
My influenceas a researcher To completethis sectionon methods,I finally haveto reflect on what effect I would havehad on the women I interviewed- both in terms of the factors mentionedabove and also more broadly. The questionneeds to be posed, as to how much I would have influencedthem, becauseas a memberof staff (actualor perceived)I would clearlybe in a position of power. Also becauseof my informal approachin terms of the way I dressed,the way I spoke and treatedthe women, I know that coming to seeme was a different experiencefor the women than, for example, being interviewed or counselled by their consultant psychiatrist or psychologist.The women themselvessaid as much and from the few such interviewswith other professionalswhich I had directly observed,I knew this to be the case.The women I interviewed,with one or two exceptions,seemed to like me very much and none was (I believe)afi-aid that I night usemy power within the system(s)to affectthem adversely. 41
Given the positive relationshipthat usually existedbetween us, then, it would make senseto assumethat the women wanted to pleaserather than offend me with their responsesto my questions.Therefore the potential existed, as in any such relationship,that I could get the responsesI was looking for fi7omthe women, rather than what they really felt or did. But for the women to give me what they consideredto be the 'right! response,they would have to work out first what I wanted to hear. What I wanted to hear was about happy, mutual, pleasurablesex fiveswhich contributedto the womens senseof well being.What I expe ctedto , hear(on the basisof my own prior work but alsothe vast body of feministknowledge on the area)was about a lot of negativeand abusivesexual experiences. The fact that I have heard what I expected to hear means I must question whether I asked (consciouslyor sub- consciously)leading questions to get the requiredanswers. Not surprisingly,I think I did not. I madeefforts not to ask what could be construedas leadingquestions and I restrainedmyself from expressingthe full horror of what I felt when the women describedabuse, although obviously expressingsympathy and understandingwhen appropriate.There were inevitably momentswhen I did give my own personalopinion on certain subjects,which could be interpretedas me trying to influencethe women, exceptthat I madesure I only gavethem my opinion, after they had given me theirs. For example, when discussingmerfs use of pornographywith one woman, I did tell her my views on thatýbut only after shehad told me hers first, so I would not be influencingwhat she had to say for the research. Similarly in a discussionwith anotherwoman on the reasonswhy menrape (see p148) I do give an opinion, but in responseto hers, not before it. Therefore,I am as confidentas I can be that I did not influencethe womens responsesto specificquestions as they were asked.However I haveno way of knowing whether any of the women might have alteredtheir views in line with n-dne over the longer term or indeedaltered their responsesto subsequentquestions, in fine with what they may haveimagined mine to be.
It is also important to note that, at certain times, both during the researchinterviews and during my other contactswith the women, I was actively trying to influencethem. After all, the researchinterviews were being conductedin the context of my being paid to provide a serviceto the women.I was meantto influencethem with regardsto recognisingthat they had choices,in helpingthem to becomemore assertive,in practisingsafer sex etc. I was not meant to, and do not believeI did, influencetheir individualsexual preferences or encouragethem to tell me things,positive or negative,which were not the case. 42
Mawging difficult s7tuations It would be true to saythat for the vast majority of the time I spentwith the seventeenwomen I interviewed, the processwas largely unproblematic.But there were also some difficult moments.In one session,when I was explainingto a womanwhat andwhere the clitoris was, shewanted me to check,there andthen, whethershe had one. I explainedI could not do that, as I was not a doctor or nurseand thereforewas not allowedto look at people'sbodies. She dismissedthis as a good enoughreason and continuedwith her pleasthat I check and started to undress.After muchprotesting on my part andinforming her that I would leavethe room if she undressed, she finally acceptedthat I could not do what she wanted. We agreedon a compromisewhereby I gaveher the sex educationpicture showingwhere the clitoris was, and sheagreed to examineherself in the bathroomlater, with the help of her femalekeyworker if necessary.In anothersession, a diffbrentwoman, who could be quite volatile, suddenlyturned her anger on me in a very personalway. She appearedto misinterpretsomething I said and completelylost her temperwith me, shoutingaggressively at me at the top of her voice for severalminutes. I tried to de-escalatethe situationby remainingcalm andfirm until shecooled down enoughfor me to explainthat I was not preparedto acceptsuch behaviour from her and I ended the session,making sure she understoodshe could come back again. When she returned the following week, she apologisedfor her outburst and it never happenedagain. Both the above situationswere momentswhen my wish to treat the women on respectful, equaland inclusiveterrns would havebeen temporarily suspended. My tone of voice andwhat I saidwould havebecome more authoritative,in an effort to gain somecontrol over a situation which looked like it might posea personalthreat or at the very leastwas decidedlyrisky.
Not all the difficult or unusualsituations were unpleasanthowever, some were just odd. When I was interviewing one woman, she suddenlystuck her arms out straight in a kind of crucifudonpose and held them there:
AM: Why have you got your arms out like that? TC: Becausel7ve got somesoreness AM: Are you going to keep them like that? TC: Yes. [Laughs]Might I wohl if you donl want me to AM: It's not that I don't want you to, but it doeslook a bit funny. [Both laugh] 43
At the risk of stigmatisingpeople with lean-dngdisabilities, it is hard to imagine simflar situationsto the ones describedabove happeningin researchinterviews with non-disabled people.However they could happenand thereforeany researcherwould do well to expectthe unexpectedand be prepared.
Conclusion
By choosingthe appropriateresearch method for the task andgetting the overall context right (ie offering counselling,support and advice where necessary),it hasbeen my experiencein this study that manywomen with learningdisabilities are able to give clear and coherentaccounts of their sexualfives; not only factual accountsof what happens,but also what they feel about what happensand what sensethey make of it. Often women with learningdisabilities do not have many opportunities to discuss sexual matters (see pl. 18). However, given time, encouragementand respect,I found that most of the women were wining to share their experiences,thoughts and feelings. Sensitive interviewing, in the context of offering adviceand support,can facilitate this. 44
CIUPTER THREE 1XIERATURE REVIEW
Perspectives on sexuality and sexual violence
In order to put my own work in context, I havereviewed the literature to gain insightsinto current and historical thinking on the subjects of sexuality and learning disability, both separatelyand together.In this chapterI will look first at a broad view of sexuality,before moving onto a more specificallyfeminist perspective on sexualityissues. Similarly in the next chapterI will look first at learningdisability issuesin a broad sense,then specificallyreview the specialistliterature on learningdisabilities and sexuality.
Perspectiveson sexuality. The traditionalWestern religious perspective on sexualitywas that it is basedon an impulseof the flesh,which resultedin, andfrom, humanity'sfall from grace.The sexualimpulse was seen as essentiallyevil in its natureand so powerful that it had to be kept under strict control. As Petras(1973) explains,this religioustradition inevitablyset up a dichotomybetween body and n-dnd,with the body the site of physicaldesire and corruption and the mind the centre of spiritualityand purity. Although religion has graduallylost its authority within manyWestern societies,some important features of this tradition canbe seepin other perspectives.
One of the most influential perspectiveson sexualityin the twentieth century has been the psychoanalyticalperspective. Freud's model sharesmany features with traditionalChristianity : sexualityis seenas a powerful instinct, opposedby its very nature to civilization. Society, through social relationships and restraints, must work to psychological1yrepress the individual'sinstincts. As Freud himself put it 'civilization is built upon the renunciationof instind (1979:34). However complete repressionof the sexual instinct was not the only mechanismand diverting or channellinginstincts into harmlessor otherwise productive pursuitswas alsothought necessarywithin this framework.
Another perspective,that of the people who were sometimeslabelled 'sexual radicals' like Wilhelm Reich, also looked at the interfacebetween sexuality and society,but cameto quite differentconclusions. Their model,sometimes called thetherapeutic truth! modelalso believed that sexualitywas a powerfWinstinct, but maintainedthat it was a fundamentallygood and healthy instinct. Rather than society or civilization being threatenedby sexuality,as in the 45
Freudianand Christianmodels, this model seessociety as the negativeforce, which distorts andrepresses a'naturaU. V good humanimpulse (Reich 1969).
Another variation on the theme of sexualityas a strong instinct is that propoundedby Sz-as (1980). Once againthe caseis madefor sexualityas a powerful biological drive - next to the needsfor water, food and sleep,the most powerful of humaninstincts. However, unlike the other perspectives,Sas believesthat neitherreleasing nor inhibiting the sexualdrive causes anygreat harm.
A quite different, and in fact totally opposing perspectiveis the sociological,or cultural learningmodel proposedby, amongstothers, Gagnon (1977) and Gagnonand Simon(1974). This is basedon the premisethat there is no sex drive or instinct, but that peoplelearn to be sexualin the sameway that they learn to be and do everythingelse. This learningprocess happensthrough what Gagnon and Simon call 'scripts'. Scripts involve both external, interpersonalfactors such as mutually sharedconventions and internal, intrapsychicfactors suchas motivation or arousal.Seen from this perspective,sex is no different from any other kind of behaviour and sexualfeelings no more powerful and uncontrollablethan any other Idnd of feelings.Gagnon (1977) arguesthat the specialstatus given to sex in societyis a self- fiMing prophesy;ie. people experiencesex as specialbecause they have been taught to believethat it is special.
More than any of the other perspectiveson sexualityit is this one which appealsmost to me. It makesmost senseto me intellectuallyand fits in with other valuesand beliefsI hold. In the context of my researchon the sexualityof women with learning disabilities,the conceptof scripts seemsto explainwhy so many women with learningdisabilities describe their sexual activity as physical/mechanical/matter-of-factencounters, rather than with any suggestionof the erotic/sexual.Gagnon suggests that for a sexualresponse, a person has to actively give sexualmeanings to the event/stimuliin question.People have to go through a processof learningthat certain things in certain contextsare meant to be sexual,before they become sexual.It is my contentionthat perhapsmany women with learningdisabilities either have not learnedsexual scripts and /or vital elementsof the scripts(eg. privacy, ability to fantasiseor transferknowledge or feelingsfrom one situationto another)may be missing.There is a fifll i dismssionof this in chaotersix. 46
This sociologicalperspective on sexuality maintainsthat sex is no more important than any other kind of behaviour,pointing out moreoverthat sexualactivity itself occupiesvery little of most people'stime and energy.In societiessuch as modemWestern societies sex itself aswell as sexualattractiveness and sexualfeelings are marketablecommodities. Consequently sex and sexualityare very visible featuresin society and therefore'assumean importancegreater than would otherwisebe the case.Within the context of my work with women with learning disabilities,these ideas also make sense - they are peoplewho tend to haveless access to, and who perhapsmake less sense oý overt sexualimagery. And, along with the elderly or people with physical disabilities,they are usually not'considered to be, nor are they publicly portrayedas, sexually attractive. It shouldnot comeas a surprisetherefore to find that - based on their own reportsand on my observationsand understanding - sex is not an importantpart of the fivesof most of the womenwith leamingdisabilities I havetalked to (seep 172
At its simplestsexology can be definedas the study of humansexual behaviour. But as most thingsrelating to sex are complexand controversial,we would not expectthe study of sexto be as straightforwardas the abovedefinition implies.Claims have been made that sexologyis 'impartial, empirical and in the manner of all sciences,non-judgemental' (Money 1988:6). However, there is in fact often little or no distinctionbetween merely studyingand reporting how peoplehave sex and advocatinghow they shouldhave sex: 'Sexology,then is not simply descriptive.It is at times profoundly prescriptive,telling us what we ought to be like, what makesus truly ourselvesandnormal" (Weeks 1991:74).
One of the ways sexologyhas successfully managed to be prescriptive,whilst presentingitself as scientific and objective, is becauseas a discipline it assumeda legitimacy through its associationswith acceptedinstitutions of power eg. the law, but more often medicine. Foucault (1990) has describedhow power can be exercisedthrough an interestin sexuality: definingand classifyingcategories of sexualinterest can leadto turning the sexualbehaviours and the people who carry them out into subjects for control. This is becausethese classificationsdo not go into a vacuum, but rather are absorbedby people and institutions who alreadyhold opinionsand prejudices.Sexology or ratherthe findings of sexologists,can 47
be used by others for political purposes,ie the developmentof new social or legal sanctions again.st thosebehaviours and peoplewho are seento be deviant.The clearestexample of this, which Weeks (1985,1989)has written extensivelyabout, is the developmentof the category liomosexual'.Prior to the secondhalf of the nineteenthcentury, having sex with a personof the samesex did not haveany great significanceto the way the personviewed themselvesor others.It did not make you a particular kind of personand the word 'homosexual!was not inventeduntil 1869 (by the HungarianBenkert von Kertbeny).However, with the growing scientificinterest at that time in diffierentiatingand classifyingthings, it was only a matter of time before the liomosexual'came to be seenas a distinct kind of person.Foucault described the process in the Mowing way: The sodomite had been a temporary aberration; the homosexualwas now a species'(1990: 43).
Influential sexologists Although there had always been religious treatiseson sexualmatters throughout history, it was not until the eighteenthcentury that secularwritings on sexualitystarted to appear,with Tissot's On Onania (a 1758 essaywarning of the dangersof masturbation) probably the most well known example.However, it was not until the last decadesof the nineteenthand the beginningof the twentiethcentury that the disciplineof sexologyreally developed.Ellis is generallycredited as being the major influential thinker and writer at this time. His work emphasisedthe importanceof researchingthe sexual fives of ordinary people and not just those of sexualoffenders, people in mentalasylums or therapy,as previouswork in the field had done.He soughtto measurenormal sexualbehaviour, because he believed(quite rightly) that you could not say what was abnormal- statisticallyor otherwise-until you knew what was normal.His consideredview on homosexuality,for example,was that it was a congenital condition and abnormalonly in the senseof being statisticallyrare. Ellis' work was rooted in, the his He and reflected, social and political movementsof time. was a strong supporterof eugenicsand supportedwomen's rights to equality,but only within certainlimits. Although he hasbeen credited as inventinga new kind of feminism,his work hasbeen strongly criticised by feminists,a point I shallreturn to later.
EWsdied in 1939,just asKinsey was beghu-dnghis sexologicalresearch, which was to become enormouslyinfluential, especially in the USA- As methodof researchwas to conduct large scalestatistical surveys ( of some 17,000people ) enquiringinto their sexualbehaviours. I-Es 48 particularareas of interestwere the sexualresponses of men, homosexuality,prostitution and premaritalsex on college campuses.Kinsey agreedwith Ellis' view of homosexualityas a normalvariation of humansexual development and he developedthe idea of a continuumof sexualbehaviour and proposedthe theory that there were no homosexual,heterosexual or bisexualpeople, only acts.Bisexuality therefore was a statisticalcombination of the numbers of heterosexualand homosexualacts any individual might have experienced.This approach hasbeen criticised because it ignoresthe obvious reality that people do label themselvesand others.
The work of Mastersand Johnsonfollows on from that of Kinsey from the late 1950'sto the 1970's.Masters was a gynaecologist(and Johnsonhis researchassistant) and their work beganstudying the physiologicaland anatomicalaspects of female sexualresponses. Unlike any of the other sex researchers(before or since) Masters and Johnson did direct observationalwork in their laboratories.Later their work focused on sexualdysfunctions in marriedcouples and later still they movedthe focus of their work to homosexuality.Although much of the focus in Masters and Johnson!s earlierwork was on women!s sexualresponses and their work was very influentialin highlightingthe greaterorgasmic capacities of women comparedto men,they too havebeen the subjectof much criticismby feminists.
I-Ete,the only woman to haveworked independentlyon sexologicalresearch, conducted large scalesurveys of sexualbehaviour in the 1970s.These took the form of written questionnaires, the majority of which were completed anonymously.Mte studied women!s and meds 100,000 distributedto sexualityseparately :a staggering questionnaireswere women , of which 3019 were returnedand analysed(IFEte 1976): 119,000questionnaires were distributed to men, of which 7,239 were returnedand analysed(I-Ete 1981). In the report on womerfs sexualitythere was an emphasison womeds experienceof masturbation,orgasm and womerfs sexual experienceswith men. There is also a very short section on lesbiansexuality. 11ite arguesthat her emphasison the more physicalside of wometfs sexuality, in particularwhat arouseswomen to orgasm,was necessaryas Ws has been so little understoodand so long suppressed'(1981: xiii). By contrast in her report on male sexuality she argues that the stimulationnecessary for maleorgasm is generallywell understoodand therefore her emphasis in this report was on how men feet about their sexuality and personal relationships (particularlywith women) andwhether they were happyand satisfiedwith their sexualfives. 49
Feminist cntiques of sexoloV Thereis a well documentedfeminist critique both of sexologyitself and of the major influential sexologists,whose work I have briefly outlined above.Both the theoreticalperspectives and practical aspects of sexological research have been criticised, as well as the damaging consequencesof it for women. Although a numberof feministshave written on this subject,it is radicalfeminists, most notablyJackson, who haveproduced the most extensivecritiques and on whosework I havedrawn most heavily(1983,1984,1987,1994).
Feministshave challengedthe central tenet of sexologyie. that it is a neutral and objective searchfor, and presentationof, the IrutW aboutsex. This hasbeen an importantchallenge, for as a twentieth century sciencesexology has had a legitimacyand statusthat has made its findings very influential, particularlywith regardsto womeds sexuality.As Jacksonhas so clearly documented sexology was just as biased and subjective as any other branch of scientificenquiry, if not more so (1984,1994).What cameto be presentedand acceptedas scientificfacts, were in fact reworked and strengthenedversions of patriarchalmyths about maleand femalesexuality, which feministshad long campaignedto destroy.I shall return to this point later. Not only was the contentof this sexologicalwork inherentlyanti-ferninist, but the timing and contextsof someof the most influentialsexological research eg. Ellis! work in the earlytwentieth century,was producedagainst the backgroundof, and actedas part of the backlashto, activefeminist campaigning on sexualmatters.
All the major sexologists,Ellis, Kinsey and the Mastersand Johnson team have been criticised for similar reasons,but there are also criticismsof their specificpieces of work- Taking the generalcriticisms firstý all the sexologistshave been accused by feministwriters of holding an essentialistmodel of sexuality with heterosexualitytaken as the (absolute)norm. Despite attempts by all the sexologists not to pathologise and stigmatise homosexuality and bisexuality,these still have been clearly marginalised.Also within heterosexuality,vaginal intercourseis given an absolute and inviolable priority - this has been called the 'coital imperative!(Jackson 1984: 44). All other kinds of sexualactivity are essentiallyregarded as preliminary(hence 'foreplay), optionalextras or substitutesfor times when vaginalintercourse was not possiblefor whateverreason. It was thought that engagementin theseother sexual 50
activities could affect the experience of vaginal intercourse itselý although there was disagreementabout how: Ellis believedthat 'excessive'masturbation in women could lead to an aversion to vaginal intercourse; and Kinsey believed that pre-marital petting and masturbationwere importantinsofar as they helpedavoid sexualmaladjustment in marriage.
The second feminist criticism common to all sexologistsis that they take 'as given, the particular form of male sexuafity that exists under male supremacy and attempt[s] to universaliseit, so that it becomesthe model of sexualityin general'(Jackson 1984: 45). Under this model - in which there is a total belief in the existenceof a sex drive or instinct- sexual energybuilds up over time and must be releasedone way or another.Allowance is madefor individualsto havedifferent amounts of sexualenergy and men are generallythought to have more than women. Individuals,especially men, are not thought to have full control over their sexualurges, a belief which leadsquickly to the removingof responsibilityfrom men for acts of sexualabuse and exploitation, coincidentally- or rathernot coincidentally- one of the main focusesof the feministstruggle.
It is Ellis' work in particular which has been criticised for turning men!s sexual violence towards women into an activity that was legitimate,normal and to be expected.He claimed that femalesof the human and all animal specieswere biologically programmedto show resistanceto males'sexual advances, but that they did not reallymean their show of resistance, for they wanted the malesto 'conquer'them. Men were biologically programmedto do this conquering,for which the use of force was, if not alwaysactually necessary,then certainly desirable.The experienceof physicalpain was consideredby Effis to be an integral part of women!s sexualpleasure:
Whilst in men it is possibleto trace a tendencyto inflict pain, or the simulacrum.of pain on the women they love, it is still easierto trace in women a delight in experiencingphysical pain when inflicted by a lover, and an eagernessto accept subjectionto his will. Such a tendency is certainlynormal (1936:89).
It is not difficult to see why feministsnow, and then, resentedEllie reputation as a pro- feminist championof womens rights. Although Ellis did support some rights for women, feministssuch as Jefrreyshave arguedthat his versionof feminismwas 'simply a glorification of motherhoodand a developmentof the diffferentbut equalideology' (1990:17). Ellis was 51
strongly opposedto radical and militant feministsof his own time, especiallythe Pankhursts andthe Womeds Socialand Political Union.
Kinsey'ssexological work has beencriticised by feministsfor the way in which he trivialises the extent and natureof sexualabuse against women, and girls in particular.For example,he was of the opinion that teenagegirls would commonly'cry rape!in order to avoid getting into trouble with their parentsfor stayingout late. With regardsto the sexualabuse of girls by adult men, his intentionappeared to be to gain his readers'sympathy for the men accusedof theseoffences and to seriouslyunderplay the effectsof suchabuse on the childrenconcerned:
in most instancesthe reportedflight was nearerto the level that children will show when they see insects,spiders, or objects againstwhich they havebeen adversely conditioned (1953: 121).
Another feminist criticism directedspecifically at Kinsey is that far from being a scientifically objectiveobserver of humansexual behaviour, his work revealsthat he was, in fact, deeply biased.As Dworý:in (1981) has pointed out, despitethe thousandsof peoplehe interviewed about their sexualbehaviour, Kinsey did not uncover any instancesof marital rape or any other abuse of women by their husbands.Yet he did manageto find and report 'several instancesof wives who havemurdered their husbandsbecause they insistedon mouth-genital contacts'(Kinsey 1948:578). Presentingsuch a biasedpicture of marital relationswould be laughablein the 1990s,but it is hard to believethat even in the late 1940sthese could have beenaccepted as valid researchfindings.
Masters and Johnsonhave been criticisedby feministsnot only for the sexological,research they did, but most of all for the use to which they put their findings. Urffike the other sexologists,Masters and Johnsondirectly appliedtheir findingsto the developmentof what cameto be known as 'sextherapy'. The theory and practiceof their model of sex therapyhas been hugely influential and still remains so with some sex therapists and psycho-sexual counsellorstoday. Masters and Johnsonbegan their researchby interviewing prostitutes. Their own view on this was that prostituteswere excellentinformants on sexualresponse patterns,because they had vast numbersof sexualpartners and could sexuallysatisfy them very quickly (Brecher 1972:328). Masters and Johnsonignored any political dimensionto prostitution and instead effectively gave female clients in their sex therapy the role of prostitute, whereby the women were clearly expectedto servicemale sexuality.Thus their 52 women clients-were explicitly taught that it was their role to treat and cure any sexual dysfunction in their male partners, such as premature ejaculation. However any sexual difficulties experiencedby the women themselveswere not servicedor treated by the men. Mastersand Johnsonalso providedfemale sexual surrogate partners for their male clientsas part of their therapy.There is uncertaintyas to whetherthese surrogates were paid to havesex with the men: Jeffreys(1990) claimsthey were not paid: but Szasz(1980) claimsthey were. Either way, it is clear that their job was to provide a sexualservice to the men.Masters and Johnsonhowever refused to provide sexualsurrogates for their femaleclients. It is this blatant doublestandard to which feministshave drawn attention.
Jackson(1984) has describedthe principal aim of Masters and Johnson'swork as being to cementheterosexuality and marriagethrough the maintenanceof coitus at all costs.McNeil hasdescribed the aim of the Mastersand Johnsonsex therapymodel as 'to help him get it up, keepit up, and ejaculateinto the vagina:to help her openup and enjoy ie (1980:47). This is a rather crude description, but my reading of Masters and Johnson and indeed of all the traditional sexology suggestsit is none the less an accurateone. That it was the aim of sexologyand sex therapy to strengthenthe heterosexualmarriage bond, there can be little doubt.However, curiouslyfew of the feministswho havesubsequently written on the subject ventureany opinion on whetherthe aim was met or not. Segalis a notableexception and she is clearthe aim was not met:
If we are to accept, as indeed we mightý that the consciousgoal of Nfasters and JohnsoWssex therapy, and that for which they were originally funded, was to shore up heterosexualityand marriage (and thereby male don-dnation)by forging a bond of pleasurebetween the sexes, we have to conclude that they have spectacularlyfailed. The divorce rate hassoared by 400 per cent in Britain over the two decadesin which the sex therapistshave supposedlyfought to preservemarriage, evenmore in the US. It seemsplausible to me, and the moral right would agree,that womerfs expectationsof sexualpleasure ( so often frustrated in marriage) are more likely to threatenthan stabilizemarital harmony,at least once women have any possibilities for econon-dcindependence (1987:98).
Returning now to the lack of feminist criticism of I-Ete!s work, it is interestingto note that despitethe fact that I-lite has conductedher work from a more woman-centredand overtly feministperspective than any other more traditionalsexologists, her work seemsto havebeen largely ignored by feminist observers.I have only been able to find one or two extended 53
critiques of her work Segal (1983,1994) and Stanley(1995). Feminist books exclusively devotedto sexualityissues in which one might expectto find some referenceto I-lite!s work omit it entirely: for example,Jeflirey's (1990) Anticlimax and Feminist Reviews (1987) Sexuality:A Readerboth havenumerous references to Ellis, Kinsey andMasters and Johnson in their indices,but Hite is not fisted in either of them. Dworkin makes a brief referenceto Hite!s researchto quote one of her findings (that most women do not orgasm through intercourse)and clearly ratesI-lite! s work highly, describingher as 'the strongestfeminist and most honorablephilosopher among sex researchers!(1987: 148). However Dworkin doesnot engagein any real discussionof Hite's work. Stanley(1995) in her recentbook on sex surveys hasproduced the most extensivecritique of I-Ete!s work that I have come across.She praises Hite!s researchfor letting women speakin their own voices,on their own terms, about things that matter to them in relation to sexuality. Stanley highlights some methodological shortr-on-dngsin Hite!s work, predominantlythose relating to a lack of attention to epistemologicalissues and a lack of reflexivity ie Hite!s failure to reflect on her own role as researcher.However, Stanleyalso feels that Hite!s work has methodologicalstrengths, for which shehas not receivedsufficient credit:
The methodologicalinnovation in Hite!s work is its removal of Ihe numbers'from rhetoricaland textual centrality,resulting in 'a survey'that is different in form and function from the dominantpost-war version of what this shouldbe. (1995:23 0)
Segalis lesspositive than Stanleyand criticisesHite! s report on femalesexuality for beingtoo similarto Masters and Johnson,for focusingtoo heavilyon what makeswomen orgasmand ignoring the socialdimensions to womens sexuality,specifically fd&g to make links between sex and culture and sex andgender (1983: 37). Over a decadelater Segalargued that far from living up to its claims of offering a 'new perspectiveon female sexuality, which (stands] prevailingtheory on its head'(Spender 1993: preface), Hite! s work doesprecisely the opposite ie it reflectsthe limitationsof the sexologicaltradition. Segaldevelops her argumentthat I-Ete views sex as a biological or purely physical experienceand in so doing fas to take into account the social meaningswhich accompanythe bodily experiences.In addition Segal believesthat I-Ete,in commonwith all other sexologists,is unableto theorise,sexual desire. As Segalbelieves the complexitiesand contradictionsof sexualdesire are essentialfactors for investigationand understandingof sexualbehaviour, it is not then surprisingthat she finds I-Ete!s work somewhatlacking in insight(1994: 104-116). 54
In anotherwork Segalcriticises not 11ite'ssexological research referred to in the previous section,but her other large scalesurvey Womenand Love (1988). Segal'scriticisms again refer to I-Ete!s lack of attentionand sensitivityto social aspectsof sexualityie. how race and classimpinge on womens feelingsand possibilitiesregarding personal relationships. She also commentson IEte!s 'methodologicalmayhern! (1990: 277). 1 would certainlyagree with Segal on this latter point and feel that Hite has failed to successfullymerge qualitative and quantitativemethods andI am surprisedthat Stanley(1995) doesnot draw more attentionto flis in her critique. In my view the results of 11ite!s work are unsatisfactoryon a numberof levels and I suggestthat this is one reason why so little attention has been paid to I-Ete!s sexological.research: her findings are presentedin a form that is very tedious to read. For example,with regardsto the report on womeds sexuality,the vast majority of the 664 pages are used to reproducedirect quotes from the women who completedthe questionnaires. Many of thesequotes say the samething over and over again. Hite justifies her use of direct quotesin the following way:
the Me Report large forum .. methodologywas conceivedas providing a in which women could speakout freely - giving everyonereading those replies the chanceto decide for themselveshow they felt about the answers.The methodologywas seenas a process,both for the individual women answeringthe questionnaire,and for the personreading what the 3019 women had written -a processof rethinking,self-discovery, and of getting acquaintedwith manyother womenin a way that had neverbefore beenpossible - an anonymousand powerful communicationfrom all the womenwho answeredto all the women of the world (1981:1059).
I agreewith this to an extent - it is interestingand importantto includewomerfs own voices (andI have done that in my own work in this thesis).Nevertheless, this methodof presenting researchfindings does seem somewhat overdone in I-Ete'swork eg. 15 pagesof direct quotes from women whose masturbationfell into the type IA category (see I-lite 1976:79 for descriptionsof the different types of masturbation).Obviously I-lite!s readers could sldp severalpages at a time if they did not want to read all of her respondents'quotes, so I feel a more valid criticism is that it is very difficult to extract useful information from the presentationof the researchfindings. Occasionally there are precisepercentage figures, which are easilyretrievable and helpful eg. 82% of respondentssaid they masturbatedand 15% said they did not. However, at other times,actual numbers are given insteadof percentageseg. 80 out of 1844 women saidunequivocally that there was physicaldiscomfort during intercourse 55 and237 saidunequivocally that therewas not. At other times,no figuresat all were given and findings are presentedin the form of 'the overwhelmingmajority of women' or 'many,many women'. Most annoyingof all were the times when the readerwas left with no idea of the frequencyof womeds responsesto a particular question.Prior to readingthe work I was especiallyinterested in Hite!s findingsabout womeds feelingsregarding oral sex on a man ( as this would havebeen a usefulcomparison to my own findingsregarding women with teaming disabilities).However, Hite presentsher findings to the researchquestions Do you enjoy fellatio?To orgasm?' (p. 374) merelyas a set of 15 direct quotes(a mixture of positive and negativecomments). There is no accompanyingcommentary, analysis or explanationof how representativeor otherwisethese 15 women were of the 3019 who repliedto the survey or evenwhether the remaining3004 had answeredthat particularquestion or not. In her report on male sexuality,which was producedsome years later, I-Etedoes seemto have improved the presentationof her findings.The vast majority of the 1129pages are still filled with direct quotes,but this time many of the researchfindings are given as percentagesand therefore informationcan be more easilyretrieved.
A major piece of British sex researchwas publishedby Wellingset al in 1994.However, this work was concemedwith providing data on what peopledid sexually,and not with what they thought andfelt abouttheir own experiencesor sexualityissues more broadly.The reasonsfor this are becausethe surveywas located firmly Aithin a fi-ameworkof concernabout sexual health and sought to provide data 'that would help in assessingand preventingthe future spreadof HIV (1994:5). Although relevant in that sense,it has neverthelessbeen strongly criticisedfor what it did not investigate:
The clitoris is not mentioned,let alone'defmed' anywhere in this research and nor is the occurrenceof orgasm or sexualpleasure more widely in either women or men.Desire and pleasureare absent,along with consent force, lust joy There and and p* sorrow and ... are numbers and percentagesaplenty, but little awarenessthat what gives life to theseis how people understandand feel about what they do and do not do; researchthat excludesthis, in my view, will not be able to explainvery much of anything(Stanley 1995: 52).
The most recent sexologicalsurvey to be publishedin Britain, which doesnot focus entirely on behaviour, is Quilliards Women on Sex (1994). This report of 200 British womeds responsesto a written questionnaireappears at first glanceto be a reputable,academic woric 56
However, the book is in fact published by the bookclub which distributes it (Quality PaperbacksDirect) andhas no ISBN number.The authoris describedon the bookjacket as a leading authority on womeds sexuality' and her previous best known publication is Supervifility (1992). This, incidentally, is a book aimed at heterosexualmen containing sexuallyexplicit photographsof beautifulmodels, which provides a 'step-by-stepprogramme of sexualenhancement through developingtechnique' (p 13).
The researchfindings in Womenon Sexare presentedin a much more coherentand consistent fashion than 11ite!s, in that Quilliarn gives the reader statistical breakdowns of all her respondents'answers. Also, unlike I-Ete,Quilliarn provides ample commentaryto accompany the statisticsand quotes.It is the quality of tMs commentarythat makesthe study somewhat suspectin my view. The authors'own strong feelingsabout the subjectmatter shinethrough the text to the point where they put the actualresearch findings very much in the shade.The book is written from a perspectivethat seemsindiscriminately positive about womeiYssexual activity with men. Ile author choosesto describeher respondents'answers by completely herself aligning with them and using the first personplural, hence'we feel..' or 'we are more likely.. '. At times she aligns herselfso strongly with her respondentsthat it simply does not make grammaticalsense. She mixesthe first personplural with the single article resultingin the bizarrephrases 'our clitoris' (p 135) and'our husband'(p202).
Rather than representa range of womerfs opinions,the author seemsto be attemptingto portray the Woman'sview, as if women speakwith one voice. In so doing Quilliarndoes not alwaysreflect her own researchfindings. For example,on p. 196 we are presentedwith the statisticthat 40.3% of respondentswere activelyunhappy with their sexfives, yet the very first sentenceof the authoescornmentary on this is We love sex and we love our sexualpartners'. Quilliam acknowledgesthat becauseher sample are self-selected,they are by definition women who are happy to reveal their sexuality,so can never be totally typical' (p240). However fact shemakes no commenton the that not only are they not typical -whateverthat reallymeans - but actuallythey maywell be very atypical.My interpretationis that the women who took part (who actively followed up invitations to participate from magazinesand newspapersand who investedmuch time and effort in the process)were uncharacteristically positive about sex. We are told that most women wrote at least 3,000 words in their replies in andmany wrote the region of 20 - 25,000words. Most womentook weeksor evenmonths 57 to write what they wanted to say. This points at the very least to a strong interestin sex, a willingnessto devotesignificant amounts of time on, and a positive desirefor, communicating at lengthvvith othersabout one! s sexualexperiences.
I do not wish to give the impressionthat all the women reportedoverwhelmingly fantastic sex fives(indeed some 33% reportedhaving been raped or sexuallyabused at somepoint in their fives). However there is no doubt that the overall picture painted both by the respondents themselves(as far as can bejudged fi7om.the statisticsand quotes)and by the author is a very positive one. Of coursethere is nothing intrinsicallywrong with presentinga positive picture of women'ssexual fives - indeedit would be very welcome,if it were accurate.But the fact that the findingsof this pieceof researchconflict with much of the other researchin the area, combinedwith the lack of analysisof genderpower relations,leads one to castdoubt on them. For example,the author doesnot draw attentionto someof the more glaring inconsistencies in the womeds replies, despite claiming that a cross- check for inconsistenciesand exaggerationswas done ( 'we found almost none' p240). However there clearly are inconsistencies:on the one handwe are given to believethat almost75% of respondentsshare equallywith men the role of initiating sex and that men almost always respondpositively to theseovertures (pl 13) ; andyet on the other handwe are also askedto believethat 68.5% of the womenwant more sexthan they are getting (p 196).
Neither the author nor the respondentswrite within a framework that showsany gendered, political understandingof sexual relations between men and women. For examplein the discussionon women posingfor their male partnersto take sexualphotos / videos(45.7% of the women had donethis) there was not only a total absenceof any analysisof why it is men photographingwomen and never the other way round, but no mention of the possibilityor actuality of women being pressuredby their partnersto do this. In addition we are in fact invited to understandand indeedexcuse the meds abuseof the womerfs trust in this matter (by showing the pictures to their friends without the womerfs permissionor knowledge) :'Ibey constantlyask us to pose,loving to captureour beauty,and sometimesso proud of it that they take things a little too fae (p176). It is my conclusionthat far from being a serious sexologicalresearch study, the authorand publishers have used the respectabilityof a research format to producea book with a strong messageabout how to constructand maintaincertain forms of heterosexualbehaviour. The messageto women and men readingthis book is that 58 women can and do and shouldhave lots of sex with men which they can and do and should enjoy.Even the author herselfseems to sometimesforget that this is meantto be a report of researchfindings and not a sex manual. For example on p181 she gives advice on the safeguardsnecessary for enjoyingS/M sex.
Vance, observingsex researchersattending a conference,described them thus: 'Many were not just [sexual] enthusiasts,but missionariesand proselytizers'(1983: 379). The sameclaim could be madeabout this author.Despite some of the interestingand useful(because they can be used to compareto other research)findings in this work, Quilliarrfs book is a prime exampleof the phenomenonI describedin my openingparagraph on sexologyie. it is often not merelydescriptive and can easilybe tumed into somethingmuch more prescriptive.
Feminismand sexiolity With the developmentof the WometYsLiberation Movement and feminist thinking in the 1970s, traditional ideas about the nature of both female and male sexuality came under scrutiny. Challengingand changingideas about sexualityas an abstractconcept and sexual practiceitself were centralto feminism.In fact it could be arguedthat sexualitywas the issue for feministsin the 1970s: the 1978National WomeWsLiberation Conference in B irmingham. passedthe motion to make'the right to defineour own sexuality'the overridingdemand of the movement,taking precedenceover all other demands.However, as Segalhas pointed out, this was only achievedwith such fierce debateand opposition that it effectively preventedany further National Conferencesfrom beingcalled (1987: 96). Feministpreoccupation with sexual mattersin fact has a much longer history. Women had mobilisedaround such issuesas the need to changesexual relationsbetween men and women and rejecting male control over femalesexuality as earlyas the 1880s(Jeffeys 1984:22).
Despite there no longer being any clearly definedwomerfs liberation movement,sexuality is stiff a central concernfor many feminists,although the natureof the concern,the analysisof the problem and the directionof proposedchanges varies widely. The callsfor worneds right to sexualpleasure and flAilment andto control our own bodies,which were centralconcerns in the 1970s,are rarely heardso directly today. This is partly becausefor somewomen some of thesedemands have been met and progresshas undeniably been made. Instead the debates 59 today are more likely to be about which ways of achieving sexual pleasure are compatible or incompatible with feminist principles eg the lesbian S/M debate (Jeffireys 1994), whether pornography does or does not contribute directly to women's oppression (Segal and McIntosh 1992, Itzin 1994) or establishing the true extent of sexual violence (Kelly 1988). Some feminists regret this changefrom a positive call for womeds sexual liberation in the 1970s to a negative and Veak sexual conservatism!in the 1990s (Segal 1994:xfi). Others, whose work is rooted in what some see as the 'doom and gloord school, argue that their work reflects the very real, and sadly, negative sexual experiences of many women (Holland 1992, McCarthy
1994). How representative women who have negative sexual experiences are of all women is notý and is unlikely ever to be, known and care needs to be taken in suggesting otherwise. However feminists who try to promote a more positive view of (hetero)sexuality could just as easily be accused of overlooking the point of accurate representation or taking a simplistic view of it. For example, Segal (1994) quotes statistics from quantitative sexual surveys in the 1970s and 80s showing how many women were happy with their sex fives with men. She suggests that the feminist magazine Spare Rib collapsed because young women were not impressedby the 'puritanism! of feminists. (Although this may have been a contributory factor, there were undoubtedly others, such as conflicts around race and ethnicity and wider economic factors which led to the collapse of not only Spare Rib, but also a number of other womerfs collectives, most notably the Sistenvrite bookshop collective.) In trying to promote a sex-positive culture, feminists can make as many simplistic and sweeping statementsas they accusetheir sex-negative peers of doing.
To understandhow feminists reachedtheir current divergent stanceson sexuality, it is necessaryto examine contemporarywomeds responsesto the sexualliberation era of the 1960sand to womerfsliberation in the 1970s.These processes have been charted thoroughly and difIerentlyby Jeffreys(1990) and Segal(1994) amongstothers, so it is not necessaryto do so againhere. However, I will briefly exan-dnesome of the major feminist challengesto traditionalideas about sexuality.
Firstly, feministsemphasised that sexwas not a purely private matter betweenthe individuals concerned.It was also a public matterbecause it was regulatedby the law, medicine,religion and ideology.Feminists argued that the social context of sex must be understood,that there were clear patternsof sexualbehaviour which could be observedand analysed.Having much 60 in commonwith the sexualscript theories of Gagnonand Simon I outlined earlier,Jackson stated unequivocally 'Sexual behaviour is social behavioue (1978:2). Until feminist sociologistslike Jacksonmade it clearthat sexualitycould be investigatedor understoodonly in its social context, sociologistshad tended, if they had looked at it at A to examine sexualityin isolation,taking it as a'given' unproblematicentity.
Feministsplaced gender into the centreof questionsaround sexuality and in so doing removed what had previouslybeen considered all-important, namely object choice and deviancy.Thus it was arguedthen, as it still is now, that there are more similaritiesin the sexualitiesof gay and heterosexual(or straight) men or lesbianand straight women, than betweenmen and ' women.However, in recent years this position has been challengedby 'queer'theorists and activists,who argue the opposite ie that there are in fact many similaritiesin the desires, identities and experiencesof lesbiansand gay men. Smythdescribes queer politics as both an lesbian heightened -expressionof and gay anger at the more overt and oppressivemeasures adoptedin the 1989s eg homophobicresponses to the AIDS crisis, Clause28 of the Local GovernmentAct 1988 and as a backlash against what some perceived as assimilationist lifestylesand strategiesof many lesbiansand gay men.Far from arguingthat they arejust the sameas heterosexuals,save for their same-sexdesires, queer theorists seek to celebratetheir difference(Smyth 1992).
In some of the early challengesto traditional views on sexuality,feminists argued that the conceptof sexualityand in particular ideas about sexualpractices were male defined.As I explainedin chaptertwo, with relationto sexology,sexual activity was largelyviewed in terms of penetration(real sex). Anything else( not real sex) was consideredmerely a preliminaryto penetrationor as a substitutefor it. Sexuallanguage reflected this with a multitude of words and phrasesto describeintercourse and a paucity of terms to describeother sexual acts. Active verbsdescribing merfs role in sex and passiveverbs describing womerfs role were, and are, standard.The role of the clitoris in womeifs sexualpleasure was emphasisedby feminists and most womerfs real sexual experienceie of clitoral, rather than vaginal, orgasmswas explained(Koedt 1970,I-Ete 1976).Some of the most importantfeminist criticismsrelated to the nature of male sexualityin particular. The commonlyheld notions that men had greater sexualappetites than women and.that they had a right and a need to satisfytheir appetites 61 were vigorously challenged.TMs challengeled to a huge shift in awarenessof, and responses to, malesexual violence, which I will cover in more detailin the next section.
The challengeto the beliefin the naturallylarger sexualappetites and 'promiscuitVof men also led to chaUengesin traditional thinking about prostitution and the dichotomy betweengood and bad women. The traditional view had it that it was necessaryto have a 'pool' of `bad' women to servicethe sexualneeds of men, as this prevented'good' women from having to meet those demands.The bad' women thus provided a protective service. Feminists challengedthe assumptionsbehind this thinking (Jeffreys1985). One of the most important feministcontributions to understandingmale sexualitywas to try to exposethe myth of men's supposedlack of control over their sexual response.It was, and still is to some extent, believedby both men andwomen, that men haveonly limited sexualcontrol and that they can be sexuallyaroused with little or no warning. Women were consideredresponsible for mens sexualarousal, not by sayingor doing anythingin particular,but simply by being there : 'The malehas a semi- automaticresponse set which seemsonly minimallyrelated to any particular female'(Stewart 1981:167). Although this soundsfaintly amusing,one only hasto think of the deadly serious effect such thinking has had on womerfs dresscodes, whether in Victorian Britain or someIslamic cultures today. Feministschallenged the assumptionthat women were responsiblefor merfs sexualarousal and satisfaction,not leastbecause women were also held responsiblefor their own (which meantthat men were responsiblefor neither).Traditionally women were expectedto enjoy what men enjoyedand blamedand subjectedto 'treatment'if they did not. Men were not expectedto changetheir sexualpractices to suit women. These glaring doublestandards were not toleratedby feministtheorists and activists.
Another major areaof feministcriticism related to womens right to control their own fertility. The socialprohibitions on havinga child outsidemarriage are easyto forget for most women in Britain today, now that they havelargely disappeared.But theseprohibitions were very real in the (not-so-distant)past and still are very real for women from certainreligious and ethnic communities.These strong social prohibitions and the lack of adequatecontraception and abortionfacilities have historically conspired to force womento regulatetheir own, and metfs, sexualdesires for fear of the consequences. 62
One of the major contributionsof lesbianfeminists to the sexualitydebates was to challenge not only the supposedsuperiority of heterosexuality,but equally important to challengeits taken-for-grantedstatus. Instead of acceptingthe traditionalview - held by somefeminists as form well as non-feministsit must be said- that heterosexualitywas the natural of sexuality, lesbianfeminists exposed some of the pressureson women to be heterosexual(Rich 1980). Thesepressures vary from subtleforms of ideologyto the not so subtleeconomic pressures or evendirect physicalforce (Jackson1987).
Other major contributionsto the sexualitydebates come from black feminists,who havebeen critical of white feministsfor failing to understandthe complex inter-relatednessbetween sexism,racism and classoppression. W%ite feminists have identified with their victimisationas women and so have privilegedthe fight againstsexism as the struggle.In doing so, white feministshave inadvertentlyoverlooked or deliberatelyignored the advantagesthat racism grants them as white people (11ill Collins 1990). This lack of appreciationof how, in particular, racism and sexism work together to oppress black women has led to white feminists asking absurd questionsof black women about whether being black is more importantthan beinga woman(hooks 1984).
Someof the major campaignsof the early second-wavefeminists were so clearlyfrom a white middle classperspective, that it is not surprisingthat many black women felt alienatedfrom them. Some of theserelated to sexualityand others did not: for instance,Friedarfs (1963) emphasison women!s needand right to work outsidethe homemakes sense in the context of white, middle class,college educated women who fýlt they were wasting their educationand intellectualabilities, but did not speakto the experienceof poor black womenwho had always worked outside the home as a matter of economicnecessity and whose history was a cruel one of enforced and exploited labour, similarly, whilst white feministswere understandably campaigningfor the right to control their own fertility through accessto contraceptionand abortion, few gave voice to many black womerfs concernsabout racist ideologieswhich worked to preventthem from havingchildren (Mama 1986).The cultural specificityof much of westernfeminisnfs response to issuesof sexualityis alsoto be found in its responseto the problemof sexualviolence, as I will explainin the next section. 63
Despiteits inevitableshortcomings, the effect of feminismon traditional views of sexuality was neverthelessradical and transforming,turning long-heldbeliefs on their head and firmly placinga fair shareof responsibilityfor their behaviourand ideaswith men.Nowhere was this more obviouslythe casethan with the whole issueof sexualviolence.
Feminism and sexualviolence Many of the first wave feministsin the late nineteenthcentury had campaignedaround issues of mens sexualuse and abuseof women (Bland 1995).However, as Jeffreyspoints out, their efforts have largely been forgotten or are now viewed as conservativeor retrogressive becauseof their associationswith the ideasof socialand sexualpurity (1984).Nevertheless, it is the case that women like JosephineButler (who campaignedto changemeds use of prostitutesand their sexualabuse of children),Mllicent Fawcett ( who, with regardsto incest, arguedthat men who so abusedtheir position of trust should receive an especiallyharsh punishment)and Elizabeth Wolstenholme Etmy (who campaignedfor the law to allow women to be able to refusesexual intercourse with their husbands)and many otherslike them, were activelydebating ideas and organisingpolitical campaignson issueswhich are still very much alivein the late twentieth century.
Of the secondwave of feminists,it was Griffin, with her paperRcrpe: the all American crime (1971) andBrownmiller, with her book Against Our Will., men,women and rape (1975)who are widely credited with beginningthe current wave of exposingthe nature and extent of metfs sexualviolence to women.Feminists have done much over the past twenty or so years to increaseunderstanding of sexualviolence. One of the most important achievementshas beento dispelmany of the myths that surroundedthe issue.By doing this through academic research,use of anecdotalevidence, through wometfs groups and conferences,but perhaps more importantly (becauseit reachesa bigger audience)through television,radio, womerfs magazinesand newspapers,the truth about sexualviolence has started to emerge.This in turn gives more women the confidenceto speak outý which in its turn helps to build a clearer pictureof what really happens;thus more womenare believed (Plummer 1995).
Amongst the most important of the myths that feministshave helped to dispel are : that women enjoy sexualviolence; that women provoke it by their behaviourand/or appearance; that women routinely makefalse accusationsabout it; that it only happensto certainIdnds of 64 women;that the most commonform of sexualviolence is a disturbedman raping an unknown womanin a dark alleyat night. A full explorationof thesemyths and the feministchallenges to them havebeen adequately conducted elsewhere (eg Kelly 1988,London Rape Crisis Centre 1988), so it is unnecessaryto do so again.Instead I want to emphasisehow feministshave focusedon the vitally important task of placingthe responsibilityfor the continuedexistence of widespreadsexual violence with men individually and collectively. Whereastraditionally women had beenpartly or wholly blamedfor their own violations, from the 1970'sonwards this was vigorously challenged.Thus, feministsrefused to accept terrns and conceptslike 'dysfunctional'or 'incestuousfamilies' and insteadsubstituted terms such as 'father-daughter rape!(Ward 1984). In doing so an accuratedescription of the dynamicsof the situation is offeredand the responsibilityis removedfrom the whole family to the individual perpetrator. This was important becausethe beliefsthat are held about men,women and rape do not just havean impactat the theoreticallevel. Rather they havepolicy and practiceimplications: what a societybelieves about sexual violence determines the kind of servicesand supportstructures that a societywill providefor thoseaffected.
Especiallyimportant has been the feminist challengeto the public / private split that existed not only in the minds of individual men and women, but was, and still is enshrinedin the responsesof statutory agenciesand the legal system.The traditional view on this was that firstly what happenedbehind closed doors, at home, was of concern primarily to those involvedand secondlywhere it was brought to public attention,it was by definition treatedas less seriousthan any comparable'public! crime and attracteda lesserpenalty, sometimesno penaltyat all. The fact that rape within marriagewas only criminalisedin Englandand Wales in 1991(one year earlierin Scotland)and that therestill havebeen only a handfulof successu prosecutionsis the most obvious manifestationof this. Similarly it is largely becauseof this public / private split that if a man rapesan unknown child, he will not only be treated as a criminal,but often vilified asthe worst kind of crin-dnal.Yet if anotherman rapes his own child (bearingin mind that thereis everylikelihood the rapewill be repeatedmany times as opposed to the likely'one-off rapeof an unknown child), he maywell not be treatedas a criminalat all, but divertedtowards therapy.
With regardsto sexualviolence perpetratedtowards adult women there is a strongly held belief that it is, quite simply,worse to be rapedby someoneyou do not know than someone 65 you do. I myselfwas involvedin a very public exchangeof views on this issuein the pagesof Yhe Observer newspaperin 1992. In responseto the highly publicised conviction of the American boxer Mike Tyson for raping a woman he knew, journalist Simon Hoggart had categoricallystated that being raped by a stranger was a worse experiencefor women (16.2.92).The newspaperprinted my response,which arguedthat this belief stemsfrom the wholly falseassumption that rapeis essentiallyto do with sexand therefore is not so bad if it is by someoneyou know. I challengedHoggart to produce some evidencefor his claims ie accountsfrom womenwho had beenraped by acquaintances,fliends, boyfriendsetc who said it was not so bad (23.2.92).None was ever produced.MacKinnon, on the other hand, has produceda very well arguedchallenge to the traditionalpublic / private split and hasproposed that legallythere should be no suchdistinction, because: when womenare segregatedin private, one at a time, a law of privacywill tend to protect the right of men to be let alone, to oppressus one at a time It keep bedrooms ... will some men out of the of other men (1987:148).
Feministshave gone to great lengths to demonstratethat the overwhelmingmajority of perpetratorsof sexualviolence are men (Kelly 1996) and that men of all classes,occupations, ages,races, can commit such offences.Nevertheless the use of gender-neutrallanguage to describethe perpetratorsof sexualviolence is deeply ingrainedin our culture and efforts to shift from this position are stronglyresisted (Randall and Haskell 1995).A good exampleof this is highlightedby Campbellin Unofficial Secrets(1988), her book on the Clevelandchild sexualabuse scandal of 1987. Anal dilatation had been one of the key diagnosticfactors of this 'epidemic'of child sexualabuse (and certainly in mediareports it was this diagnosisthat was focusedon to the exclusionof all others).It was acceptedby all who believedthat the childrenhad beenpenetrated, that they had beenpenetrated by penises- this was basedon the children'sown accounts.Nevertheless throughout the emergingscandal and the subsequent inquiry, the vast rnýjority of those involved consistentlyreferred to 'parents'as the alleged abusers/wronglyaccused, rather than fathers. Of this phenomenon,Campbell wrote:
It becamethe unsayablething during the inquiry. It was almost as if a societywhich was finally beingforced to confront child sexualabuse was at the samemoment refusing to confront the characterof the perpetrators and the sexualsystem which producedabuse. And althoughthe modem womeds movement like its antecedentsin the late nineteenthand early twentieth centuries,has been among those who brought sexualabuse out 66
of the shadows,and has certainly focused on masculinityas a political problem, it was exiled from the national debate surroundingCleveland (1988: 63).
I would arguethat it is still largelyunsayable today. An examplefrom my own field of learning disability is a recent research grant proposal which was retumed by the funders for amendment,because its title specificallysaid it was to investigatethe difficult and abusive sexualbehaviour of men with learningdisabilities. The title was duly changedto say people with lean-dngdisabilities, but the proposalitself and the work was, in fact, solelyinvestigating men!s sexualbehaviour. The fundershad no objection to this and recognisedthe needfor it andfunded the work, but it seemedthat they were unableto openly and publicly confront the issuehead on. The reasonsfor this are unknown, but possiblycould includewanting to 'tone down!the genderedpolitical dimensionto the work and alsobecause they wantedto be seen to be leaving open the possibilityof women as perpetratorsof sexualabuse. Whilst it is, of course,the casethat women can, anddo, sexuallyabuse others, this specificpiece of research was not concemedwith that andwas in fact only looking at the sexuallyabusive behaviour of men.
Another of feminisnfs most important contributionsto promoting the understandingof sexualviolence, has beento highlight the connectionsbetween different types of sexual violence(eg rape of adult women,sexual abuse of children),sexual aggression (eg sexual harassment,indecent exposure,obscene telephone calls) and other forms of violence againstwomen (eg domesticviolence). Kelly thoroughly demonstratesthese connections and puts forward a very sound case for looking at meds behaviour and womerfs experiencesin the context of a 'continuumof sexualviolence' (198 8: 27). If we add to the phenomenaKelly describessuch things as merfs use of pornography, their use of prostitutes(both male and female)and the hitherto largely unrecognisedways men use their power sexuallyover other men (Jones 1991, Thompson 1994) then it is hard to avoid the conclusion that sexual aggressionand violence are integral parts of how masculinityand malesexuality are constructedunder patriarchy.
However, not all feminists would fully support that argument. Segal, in her book Slow Motion: ChwTing Masculinifies, Chwqing Men (1990) arguesthat 'it is lessthan helpful, however,to tie up all forms of aggression,sexual violence, institutionalised heterosexuality, warfareand ecologicaldestruction in one neatpackage as "male"'. Shecontinues: 67
In sifting through the growing literatureon merfs coercivenessand abuse of women, I suggestthat it is possibleto makedistinctions: between men who deploy violenceagainst women and men who do not; betweenone form of violenceand another-,and between the structureswhich foster and maintaindifferent forms of violence and those which help to undermine them (1990:xiii).
Other criticismslevelled at the way feministshave viewed the links betweensexual violence and masculinityconcern the lack of adequatetheorising of the sexualviolence perpetrated by women,whether that takesthe form of child sexualabuse or sexualabuse within adult lesbian relationships.There is no doubt that these are under-researchedand poorly understood phenomenaby feministsand non-feministsalike. However work is being done to examinethe phenomenonof womerfs violent behaviour,both sexual(eg. Elliot 1993) and physical(eg. Lobel 1986) and it is hoped that understandingwill developin time. Kellys recentwork has madean importantcontribution to this (1996).
Black feministshave also criticisedthe white feministresponse to the phenomenonof sexual violencefor againfailing to understandhow racismimpacts upon it. This manifestsitself most obviously,but not exclusively,in the racist myth of the archetypalrapist being a black man raping a white woman. The legacy of this myth is that black women have not traditionally joined feministcampaigns to fight sexualviolence:
Af black women are conspicuouslyabsent from the ranks of the anti-rape movement today, it is, in large part, their way of protesting the movement'sposture of indifferencetoward the fi-ame-uprape chargeas an incitementto racist aggression(Davis 1978:25).
This leavesblack womenvery vulnerablein their communitieshowever, as most black women are rapedby black men.In seekingto protect individualsand/or communities from oppressive intrusionsby a white racist police and legal system,black women 'five with the untenable position of putting up with abusiveBlack men in defenseof an elusive Black unity' (FEU Collins 1990).Howeverthis is not only an issuethat affectswomen becauseof their raceand racism.It can be an equallystrong pressureon women becauseof their religious or political beliefs.Women from the republicancommunity in Northern Ireland havevividly describedthe sametension in their lack of reporting of sexualand domesticviolence by republicanmen. They summarisethe situationthus : It is contradictoryto expectwomen to phonethe police 68 for supportin areaswhere the dominantcommunity perception of the police is of repression rather than one of support'(McKiernan & McWilliams 1994).Just as the police in Northern Irelandmay usethe reasonfor being calledto help a republicanwoman as an excuseto search for signsof membershipof the ERA, so white police in Britain, on being summonedto help black womenwho are experiencingviolence in their homes,may'turn the whole affair into an immigrationinvestigation! (Mama 1989:17).
Conc&qon
I have demonstratedin this chapterthat despiteits shortcomingsin theory and practice,the achievementof feminismin developinginsights into issuesof sexuality and sexualviolence havebeen considerable. What first wave feministshad begun in the late nineteenthcentury, the secondwave feministsfinaUy succeeded in doing in the 1970sand 1980s.This achievement was to 'name!aspects of women!s sexualexperiences and feelingsthat had not previouslybeen namedand thereforecould not be spoken about. If, as will be demonstratedin this thesis, womenwith learningdisabilities are getting a raw deal in their sexualrelationships with men, then it is feminist first, this is entirely thanksto efforts that we can recogrýisethat the case, second,understand why it is the caseand third, seehow the situationnight be transformed. 69
CEUPTER 4 1XIERATURE REVEEW
Learning Disability - ideologies and sexuality.
Amidst aHthe changesin ideologyand principlesof care,in definitionsand labels,in theories about causation and treatability of. the condition, only one thing has been constant: the presenceof people with learning disabilitiesin society. From the earliestrecorded history peoplewrith learningdisabilities have been a sourceof speculation,fear, pity or curiosity for others.They haveusuaUy been set apart, often literally, from other peopleand the feelingsthey havearoused in othershave rarely been positive. In short, by their very existence,people VAth learningdisabilities have posed a challengeto the rest of society.
An early Christianbelief saw 'fools'- as they were usuallyreferred to - as being closerto God than ordinary people, due to their simplicity of mind and uncorruptednature: they were so- called'holy innocents.This contrastedsharply with anotherstrongly held early Christianbelief of fools being possessedby the devil. There are records of people with learning disabilities being tortured and IdUedas witches during the Inquisition (Uhttersley et al 1987). It is generally acceptedthat up until the Industrial Revolution, when most people would have earned their living off the land and from home-basedactivities, that having a family member with a learningdisability would not necessarilyhave been a particularburden. In pre-industrial societies,including somecontemporary ones, there were relativelyfew peoplewith profound or multiple disabilities,as they tendedto die from complicationsassociated with their condition and/or they may havebeen actively or passivelykilled off [If this soundsinhumane, we need remind ourselvesthat in the world's most 'advanced'societies people with learningdisabilities are stifl 'allowed to die!by necessarymedical treatments being withheld (Sobsey1994) or are prevented via genetic screeningfrom being bom in the first place (Thompson 1993)]. Historically, people with less severelearning disabilities may have beenable to contributeto family life and income by carrying out simple,but necessarytasks and as work was home- based,there would havebeen other people presentto provide the necessarysupervision for thosewho neededit.
During and after the Industrial Revolution, when the labour force becamemore controlled, structuredand urbanisedin factories,it is easyto seethe impactthis would havehad on people with learning disabilities:with the profit driven emphasison quick and efficientproduction in factories,they were unlikely to be ableto contribute,and aswork was no longer home-based, 70 there may have been no one to look after them. For those who were now a drain on the family'sresources, a solutionto the harshchoices of locking them in the homeor putting them out on the streets to fend for themselvesbegan to present itself the emergenceof the institution;'Social historians have shown that institutionalfife was practicallyunknown in pre- industrialsociety' (Laslett 1965:11). However, in the early nineteenthcentury there was a rapid developmentof public institutions,not only for peoplewith-learning disabilities, but also for the old, the sick, the mentallyill, the criminaletc.
As well as the direct effect of the IndustrialRevolution, a philosophicalmovement also played its part. From the 1780sto the mid-nineteenthcentury in a number of WesternEuropean countries,it was the so-calledAge of Reason and Rationality. As a consequence,it was thoughtappropriate and necessaryby someto observeand analyzethe 'mad'or'subnormal', to makesense of their behaviour.In order to do this, they had to be in a placewhere they could be observed.Institutions, or asylumsas they were more commonly known, were ideal for containmentand observation.Indeed they are still usedtoday for that very purpose.
Although they became,and remain to this day, repressiveand dehumanisingenvironments, it is important to recognisethat the intentionsbehind the early institutionswere benevolent:they were seenas model environments(I7uke 1813).However good the intentions,with hindsight, it is clear they were not realised.The reasonsfor this are varied and complex,but it hasbeen suggestedthat the dernisewas related to both the growth in the numbersof institutions themselvesand the numbersof peoplein them (Scull 1979). The reasonsfor the phenomenal growth are complexand varied, but include:a failure to five up to expectationsof beingable to cure patientsand, return them to their communities;an ever expandingdefinition of who could be classifiedas 'mad';and an ever increasingpublic demandfor the service,although as Scull has so meticulouslyresearched and documented'it was the existenceand expansionof the asylumsystem which createdthe increaseddemand for its own services,rather than the other way around'(Scull 1993:363).
However, it was not merely becauseof practical problemsassociated with growth that the institutionsdid not five up to their developers'hopes. The theoreticalbasis to their work also becamecorrupted. The 'moral management!with its emphasison will power, obedienceand 71
conformitybecame in itself a rigid discipline,which destroyedpeople's individuality (Ryan and Thomas1987).
Another significant historical developmentwas the medicalisationof the condition and its treatment.The early proponentsof institutionswere lay reformersand educationalistsand the institutionswere run by lay superintendents.But doctorsbecame concerned that a whole field of work was slipping away from them and they successfullycampaigned for more control, eventuallytaking charge of the institutions and their inhabitants.This shift towards the medicalisationof what had hitherto beenconsidered essentially a social problemwas to havea profound effect on the way people with learning disabilitieswere viewed and treated. Only towardsthe endof the twentieth centurycould one saythat the medicalpower basehas begun to diminish.It hasbeen my recentexperience that within the remaininginstitutions, it is still the doctorswho arevery much in control of what happensto individualswith lean-lingdisabilities, despitethe fact that servicesas a whole are managedby non-medicalstaff
Becauseof the influenceof the medicalprofession, the prevailingideology until very recently has beento definepeople with learningdisabilities in termsof what is wrong with them.Their 'deficiencies'and their 'subnormality'have been emphasised and little attentionhas traditionally been paid to the negativeway they havebeen treated by societyand what effectthis hashad on their fivesand opportunities.
However, in recentyears, as ideologiesand serviceshave changed, attention has been paid to the effect societyhas had on peoplewith learningdisabilities. Consequently the labelsattached to peoplewith learningdisabilities have also undergonemuch revision over time. In what they call the 'client terminologycycle', Dunne and McLoone arguemost convincinglythat merely changingthe labeldoes little or nothingto changepeople! s socialidentity. If the socialstatus of a group remainsthe sameie. marginalisedand oppressed,then the new label will inevitably becomedebased in time: Brealdng the client terminologycycle requiresnot only a changeof words, but also such fundamentalsocial changesas will ensurethat those who have been marginalisedbecome valued membersof the community'(1988: 61). This is undoubtedlythe case: neither the womerfs movement,the gay liberation movement, the black civil rights movementor any emancipatorystruggle has ever arguedmerely for an improvementin the labelsused to describethem. There has alwaysbeen an awarenessof how languageis usedas 72 an instrument of oppression,but the demands for change have always gone beyond teminology.
Nonnalisation
In the past two decadesthere havebeen two major changesin the ideology affectingservices for people with learning disabilities:firstly the adoption of the principles of normalisation, which have had an enormous impact ; and secondly the growth of the self-advocacy movement,where the effect on serviceshas not beenso great to date, but which nevertheless is havinga steadyand growing impact. Normalisationas a conceptoriginated first in Denmarkand took hold in Scandinaviain the late 1960sand early 1970s.The definitionwhich is widely creditedas being the first is 'to createan eNistencefor the mentally retardedas close to normal living conditions as possible!(Bank- Nfikkelsen 1980:56). Ideas about normalisationas a set of specific concepts for learning disabilityservices were fi-amedby a wider recognitionof the humanand civil rights of people with learningdisabilities: in 1971the United Nations issuedtheir Declaration of General and SpecialRights of theMentally H=&capped, the first statementof which was that peoplewith leamingdisabilities should have the samebasic rights as other citizensof the samecountry and of the sameage. The early Scandinavianideas on normalisation(Bank-NMelsen 1980,NirJe 1980) went on to be developedin North America (Wolfensberger1972,1983). In Britain OBrien's work has alsobeen influential. Through the developmentof what are known as the Tive Accomplishments'ie. presence,choice, competence,respect and participation,O'Brien has usefully drawn out the practical implicationsof normalisationfor people with learning disabilities(Emerson 1992).
The fact that practicallyevery servicefor peoplewith leamingdisabilities has adoptedat least someof the principlesand practicesof normalisation(and thosewhich have not are likely to keep quiet about it) is a testamentto the strengthof the ideology.This is not to say,however, that the concept is unproblematic. Most common criticisms focus on the way that nonnafisationat times obscures,and at times rides roughshodover, equalopportunity issues. In relation to race and ethnicity,these have beenexcellently analysed by Baxter et al (1990) andFems (1992). 73
Thereis also a developingbody of feminist criticism of normalisation.Writers such as Brown andSmith (1989,1992)argue that thereare manysimilarities between the oppressionof people with learning disabilitiesand the oppressionof women. They suggestthat there are also theoreticalparallels between the solutionsoffered by feminismfor womeds emancipationand thoseoffered by normalisationfor peoplewith learningdisabilities. In practice,however, there is some divergence:for examplenormalisation advocates small-scale services serving small numbersof people,who are not encouragedto havemuch to do with eachother. As feminists Brown and Smith have argued, this can lead to problems being individualised and commonalitiesand patternsoverlooked. The social and political context of people!s fives is then poorly understood. Shnflarly, normalisationpromotes the ideal model of residential servicesas the small group home for, and staffed by, both men and women - essentially replicatingaTarnfly home' (Bums 1993,Clements et al 1995).The predominanceof this model takes little account of much feminist researchwhich has shown that in such settingswomen tend to bear a disproportionateamount of domesticresponsibilities (Rose 1982)and that living in isolatedfamily units can be dangerousfor women and children(Barrett & McIntosh 1982, Campbell 1983). The value of communal support and protection can be overlooked in normalisation. Normalisationstrongly promotes the idea that individualswith learningdisabilities should mIx (socially,educationally, at work) with non-disabledpeople. Once againit overlooksthe value many women (or black people, or gay men and lesbians)place on 'self-segregation!or separatismas a way of gainingconfidence and of feelingrelaxed away from the dominanceand gaze of those who oppress them. The more recent development of the self-advocacy movement,which, as I will outlinebelow, is basedon a senseof sharedidentity and solidarity amongst people with learning disabilities,flies in the face of this particular principle of normalisation.There is a world of differencebetween choosing to associateprimarily or exclusivelywith those like oneselfand effectivelybeing forced to, as hasbeen the casefor so long with peoplewith learningdisabilities. In seekingto overcomethe negativesides of past services,normalisation principles can sometimes advocate things, suchas primarily associating with non-disabledpeople, which canamount to throwing the baby out with the bathwater.
In highlightingthe recentcritiques of nonnalisation,I am in no way suggestingthat the whole ideology is worthless.It has been immenselyvaluable in improving the fives of millions of peoplewith learningdisabilities. Nevertheless it is a flawed conceptand therefore needs critical 74 analysisand crucially anti-discriminatorypractice needsto be built into its implementation. Without an underlyingvaluing oC and respectfor, difference,the tendencywill inevitablybe towardschanging people with learningdisabilities into what societywants them to be, instead ofvaluing them for who they are.
Seff-advocacy
If normalisationis basedon the premisethat it is societywhich handicapspeople by the limited and devaluedexperiences it offers and that the way to overcomethis is to increasepeople's socialstatus, it follows that individualsshould be given a say in the way they five their fives. Self-advocacyis the obviousvehicle for this. As with the normalisationmovement itselfý the history o,f organisedself-advocacy can be tracedback to Scandinavia(Sweden specifically) in the late 1960s.It gainedmomentum in North Americain the 1970sand establisheda firm hold in Britain in the 1980s.
Self-advocacyhas a number of meaningsand operateson a personal and political level. Individualsvoicing their opinions about the day servicethey are offered, a users'committee Raisingwith the day centre managementteam and representativesof people with learning disabilitieson Social ServicesDepartment planning committees are all examplesof self- advocacy.Essentially the term refers to peoplespeaking up for themselvesand on behalf of others and as such clearly does not only apply to people with learning disabilities.(Citizen advocacy refers to non-disabledpeople acting as advocates for people with learning disabilities,usually on an individualbasis. ) Someindividuals with leaming disabilitiesmay be naturallyassertive, know what they want and not be shy about coming forward. Othersmay needstructured and systematicteaching and supportto understandthe conceptof 'rights, to be ableto communicateeffectively with othersand to be able to operatein a group (Williams andShoultz 1982). In Britain today there is a national organisationcalled People First, which is run by a small group of peoplewith learningdisabilities, with help from non-disabledsupporters. It e.,dsts to provide information,support and training to other peoplewith learningdisabilities and staff in services.In addition, there are numeroussmall and local self-advocacygroups as well as severalother larger andwell known groups acrossthe country, suchas AdvocacyIn Action in Nottingham and Skills For People in Newcastle,which perform largely the samefunctions. 75
Many day services,especially Adult Training Centresor SocialEducation Centres,have user committees,although there is little information or researchto indicate what role the groups play andhow effectivethey are in instituting change.
Self- advocateshave produced information and training packs(see for exampleBrindley et al 1994,Skills For People 1994).People with learningdisabilities are increasinglybeing askedto act as consultantsto academicteaching courses, research projects and to the media. On the more creativeside people with learningdisabilities are occasionallyto be found on the stageor on televisionas actors, although it must be said,only in 'disabilityarts groups!or when the part is specificallythat of a learningdisabled character. Some people with learning disabilitiesare also finding their voice in mattersof social policy that go beyond learning disability services, but which neverthelessaffect their lives: for exampleexpressing their opinionson how the law shouldtreat them when they havebeen the victims of crime (Williams 1995); or peoplewith Dowifs Syndromeexpressing their views on the plasticsurgery conducted on children,or the abortionof foetuses,with their condition(Young PeopleFirst 1994).
Despite its many achievementsand the irreversiblenature of the development(it is hard to imaginethat any serviceprovider is going to say in the future 'we've changedour minds,we don't think serviceusers'views are important after all), the self-advocacymovement has not had anythinglike the sameimpact on servicesas the normalisationmovement. This is because althoughnormalisation meant a radicalre-shaping of services,it did not fundamentallyalter the power base:non-disabled people were still left in chargeof the direction servicesshould and would take andthere was, and still is, an attitudeof 'we know best'.For example,the voicesof (albeit the minority oo peoplewith learningdisabiEfies who said they would prefer to stay in hospitalswere drownedout by non-disabledconverts to normafisation,who put that down to their beinginstitutionalised and not knowing what cornmunitycare had to offer. That may well be the case,but the fact remainstheir voiceswere not heardand it is an exampleof how two philosophieswhich do go very well together,can nevertheless sometimes conflict.
Learning disability serviceshave still not yet fully graspedthe nettle of genuineservice user involvementin all aspectsof serviceplanning and delivery.Their tardinessin this matter is not a reflection on the lack of ability of peoplewith learningdisabilities to contributein this way: the developmentof the Powerhouse(see pl. 05 ) is an outstandingexample of how women 76 with learningdisabilities were involvedat every stageof a complexplanning operation. Rather, the reluctanceof servicesto fully take on board the needfor empowermentand self-advocacy hasbeen due to the usualreluctance of those in power to relinquishit. To acknowledgethat peoplewith leamingdisabilities have an important part to play in the developmentof services canbe seenby someservice providers as an erosionof their professionalskills and training.In short it can be perceivedas a threat and thereforeresisted. This may work at a sub-conscious level; at any rate it is rarely openlyacknowledged and discussed.Certainly some professionals do voice criticismsof the way self-advocacyis practised,but theseare usuallyweak and do not stand up to rigorous scrutiny: for example, a common criticism is that the movementis dominatedby the more ableand articulatepeople with le=ffig disabilities.This is certainlythe case,but it is also the casefor practically any other emancipatorymovement and to a large extent is inevitable- the most able are always going to have an advantageover the less able, certainlyas far as the more visible side of the work, suchas public speakingand direct action, are concerned.Self-advocacy is also cri6cisedfor not being democraticenough, that it is, in effect, a few individualspurporting to representa large numberof other people. Again this true, but far from uniqueto the self-advocacymovement:
When it comesto the challengeof self-advocacy,it seemsthe 'able!world can develop a scrupulous concern for the ideals of democracy - forgetting, perhaps,that in any communitydemocracy means that a few politically active people representthe rnýority who are not politically active at a (Shearer 1986:179).
Another important reason why some serviceshave been slow to take up some of the challengesof self-advocacyrelates to weighingup its obviousadvantages, with someof its less obvious disadvantages.The downside of both the theory and the practice of empowering serviceusers to speakup for themselvesand, where necessary,challenge service providers is rarely put. However sucha critique is needed,otherwise there is a dangerthat the rhetoric of empowermentcan act as a smokescreento hide the very real vulnerabilityof somepeople. As yetýno respectfulreplacement for the old paternalisticapproach of 'looking aftee people has emerged(Brown, personalcommunication). An exampleof this from the field of sexualityand learningdisability is the stancetaken by a leadingself advocateand peer educatoron the issue of learning disability servicesproducing sexuality guidelines.He felt that such guidelines shouldnot be produced,as other, 'ordinary'people did not haveguidelines written about their sexuality(Brown, personalcommunication. ) This is partly true, althoughone could arguethat laws and socialnorms regarding sexual behaviour act as guidelinesin themselves.Also suchan 77 argument overlooks the fact that such guidelinesare not there primarily to regulate the sexualityof people with learningdisabilities, but rather to ensurea respectfuland consistent responseto individualsby staff andmanagers in services.
Some self advocateswith learningdisabilities, particularly those who have public profiles at conferencesand in the media, seem not to recognisethat as people with mild learning disabilitieswho five relatively independentfives, they may have little in commonwith people with much more severelearning disabilities, who are highly dependenton othersfor aUaspects of their personalcare and development.An exampleof this attitudeis seenin a 1994television programmeon self advocacy,in which the following statementwas made:
The differencebetween mild learningdifficulty and severelearning difficulty is less than most people would think. We all come from the samebackground, from but have the we came separatedschools ... we samerights, whateverour disabilityis to speakfor ourselvesand learnthe skills to do that (Bull 1994).
Such a view, in my opinion, masksthe very significantand specialneeds of less able people. Their real inability to make sophisticatedjudgements about their sexuality(or indeed about anything)may be overlookedby someof the more able self-advocatesin their understandable drive to claim the right to be treatedthe sameas everybodyelse in society.
Deihyfitulionalisafion
As I haveoutlined above,the growth of large institutionscontinued throughout the nineteenth and twentieth centuries,reaching a peak of some 64,600 people with learningdisabilities in hospitalsin the mid-1960s(Bone et al 1972). It was in the late 1950sand early 1960sthat dissatisfaction with institutions began to surface publicly. Interestingly the earliest dissatisfactionswere registeredin the legal field, rather than the medical,psychological or social work fields: in 1951 a National Council for Civil Liberties (NCCL) report 50,000 OuWde the Law drew attentionto the lack of legal safeguardsin the detentionof peoplewith learningdisabilities in hospitalsand highlightedthe fact that hospitalshad a vestedinterest in retaiiiing patientsrather than releasingthem (Korman and Glennerster1990); and in 1957the Royal Commissionon the law relatingto mentalillness and mentaldeficiency contained what is widely regardedas the first referenceto communitycare (Renshaw et al. 1988).Despite the fact that ideasabout the undesirabilityof institutionaUsedcare were forming in the late 1950s, it was only sometwenty yearslater that actualhospital closures were contemplatedand some 78 forty years later the processof deinstitutionalisationis still far from complete.Government figuresindicate that in 1993some 16,000people with lean-dngdisabilities were still in hospital (Cambridgeet al'1994).
During the 1960sand 1970sthere were severalinfluential publicationswhich contributedto public and professional awarenessthat institutions were inappropriate places of care. Goffmads (1961) work on asylumsintroduced the concept of the 'total institution! and demonstratedits damagingeffects on its inhabitants.General studies of the poor conditionsof mentalhandicap hospitals, such as Morris' Put Away (1969) and more specificinquiries into allegationsof ill-treatmentand appallingconditions, such as the Ely Hospital Report (DHSS 1969) contributedto the drive to considerwhether hospitals could ever be suitableplaces for long term care.It is importantto note that reports and criticismsof mentalhandicap hospitals did not appearin isolation. Rather they were part of a growing awarenessof the negative effectsof institutionalisationon other peopletoo, for examplethe elderly (Townsend 1962, Robb 1967). The 1971 White paperBetter SeMcesfor the Mentally Ran&capped and the 1979 Jay Report on mental handicapnursing and care, both recommendedrunning down hospitalsand developingcommunity based services.
As well the changesin policy promptedby humanitarianconcern for the peoplewho received the servicesand a belief that people'sbehaviour and symptomscould be successfullymanaged in the communityby use of medication,there can be no doubt that economicfactors played their part in deffistitutionalisation.Indeed some commentatorsargue that money was the decidingfactor (Korman and Glennerster1990).
The argumentsagainst hospital care and for communitybased services have beenwon. Lone voices, such as that of Rescare(an organisationlargely of parents of people with leaming disabilities,which campaignsfor the retentionof institutionsalbeit in the form, somewould say guise, of Wage communities) are not credited with much authority or influence by professionalsin the learningdisability field (Collins 1997.) The fact is that most of the hospitals which are not already closed are actively working towards that end. However, a note of caution needsto be soundedhere, as some commentators(see for exampleCollins 1995) arguevery convincinglythat someof the more recentdevelopments, such as learningdisability hospitalsbecon-dng NHS Trusts,are working againstthe deinstitutionalisationprocess. 79
Concernshave, of course,been expressedabout the kinds of cornmunity servicesthat are replacinghospitals. As community implicitly, and sometimesexplicitly, meansfamilies and families usually meanswomen, there were many fears that the impact of community care would meana significantincrease in women'sunpaid caring responsibilities 07inch and Groves 1983,Dalley 1988).However my own involvementin, andknowledge of, peoplewith learning disabilitiesbeing resettledfrom hospitalsinto the communitysuggests that the overwhelming rnýority do not return to five with their families,but rathermove into staffedprovision in the statutory,voluntary or privatesector. Research evidence confirms this (Donnellyet al 1994).
Evaluatingthe successor failure of communitycare servicesis no easytask and is often not evenattempted on a formal basis.However, the need to do so seemsstrong, for as history shows,reforms which were initially well intentionedcan inadvertentlyturn into repression, given the right conditions(Ryan and Thomas 1987).When we take into accountthe fact that researchnow showsthat communitycare is not, in factýcheaper than hospitalcare (Emerson et al 1994, Cambridgeet al 1994), it is not beyondthe realmsof possibilitythat somemight startto arguefor abandoningit andrebuilding hospitals.
Probablythe most thorough evaluationof communitycare for peoplewith learningdisabilities is that carriedout by the PersonalSocial ServicesResearch Unit (PSSRU)at the Universityof Kent (Renshawet al 1988,Knapp et al 1992,Cambridge et al 1994). Generallyspeaking most of the improvementsin people!s fives and skills were madeduring the first year after leaving hospitaland little or nonein the subsequentfour years(Cambridge et al 1994,1996).Although the resultsdo appearon one level somewhatdisappointing, in fact it would be wrong to judge them at face value. In terms of individual satisfaction,most people were happier in the community than in hospital. Taking people!s own long histories of disadvantageand discriminationinto account,there shouldbe no reasonto expectthem to 'improve!after a mere five year period and certainly no reasonto even contemplatewhether it is 'worth! resettling peoplefrom hospitalinto the community.After all, living in the communityalongside everyone elseis not just aboutattaining certain skills or behavingin a certainway. As the authorsof the studythemselves state:
Beyondquality of life outcomesand individual abilities fies the centralissue of humanrights. Every one shouldhave the right to developtheir full potential 80
life fullest Ordinary, harder and to experience to the ... everydayexperiences are to achievein hospitalthan in communitysettings (Cambridge et al 1994:105).
Leaming disability and sexuality
Histoficalperspectives In order to understandhow the sexualityof peoplewith learningdisabilities is viewed today, it is necessaryto understandhow it was viewed historically.Similarly in order to understandthe historical perspectiveon sexualityýit is necessaryto look at the way society viewed people with lean-dngdisabilities more generally. I have alreadybroadly outlined the way society viewed and treatedpeople with learningdisabilities in the first half of this chapter.Therefore I shallconcentrate here on two of the prevailingstereotypes which affectedthe way societysaw peoplewith learningdisabilities and sex.
The first of these was the stereotypeof people with learning disabilitiesas being 'eternal childrerf. Becauseof their limited intellectualcapacity, people with learningdisabilities were consideredto forever havethe mind of a child. They were associatedwith child-like interests and pursuitsand often treatedas if they were children(Kempton 1972,Craft and Craft 1983). In contrastto this imagewas the other stereotypeof peoplewith leaniffig disabififiesas being potentiallydangerous. This was basedon the idea that they were unableto control themselves and historical1yit had sometimesalso been believed that they possesseda 'super-humaiY strength,so they could not easilybe controlledby othersa-lattersley et al 1987). If thesewere the generalviews held about peoplewith learningdisabilities, then views about their sexuality,or lack of it, fitted into those distortedframeworks. Within the 'eternalchild' context,people with learningdisabilities were thought quite simplynot to be sexualbeings. As children were once consideredto be asexual(this idea itself has undergonemuch revision (Wyatt et al 1993)) then peoplewith learningdisabilities, if they werejust overgrownchildren, must also be asexual.Whilst this belief was held, any signsof sexualinterest or arousalwere ignored, repressedor misunderstood.In addition, and this is a crucially important point for understandinghow sexuality issuesfor people with leaming disabififiesare managedor mismanagedtoday, it was thought essentialto keep them in a state of ignoranceabout sex. Just as it was unthinkableto talk to young childrenabout sex, so it was unthinkableto talk to adultswith learningdisabilifies about sex - protectingtheir natural innocencewas the priority 81 andthis fitted into an 'ignoranceis bliss' philosophy.Within the belief systemthat saw people with learning disabilitiesas potentially dangerous,the effect this had on ideas about their sexualityare clear:it was thought peoplewith learningdisabilities would have an uncontrolled sexuality,that they would be'over-sexed',sexually promiscuous. In short they were thoughtto be a potentialsexual threat to others(Koegel andWhitmore 1983).
In summarythen we can see that with the first set of beliefs, it was people with leaming disabilitieswho neededto be protectedfrom all the sexthat was going on in society,and in the secondset of beliefs,it was societythat neededto be protectedfrom a the sex that people with leamingdisabilities had within them. It is of coursethe casethat thesetwo belief systems are inherentlycontradictory, as Craft (1987) has observed.However that did not stop them from both becomingvery powerfully held 'truths', which exerted a powerful influenceover attitudesto, and servicesfor, peoplewith learningdisabilities. The legacyof those beliefscan still be observedtoday, asI will explainlater.
Another belief systemwhich it is vital to understandbecause of the devastatingimpact it had upon the fives of people with learning disabilities,is the eugenicsmovement of the late nineteenthand earlytwentieth centuries. Amongst others, people with learningdisabilities were thought to be a threat to the 'stock of the natiorf. Fearsgrew that the national heritageof intelligenceand ability was being erodedby those at the lower end of the social scale:'feeble- minded women are almost invariably immoral, and if at large, usually carriers of venereal diseaseor give birth to children who are as defective as themselves'(Fernauld cited in Rosen,undated). Becausethe national gene pool was thought to be at risk, action was considerednecessary to stop such 'unfit' people from reproducing.The strategy to prevent people with learning disabilities,(as well as people with epilepsy and people with some physicaldisabilities) from reproducinghad two main approaches:one was the continueduse andfiuther developmentof isolatedinstitutions where the sexeswere segregated,which I have alreadydescribed; and the other, which was adoptedmore in the USA than Britain, was the introductionof compulsorysterilization laws. Sterilizationwas thought to be a desk-ableoption because:
it is better for all the world, if instead of waiting to execute degenerate offspring for crimes, or to let them starve for their imbecility, society can prevent those who are mwffestly unfit from continuing their hind. The 82
principlethat sustainscompulsory vaccination is broadenough to cover cutting the fallopian Three imbeciles is (Buck tubes... generations of enough v. Bell, 1927).
Although there were people with learning disabilitieswho were sterilized in Britain, the concentrationin this countrywas on institutionalisation.However, it was thought advisableto use both tactics ie institutionafisingpeople so that they could be 'trainedand socialised,then 'voluntarily'sterilizing them with a view to reestablishingthem back in their own communities (Blacker 1950).
Within the large institutions,people with learningdisabilities were segregatedfrom the rest of societyand the sexeswere strictly segregatedfrom eachother (Potts & Fido 1991). Although this segregationof the sexeswas clearly to prevent any heterosexualactivity and, most importantly, to prevent reproduction, it was also, initially, on grounds of propriety. For example in the nineteenthcentury, the Commissionersin Lunacy complainedwhen they discoveredthat an asylummortuary containedcorpses of both sexes;'an arrangement,we think, objectionable!(1871: 13 1).
It is importantto note that the Ireatments'of insfitutionalisationand sterilizationwere imposed not only on people who we would recognisenow as having a learningdisability. The 1913 Mental DeficiencyAct that the 'moral defective' Moral createda new categoryof person, of . defectiveswere thought to be thosewho might be sexuallyvulnerable, sexually promiscuous or who might behaveinappropriately in public. A large proportion were in fact women who had illegitimatebabies and who had nowhereelse to go (Potts and Fido 1991).In additionto this was the fact that for an unmarriedwoman to havegiven birth to a babywithout the means or ability to maintainit was in itself groundsfor certificationas 'feeble-minded'under the 1913 Act. This certification was for life, although subject to a five year review. I have myself worked with a numberof older women who were sentto mentalhandicap hospitals because they had had children,or for, asthey themselvesdescribed it, 'going with the men!.Some thirty or forty years later they were still there. Many of the people who were originally sent to hospitalsas moral defectivesor 'feeble-minded'may neverhave had a learningdisability at all. However after a whole lifetime of institutionalisation,they are often indistinguishable,at least superficially,from thosewho do. 83
Giventhat society oncehad sucha negativeand stigmatisingattitude towardsthe sexualityof people with learning disabilities,we need to understandboth that things have changed considerablyfor the better andwhy the changeshave happened.
Contemporaryperspectives
In contrast to the past, it would be unusualnow to find many people who have significant contactwith peoplewith learningdisabilities who would denythat they havesexual feelings or rights.There is evidenceto suggestthat parentsof peoplewith learningdisabilities tend to find it more difficult to accept their sor& and daughters'sexuality than professionalcarers do (Squire 1989, Rose 1990). The reasonsfor this undoubtedlyvary, but include the fact that parentsobviously have a much greateremotional bond with their childrenthan professionals do with, their clients and this leads,amongst other things, to parentstending to take a much more longer term view of the issuesthan professionals.Priorities for considerationand action sometimesalso differ betweenparents and professionals(Rose and Jones1994). However, the stereotypesof parentsof peoplewith learningdisabilities as being completelyunapproachable and refusingto discusssexual matters are largely myths (Brown 1987,Ryan 1993).As Craft haspointed out 'parentsgenerally are not good at helpingtheir childrenachieve psycho-sexual maturity.Many a child gets there in spite of ratherthan becauseof parents'(1983 a: 4, original emphasis).Parents of people with learning disabilities,therefore, should not be judged any more harshlythan other parents,if they do not wholly welcomesigns of developingsexuality in their daughtersand sons.
Professionals,who, as I haveoutlined above, were at the forefront of the repressivemeasures takento denypeople%rith learning disabilities their rights to sexualexpression in the nineteenth and twentieth centuries,have, on the whole, undergonea considerableshift in attitude and professionalpractice. Although negativeattitudes persist amongst significant numbers of staff working in learning disability services(Johnson and Davies 1989), most acceptthe sexual needsof their clients.The essentialissue for today'sservice providers is no longerone of denial andrepression of their clients!sexuality, but the managementof it (McCarthy 1991).However before I outrme how sexualityissues are managedin learning disability servicestoday, it is necessaryto examinewhat prompted'SUcha huge slffi in attitude. 84
There are two separate,but connectedmovements, which are usually credited with having producedthe change.These are firstly the developmentduring the 1960sof a more liberaland open attitude towards sexual matters in society generally; and secondly the adoption of principlesof normalisationin learningdisability services,which, as I have alreadyexplained, meant giving people the opportunity for as ordinary and 'normal' a life as possible. Opportunitiesfor sexualexpression had to, in theory at least,be includedin this process.
However there is a third factor which is not given prominencein the literature when the changein attitude and practiceis discussed(eg Segal 1983,Van Zijerfeld 1987) but which I considerto be as influential as the first two factors, if not more so; namelythe widespread availabilityof e&ctive contraception.The availabilityoý in particular the contraceptivepill (which was not freely and overfly availableto unmarriedwomen in Britain until 1974)meant that for the first time in history, peoplewith learningdisabilities, like anyoneelse, could have sex 'without inevitably having children. Given the great fears about people with leaning disabilitiesreproducing and the draconianlengths society and professionalswere preparedto go to preventthis, one cannotbut fail to seehow importanta role contraceptionhas played in effectingchange.
By looking at how attentionhas been paid to the sexualityof peoplewith leaniing disabilities, we can seewhat the priority areasare and how thesehave changed over time. For example,a review of the literature of the 1970sshows a clear emphasison the right and need for sex education.Alongside this, and indeedwithin the suggestedsex educationcurricula, was a strongbias on the themesof heterosexualdating and marriage.Wolfensberger (1972), whose beliefs about sexualityfit into the models which understandit as a strong biological urge, arguedthat it was simplynot fair to exý certaingroups in societyto remaincelibate. He saw sexualexpression as a right but onlyNithin ceftainEmits: he saw the benefitof a heterosexual relationshipas being so 'self-evidentthat it scarcelyrequires discussion! (1972: 169). Despite advocatingsupport only for heterosexualrelationships, in a rather cryptic final paragraph (pI74) he recognisesthA given time, he might be able to advocate a broader range of possibilities.Like a numberof otherswriting at this time (seebelow), he was convincedof the need for heterosexualcouples to refi-ainfrom having children.He makesno mention of the vulnerabilityof peoplewith lean-dngdisabilities to sexualabuse; indeed he makesno mention whatsoeverof anythingremotely negative about sex at all. 85
Lee (1972) also arguedfor the right for peoplewith learningdisabilities to date the opposite sex and marry, againwith the proviso that they 'should not be persuadedof their right to procreate!(1972: 9). Katz (undatedbut publishedin the samevolume as Lee) makesexactly the samepoints. Once again no mentionis madeof same-sexrelationships, nor of the potential for negativeor abusivesexual experiences. The lack of attentionto the negativeside of sexual life is undoubtedlypartly due to the lack of awarenessat that time that peoplewith lean-dng disabilitiescould be abused.It is unfair to judge past works by today'sstandards. However, it is not entirelytrue that professionalsalways lacked this awareness:Lowes (1977) in describing the need for a sex educationprogramme, mentions that some of the people with learning disabilitieswho were to attend,had experiencedincestý prostitution and exploitationby a more experiencedpartner. Nevertheless, the sex educationthat was subsequentlyoffered focused on heterosexualdating, marriage, reproduction and childbirth and did not include matters concerningabuse or protection.
Somewriters in the 1970's,however, did havea more realisticinsight into the needfor people with learningdisabilities to be more fully preparedfor their sexualfives. Kempton et al (1971, 1972) mention sexualvulnerability and suggestthat it is wise to explicitly teach girls with learningdisabilities that they do not haveto havesex merelyto pleaseboys and to teachboys with learning disabilitiesthat they should not be sexuallyaggressive. (It is a measureof how little things havechanged in sexualrelationships between men and women, that sometwenty yearslater the exact samemessages are still being given in sex educationmaterials, see for exampleMcCarthy andThompson 1992).
Greengross(1976) and Stewart (1979) both wrote similar books about sexualityfor people with a wide range of disabilities,which containedchapters on learning disability. Stewart follows the pattern I have described above in advocating teaching on marriage and reproduction, ornitting referencesto sexual abuse and vulnerability. He makes a useful contribution to knowledge, by highlighting that abnormal or inappropriate environments produce inappropriate behaviours, including sexual behaviours.He calls for a greater understandingof this phenomenon.Greengross acknowledges in passingthat people with learningdisabilities can be sexuallyexploited and puts the blamefor this largely on the lack of sex educationgiven to young peoplewith learningdisabilities. Curiously the two examplesshe 86 gives of the lack of sex educationmaking peoplevulnerable (pl. 02) relateto the onset of wet dreams and menstruation and have nothing to do with sexual exploitation. Like Wolfensberger,both Greengrossand Stewart believethat sex is a biologicalnecessity and that sexual relief is of paramountimportance. Greengrossadvocates the use of pornography, vibrators, artificial penises,rubber dolls, sex surrogatesand prostitutes to ensure disabled peopleget their'necessar sexualrelief An illustration of how much thinking about sexuality in disability serviceshas changedin the past two decades,can be seen in the way both Greengrossand Stewart discusssex between staff and clients. Although both recogniseit could be problematic,they are in favour of it in certain circumstances.Greengross describes staff who would be willing to do it (or indeedwho havedone it) as 'humane!(1976: 108) and 'compassionate!(1976: 109). Stewart declares that manystaff 'musthave been tempted towards it on the groundsof mercy alone!(1979: 102). The use of the word 'mercy, which is normally appliedto alleviatingdesperate or extremecircumstances, does rather imply that not to be able to achievesexual satisfaction causes great sufferingand that staff shouldsee it as part of their duty to relieve that stffering. Almost all sexuality policies and guidelinesproduced in the 1980s and 1990s (see for exampleEast SussexCounty Council (undated),Hertfordshire County Council Social ServicesDept (1989)) clearly prohibit all sexualcontact between staff and clients. This is in recognition of the vulnerability of people with learning and other disabilitiesto being abusedby those with power and authority over them.(See below for a finther discussionof sexualabuse. )
Also in the 1970sthere were two major researchstudies on the marriagesof people with lean-dngdisabilities, something which has not beendone since.The fact that marriagedid not continue to be an area for continued research interest may be due to the increasing acceptabilityfor peoplegenerally, and also people with learning disabilities,to five together without marriage.However it is also a reflection of the fact that despitethe emphasisin early sexeducation on marriage,the realitywas that it nevermaterialised as a genuineoption for the vast rnýjority.of peoplewith learningdisabilities, particularly those who rely on servicesto support them. Nevertheless,the two 1970sstudies were important. Mattinsons 1970 study andthat by Craft and Craft in 1979both depictedmarriage as a predominantlypositive choice and lifestyle for the couples they researched.Both studiesemphasised the complimentary nature of the partnerships,which enabledthe couple to function adequatelyor well as a unit, whereaseach individuars limitations would probablyhave led to a lesssatisfactory outcome. 87
A disappointingfeature of both thesestudies on marriageis the lack of analysisconcerning the fact that there is a strong pattern of the husbandsbeing intellectuallymore able than their wives. This is a phenomenonI have observedin my own social work and sex education practice and which I have drawn attention to in my writing (McCarthy 1996a).Mattinson makesthe observationthat it is a'particularpoint of interestthat the majority of husbandswere more intelligentthan their wives' (1970:183), but she doesnot discussthe point further. Craft and Craft do not pay attentionto the phenomenon,although the informationthat the husbands in their study were indeedgenerally intellectually more abletheir wives is found in table Ia on p.40. We are told that some of the intellectually more able men had a mental illness or psychopathicdisorder, but 12 of the 45 were 'normal'(1979: 40). Scally (1973), reporting his own findings in Northern Ireland and commentingon those of Mattinson, interprets the phenomenonof men being more ablethan their wives in the following way: We can logically assumethat a mentallyretarded girl can be more attractiveto a man than a mentallyretarded malewould be to a female!(1973: 190). This is obviously true, but still doesnot addressthe questionwhy. My own view on this, basedon my work experience,is that women with learningdisabilities are often attractedby the higher social statusof a non-disabledman (see also Chenoweth 1996), and that non-disabledmen are attracted by the fact that they can dominatetheir partnersand shapethe relationshipto meettheir own needs.
The lack of a political genderedperspective on marriageis found in both books at various points.Mattinson, for example,relates a situationwhere a coupleargue and the wife locks the husbandout the housewhile she doesher housework telling him he can come back in when his tea is ready.He then proceedsto attackher, kicking her in the face, cutting her eye,kicking her leg and bruising her spine.Mattinson describesthis incident in the following way: 'This illustrateshow Mcdd domesticbattles invitesthe scene... the of usually setsup and violence and is as much of a protagonistas the partnerwho is finally chargedwith assaulf(1970: 13 8). Becausea week later the couple are reconciledand the woman appearsto be affectionateto her husband,Mattinson describesthis as proof of 'positive enjoymentof physicalviolence! (1970:138). Such a naive and unsympatheticinterpretation would certainly not have been unusualat this point in time. The first refuge for women escapingviolent men only openedin Britain in 1972 OPizzey1974) and the natureand extent of domesticviolence only startedto be 88 properlyunderstood once ferninistsand sociologistsgave it the attention it deserved(see for exampleDobash and Dobash 1980,Stanko 1985).
Although Craft and Craft do not overtly excuseabusive behaviour by the men they studied, they do neverthelessdisplay a simplistic and generousview of it. For example,prior to marriage9 of the 45 husbandshad convictions for rape and indecent assault(usually of children),with 6 of the 9 having severalsuch convictions.After marriage,only 2 were re- convictedof similaroffences. This is seenby Craft and Craft as a sign that 'sexuallyactive men, who before marriagemolested childrenafterwar-ds had little or no need to do sd (1979:123 my emphasis).This impliesthat men needa sexualoutlet and if a lawfW one does not exist, they are compelledto find an unlawful one. Such attitudeswere widely held, are clearly a product of their time, and must be seenin that fight. Neither should it be assumedthat authors who once held such views do not changethem as time passesand awarenessincreases: Ann Craft, for example,went on to produce someof the most pioneeringand influentialwork on sexualabuse and learning disability in this country.
Moving on to the 1980s,the first thing to observeis that the volume of literature increases enormously.If the topic of sexualitywas first openedup in the 1970s,it was during the 1980s that it broadenedand developed.Because of the volume of literature in the 1980sand indeed the 1990s( to date ), I do not intend to systematicallyreview all of it, but rather to give an overviewof the issuesit tacklesand prioritisesand to examinehow thesedeveloped from the rathernarrow concernsof the 1970s.In fact reviewingthe 1980sliterature, one can seethat it is still the right and need for sex educationwhich predominatesas a theme.At this point in time, however,the literature presentsus with many practicalexamples of how sex education can, and should, be put into practice (seefor exampleCraft and Craft 1983, Thaler Green 1983,Robinson 1987).Reports of more detailedand specialisedteaching on sexualityissues also emerge,such as teachingmenstrual care to girls and women with learning disabilities (Demetralet at 1983,Fraser and Ross 1986).
In recognitionof the fact that professionalsare not the only oneswho influenceand, indeedto a large extent control the sexuallives of peoplewith learningdisabilities, the literature also beginsto emphasisethe need to understandparents' perspectives (Fairbrother 1983) and the needfor staffto work collaborativelywith parents(Brown 1987,Stevens et al 1988). 89
Reproductiverights, or lack thereof, also become a significantissue for debatewithin the literature in this decade.Examples of specialisedcontraceptive services for women with learningdisabilities are given (eg Chamberlainet al 1984).Within this particular strand of the literature,the contraceptiveoptions are discussedin a very 'neutral'tone, without the more 'political' analysisof the use, over-useand mis-useof contraceptionthat would be offered in lateryears (eg. McCarthy andThompson 1992). The use of the injectablecontraceptive Depo- Provera is a casein point here: during the 1980s it is suggestedas a perfectly acceptable methodof contraception,especially for those women with learningdisabilities who were not thought reliableor motivatedenough to take the Pill regularly(Committee on Drugs, cited in Chamberlainet al 1984).By the 1990s,with the benefit of hindsightregarding the'side- and after-effects,as well as a gendered,political perspectiveon sexualitymatters, it is suggested that use of Depo-Proverashould be challenged,as it 'is disproportionatelyused with women with learning dHEculties,as well as other disadvantagedgroups of womed (McCarthy and Thompson 1992:70). See chapter six for further discussionon contraceptiveoptions for womenwith learningdisabilities.
However, it would certainlynot be true to saythat the controversialside of the debateabout reproductive rights was totally undevelopedin the 1980s.The issue of sterRizationwas a strongtheme of the literature,particularly in 1987and 1989when therewere two high profile legal casesconcerning the sterilizationboth of the under-18's- the 'Jeanette'case - and the over-I 8s - in Re. F. A numberof topical papersappeared at that time, outlining the moral and legal argumentssurrounding sterilization without consent(Roy and Roy 1988, Carson 1989) and examiningthe alternatives(Davis 1987,Tonkin 1987).Reproductive rights in relation to parentingalso begin to be a developingfeature of the literaturein the late 1980s.In contrastto the (what I have suggestedelsewhere as misguided)emphasis on reproduction and looking after babiesthat was sucha strongfeature of much of the 1970ssex educationfor peoplewith learningdisabilities, the 1980sliterature moves onto a different plane. Thus, the plethora of negative myths about people with lean-dngdisabilities as parents are explored and largely dispelled(Tymchuk et al 1987), althoughthe very real problemsof social isolation, poverty; poor parenting models (Andron and Tymchuk 1987) and unsupportive or abusive male partners(Gath 1988)are not glossedover. 90
As well as actually providing sex education,assessing levels of sexualknowledge of people with learning disabilitiesis much written about during the 1980s(Brown 1980,Bender et al. 1983). Detailed checklistsfor assessingwhat information people with learning disabilities alreadyhad were provided (Craft 1983b),although some writers do point out the limitations of such exercises,namely that Iwith the many inhibitions that surround sexuality, the information impartedmay havelittle referenceto the individual'strue knowledgeor attitude! (Leyin andDicks 1987:143).
As well as the developmentof an academicand professionalliterature during the 1980s,there was alsothe developmentof staff training packs(eg. Dixon 1986)and sex educationmaterials designed for learning disabilities.Apart from Dixoifs especially work with people with . SexualityandMentalHand7cap (1988), which is a workbook with ideasfor group exercises, the resourcesare almost always visual ones - the Craft slide packages(1980,1985) and Kemptorfs Life Horizon slides (1988) being excellent examples. CrafVs slides cover appropriate social behaviour, menstruationand reproduction, whilst Kemptorfs look at physicaland sexualdevelopment heterosexual relationships, sexual health issues, reproduction and appropriateand inappropriatesexual behaviour. The Kempton pack, despitethe breadth and depih of the issuescovered, pays only cursory attention to same-sexrelationships. The Brook Advisory Centre!s Not a child anymorepack (1987) is an exampleof a differentkind of visual resource: a workpack of pictures and discussionideas, accompaniedby two large anatomicallycorrect (almost correct - they do not have anuses)dolls. The dolls (one female, one male) and the picturesdemonstrate yet againa strong heterosexualbias. It is not until the 1990sthat this particularfeature of sex educationmaterials begins to change.
Becauseof the developmentof interest,skills andmaterials for supportingpeople with leaming disabilitiesin their sexualfives during the 1980s,both statutory and voluntary serviceswere obliged to 'legitimate' this new area of work through the adoption of formal policies and guidelines(see for exampleDumfries and Galloway Social Work Dept. (undated),Mencap Homes Foundation (1987)). Within these,the organisationalcontext for the work is made clearthrough the settingout of the principles,values and procedureseach service expects its staff to adopt. For a thorough examinationof the issuesconcer-ning policy development;see Booth andBooth 1992,FnAn 1994. 91
The expansion of literature on sexuality issues shows no sign of abating during the 1990s, quite the opposite. More and more sex education materials have been produced and the academic and professional joumals reflect the increasing level of interest in the field. I propose here to review the 1990s literature in a way which will demonstrate how new themes developed and how old ones were revisited and reworked.
Probablythe most striking developmentin the 1990sis the way in which the real, ie often uncomfortableand harshcircumstances, of people!s sexualfives were confronted(McCarthy and Thompson 1991). Rather than the approachwhich had often been taken in the 1970s, which indirectly!implied that people with lean-dngdisabilities could simply be educatedinto having the samekinds of sexualfives as other people, there was more of an emphasison understandingand respectingdifference: for example,of the assumptionthat people with learning disabilitiesare just the same as other people, Hingsburger and Ludwig contested VAile this may be laudatory,it is alsoa mistake.People with disabilitieshave a vastly different fife history than those without disabilities'(1992: 23). This is not to say however,that despite their differentand disadvantagedlives, many people with learningdisabilities do not wish to be like other, non-disabledpeople. Indeed the desirefor that is strong in many people,a factor which haslong beenrecognised (eg Edgerton 1967).In the 1990sit was further demonstrated how this wish could, in itselfýfinther disadvantagepeople; for examplein order to be in a sociallyvalued relationship,women with learningdisabilities, might be willing to acceptsexist or abusivetreatment from their partners(Bums 1993,McCarthy and Thompson1992).
In seeldngto ground sexualitywork in the reality of people!s fives,five major new strandsof work have been developedin the 1990s:positive representationsof samesex relationships, awarenessof genderpower relations,the needfor a multi-racialand multi-culturalapproach to sexualmatters, F[IV preventionwork and a greaterunderstanding of the natureand extent of sexualabuse, especially involving men with learniingdisabilities as perpetratorsof it. As the sexualabuse literature is beingreviewed in its own right (seebelow), I will concentrateon the first four of the new strands.
As I have made clear above, same-sexrelationships were either ignored, marginalised.or pathologisedin the early sexualityliterature. In the 1990showever, sex educationmaterials were produced which, for the first time, were genuinely from an equal opportunities 92 perspective,presenting relationships and sexbetween women and between men as positiveand valued(Lewisham Social Services 1992, McCarthy andThompson 1992). In a way that seems unthinkablecertainly in the 1970sand even the 1980s,some writers are now very critical of homophobiain other people!s work (eg. I-Engsburgerand Ludwig 1992). The concept of institutional homosexuality (whereby all same sex relationships were explained by the argumentthat people had no other choice and their natural heterosexualinstincts were therefore'perverted' by the circumstancesin which they lived), very prevalent in the early writings is now challenged,not becauseit has no validity - for some people in some circumstancesit may be the most useful descriptionof what is happening- but becauseit implies that same-sexrelationships are, by deftition, second best to opposite sex ones (McCarthyand Thompson 1992, Thompson1994).
Sex educationmaterials are still producedwhich marginalisesame sex relationshipsor which underneatha veneerof acceptance,are still essentiallyhomophobic: for example,Monat-Haller (1992) in answerto her own stark question'Are samesex relationships harmful? ' considersthe possibilityof a manwith epilepsybiting off his partner'spenis if a seizurewere to occur during oral sex andthe possibilityof transmittingEIIV or other sexuallytransmitted diseases. As these situationscould just as easilybe appliedto heterosexualsituations, there seemsno obvious reasonto considerthem specificallyin relation to samesex activity, other than to try to presentit asundesirable.
The reasonsfor the shift towards a more positiveview of samesex relationshipsare varied.I would suggestthat the greatersocial acceptance of lesbiansand gay men in somecontexts in the 1990sas comparedto ten or twenty yearsago is a strong contributory factor. Amongst other thingsthis hadled to more workers in learningdisability services being 'ouf at work. The personalagenda of key individuals in organisationscan make a tremendousdifference in creatinga positive attitudetowards homosexuality, even if the serviceas a whole and most of the people in it remain essentiallyhomophobic (McCarthy and Thompson 1995). Clearly EIIVJAIIDShas played its part too; the urgency of the need to provide good safer sex education,particularly to men with learning disabilitieswho have sex with men and the irresponsibilityof not doing so, has in itself being partly responsiblefor the shift in attitude. URV issuesare discussedmore ffiRybelow. ) 93
A genderedpolitical perspectiveon the fives of particularlywomen with learning disabilities has also developedin recentyears. This relatesnot only to directly sexualconcerns, but more generallyto broader fife experiences(Brown and Smith 1992,Williams 1992,Bums 1993). Some writers, myself included,have gone to great lengths to demonstratethat the gender power relations and gender conditioningwhich affect other people also affect people with learning disabilitiestoo. Having worked with men and women with lean-dngdisabilities on mattersrelating to sexualityand sexual abuse, Simpson concluded the f6flowing:
This distinction betweenwomen and metfs experience,needs and ways of expressingthem is an important aspect of people with teaming difficulties' fives. What becamevery clear was the extent to which people with lean-dng difficulties pick up genderconditioning. Although many of them are isolated and/orfive segregatedfives they do not escapegender conditioning (1994: 16).
My own work with womenwith learningdisabUities and that of my malecoHeagues on the Sex Education Team allowed us to seevery clearly that women and men with similar ability and communicationlevels, living in the sameenvironrnents, with the samestaff teams,nevertheless experiencetheir sexualfives in very differentways. My conclusionon this phenomenonis that with regardsto their sexualexperiences women and men with lean-dngdisabilities 'have more in common with their non-disabledcounterparts than they do with each othee (McCarthy 1993:278). This particularresearch project hasbeen part of my on-goingexploration of this.
The reasonswhy this genderedanalysis of the sexualfives of peoplewith learningdisabilities has developedare similar to the reasonsI outlined above regardingthe developmentof a positive attitude towards homosexuality:namely a greatersocial acceptanceof feminist ideas and practicethan in previousdecades, which hasled to feministwomen and supportive,non- sexistmen (in the field of sexualityand learning disability these are almostexclusively gay men) feelingconfident to put their political beliefsinto practiceat work. The fact that feministideas and writings havegained academic status and publishersknow there is a large market for our work (Spender 1981), meansit is now possibleto get work publishedthat previouslymay havebeen rejected as being too radicalor of minority interestonly.
The third of the new strandsof sex educationwork in the 1990sis the awarenessof the need to approachsexuality work in a way that fully incorporatesthe experiencesof black and ethnic minority people.This strandis the least developed(not leastbecause there are relativelyfew 94 black people working in the field), but awarenessis certainlythere now, where previouslyit was lacking. Sex educationworkers have come togetherto shareideas on how best to meet people'sneeds in a multi-culturalsociety (Landman 1994).Baxter (1994) and Malhotra and Mellan (1996) haveclearly outlined some of the factors which need to be taken into account. Although it is relativelyeasy to ensure,for example,that black and ethnicminority peopleare fully and positivelyrepresented in sexeducation materials (eg McCarthy andThompson 1992), this does not meanthat it alwaysdone (eg Craft et al 1991).However, merely reproducing imagesof black peopleis not a very sophisticatedapproach to the issueand certainlyis not an adequateresponse (McCarthy andThompson 1995).There is room for much improvementin this area.
The fourth new developmentin sex educationwork in the very late 1980sand 1990swas a focus on concernsaround safer sex and MV prevention.Unlike with the other more recent developments,the reasonsfo. r this one are stark and obvious,in that HIV was only discovered in the early 1980s.Much of the early work in this country was done by myself and my colleagueson the Sex Education Team (formerly the AIDS Awareness/Sex Education Project). As I have explainedin the introduction in chapterone, the initiative for this work camefforn a perceivedneed to educatepeople with learningdisabilities about the risks of IffV infectionin muchthe sameway the generalpopulation was being educatedat that time. A year or two after the SexEducation Team's work began,one or two other authoritiesfollowed with their own initiatives, although thesewere usually single appointments,often part-time and short-term.The Sex EducationTeam remainsto this day the biggestand most permanentof suchinitiatives.
Most of the IHIIV related work has focused on the production of sex educationmaterials specificallyfor people with teamingdisabilifies (see for exampleMcCarthy and Thompson 1993, O'Sullivanand Gillies 1993,West London Health Promotion 1994). Whilst this work on safer sex educationis far from easy,it is nevertheless,the most straightforwardof the variousstrands of HIV relatedwork. Less attentionhas been paid to more complexareas such as the need for servicesto take on board the full extent of their protectiveresponsibilities if peoplewith teaming disabilitiesare at risk and unableto protect themselves(McCarthy and Thompson 1994a,Thompson 1995). What is also often missingfrom the literatureis a clear genderedperspective for doing HIV preventionwork with people with teamingdisabilities, 95 which acknowledgesthe disadvantageswomen often face in seekingto negotiateand practice safer sex. Elsewhere,I have highlighted this weaknessand offered suggestionsfor good practice(McCarthy 1994,McCarthy 1997).
Although there is by no meansa consensus,a strong voice has emergedwithin the learning disabilityfield, arguing that all BIV preventionwork must prioritise the needsof men with lean-dngdisabilities who have sex with men. The reasonfor this is that, as with the general population in Britain, men who have sex with men continue to be at the highest risk (Mompson 1994,Cambridge and Brown 1997).
Finally, another significant developmentin the 1990s,which will undoubtedlycontinue to grow, is. the involvement of people with learning disabilitiesthemselves in providing sex educationand producingsex educationmaterials. The organisationPeople First hasa sexuality officer who providesboth peereducation and staff training and examplesare growing of visual (PeopleFirst undated)and particularlyvideo resources(South East London HealthPromotion Service1992, Walsall Women's Group 1994).Although thereare one or two examplesof this Idnd of work from the 1980s(eg. the video BetweenOurselves 1988) the developmentof peer educationby peoplewith leanfmgdisabilities has grown out of the self-advocacymovement I describedearlier in this chapter.See chapter seven for further discussionof this.
Sexualabuse and leaming &sabilides As I outlined in chapter three, it was during the 1970sthat awarenessgrew regardingthe extentand nature of the sexualviolence experienced by manywomen and children.However it is only sincethe late 1980'sand early 1990's(somewhat earlier in North America)that we have begunto realisewhat should havebeen apparentfrom the start of the process- namelythat peoplewith learningdisabilities, especially women, were not only just as likely to experience sexualabuse in the sameway as other adults and children do, but moreoverthat they were particularlyvulnerable (Sobsey1994). Ironically, parents ot particularly,women with learning disabilitieshave alwaysknown this and havebeen traditionally labelled as 'over-protective!by professionalsfor concerns,which arenow acknowledgedto havebeen justified (Brown 1987).
In developingan awarenessof the extent and natureof the sexualabuse, professionals have been slow to listen to what people with leaming disabilitieshave to say about their fives. 96
However in recentyears this has changedand the developmentof both sex educationgroups and individualwork, as well as the developmentof more generalself-advocacy networks has enabledmany people with learningdisabilities to speakout aboutabuse they haveexperienced.
Another influential factor in the increasingawareness of abusehas been the developmentof IUV work outlined above:without the existenceof IHIIV/AIDSmuch less would be known about the sexualabuse of peoplewith learning disabilities.At first the connectionmay not seemobvious. Despite a numberof pre-existingsex educationinitiatives in learningdisability services,which would undoubtedlyhave continued, it is the casethat becauseof MWAIDS, a number of high-profile sex education initiatives were developedfor people with learning disabilitiesthat would otherwisenot have comeinto existence;these developments were very significantbecause for the first time they constituteda realfinancial commitment to the areaof work, and made possiblethe employment of specialistworkers and the developmentof resources.It is a sad fact that it took somethingas negativeas IIIV/AIDS to releasepublic moneyto be put into sexualitywork with peoplewith learningdisabilities. It is also ironic that in using money set aside to try to prevent one epidemicaffecting people with learning disabilities, we have helped to uncover another, namely widespread sexual abuse and exploitation.
Sexual abuse of people with learning disabilitieshas been defined in a variety of ways. Definitionsvary in terms of both the acts and consentissues involved. A range of sexualacts are usually clustered together: including non-contact abuse; such as voyeurism and involvementin pornography,and contact abuse;anything from sexualtouch to masturbation andpenetrative acts (see Brown andTurk 1992for a review of theseissues). Brown andTurk (1992) defineabuse as occurring:'where sexual acts are performed on or with someonewho is unwilling or unableto consentto. those acts' and includewithin the assessmentof whether an individualwas ableto consentboth cognitive ability and inequalitiesof power, ie,'whether the personhad the ability to consentto sexualrelationships in generaland/or was able to do so without undue pressurein this particular situation! (1992:49). 1 have previouslydefined it as 'any sexualcontact which is unwantedand/or. unenjoyed by one partner and is for the sexual gratificationof the other'(McCarthy 1993:282) 97
Buchananand Wilkins (1991) distinguishbetween sexual abuse as 'incest,rape, caseswhere violencewas involved'(p. 604), sexualexploitation as 'situationswhere a client was unableto makeinformed choicebecause of lack of knowledgeabout the sexualact andits consequences' (p.603) and professionalabuse which they define as situations'where the personused his/her authority to abuse the professionaltrust placed in him/her to gratify his/her own sexual needs'(p.604).
Matthews hasmade a usefulcontribution to the definition debateby addingthat sexualabuse of a personwith learningdisabilities can take place'where that persorfsapparent wUHngness is unacceptablyexploited' (1994:25) strengtheningthe argument of there being 'barriers' to consent within certain relationships(Sgroi 1989, Brown and Turk 1992). This is helpful becauseit moves beyond the albeit crucial issue of consentand indicatesthat although a person with learningdisabilities may have understoodand been willing to engagein sexual contact, they may still have beenabused, because of the position or motivation of the other person.Some of my other work (McCarthy and Thompsonforthcoming (a)) has taken this a stepfurther and tried to distinguishbetween abuse as definedby the law eg involving a person with a severelearning disability, staff abusinga client or someoneoverpowering the person using physical violence; and abuse as defined by inequality in a relationship, significant differencein ability levels,or where one persods sexualneeds are met at the expenseof the other's.This secondcategory. of abusewhich is much lesstangible and more subjectivethan the straightforward legal definitionswas thought to be important to investigate,as clinical experiencesuggests that much abuseof people with learningdisabilities, especially women, falls into this group (McCarthyand Thompson 1992, Crossmaker 199 1, Chenoweth1992).
As with all commentarieson sexualabuse, this one must recognisethat knowledgeof the true picture of sexualabuse of peoplewith learningdisabilities is inevitablyincomplete. What really happensin terms of what, where,who, how, and why cannotbe completelyknown because sexualabuse by its very nature,is a secretiveand hiddenactivity. On top of this is the shame andguilt that both victims andperpetrators may experience,which inhibitsthem from speaking out about their experiences.What is known from mainstreamresearch on sexualabuse is that most sexual abuseis never reportedto the authorities(see Kelly 1988,London Rape Crisis Centre 1988).There is no reasonto think that things would be any differentregarding reports of sexualabuse by peoplewith learningdisabilities and indeedthere are reasonsto be more 98 pessimisticabout the proportion of abusewhich is disclosedgiven that many people with learningdisabilities have additional communication and sensoryimpairments.
However,the fact that we do not know everythingdoes not meanthat we do not alreadyhave a good picture of sexualabuse as it affects people with learning disabilitiesfrom a growing body of evidence.There have been several prevalencestudies and a smaller number of incidencestudies. Prevalence studies look at specificpopulations and recordhow manypeople have experiencedabuse in their lifetime. Incidencestudies look at the numbersof reported instancesof abuse,within a giventime period, acrossa definedpopulation or catchmentarea ie the numberof new cases.
Chamberlainet al (1984) conducteda prevalence§tudy in the USA- They carried out a retrospectivestudy of casenotes of 87 young women with learning disabilitieswho attended an adolescentclinic. They found a sexualabuse prevalence rate of 25%. Elkins et al (1986) conducteda very similar prevalencestudy at anotherspecialist clinic in the USA and found a prevalencerate of 27%. It is not clearfrom the report of their researchwhether they obtained their data from direct interviewswith the women concernedor whether they relied on case notes.Hard andPlumb (1987) alsofrom the USA, conducteda prevalencestudy in which they directly asked people with learningdisabilities themselves about their experiencesof abuse. The study looked at a whole population of people with learning disabilities,namely those attendinga day centre.A retrospectivestudy of caserecords was carriedout for all 95 subjects and this was followed by individualinterviews with 65 of the original 95. (The 30 who were not interviewedwere either non-verbal,unable to understandthe questions,chose not to be interviewedor had left the service.The numbersof peoplewho had beenabused amongst this group is unknown, but in all likelihoodthere would havebeen some. ) Prevalencerates of 83% for women and 32% for menwere reported.
The first British prevalencestudy was carried out by Buchananand Wilkins in 1991. They surveyeda small group of staff (total of 37) who reported knowledgeof 67 casesof sexual abuseamong the population of 847 people with learning disabilitiesthey worked with -a prevalencerate of 8%. 99
The largestand most recentBritish prevalencestudy was carriedout by a colleagueand myself (McCarthy and Thompson forthcon-drig(a)). We conducteda study looking at aU the 185 peoplewith learningdisabilities who had beenreferred to us for sex educationover a five year period.We found a prevalencerate of 61% for womenand 25% for men.
Dunneand Power (1990) carriedout a smallincidence study in Ireland, looking at the 13 cases of confirmed sexualabuse that had been brought to the attention of a community lean-dng disabilityteam over a three year period at a particular service(serving a total populationof 1500).The datawas collectedfrom staff only andgave an incidencerate of 2.88 per thousand per annum.
The largestand most influentialof the British studiesare Brown et al's incidencestudies (1992, 1995).They surveyedstatutory lean-drigdisability services in the S.E. Thames Region through written questionnairesto senior managerswithin Health and Social Services:the resultant incidencerate in 1992 was 0.5% per thousandper annum.This works out at approximately 940 casesin the UY, althoughthis figure was revisedupwards as a result of the secondsurvey (Brown, Stein andTurk 1995)which demonstratedthat services'forgot' casesover a two year period.These incidence figures are readily acknowledgedto be 'the tip of the ice-berg'and the researchersmade a consciousdecision to tap into knowledgeat the top of the organisations which were about to take on the major commissioningrole within the new internal market structures,rather than closer to the serviceuser. This decisionwas made on the basisthat serviceplanning decisionswould be made at this level and that the capacityof servicesto monitor the incidence of abuse seriously was an important first step in the process of identifyingneed and deliveringproactive services. Also, becauserecognition of the significance of sexual abuse for this client group has been slow to come from professionaland lay audiencesit was thought important to produce the most conservativeestimates and least contestablefigures.
Informationfrom other researchand practice reports does indeed confirm that thesefigures are an underestimate.Although not a researchstudy as such,figures releasedby RESPOND (a London organisationproviding outreachwork and sexualabuse counselling to people with learningdisabilities) showed that 49% of their 100 clientshad been sexuallyabused (quoted in Marchant 1993a).These were often more ablepeople living with minimal supportfrom formal 100 senices but still very much at risk within the wider community.Barry (1994) also collated reports of sexualcrime involving adultswith lean-dngdisabilities, made to the police in Kent which suggesthigher figures and indicate that thereis a pool of peoplewith learningdisabilities who report directlyto the police ratherthan through socialor healthcare agencies.
It is apparentfrom thesestudies that both the prevalenceand incidencerates vary widely. The reasonfor thesevariations is due in part to the differencesin definitionsof abuse,the different populations sampledand, crucially, to differencesin researchmethods, including whether abuserates for women and men are calculatedseparately or together. As has alreadybeen explainedreported instances of sexualabuse decrease the further away from the individualsthe focus of the study is. Therefore the highest rates of sexual abuse are reported when the individualsthemselves are questionedeg Hard & Plumb (1987) and McCarthy and Thompson (forthcoming (a)). When staff are questionedthey can only report those caseswhich they know about andwhich they believewere true. As thereare high levelsof disbeliefwhen people with learningdisabilities disclose sexual abuse, it is not surprisingthat thesefigures are much lower. When seniormanagers are questionedthey are likely only to report those instancesof abusewhich were formally recognisedand respondedto, producingyet againa much smaller number of cases(Brown and Turk 1992). SeeBrown 1994 for further discussionof these issues.
Clearlyif we want to get the most accuratepicture and avoidthe filtering out that takesplace, there is a strong casefor more researchasking people with learning disabilitiesthemselves what their experienceshave been,which is preciselywhat I am doing in this researchstudy. This approachis not without its problemshowever, and theseare explored in chaptertwo. Specificallyin relationto researchingsexual abuse, the rnýor drawbacksare firstly that such researchcan only recordthe abusiveexperiences of thosepeople with learningdisabilities who have sufficientcommunication skills to impart the information.Secondly, it would be abusive in itself for researchersto descendupon peoplewith leanfmgdisabilities, ask them questions aboutthe most intimateand painfid experiencesin their fives,record the informationand walk away. If peoplewith learningdisabilities are to be questionedin this way, it should be done within a meaningfuland useful context for them. The needfor sensitivityand trust to be built up in the researchrelationship is essentialand ideally the sessionsshould offer people'With learningdisabilities something in return. This approachto researchmeans moving away from 101 seeingpeople with learning disabilitiesas researchsubjects and sourcesof information.For example,the data for the McCarthy & Thompsonprevalence study (forthcoming (a)) was gainedduring individualsex education/ counsellingsessions, where the soleaim at the fime of the &rect contact -with the client was to provide them with a servicewhich would benefit them.
Although estimatesof incidenceand prevalencerates have been made using very different methodologies,clear patternsstiff emergewhich paint a picture of the sexualabuse of adults with learning disabilitieswhich has similar characteristicsto the sexual abuseboth of adult women and of children( seefor example,Brown and Turk 1992, McCarthy and Thompson forthcoming (a)). Perpetratorsare overwhelminglymen, they are usually known rather than strangers,often in positions of trust and authority and have often abusedbefore and it is assumed(based on extrapolationsfrom known multiple abusers)win go on to abuseother adults with learning disabilitiesthrough their connectionswith services.Perpetrators come from four main groups:present or past serviceusers with learningdisabilities; family members; staff and volunteers;trusted adultswithin the communitysuch as fwnily friends,neighbours, tradesmenand so on.
Both women andmen arevictims of sexualabuse, with studiesvarying in their reportedfigures from about 75% women to almostequal numbers of men and women ( seeBrown, Stein and Turk 1995). Whilst a number of studies do not investigateany differencesin the abuse experiencesof men andwomen (a mistakein my view), thosethat do, find genderdifferences: specificallythat women are abusedmore than men and that they are lesslikely to be believed (Hard and Plumb 1987, McCarthy and 17hompsonforthcoming (a)). This last point is of particular significancebecause all availableevidence suggests that most victims disclosethe abusethemselves (although they are not alwaysconsciously disclosing abuse, sometimes they inadvertentlyreveal it.) What is significantis that in most casesit is not discoveredon their behalfor picked up from their behaviouror distress.
Senice responsesto sexualabuse Inevitablyservices have responded at different speedsand -Aith differentlevels of conunitment. However, the major strands of the responsehave tended to be the same and have been 102 directedtowards raising awarenessof staff through the developmentof sexualabuse policies andthrough staff training. As I indicatedearlier, many local authorities,health authorities and voluntary organisations;produced general sexuality and personalrelationships policies during the 1980s.During the 1990s some authorities extendedthis work by developingpolicies particularlyfocused on abuse.The majority of these have taken one of two formats: either tackling the whole range of abusethat could be perpetratedagainst adults with learning disabilitiesor sometimesall other vulnerable adults (see for example Greenwich Social Services/GreenwichHealth Authority (undated)) or more specificallylooking at the sexual abuse of adults with learning disabilities (see for example Horizon NHS Trust (1994)). Whateverthe format, the function of the policies is essentiallythe same:to help staff and managersrecognise when abusemight be happeningand to guide them in correct reporting and investigating procedures.Guidance will also usually be given on ways of providing supportto thosepeople with learningdisabilities who havebeen recently abused. What is often missingfrom policies is adequateguidance on, and information, about servicesfor adult survivorsof child sexualabuse and for perpetratorsof sexualabuse.
It can neverhcqyen here (ARC/ NAPSAC 1993)is a comprehensivemodel policy, sponsored by the Social ServicesInspectorate, produced to guide servicesnation-wide on respondingto the sexualabuse of peoplewith learningdisabilities. This documentspecifically delineates four roles which agenciesneed to assignand clarify, namelyalerting, reporting, investigatingand monitoringof abusecases.
Stafftraining initiativesspecifically on the sexualabuse of peoplevAth learningdisabilities have also developedduring the late 1980sand 1990s.To someextent this has taken placewithin servicesby their 'in-house!training departments,but also it has been conductedthrough the consultancyservices offered by specialistsin the field, myself included.In order to facilitate learning disability servicesin developingtheir staff training skills, training manualson the subjecthave been produced (see Brown & Craft 1992, McCarthy & Thompson 1994b). Efforts are also being made to make sure that some mainstreamsexual abusecounselling services are also made accessibleto people with learning disabilities (Simpson 1994). However, as not all peoplewith learningdisabilities who havebeen abusedwould want, need or indeedbe able to make use of long term therapy,it is important to recognisethe value of otherways of supportingpeople through, and after, such experiences.Valuable sex education 103 or assertivenessgroups are held in many servicesfor people with learning disabilities.The value of women'sand men!s groups and indeedof one-to-oneadvice and support sessionsis increasinglybeing recognised (McCarthy and Thompson1992, Craft et al 1992).
YheImv ard sexualabuse For many years it has been acknowledgedthat the law often fails people with lean-dng disabilities.This happensin many ways: there may be an absenceof legislationeg unlike the child protectionlegislation, there is no law to enablestatutory services to removea vulnerable adult with learning disabilitiesfrom an abusive situation in their family home, unless the individualsthemselves make a complaintand wishedto leave.This was recentlyreviewed by the Law Commissionin relation to all vulnerableadults, who recommendedthat 'temporary protection orders'could be used to remove a vulnerableadult to 'protectiveaccommodation' (1995).However, theserecommendations have yet to be actedupon.
There are a numberof distinct problemswith the law and how it is appliedin casesinvolving adultswith learningdisabilities. Laws designedto relateto adultswithout learningdisabilities may be applied to adults with learning disabilities,without any considerationgiven to their firnited capabilitiesand pressuresthat they may havefaced. This is particularlyso in casesof rape or sexualabuse, which often standor fall on the issueof consent.Consent will often be interpretedvery simplisticallyand no accounttaken of why a personwith learningdisabilities may have consented.This also applies to many other victims of sexual crimes, but is particularly poignant for people with learning disabilities. (See chapter six for further discussionon this issue.)
Laws may be in place and havethe potential to work for the benefit of peoplewith learning disabilities,yet the way the law is appliedmay preventjustice from beingdone. There are many examplesof both the police and the Crown ProsecutionService (CPS) decidingnot to pursue an investigationwhere the victim has a learningdisability. This is usually on the ground that peoplewith learningdisabilities are thought not to makegood enough!witnesses. Whilst it is the casethat someindividuals with learningdisabilities do havepoor memoriesand can only managea disjointedand confusedaccount of the incident(s)in question,the samecould also 104 be said of many peoplewho do not have learningdisabilities. Often it is simply assumedthat havinga learningdisabilityper se makessomeone a poor or'incompetenVwitness.
The lack of responsefrom the criminaljustice systemcan be exacerbatedwhen both the victim andthe perpetratorhave learning disabilities, as the assumptionis madethat neitherparty wifl be ableto give a reliableaccount of what happened.Hence very few perpetratorswith leanfmg disabilitiesare ever prosecuted(Brown, Hunt and Stein 1995,Thompson forthcon-dng).
However, caution must be exercisedwhen allegedperpetrators with learning disabilitiesare apprehendedby the law. Researchsuggests that when people with learning disabilitiesare arrestedand the crimirial justice systemworks towards to prosecutingthem, they may be disadvantagedin comparisonto others.They may not alwayshave an a 'appropriateadule to accompanythem during questioning(Clare and GudJonsson1991), eventhough the codesof practicefor Police and CriminalEvidence Act 1984 stipulatethis. In additionthey may havea poor understandingof the caution (GudJonssonet al 1992). Appropriate responsesto perpetratorswith learningdisabilities are discussedmore fully in chapterseven.
A recentreport of researchfindings into crime againstpeople with learningdisabilities served to highlight their vulnerabilityand how infrequentlyjustice is done (Williams 1995). But steps are now being taken to improve the situation. The work of the charitableorganisation VOICE involves campaigningto make changesin the way the law itself and the legal processesaffect people with learning disabilities. For example they have successffilly campaignedfor relatively simple,but very effective,measures like the removal of wigs and gowns from the judges and lawyers (Hepstinall,1994). VOICE have also been awarded a Home Office grant to produce a pre-court witness pack for people with learningdisabilities (Cohen 1994). Both these initiatives seek to make the court a less intimidating place for vulnerablewitnesses.
As well as suggestionsaimed to improve the criminaljustice systemwork for people with learning disabilities,there are also suggestionsabout maldngbetter use of the civil law and theseare discussedin chapterseven. 105
Whilst it is clear that there has beenmuch progressby both statutory and voluntary service providersand researchersover the past few years,it is important to stressthat much of the knowledgeabout abuseand most of the thinking that hastaken place on mattersof prevention and responding after the event, has not been informed directly by people with learning disabiltiesthemselves. However, as I indicatedearlier, this is changingand it is important to acknowledgethat somepeople with learningdisabilities are publicly speakingout aboutabuse. Someare not only preparedto saywhat hashappened to them,but by sharingtheir feelingsof injusticeand anger,they haveinspired other peoplewith learningdisabilities to do the same.A good exampleof this is the work done by a group of women with lean-dngdisabilities in Walsall.After havingmet privatelyas a women'sgroup for sometime, they decidedthat they wantedto sharetheir experiencesand give adviceto other women who may havebeen abused or who feel vulnerablein their personaland socialfives. The result is a video and information pack by, and for, women with learningdisabilities (Walsall Womelfs Group 1994).The self- advocacyorganisation People First has also provided spokespeopleto appearon television programmesand at conferencesto speakfrom the serviceuser perspective about sexual abuse. They alsoprovide staff training on this andrelated issues.
The most significant user-led developmenthas been by a group of women with lean-dng disabilitiesin East London. With supportfrom women without learningdisabilities they have campaigned,raised funds for and designed,a refuge specificallyfor women with learning disabUities,believed to be the first of its kind in the world. They namedit Beverley Lewis House, after a womanwith learningdisabilities who died of neglect.This serviceprovides a safeplace for women with learningdisabilities who needto escapefi7om any abusivesituation (Powerhouse1996a, 1996b).
The quality of the work producedby people with lean-dngdisabilities combined with their uniqueperspective on the issueindicates that researchersand serviceproviders need to work closelywith them to developthe best possiblemeans of protecting serviceusers from abuse andof ensuringa sensitiveand consistentresponse to it when it doesoccur.
Alongsidethe work on the sexualabuse against people with learning disabilities,work has alsodeveloped (although starting later and at a slower pace)on understandingand responding 106 to the sexualabuse by peoplewith learningdisabilities. Thompson (forthcon-dng) has produced an excellentand very thorough exan-driationof theseissues. The most striking feature arising from this work is that all clinical, anecdotaland research evidencepoints to the fact that learningdisabled perpetrators of sexual abuseare almost all male. Indeed it is practically impossibleto find examplesin the literature of women with learning disabilitieswho force themselvessexually on others. As Thompson (forthcoming) explainsthere is 'substantialqualitative as well as quantitative difference!in what can be observedregarding abusive or unacceptablesexual behaviour between men and women with learningdisabilities, with the isolatedexamples of women referring to incidentsof Tirtirig and clinging to men(Sgroi 1989)and to public undressing(Mitchell 1987).More seriousincidents are recorded(See McCarthy and Thompsonforthcoming (a)) but theseare significantin the literatureonly becauseof their rarity.
It is apparentfrom reviewingthis literature that there is little agreementas to why men with leanfmgdisabilities sexually abuse others (and the questionas to why women with learning disalýilitiesgenerally do not is almost entirelyignored). There is also no consensusas to what an appropriatelegal and agencyresponse should be. It has been suggestedthat whilst it is important to keep individuals and their experiencesin mind at all times, neverthelessit is important to understandthe abuseperpetrated by men with lean-dngdisabilities as part of a wider social phenomenonand in doing so recognisethat there is much agenciescan do to design abuse into and out of their services,such as give greater considerationto the combinationsof peoplewith very differentneeds who are placedtogether or developwomen- only services(McCarthy and Thompson 1996). See chapterseven for a fuller discussionof theseissues.
Conchision
As I indicatedin my introductory chapterand havefluther illustratedin this chapter,much of what is known aboutthe sexualityand sexualabuse of peoplewith learningdisabilities has not comedirectly from them. The voicesof individualsdescribing their own experiences,and their associatedthoughts and feelings,is largelymissing. Also, much of the literature,certainly from the 1970s,but also from the 1980sand 1990s,overlooks the fact that much of the sexual contactthat takes placeamongst people with learningdisabilities, just as for any other people, 107 is highly genderedin its nature.The findings of my research,presented in the next chapter, seekto provide someof thesemissing perspectives. 108
CELAYTER5 FINDINGS
Introduction
A total of seventeenwomen with learningdisabilities were interviewed.Of the seventeen,eight had their sexualexperiences predominantly in learningdisability hospitals and sevenhad their experiencespredominantly in communitysettings. Two women had sexualexperiences both in hospitaland the community.Five of the ten women who had spenttime in hospitalshad been, or were on, locked wards. This did not meanthat they were supervisedat all times, however, as all had varying amountsof unsupervisedtime in the hospitalgrounds. Being on a locked ward was an indication of a diagnosisof an additional mental health problem and being detainedunder SectionThree (treatmentorder) of the Mental Health Act 1983. Of the nine womenwho lived or hadlived predominantlyin the communityýsix lived in smallgroup homes run by Social Servicesor voluntary organisations,one woman lived alone in her own home which shehad sharedwith her motheruntil her mother'sdeath and two women had lived in a variety of settings,including their parentalhomes, in the flats of men they were in relationships with and in group homes.
The agesof the womenwere betweennineteen and fifty five, with roughly a third beingin their twenties,a third in their thirties and a third in their forties. Consequentlythe particularneeds and experiencesof the very young and very old are not includedin this study.However, the agesof the women who are includedcould be seenas broadlyrepresentative of most sexually active adults with learning disabilities: there is evidence to suggest that when a sex education/counsellingservice is availableto adultswith learningdisabilities, most referralsare of peoplein their twenties,thirties and forties (McCarthy 1996b).
All interviewswere carried out in learning disability servicesin two countiesof South East England(three in Kent and fourteenin Hertfordshire).As the serviceusers in theseareas are overwheln-dnglywhite British people,this is reflectedin the sampleof womenin this study.All seventeenwomen werewhite; sixteenof them were English and one was Irish, althoughshe had lived in Englandfor most of her ffe. The cultural homogeneityof this group is a reflection of the referralsmade to the sex educationteam where most of this work is conducted,where 92% of referralswere ofwhite British people(McCarthy 1996b). 109
In my wider sex educationand counsellingexperience with women with learningdisabilities, I haveonly had the opportunity to work with four Black British women. Their experiencesand the ways in which they relatedthem did not differ in any discernibleway from thoseof manyof the white women I have worked with. However, as I have remarked elsewhere,I do not considermyself particularly skilled or experiencedin drawing those factors out (McCarthy 1996a).Added to this is the fact that as a white woman, I may not be the most appropriate personto facilitatesuch discussion with Black women.It is hard to be sureabout this, as some researchsuggests that the skills andapproach of workers is more significantthan being of the samecultural backgroundas clients (dArdenne and Mahtani 1989. SeePhoenix 1944 for a fidler discussionof this issue).Nevertheless, the needfor Black and ethnicminority workersto supportservice users and for all serviceproviders to provide culturally sensitiveattention to the sexualityneeds of Black serviceusers is highEghtedin the literature (Dhir 1993,Baxter 1994.)
The levelsof learningdisability of the seventeenwomen interviewedfor this study rangedfrom very mild/borderlineto moderate/severe,with two thirds being towards the more mud end of the spectrum.This is a reflectionof the fact that in order to take part in a studywhich reliedon verbal communication,the women had to have a relatively high level of understandingand verbalskills. However it alsoreflects the fact that most referralsfor sex educationtend to be of the more able people and this in itself is a reflection of the fact that (excludingmasturbation and sexual abuse)there is a correlationbetween higher levels of ability and sexualactivity (McCarthy 1996b).
Only two of the women had recognisablesyndromes related to their learningdisability, both had chromosomaldisorders, one had Down's Syndromeand one had Prader-WiffiSyndrome. Five of the seventeenwomen had additional mental health problems, some with a formal diagnosissuch as 'personaEtydisorder', but most with a more generaldescription of emotional and/orbehavioural disturbance.
Findings
Whetherthe womenenjoyed their sexzwlactivity 110
The first questionsthe women were askedwere designedto open up the subjectarea and to give a generalimpression of how they felt about their sexualactivity, which I would then follow up with more specificquestions afterwards. At this early stagethen, the women were askedwhether they liked having sex and to elaborate,where possible,on what it was they did or did not like. If this seemslike a rather tall order for the very beginningof an interview, it shouldbe rememberedthat this 'interviewphase! of my work with the women camesome way into my overall relationshipwith them. In effect I would alreadyhave had, at the very least, one or two sessions(each lasting approximatelythirty minutesto an hour) with them, so that we could get to know each other, explain what my work was about and generallybuild rapport. So, althoughit may appearon paper (seeappendix for interview questions)that I sat down, said hello and then proceededto ask 'do you like having sexT, this was far from the truth! As I make clearin chaptertwo, my intentionwas neverthat of doing 'purd or objective research.As will becomeapparent from the extractsof discussionsquoted in this chapter,at timesmy responsesto the womenwere sympathetic,at timesmy questionswere going off at a tangent to follow up on something interesting a woman had said, but which was not necessarilywithin the focus of this research.In short,my researchwas very much rooted in the contextof my wider relationshipswith the women.
The womerfs responsesto the generalquestion of whether they liked sex varied from very positive to very negative.Eight women were very negativeand one was mostly negative, accountingfor over half the whole sample.One woman was neutral and four said that whether they liked sex or not dependedon a variety of factors: such as whether they experiencedphysical pain and /or men treatedthem roughly, one woman (EY) said sex was best if it involved love, which for her it often didrft, althoughit sometimesdid; one woman (GN) said she only liked sex with her boyfriend and then only if le did if a certainway and theseconditions were sometimesmet and sometimesnot.
Two women were mostly positive about their experiences,albeitwith somereservations and only one woman (TY) was very positive. Unfortunatelyfor the researchshe was one of the leastintellectually able and leastcommunicative, so it was not possibleto find out much in the way of detail.However sheexpressed in simpleand clearterms the fact that sheliked what she did. As an indirect way of gaugingwhether and how much the women enjoyedtheir sexual activity, they were askedto contemplatewhether they would miss it, iý for somereason, they ill had to stop. As this was a hypotheticalquestion, a coupleof the women found it too difficult and either misinterpretedit (thinldng I was saying she should stop) or gave two inherently contradictory answers.But most women did understand:six said they would miss sex, althoughone of thesewas clear that it was, in fact, the reward she would miss, not the sex itself Td I do it for I it' (GJ). - missthe money.. only what canget out of
Nine women said they would not miss sex, five of them being very emphaticabout this. Interestinglyalmost half the nine women who said they would not misssex had beenamongst thosewho had previouslyexpressed at least somepositive feelingsabout it (seeabove). it is difficult to interpret this clearly, but it implies that even where there were some positive aspects,these were not sufficientto make them want to continue.In addition, two women specificallymentioned having children at this point: eitheras a reasonto continuehaving sex I wonderwhat the childrenwill look Uke'(TM); or to note that giving up sex did not necessarily mean having to give up the possibility of having children 'You can always adopt children! (DO).
Whothe womenhadsex with None of the women said shehad ever had any sexualcontact with anotherwoman, therefore all the information in this study relatesto heterosexualencounters and relationships.However for the women'sviews on sexbetween women, seepl 15. Therewas a 'Aide rangeof contexts for the womens sexualactivity, rangingfrom one womanwho had had one sexualpartner to a number of women who had had many partners. (Ile word 'partner' feels like a very unsatisfactoryterm, as it implies a mutuality that was very often conspicuousonly by its absence.However in the absenceof a better term it will haveto suffice.)
The single most common context for the womeds sexual activity (relating to six of the seventeen)was to havesex only within an establishedrelationship with men they identifiedas boyfriends.However therewas considerablevariety evenwithin this one category:one woman had had only one boyfriendfor a few months;another had had the sameboyfriend for several years;another had had severalboyfriends one after the other.Almost as commonas the above was for women to have sex predominantlywith their boyfriends,but also occasional,ý, with other men who they were not in relationshipswith. Thesewere either a variety of men with learningdisabilities in the sameservice or repeatedlywith one particularman. A variation on 112 this pattern was one woman who had sex regularly with a number of casual partners (includingstrangers) as well as with establishedboyfriends. Three of the women had had sex with a variety of casualpartners only and not with boyfriends.One of thesewomen expressed regretthat she could not find a boyfriendand consideredwhat shewas doing to be a 'second- best!option. Two of the women had arrangementswhereby they had one long-standingand regular sexual partner who was not their boyfliend. In one case the man was actually the boyfriendof the womads bestfiiend and in the other the woman had her own boyfriendwith whom shedid not havea sexualrelationship.
7hewomen'sperceptions of how menexpefienced sex with them Unlike many men with leaniingdisabilities who, becausethey are focusedon their own needs seemunaware of the needsof others (Gardiner et al 1996) and consequentlyoften do not know whether women like having sex with them, all but one of my intervieweesknew (or perhapsmore accuratelythought they knew) how their malesexual partners felt about having sexwith them. Thesesixteen women all thoughtthat the menliked it: six of thesewomen were very sure about this, noddingtheir headsand using an emphatictone of voice to accompany their verbal answers;nine othersgave less marked, albeit still clearresponses; and one women saidthat generallymen did like it, but someappeared not to. Interestinglyone of the ways this woman thought she could tell if the men did not like sex was their use of physicalviolence - 'they try to hit you' (EY). But this was also a way the men expressedthemselves if they did like sex and the women tried to prevent them - 'they beat you up' (EY). The way she distinguishedbetween these acts, of violencewas by interpretinghow the men were behaving moregenerally ie if they did not like the sex 'they lean away'(EY) whereasif they did 'they put their arms around you! (EY). Quite why somemen were engagingin sex when they did not appearto be enjoyingit was not clear, presumablyit could have been somethingto do with changingtheir minds once they had started, somethingabout the environmentwhich upset them eg fear of being caught or observed,not finding themselvessexually aroused. It is impossibleto know. However my wider work ((McCarthy and Thompson 1992,McCarthy 1996b)in this field doesnot suggestthat men routinely engagein sexualcontact with women which the men neitherwant nor enjoy and doessuggest that the men usuallyhave the control to beginand end sexualencounters as they. see fit. 113
The women in this study seemedquite skilled at 'reading'the meds behaviourtowards them; that is, they madewhat seemquite reasonableassumptions from what the men said and did. A numberof the women thereforededuced that the men did like having sex with them because the men initiated it (You can tell they want it, becausethey're all over you (laughs),kissing you andthat, they'reall over you' (BN)), or becausethe men cameback for more, or saidthey wantedsex again(he usedto keep on about if (MED). In only one casedid a woman report that men specificallyexpressed appreciation for her body. However this was tinged with some sadnessand confiision for her, becausethe men made what could be considered'stock' or 'standard'remarks about womerfs sexual body parts, but which in fact did not relate specificallyto her: 'I doný know why they say aboutmy breastswhen I haven'tgot any'(MC). This woman had Prader-Willi Syndrome and the underdevelopmentof secondarysexual characteristicsin peoplewith this conditionis common(Greenswag 1987).
Masturbation
The women were asked whether they masturbatedand if they did, how this experience comparedto having sexwith men.In additionwhether they masturbatedor not, womenwere askedgenerally what they thought about it, ie whetherthey consideredit an acceptablething to do. Two women avoidedthe questionscompletely: one changedthe subjectto one loosely relatedto sexualmatters (whether a blood test was neededto confirm pregnancy);the other changedthe subjectcompletely (to her next meal).I took theseresponses as clear signsthat the womenwere uncomfortablewith the subjectand I respectedthat ie I did not pressthem to returnto the topic.
Of the remainingfifteen women, the responseswere divided equally into three categories: those who were quite definite that they did not masturbateand who had strong negative feelingsabout it ('I think ifs rude, disgustingand vulga? (FM, 'I never play with rqyselýso donl sayI do cos I don't, so thereP(TC)); thosewho saidthey didrft masturbatethemselves, but who did not particularly expressdisapproval (I supposethats alright! OCN));and thirdly thosewho tentatively said they did masturbatenow or had done so in the past C[Smiling]I cant tell you. I used to when I was little! (GJ)). None of the women readily or confidently reportedthat they masturbated,despite my efforts to assurethem I consideredit a perfectly normal and positive activity, somethingmost women did. Of the five women who said they hadmasturbated, only two ventureda comparisonof it in relationto heterosexualactivity: one 114 saidit wasjust different; one said it gave her better feelingsin her body than having sex with men did. Incidentally this was the same woman who was unreservedlypositive about her sexualactivity with men(see above).
Two women expressedthe belief that a woman could causeherself physicalharni through masturbation:one thought it would causesores; the other a more generalinjury which she likenedto an incidentwhen shehad bled after havingsex with a man:
NM: Is it [masturbation] wrong for men and women?
EY: For women becausethey can injure themselves.If they put their handup the front and keep rubbing themselves,they might injure their vagina or somethinglike that. I tell you somethingthat happenedto me, no word of a he, when my ex-boyfriendused to interferewith me when I was on the other way, he mademe pour with blood and I had to stop on the ward. The nursedone her nut andkept me in andtold him to go away.
Two other women expresslysaid it was wrong for women to masturbate,because it could upset men: 'men would think it was funny, it would put them ofF (MC), 'A man might see he!d havethe his He! (GN). you... shockof
About a third of the women referred to merfs masturbationand they generallyviewed this more positively, understandingit in the context of men needingto relieve themselves:one woman, giving the exampleof a particular man, said R- gets thesefeelings and he has to go into the bathroomand get it over with! (KN); anothertook masturbationby mento be a signof them activelywanting sex.For women shesaw things quite differently:
MC: do it lot if they feel inclinedtowards they ...men a sexually a woman and canl get one, but for women it's not a good idea, even if they're in bed, becauseit doesdtprove anythingand it's wrong to do it.
AM: Is it wrong for men to masturbate?
MC: No becausetheýd like a woman to be in their life and they havent got one. Masturbatingis a good sign that they get those feelings,that they get urges.
MM: So men get sexual urges?
MC: Yes 115
AM: Do You think women get sexual urges?
MC: No
AM: Why not?
MC: The only sexualurges a woman can have is if a fella takes her to have sex. Otherwisethey haven'tgot any.
My wider experienceof talking to women with learning disabilitiesabout sexual matters indicatesthat it is not unusualfor the women to hold more positive views about masturbation for men than they do for themselvesand to ascribethis to the notion of merfs sexualurges (McCarthy 1993).It seemsunlikely that the women would have come to this conclusionby themselves.Rather I would suggestthat the women havebeen given messagesabout the 'male sexualimperative' (Jackson 1984). It is possiblethat this view might be directly or indirectly impartedfrom staff, the mediaor other sources.One thing is certain,that it sometimescomes from the women'smale sexual partners:
MC: rve got a boyfriendand if I can!t go out with him, and he!s hard uP for sex andwould Re a good session,he goesinto the toilet -I know becausehe! s told me - and doesthis (mimesmale masturbation).
Sexbetween women [Due to an oversight on my part, one woman appearsnot to have been asked questions relating to this.] Of the sixteen women who were asked, none reported any personal experienceof sex with anotherwoman. All were also askedwhat they thought about sexual relationshipsbetween women. Only one expressedanything close to a positiveview: 'It's up to them, it's their fife, if I if they want to go with the samesex ... caal see anythingwrong with (DO). Two other women expressedviews that were tolerantor accepting sayingit was 'OW (M or 'alright' (TNI). The remainingthirteen held negativeviews, although only three of thesewere very stronglynegative. The most commonlyheld opinionswere that it was 'dirty, 'not nice! or 'wrong'. Clearly most women had picked up commonly held prejudicesagainst same-sexrelationships, although it was not easy to see quite how these attitudes had developed.Only one woman actuallyknew a lesbian(her sister) and she had beeninfluenced by her mother'sreaction -my mum didnI like it very much...my mum thought it was terrible actually ON. None of the other women knew, or evenknew oý any lesbianwomen. It is 116 worth noting that theseinterviews took placebefore three of the major televisionsoap operas (Fzwenders,Brookside and Emmerdale) introducedlesbian characters. Television certainly caninform. people with learningdisabilities about sexualactivities and relationships(see p156 ) and one woman did saythat the only gay personshe had ever heard about was 'the man who usedto be on Eastenders'(BN).
Despitethe fact that I didn't ask them to, a number of women made comparisonsbetween heterosexualand samesex relationshipsand expressedthe view that samesex relationships werevery much'second-besV:
It's nicer to havea boyfiiend'(BN) U you're hard-upfor a man,why go with a woman?'(EY) It's betterwith a manand a woman,rather than two women or two merf (TNI) Ifs alright for a manto playwith a woman,but not two womerf (TC)
The women were not speakingfrom their own experiencehere, as they saidthey had not had any sex with women and moreover their own experienceswith men were largely unsatisfactory(see above).They did not say, or imply, that anyone else had ever discussed lesbiansexuality with them. Neverthelessthey had formed their own opinionsand thesewere largelynegative.
Sexualdremns, thoughts andfantasies. Sexualfantasy, in the commonlyunderstood sense of term as an imaginedscenario, was a difficult conceptto explainto the womenand, possibly due to this, I did not get the impression that any of them had sexualfantasies. It shouldbe noted that I was not asldngthem to tell me what their fantasies they 'planned imaginedhow be! were, merelywhether ever ... sex might or look forward to it, thinking how you'd like it to b&. But no responseswere forthcomingand I put this down to the abstractnature of the questioning.The difficulty of finding out whether people with learning disabilities have sexual fantasieshas been noted elsewherein the literature, albeit with a very different group ie, male sexual offenders(OConnor 1996). It shouldbe noted that the whole issueof fantasyand how it appliesto peoplewith learning disabilitiesmore broadlyis under-researchedand consequently not well understood. 117
The more concrete(because they canbe rememberedas opposedto imagined)topic of dreams eliciteda little more, but still limited response.Two women eachrecounted a good dreamthat hadbeen about sex, but did not give the impressionthat this was somethingthat had happened morethan once.Three other women saidthey sometimesdid havedreams relating to sexuality and thesevaried from very good dreams(interestingly two of theserelated to having a baby) to terrifying nightmaresof being raped and stabbed.However twelve women said they never had dreamsabout sex.Two women pointed out to me, as though my questionwere somehow flawed,that they only dreamtabout nice things:'I dreamgood things, my parentsand that, not sex!(FN1); 'I only dreamabout interestingthings, like going to the pictures,or seasideor on a day trip' (Mli). Thesewomen seemedto be separatingsex from other things which were sourcesof pleasurein their lives.
Ten of the twelve women who saidthey did not dreamof sexwhen asleep,also never thought aboutit when they were awakeeither. One woman saidshe thought women diddt think about sex,but that 'men thought about it all the time! (BN). Shethought this becausea maleffiend, who alsolived in the samehospital for peoplewith learningdisabilities, had told her that 'all the menin the hospitalthink about sex and they wank themselvesoff (BN). Another woman also saidshe thought menthought and talked about sex more than women did andthat this got on her nerves.
Two women saidthey did not dreamabout sex,but sometimesdid think aboutit when awake. For one woman this was having good thoughtsremembering sex which had happenedin the past;for the other it involvedwishing for a better,more private environment,where sex could be morethan just five or ten minutes,people rush here because there arepeople around' (IM).
Overallthe womeds perceptionsof sex in their mindsseemed somewhat sparse. Certainly the wide variety of sexualfantasises and dreamswhich somewomen without lean-dngdisabilities report (Friday 1991)was absent.This contributesto the generalimpression the women give of sexbeing very much a physicalexperience and not onewhich hasmuch, if any,of an emotional or psychologicaldimension. This will be discussedin more detailin the next chapter. 118
Someoneto talk to.
The women were askedwhether there was anyonethey felt they could talk to about sexual matters.Three indicatedthat there were.a variety of avenuesfor this, including stA mother, foster-mother,doctor. In addition,four women eachsaid there was one particularperson they could talk to: for onewoman this was her boyfriend(although she intimatedthat this did not, in fact actuallyhappen very often); for the other three it was their femalekeyworker. A further three women answeredthe questionhypothetically, saying they felt they could talk to their female keyworker,although in fact they neverhad. (Ibey did howevertalk very readilyto me.) Threewomen saidthere was no-onethey could talk to.
However, of most concern(because it was the singlemost common.response and becauseof what it saysabout staff in lean-dngdisability services) was the fact that a numberof womenfelt that althoughstaff were theoreticallyavailable to them to discusspersonal matters, in reality this was not the case:
The staff dodt alwaysfisted (GJ) S. [male nurse] said to stop going on about my boyfriend, he said he didnI want to know abouthirn! (WD I talk to my namednurse about it sometimes,but shedoesift like tafldng about if (DY).
As well asthis was the fact that when staff did listen,their responseswere sometimessimplistic and unhelpful eg to tell the women 'not to do it' (HQ or 'that I shouldnI go with the melf (EY). Also two women were acutelyaware of the power staff had, either to get information about their sexualfives or with regardsto what they might do with it. One woman described how a woman doctor had questionedher,
I told her aboutM. and shesaid "how manytimes has he had your body?" and I had to tell her, I couldnI cover it becauseshe! d ring up and find out anyway. So you haveto tell them the truth! (EY).
Another woman said she did not want staff to know that she had sex with her boyfriend, because'theyll stop my money if I teU them! (TC). In fact this was not true, as the staff did know andthey hadnot punishedthe women.But the point is that shebelieved it to be true and 119 her fears were not unreasonable,taking the historical context into account.This woman had beenin hospitalfor manyyears, quite possiblyduring the period when residentswere, in fact, punishedby staff for havingrelationships (Potts andFido 1991).
With one or two exceptionswho neededsome prompting andpersuasion, all the women had a lot they wantedto say about sex.Even though, at the outsetat least,I was a strangerto most of them, they neverthelesshad no problemfilling severalhours eachwith intimatediscussions of their own sexualfives, as well asplenty of questionsand discussionabout sexmore broadly. Given an opportunity to tak explicit permissionto do so and hearing me model open discussionof sexual matters,the women did not hold back. There was a senseof having openedthe floodgates;although sadly, I doubt that they remainedopen for very long. At the end of my work with everywoman we identifiedwho the most appropriateand approachable personwas for her to talk to in the future. But I have little confidencethat the opportunity would havebeen available on an ongoingbasis. This is not necessarilya criticism of individual staff members,rather a reflection of servicesmore broadly and will be discussedfully in the sectionon recommendations.
Knowledgeof clitoris and orgasm As so many of the women had respondednegatively to the questionsconcerning their experienceof sexualpleasure, further questionswere askedconcerning their knowledgeof the part of their body most likely to produce sexualpleasure (ie clitoris) and the most overt or extrememanifestation of that pleasure(ie orgasm).
Clitolis
Only two of the seventeenwomen seemedto know what the clitoris was. One woman said that shehad heardabout it from a diagram.This was a woman (TIA) who had only borderline learningdisabilities and who could, and did, read,so this is entirelypossible. The other woman said she did know about the clitoris, becauseshe had beentaught about it on the child care course she was doing at college.Intrigued to know what would have been said about the clitoris on a child carecourse, I pursuedthis, only to realiseshe had confusedthe word 'clitoris' with the word 'uterus'and that in fact, sheknew nothingof the former. The remainingfifteen women were also unawareof the e?dstence of the clitoris: this means they did not recognisethe word (which I do not considersignificant); nor did they seemto 120 recogniseit from my verbal attemptsto describeit (usually in the following mannerWs a specialpart of womens privates,it's only smalland feelsa bit like a pea or somethinglike that andit giveswomen good feelingswhen it's touched');nor did they recogniseit from a clearfine drawingfrorn my sex educationpackage Sex and the 3R's (McCarthy andThompson 1992).
In addition to the lack of awarenessprior to my description,four women also expressed doubtsas to whetherthey personallyhad a clitoris after I had explainedto them what it was, for example:
I dodt think Ne got one!(N4Q I needto find out if rve got one!(EY) I haven'tgot on6 of those'(TY).
Orgas7n
Not surprisingly,in view of the above, none of the women seemedto have experienced orgasm.It shouldbe notedthat this is one of the most difficult areasto explore,as unlike other subjects,there are no picturesto show what an orgasmis. There are however sex education videos,including those made specifically for peoplewith learningdisabilities (such as Piece By Piece (West London Health PromotionAgency 1994)and Feeling Sexy,Feeling Safe(Family PlanningAss. of NSW 1993)) which show both women and men masturbatingto orgasm.I did not use these in my research,because they are extremelyexplicit (and inevitablycause embarrassment- to me as well as the other women) and I believe people should only be exposedto such materialif there is a needto show them. In this situationI felt there was no needto introduce such explicit material;I was convincedthrough my discussionsgenerally, from the lack of knowledgeof the clitoris and from the types of sexualactivity they described having,that they did not in fact experienceorgasm. Interestingly,three of the most intellectuallyable women used slang terms, such as 'coming anddid initially report that they experiencedthis. However, on finther questioningit transpired that they confusedthis with the experienceof their vaginasbecoming just all wef (BN) or Wet andready for sex!(IM). I havenoted elsewhere that this hasbeen reported to me by more able womenwith learningdisabilities (McCarthy 1996a). For those women whose only or primary sexualcontact was penetrativesex with men, it is easy to see how the clitoris could remain unexplored (and orgasm not experienced). 121
Somethingthat is not quite so easyto understand,is the fact that the five women who said they did masturbate(or had done at sometime) also did not know of their clitoris. This leads onto the questionof preciselyhow the women masturbated.ITite! s work (1976) indicatesthat womenhave a wide variety of techniques,but that the clitoris plays a centralrole in almostall of them.Unfortunately this was not an areaI felt ableto explore further with the women in this study. It was a subjectthat all the women appeareduncomfortable with to a greateror lesserdegree and those women who said they masturbatedwere, as I indicatedearlier, very tentativein their admissions.I felt it would have beeninsensitive of me as a researcher,and inappropriatefor me as a worker in the service,to pushthem into sayinganything more about it thanthey were readyto.
Men's orgasnu
Despite the absenceof their own experience of orgasm, the women were quite well aware of the merfs experiencesof this. This reflects the situation of the much larger group of women with learning disabilities that I have worked with (McCarthy 1993). This is partly due to the physiological differences between men and women ie there is a visible outcome for men. I believe this is significant, because the women often referred to what they had actually seen (most commonly referred to as 'the white stuff) and sometimeswere unaware that there might be any particular feelings associatedwith this for men. However, it is primarily due to the fact that the men were having orgasms.
Two of the seventeenwomen did not appearto understandmy questionsrelated to this and a fluther two understood,but were not sure whether the men they had sex with experienced orgasmor not. The remainingthirteen women, however,were quite clear that this happened regularly with their partners.Although I did not specificallyexplore this with anyone,four womenclearly explained that they had an activerole to play in helpingmen to achieveorgasm, for example:
M getsme to rub his willy and he!s alwayssaying Tm. coming"' (MC). But if you've got your time of the month and they want it, all you can do for them is wank them ofF (EY). Most menlike you to play with their cock andthat helpsthem to come!(BN). 122
The last woman also went on to describehow men liked to ejaculateover womens bodies; They preferto comeover the womanthan over themselves,because they enjoy it more' (BN). The aboveinformatio n, combinedwith the fact that none of the womerfs partnersfelt it was their role to reciprocate,consolidates the picture that is starting to form of the women providinga sexualservice to the men.
TMvs of sexualactivity One woman declinedto give details, therefore the following information concernssixteen women. Responseswere divided down the middle with eight women experiencingonly penetrativesex and eight women who had a variety of sexual experiences,within which penetrationplayed a centralrole. Of thosewho only experiencedpenetrative sex, four had had both vaginaland anal intercourse and four vaginalintercourse only. Three of the eight saidthat this might be occasionallyaccompanied by kissing,but not always.For the rest of the sixteen, kissingwas not mentioned,although this may possiblybe due to the fact that at this point I was specificallyasking about sex, and kissingmay not be definedas 'sex!.However I did have sex educationpictures available to help the women describetheir experiencesand thesedid containimages of women andmen kissing.
Eight women had had a variety of sexualexperiences: three women had had men stimulating themby handto achievelubrication (see below); for the remainingfive, the'variety' was in fact the woman stimulatingthe man'spenis by hand.
The women'sresponses to questionsand pictures(where thesewere used) of oral sex were very interesting.Only two women had ever experienceda mangiving them oral sex and each of thesehad only experiencedit once.Neither had found it a particularlypositive experience: one becauseshe thought it was disgustingand it had tickled her so much she kept moving around;the other didn!t say how she had felt about it, -only that the man reportedfeeling sick afterwardsand her conclusionwashe shouldril havedone if (EY). In total nine women spokein very strong and negativeterms about giving oral sex to a man. Of the remainingseven, five had no experienceof it, one did not say anythingabout it and one woman said she enjoyed it. This last woman is, in fact, the only woman with learning disabilitiesfrom the seventyor so I haveworked with over the last six yearswho has spoken of this particularactivity in positiveterms. The widespreaddislike and strengthof feelingabout 123 this sexualactivity has beennoted elsewherein my work (McCarthy 1993,1994) and I had hoped to use this researchto try to understandthis phenomenonmore fully. Although this researchdoes confirm the overwhelminglynegative feelings associatedwith this activity, unfortunately I haven't been able to discover quite why so many women with learning disabilitiesdislike it so muchmore than other sexualactivities. Certainly it is the casethat, like others,some women with learningdisabilities have picked up negativeassociations with this sexual activity that are not basedon their own experience.Indeed, three of the nine who expressedthe strongestfeelings about it, said they had never experiencedit, and had no intention of doing so, believing that it was 'disgustingý(the most commonly used word to describeit by all the women,'filthy' and 'vulgar'being other terms). The other six women said they had experiencedthe activity,but it was clearthat it was not as commonas penetrativesex and that the women did, where possible,reffise meds requestsfor this. Of the six who had experiencedit and disliked it, three specifiedthat it was the we they disliked and another mentionedfeeling sick. For anotherwoman it was alsothe physicalside of the experienceshe dislikedIt jaw it's (TNI). One believedthat shecould makesmy ache... uncomfortable! woman becomepregnant from oral sex:
EY: The stuff goesin your mouth
NM: Do you mind that?
EY: It canmake you sick, makeyou pregnant
NM: No, not that way
EY. Canl you?How do you know?
MM: You can only get pregnant if the sperm goesin your vagina
EY: You can'tget pregnantif it goesin your mouth?Are you sure?
AM: Positive
EY: WeUyou've taught me somethingthere.
As well as the physicalside of things,two women mentionedthe interactionwith men which made them annoyedor uncomfortable,eg lots of them ask you to do this, they think it's bloody great, they get the thrill, becausethey're going to come in her moutif(MC). Another 124 woman said that the men said they would take their penis out of her mouth before they ejaculated,but in fact did not.
It is clear from all the above informationin this section,that most sexualactivity for all the woman interviewed focuses on stimulation of the penis. Few women experiencedsimilar genital stimulationthemselves and other sensitiveparts of their bodieswere largely ignored. Rather surprisingly,given that they are both sexualand sexualizedbody parts, breastswere only mentionedtwice throughout all the interviews: one woman sayingthat sometimesmen Eked to ejaculateover hers; and another woman complainingthat men had squeezedher breaststoo hard and hurt her.
Eiperiencingphysicalpainftom sexualactiWty (NB. For the possibleexperience of emotionalor psychologicaldistress caused by sex, see below for sectionon how sexmakes the womenfeel aboutthemselves. )
Two fairly simplequestions were askedon whetherpain was experiencedduring sex andwhat the women'sresponses were to this. It turned out to be a very fi7uitfularea of discussion,with the women not only providing me with their own experiencesand responses,but also with a wealth of infon-nationabout the men'sresponses too. Answers to the question whether sex ever hurt them came in three categories:no; yes, sometimes;and a more definiteyes (meaningthe woman indicatedit either alwayshappened and/orthe pain was severe).Three women said sex did not hurt them, althoughone of these distinguishedbetween the timesit hadhurt ie when shehad been raped, and the timesit did not hurt ie her consentingsex with her boyffiend.Eight women said sex sometimeshurt them and the remainingsix women saidthat it definitelyor alwayshurt them. Thus, it is the casethat the significantrnýority of women (fourteenof seventeen)in this sampleexperience sex as painful on more than a one-off or occasionalbasis. For all the women it was penetrativesexual in intercoursewhich causedthe pain - no other sexualactivity was mentioned this context. Pain arising from anal intercourseonly was mentionedby two women, with a fiuther seven specifyingthat it was both anal and vaginal intercoursewhich causedpain. Five women only mentionedvaginal intercourseas painful and indicatedthat they had no experienceof anal intercourse.This meansthat all of the womenwho did experienceanal intercourse experienced it aspainfiýl- 125
As neithervaginal nor anal intercourseare necessarilypainful experiences,I askedthe women about natural and artificial lubrication.Two women (both having sex with men with learning disabilitiesin hospitals)said that occasionallythe men produced Vaselineand used this for lubricationfor anal sex.Both saidthat the men refusedto put it on their penisesand instead applied it to the women's body, which perhapsaccounted for the fact that it was largely ineffectivein reducingthe pain. (Although shedid not mentionit at the time of this interview,I knew from work a few yeaespreviously, that anotherwomans boyfriend (also a man with learningdisabilities in hospital)had used shampoo for the samepurpose and to the sameOack of) effect. Three other women (all the most intellectuallyable, two of whom were referring to sex with men without learning disabiEties)indicated that there was sometimes natural vaginal lubrication, achievedby the men briefly stimulatingthe women with their hand. All three women specificallysaid that this sexualactivity was for the purpose of achievinglubrication for penetrationand not part of sex for its own sake.As one woman poignantlysaid Men do this to wam women of what is comingnext, they want sex!(MC). Two of thesethree women fi-amedthe achievingof vaginal lubrication as somethingwhich made intercourseeasier for men,as the conversationwith BN shows:
BN: [hesitantly]Sometimes they like to makeyou wet beforethey put it in you, 'costhey find it easier.They finger you, to makeit easierfor them to get it in.
MM: But doesn't it make it more comfortable for vou if you're wet?
BN: I donl mind. If you're dry, they haveto poke you about, to find the hole, to get it up..so ifs better for them if you'rewet.
AM: Isn't it better for you as weUas them?
BN.- I donl mind.
For the remaining twelve women, there was no lubrication of vagina or anus prior to penetration,hence the frequencywith which painwas experienced.
Of the fourteenwomen who experiencephysical pain during sex, none was ableto resolvethe situationby informing her partner that it hurt and negotiatinga more mutually comfortable activity.In terms of causingthe pain to cease,the bestthat could happenwas that two women 126 were able to complainsufficiently to bring about the end of that particular sexualencounter. Neither woman indicatedthat this happenedevery time sex hurt, but rather occasionally.For the other twelve women (and sometimesfor the abovetwo women as well) it was a caseof themfeeling that they had to put up with it. By this I do not meanto imply that they felt it was 'a woman!s lot' to suffer pain in silence(although it is the casethat three women did believe that sex was supposedto hurt women - and not men).Rather nine of the women had, in factý attemptedto tell the men they had sex with that they were being hurt and had got anything from a lessthan satisfactoryto a downright punitiveresponse from the men concerned:
'Mey just carry on.' (GJ) He getsa bit upset,in a badmood. '(GN) I teUthem to go away,they won't go away,they keep on doing it. ' (TD) 'They say "whafs the mattervAth you, cry-baby?" They teUyou to shutup and they go rougher.' (MC)
A possible reason why some men with learning disabilities may not respond more appropriatelyis that they find it difficult to comprehendthat their experienceis not the experience.In other words as a personwith learningdisabilities they may well have difficulty with abstractthkiking and are unableto imaginethat anotherperson would be experiencing things differently from themselves.One indication of this was given by a woman who said I told him it was hurting,but hejust said "it dont hurt" ' (KS). In other words becauseit was not hurting hirn, it was not hurting. However this by no meansexplains the behaviourof all the men:not all had learningdisabilities and thereforeshould not havehad any particulardifficulty in comprehendingthe other personsexperience; moreover sex educationwork with menwith learningdisabilities has shown that it is, in fact, quite commonfor the men to be indifferentto their partner'squality of experience(Gardiner et al 1996).
Five women specificaflysaid it was their fear of the meds adverse,often violent, reaction which preventedthem from trying to speakout:
AM: What do you think he'd do?
MC: Beat He! bloody tall bleeder the here me up... s a great and most of girls are frightenedof him. He!s bigger than I am, rm not usedto giants.(The man 127
in questionwas approximately64", well built and nearly everyone,including 94 was afraidof him.)
If I was to tell a man to stop, he might do the opposite!ON). (This woman had beenraped by a fellow pupil at a residentialschool. )
AM: So you can't teH him? TC: No, becausehe doesift like it, he goes for me if I teH him. (This womaifs boyfriend was known to, in her own words, 'thump'her for various reasons.)
In fight of the above,I think it is important to challengethe view that women with learning dis. abilifies are essentiallypassive and unassertivewhen it comes to sex with men -a view which comesas muchfrom my own work, as other people!s. Rather, a more roundedview is thg on occasionsat least, women with learning disabilities,like many others in difficult situationsmake considered decisions about their personalsafety. Sometimes they haveto trade off one kind of physicalpain in order to avoid another.
Sexd4fing menstruation Throughoutthe courseof my sexualitywork generallywith women with learningdisabilities a numberof women had saidthat havinga period was given (and largely receivedby men) as a legitimate!reason for them refusingsex. I thereforeasked all the women in this study how they felt about having sex during a period. AU disapproved,including the one woman who had doneit on occasions.Most had fairly pragmaticreasons for this, with five citing the messthat would be causedand two more citing period pains or pre-menstrualtension, as reasonswhy they would not have sex at this time. In addition, most also felt it was inherentlywrong, not allowed, embarrassing,disgusting to have sex during a penod. Four also felt there could be physiological consequenceswith two suggestingsome kind of bodily damage and two suggestingan increasedrisk of pregnancy.
Preferredsmial acatilies The women were askedwhich, of the sexualactivities they engagedin, they liked most or least.Three women did not know or did not say and two saidthey did not like anything.For the rest, the picture was more complex,with somewomen giving first and secondchoices for what they liked best andfirst andsecond choices for what they liked least.Others simply stated one thing they liked most. The overall picture which emergesis that just kissingand cuddling was preferredby a third of the women.A finther six womennamed vaginal intercourse as their preferredactivity: two of thesewomen did not have any other sexualactivities; and the other 128 four were clearly comparingit to anal intercourse,which they all namedas least preferred activity.Indeed it was difficult to get a senseof what, if anythingwas preferredin its own right andthe way the questionswere worded ie 'what do you like doing best/least?' did lead people to rate activitiesagainst each other.
Notwithstandingthe above,anal intercourse was deftitely rated negativelyby all: manynamed it as the least favoured,and no-onenamed it as their best, activity. The sameapplied by and largeto the women giving oral sexto men: manywomen namedit as a leastfavoured activity andonly one woman as the thing sheliked to do best.This last woman was the one who was very positive about all her sexualexperiences. (Lest it be thought shewas someonewho said sheliked everything,it shouldbe notedthat shewas, in fact, well able to saywhen shedid not like something,having complained about aspects of the serviceshe received, for example.)
Yhewomen's perceptions of men'spreferred sexualacdWfies Sevenwomen either did not know or did not say which sexual activities they thought men preferred. Of the remainingten, seven believed men preferred penetrativesex (four said vaginal,two said anal and one said men liked both equally).Two women said they thought Idssingwas the leastpreferred activity for men.Three women saidthere was nothingthat men did not like sexually.Two of them expressedvery definiteviews on this:
NM: What do you think men like doing least?
BN: That's a hard one for men, they like everything.They wouldn't refusea thing, the men.
They're not bloody bothered-Theylike it all. The only thing they dodt like is thosecondoms. '(MC)
This last woman had a very low opinion of mens sexual conductgenerally:
Well any man, no matteron the street,in hospital,married or unmarried,there is no andI tell you this andyou're wrong ifyou saythere is, thereis no fucldng decentfellas, not anywherein the world today, becausethey just pounceon you in the middle of nowhereand just start on you for sex. There!s a lot of fucking savagesnowadays. (MC)
This low opinion was partly basedon her own experience:during the time I was interviewing her, and shortly before she madethe above statement,she was sexuallyassaulted by a man 129 with learningdisabilities in the hospital,who had literally pounced on her and left her with extensivefacial bruising. However she also formed her views from herwrider knowledgeof meds sexualbehaviour and sexualattacks which she gleanedfrom the media and she made evenstronger statements about men whose behaviour she differentiated as beingmore extreme than the others.After news reports of a serioussexual assault on a sevenyear old girl which took placeduring the time I was interviewingher, shesaid:
There are somebastard cunts of men in this Englandwho attack young kids. No matter where they lurk, these men, they've always got a crazed killing sensationin their heads.How honestlydoes he think he!s going to fucking get awaywith it? I bet he will. They'recrazy, men like that. (MC)
Although her languageis a little lurid, the strengthof her feeling of outrageabout the sexual assaultsthat were taking place,was very real. However, I think shewas fairly exceptionaland none of the other women I spoke to gave me any reasonto believe that they basedtheir opinionson anythingother than their own personalexperiences.
Fear associatedwith sex The women were askedif there was anythingabout sex which flightened them. Three said therewas not and anotherthree saidit had beenscary at first ie when they were younger,but that had passedas it hadbecome a more familiar experience.One of the two womenwho said everythingabout sexwas ffighteningwas someonewho hadrelatively recently started her first sexualrelationship. The other woman who found everythingabout sex frightening put this down to 'thinking about my dad, about getting pregnantand stuff But I hope III get over it and won!t be frightened about getting pregnant'QCN). This woman had been raped by her father and had given birth to his child, so it is not surprisingthat both elementsof this experiencestiU loomed large in her mind. However, what does not come across,in her own words is any senseof time-scale:she was, in fact still,hoping to get over it some31 yearslater, and her fearsof pregnancyhad not diminisheddespite being 48 and havingthe Depo-Provera injection.
Nine other women said there were things about sex which frightened them. Interestingly, despitethe fact that the location for sex was often very unsatisfactory(see below), only one woman mentionedanything to do with the time or placefor sex,saying it was scaryto do it in the dark- For all the others it was something about the sexual interaction itself which 130
sometimesffightened them: for a few it was certain kinds of sexual activity (vaginal intercourse,having the vaginatouched, oral sex on a man);for othersit was a fear of potential sexualviolence'if a manforces himselfon you, rape!(EY); for othersit was a fear of physical violencethat might take placealongside sex Tra frightenedhe might hit me in the mouth, he!s a bully' (GJ).
Paymentfor sex From my wider experienceof sexualitywork with women with learning disabilities,many women in hospitalshad told me that they were given small sums of money or cigarettes (occasionallydrinks and sweets)by men for sex.This was understoodby both the women and men as payment. Consequentlyall the women in this study were asked if they received paymentand what they thought aboutthe issue.The findingswere striking, with there beinga clear split in responsesdepending on whether the women were living in a hospital or communitysetting. All the eight women fiving in hospitalshad receivedpayment; none of the sevencommunity based women had. Of the two women who usuallylived in the community, but who were in hospitalat the time of being interviewed,one was being given moneyby her boyffiend (a long term hospital resident)and the other was not (her boyffiend was newly arrived in the hospital for the first time himself). These findings clearly confirm earlier assertionsof n-dnethat the exchangeof sex for money is an integral part of the institutional subculture(McCarthy 1993).That it is to do with the natureof the institutionalcontext and not the nature of the people placedthere is clearly demonstratedby the fact that it is not a prevalentpractice in communitylearning disability services. Furthermore the attitudestowards acceptingpayment differed depending on where the women lived. The hospitalbased women not only accepted,but expected,money, believing that this was the right thing and that in fact it was not fair if mendid not pay them.The conversationwith EY illustratesthis:
EY: I have been with some men who were no good and didnI give me a pemy. What would you do if you were going with a man who had a lot of moneyand never gave you anything?
AM: I wouldn't expecthim to give me money.
EY. But if yotedbeen giving him things?
AM: If I gave him presentsand things like tha4 then yes, I would expect him to give me presentstoo sometimes,but not money. 131
Community basedwomen, on the other hand, aU expressedthe view that it was wrong to exchangesex for money:
I think it's wrong, you shouldift be having sex if you're chargingpeople, like prostitutes,tarts, it's disgusting!(DY)
Men payinggirls is the wrong thing to do'(LT).
Interestinglythis last woman was the only one to comment on the merfs behaviour,all the other women, whether they approvedor not, spoke of women acceptingpayment, not men offeringit. This focus on the womans role in the exchangeis a reflectionof society'straditional view of prostitution,where the women are stigmatisedand crirninalised,rather than their male clients.Moreover, in termsof attemptingto understandthe issue,looking only at reasonswhy (Jeffreys women acceptmoney and not at why men offer it, is to miss at least half the point 1985).
The women with learningdisabilities in this study were fully awarethat men paid women and not the other way around.My questionsas to whether women ever did, or should,pay men for sex was met with anythingfrom a completelack of understandingof the concept,to an incredulouslaugh, to me being patronisedfor seemingto ask such a stupid question Well FU largely give you a few basictips there..' (MC). The fact that the subcultureof the institution reflectsthe exchangeof sex for moneyin the outsideworld should come as no surpriseand consequentlymight be viewed by someas 'natural'and of little concern.However, as paying be can bring with it the power to control what happensin the encounter,it clearly should being viewedwith concern.Although it would be easyto view the women as simply exploited by men in these exchanges,I think this would be overly simplistic.As sexualpleasure was largely or entirely missingfor the women, the women themselvessaw taking moneyas a way of getting somethingfrom the encounters.This was expressedby one woman in her usual vivid manner:
Men seeus a bloody garbageuser, use us to do what they want and turn their backs. So basicallyif they have got any money in their pockets to pay for having a woman and doing what they want, then, yes, fucking chargethem (MC).
Receiving something from the encounter went some way, in some womeds minds, to equalisingthe situationsomewhat. I took the sameview and althoughI was referreda number from of women who had sex for money, I never tried merely to dissuadethem accepting 132 money.It is hard to justify why the men shouldreceive what was, in fact, a servicingof their sexual needs for nothing. Rather I worked with the women more broadly to attempt to increasewhat they got from their sexualencounters. Although this would appearto be a clash of valuesbetween myself and other staff within the services,in fact it neverproved difficult to overcome.Most staff readily took on board the fact that it would be very difficult to try to dissuadea few individualsfrom doing somethingthat many other peoplein their socialmiEeu were doing andwhich was widely acceptedor viewedas inevitable.
nere sextookplace Once again,clear dfferencesemerged depending on whetherthe women were in hospitalor community settings.All sevenwomen in the community said they had sex at home in the bedroom,usually theirs, but occasionallythe maifs. One woman who did have this privacy availablealso had had sex in a semi-privateplace in her day centre.In contrast,all the hospital basedwomen (including the two non-nallyin the community) conductedtheir sexual fives outdoors or in semi-privateplaces indoors, such as back staircasesor unused rooms. It is importantto note that someof thesewomen did havetheir own bedrooms:one chosenot to have her boyffiend in her room (although staff had explicitly said she could) becauseshe valuedit as her own private spaceand she did not want him there; mostly howeverthere were rules againstthe women taking men into their rooms, sometimesonto the ward itself Whilst these rules seem, and often are, unreasonableinfiingements on people!s freedom, it is not alwaysas simplean issueas it may seemat face value.For instance,two of the women in this study were on wards which were home to severalvulnerable women. Both had boyfriends who were convicted sex offendersand staff preventedthem from coming onto the wards, feelingthat they were actingwisely to safeguardtheir vulnerableclients.
The outdoor settingswere the backsof buildings,bushes, secluded areas. In addition two of the four hospitalsincluded in this study had places(a shedand a caravan)which were well known and well used by many different residentsto have sex in - indeedold mattresseshad beenplaced in them for that purpose(though by whom I do not know). Although I did not personallysee the shed,many women describedit as 'not very nice!.If it was anythinglike the caravan,this is a seriousunderstatement. About a year after the SexEducation Team began its work, a woman with learningdisabilities offered to show me the caravanshe and manyothers had sex in. I could not believewhat I was seeingand becauseI was with her, I struggledto 133 control my emotionsand cut the visit short. I returnedlater that day with my male colleague andwe were both stunnedinto silenceand nearlymoved to tearsby the sight: it was a wreck, littered with broken glass,filth (including excrementof some kind) and rubbish. We took photos of it, as we hoped that in the long term we might be able to persuadethe hospital managementto substantiallyimprove the conditions.As a short term measure,we went out and bought lots of cleaningmaterials, stayed behind after work and scrubbedthe place from top to bottom, put in cleansheets, etc.
This is an extremeexample (I hope) and as I haveindicated above most hospitalresidents had sex round the backs of buildings,in the bushes,etc. However I have told the story of the caravan,because it was regularlyused as a location for sex and because,despite its horrors,it was chosenpresumably because it offieredat least some protection from the elementsand somedegree of privacy. Although many women and men spoke of using the caravan,none complainedof the condition of it and I think this indicatessomething of the psychologicaland emotionalblocking that some people with learningdisabilities would need to employ when they are forced to conduct their sexWdrelations in circumstancesother people would not tolerate.
(A I the ,, rxa aa post script to the caravanstory, shouldadd that when confrontedwith evidenceof the stateof the caravan,the hospitalmanagers did not seekto improve it, but had it removed from the site.)
Whetherclothing was removedduring sex Two women did not answer these questions. Of the remaining fifteen, four regularly experiencedsex with no clotheson. Three of thesewere womenwho had sex in bed with men who were alsoundressed. The fourth was in the outdoor semi-privateplaces described above. The other elevenwomen mostly or alwayshad sex with their clotheson, removing only what was necessaryfor sex to take place. The men did not get undressedeither. Three of these women occasionallygot fully undressed:all said this was at the metfs requestor insistence, and that the men did not reciprocate,despite the fact that the women wanted them to. Two women specificallyrecognised this as 'not fair' andone just saidshe did not fike it. 134
Decisionmaking and sexualactivity The women were askedwho madethe decisionswhether to have sex, where and how. Five women said thesedecisions got madeby either or both partners,although one of them said menmight consultwomen, but did not alwaysand went on to describewhat was essentiallya rapescenario. Onewoman saidshe made the decisions:this seemedaccurate as far asthe decisionwhether to have sex was concerned,but contradictedwhat she had previously said about the type of sexualactivity shehad. On the one hand shewas sayingit was up to her what sexualactivity shehad with her partner,but on the other handshe said she did not like the sexthat took place andwanted somethingelse. Whilst it is possiblethat shewas actively choosingsex shedid not like (as a form of self-punishment,for example)I have no reasonto think so and assume perhapsthat therewas somethingabout the questionswhich confiisedher.
Eleven women said it was the men who made the decisionsabout sex, although a few indicatedthat this was not always a consciousprocess. For example,one said she and her boyfriend only ever had vaginal intercourse,therefore there was nothing to decideregarding the type of sex. Another women saidshe always had sex with an ex-hospitalresident when he cameback to visit his girlfiiend (not her). Sheimplied that this was their routine and it did not take much thinking about.
Three of the elevenwomen specificallysaid that they would Re to have more say in what went on and one gave me an exampleof how she did sometimestake control, by resisting what the men wantedfrom her: When they say to me haveit up the anus,I say "you fucking pissoff ' andI run away,cos ifs painfulup the bum!(ID).
As well as being askedwho madethe decisionto havesex in the first place,the women were askedwho, if anyone,decided how eachsexual encounter was going to end.Mine women said sex endedwhen the man had his orgasm.Once againthe impressionwas given that this was not a consciousdecision on anyone!s partýbut just the way things were ie that was how sex ended.Five women did not respondto this questionand two said that sex endedin other ways: for one it was when the time camefor her to go back to her ward for her next meal;for 135
the other, it was when she got fed up with it, indicatingthat she did have somecontrol over matters.
Womentahng the initiative
The women were askedif they ever had, or ever would, ask (in words or actions)a man to have sex with them. Three did not respond.Three said it would be unusual,but that they possiblywould, or occasionallyhad. One woman clearly recognisedwhen shefelt attractedto a manand said shewould do this 'if I took a liking to someoneand I wanted a bit of romance! (EY). Another woman,by askinga man with learningdisabilities into her bed, did seemto be askingfor sex (and that was certainlywhat happened).But at other points in the interview,she said clearly that she wanted kissing and cuddling, not the penetrativesex which took place. Unlike the abovewoman, this woman was not able to identify (or at any rate sharewith me) that it was her attraction to a particularman and/or feelingsof sexualarousal that prompted her to ask the maninto her bed.In fact, shesaid she did not know why shedid it.
The remainingten women all said they would never ask a man for sex. Theseincluded two womenwho had reputations(amongst staff and other residentsin hospital)for havingsex with a numberof men for moneyor cigarettes.It was reportedby staff that the women initiatedat leastsome of theseexchanges, but whetherthey had actuallyobserved this or just imaginedit would be the caseis not clear. The women themselves,while they readily admittedtaking moneyand cigarettesfor sex,said they did not askthe men,but were askedby them.
Choosinga partner As well as enquiringinto who took the initiative with regardsto sexualactivity, the women were also askedwho initiated the relationshipsthey had eg who approachedwho, who asked the other to be their boyfriend/girlfiiend. One woman did not have a relationship or arrangementwith anybodyand two othersdid not respond.Eleven women saidmen generally or alwayschose them and askedthem out. Most did not expressany view on this, againit was just the way things were. Two women however,did expressthe view (one very strongly)that this was the proper order of things, that it was merfs role to do this, not women's.Another womantook a slightly differentview, expressing(in her tone of voice aswell asher words) her dissatisfaction: 136
NM: Do you choosethe men you go out with or do they chooseyou?
MC: They chooseme
NM: Why is it that way around?
MC: I donI reallyhave a lot of choice
NM: Why do you think that is, that they always choose you and you don't get to choosethem?
MC: Thaesjust the way theywork.
Anotherwoman, in describinga typical sexualencounter, gave a very eloquentand poignant account of what could be a one-off sexual encounter,or could develop into an ongoing relationship:
A man looks at you, then if he likes you, he sayshe wants to go with you and do somethingwith you. Thenhe says"lay down, I want to interferewith you", or "I want your body", becausehe likesyou. 17henhe lays down on top of you, puts his armsaround you andIdsses you, then he puts his thing up you, then he gets off you and sayshell seeyou againand thank you and an that, for giving me your body and maybehe sayshe loves you, then he says he gotta to go now. (Eý
One woman said it was usuaUymen who approachedher, but that she had askedher cur-rent boyfriendout. Two otherssaid it could happeneither way around- one of thesewas a woman who was actively, and very inappropriately,pursuing a male doctor in the hospital,trying to form a relationshipwith him.
Reasonsto havesex This proved a difficult thing for manywomen to think about. Some of the intellectuallymost able women commentedon how difficult a questionit was, somethingthey would have to think about. After time for discussionand thought, in fact three women (not the most able) could not give any reasonswhy they had sex.The fourteenother women did all saywhat their reasonswere: thesevaried greatly and somewomen had only one reason,whilst others had several.The most commonreason given (by six women)was loving or liking the menthey had sex,Arith. Another women did not use the words love! or like!, but said she did it becauseshe wanted to marry her boyfriend in the future, which I took to be in the samecategory of 137 responses.Three women said they had sex becausethey liked it and anothersaid having sex madeher feel 'more in control of my own life, if I don't want itý I can say no, if I do want it, I just keepgoing alongwith if (DO). Four women said one of, or their only reasonfor havingsex was getting money or cigarettes. Anotherthree saidthey did not haveany reasonsand implied that they did not activelyengage in sex, rather it was done to them by men. Their lack of active involvement in sex was graphicallyillustrated by an incidentinvolving one woman (GJ), which was reportedto me by a memberof staff and later confirmedby the woman herselfas accurateand typical: the staff memberwalked in on the woman having sex with her regularpartner (an ex-hospitalresident who cameto visit his girlftiend) in a staff rest room. The woman was leaningover a table, beingpenetrated from behind,she was eatinga packetof crispsand appearedto be not much interested or 'involved' in what was happening. This emotional or psychological 'disengagement'from the physicalactivity was (althoughby no meansuniversal for the women in this study) not uncommon.The women who reportedhaving sex for moneyalso seemedto distancethemselves emotionally from what happened,as did those who had sex becausethey felt they had to, for fear of merfsreactions if they did not. Gavey'sresearch also concludedthat 'when sex is engagedin for pragmaticreasons, it can take on specificmeaning as something which is mundane,an ordinary physicalactivity' (1992:344. ) One woman said severaltimes throughoutthe interviewthat sheengaged in sexwhich sheneither liked nor wanted,as a way of placatingmen; 'to shutthem up' and 'to keepthe peace!(KN).
Although having a babywas mentionedby a few women at different points in the interviews, only one mentionedit in the context of it beinga reasonto havesex. This woman mentionedit as the fifth of her six reasonsand interestingly,she hesitated before she told me, prefacingit with the remark 'you might think it's disgustingif I told you' (EY). The fact that shethought I would be disgustedif she told me she had sex becauseshe wanted a baby, but not that she took moneyfor sex,is an indicationof the messagesshe had been given about what was, and was not, acceptablefor someonelike her. Sadlyfor her there was no prospectof her having anotherchild (in the past shehad had at leasttwo, one died and the other(s)taken into care), as shewas 55 and past her menopause.When I put it to her that she knew what shewanted was not going to happen,she dismissedthis saying 'I know you don't think it's going to happen,but rve seenit on the tele! 01ýý and went on to relate having seen a television documentaryabout a 62 year old woman havinga lest-tube!baby. 138
no wantssex the most The women were askedwho wanted sex the most, them or their partners.Fourteen said the menwanted sex more than they did, with three beingvery definite about this. One woman, in elaboratingon her answerthat it was men who wanted sexmore than her, went on to explain the pressurethis could leadto:
G. [male friend, not boyfriend] kept pushingme, askingand asking.He didift break Men had "she's give me a ... think'cos you've a child, they think alright, she's easy" but they don't realise how I feel about it, I don.1 think they understand,you know, the feelings,the unhappiness,when you're trying to overcome it and they're just bringing it forward into your mind all the time theyjust don! (1ý. ... t understand
When I inteýected (wrongly as it turned out) that the men might not know what bad experiencesshe had had in the past,she replied'G. doesknow and I think he thinks rm easy meal,but I!m not. He thinks TH probablyget her sooneror later" but he worft'OCN).
Another of thesefourteen women explainedthat shethought her boyfrienddid want sex more than she did and that this was the casefor men and women generally.But she thought that women, including her, did want sex too, but that women kept the sexualfeelings and desires under control:
NM: Why do women control their sexual urges more than men?
DO: Because basically I have instinct meiYresilly, .... think women a sort of to know how it dodt know how say... they to control and men really to it in control .... a way.
NM: Do you think they can't control it or they don't control it?
DO: I dohl think they evenbother.
Two women saidthey thought both they and their partnerswanted sex equally.One of these women seemedto be sayingthat shewanted it as much as her boyfriend did, but not for its own sake,rather because of the consequencesfor her if shedid not do it: 139
I think both of us, I haveto go out to play with D., all the time, becauseof how he be I dont like him being (TC) can with me otherwise,which -
Only one woman said she thought she wanted sex more than her boyfriend, but did not elaborate.
no enjoyssex the most One woman said shethought sheenjoyed sex more than her boyfriend, but did not elaborate. Two women thought the level of enjoymentwas equally shared. The remainingfourteen believedthat the men they had sex with enjoyedthe experiencemore than they did. None of the women appearedto view this as problematicor somethingto be challenged.Rather it was acceptedas the way things were. Although the questionsin this part of the mterview were specificallyasking the women about their own experiences,later they were askedabout their perceptionsof other people!s experiencesand to generalise( seep154 ).
Sexualabuse Although at various points in the interviewsmost women had spoke of sexualencounters in which they had not given their free and full consent,they were askedat this point specifically about sexual abuse.The reasonfor asking specificallyabout this was that although L and others,might havelabelled certain things as abusive,this was not necessarilyhow the women themselvesalways saw it. I wanted to find out what kinds of things they did construct as abusiveand so they were askedif there had beenany occasionswhen they had beenmade to do somethingsexual when they hadnot wantedto.
Only three women saidthat this had not happened.One of theseanswered the questionvery abruptly,immediately looked uncomfortable,asked to go to the toilet and changedthe subject on her return. I interpretedthis asa signthat shewas uncomfortablewith the topic, ratherthan confirmationthat she had never been abused.I knew that her ex-husbandhad used physical violenceagainst her and that her current boyfriend was a convicted rapist. Whilst neither of thesethings, by definition,mean that shewould havebeen sexually abused by them,neither are they comforting factors.For anotherof the three women who said they had not beenabused, 140 staff held strong suspicionsthat she had been sexuallyabused by her father when she was younger.Whether these suspicions were basedon circumstantialevidence or whether shehad indicatedthis to staff in the past,I do not know. However shedid not give any suchindication to me.
Fourteen of the seventeenwomen had, within their own understandingof the term, been sexuallyabused. Five of theserelated one incidentof abuse,although for at leasttwo of them circumstanceswere such that it clearly could have happenedmore than once. The other nine woman definitelyall had multiple abusiveexperiences: these include several instances of abuse or prolongedabuse over time by the sameman and different men abusingthem at different timesin their fives.As I note in my chapteron methodology,concepts of time, particularlyof frequency and duration, can be difficult for many people with learning disabilities,and researchershave to be safisfied with approximations.For the purposes of this research, exploringthe types of abuseand how the women respondedto it, was more importantto me thanworldng out exactlyhow manytimes andwhen somethinghappened.
Ratherthan attemptto surnmariseand categorisethe womens experiences,as I havedone so fkr.7 I think it doesmore justice to their historiesto give a summaryof eachof the women and let them,as far as possible,speak in their own voices.
MC's expefiences MC spoke of abuseby the sameman as reported in more detail by MH below, in much the samecircumstances. She also reported having been raped as a child:
MC: When I was about six or sevenI was at boardingschool in the country and there was a coloured lad there, he was quite tall. He pulled me into the woods andforced me down on the groundand put his penisup into me
AM: That's tenible. Did you teH anyone?
MC: They saidthey didnl beHeveme
NM: Did you teUyour mum and dad?
MC: They saidto stayaway from him, but you couldnever avoid him. 141
Not beingbelieved was a concern,for this woman and as somethingthat was raisedat another point in the interview. Here, I was trying to help her think through some of the potentially positivethings that could happenif shereported abuse:
MM: Well if you report the man he might get into trouble. You might get help and support. Do you think the staff would believeyou?
MC: No
NM: Would any of the other women on the ward believe you?
MC: No
AM: Your famfly?
MC: No
NM: Why would nobody believe you?
MC: Theyjust wouldiA
AM: Do you think I would believeyou?
MC: You would, yes.
MM: Well its important to know that at least one person would believe you.
Shewas quite right that nobody (apart from me) believedher when she reportedabuse. This was graphicallyillustrated by an incidentthat occurredduring the time I was interviewingher. Shehad beeninvolved in an incidentwith a manwith lean-dngdisabilities who was kept under strict supervisionat all times becauseof his violent behaviour, but who, as part of his rehabilitation,had beenallowed five minutesunsupervised time in the hospitalgrounds. During thesefew minutes,MC happenedto be passingand althoughthe detailsare not cleg, some sexualcontact took placeand the man bit her face, causingextensive bruising. As shehad, at times, injured herselý the staff on MCs ward maintainedthat this was also a self-inflicted injury, thereby obviouslydenying it was a bite-mark. The staff on the marfs ward, however, acknowledgedit was a bite andthat he had inflicted it, but that shehad consentedto the sexual contact.I madea formal complaintabout the incidentto the hospitalmanagement, but it ended unsatisfactorRywith the view (put forward by the mads (male) psychiatrist)being accepted that the manhad got carriedaway by sexualpassion. 142
MC alsorecounted an instanceof havingbeen sexually abused in a toilet by a hospitalporter
BA"sexpefiences BN did not give much detail about her experiencesof abuse; in fact she was clearly uncomfortablewith talking about it and attemptedto changethe subject.But shedid saythat one of the men who she had been in a brief relationshipwith (who did not have learning disabilities)and in whoseflat shehad stayed,had madeher havesex when shedid not want to and when he wanted her out of the flat had pushedher down the stairs (this had been witnessedby a malefiiend who had mild learningdisabilities). She did not sayanyone else had abusedher, althoughher socialworker had strong suspicions(based on her knowledgeof the family)that BNs fathermay havesexually abused her.
El"s expenences EY spoke of many different instancesof having beenforced to do sexualthings she did not want throughouther fife, beginningwith sexualabuse by her fatherwhen shewas a girl:
EY: My dad had body I I learnedfrom him my when was twelve... about sex, he used to teach me about sex and that's anotherreason why IPmlike I am sometimes
NM: What do you mean?
EY: My father said he was going to changeme into a personwho would go with all the men...
NM: And you think that's worked in someway?
EY: Yes, he saidhe was going to makeme into a prostitute
NM: That's a terrible thing to say
EY: Thafs another reasonwhy I go with the men see?Because my father changedme and I!m not so nice as I usedto be, becausemy father done it to me. And he!s not alive now, good job, but he did sayhe! d do somethingto me that would makeme go with all the men
AM: Did you ever teHanybody about what your dad did?
EY-.I told my mum and shehad him put away. 143
FMs . expefiences FM was one of the women who reported a single instanceof rape, by a fellow pupil at residentialcollege:
FM: When I was at college, it happenedthere. A boy there wanted to do it andI said "Right, A-, canyou stop please"and he carriedon.
NM: What did you do?
FM: He took me by the arm behindthe chairs,he askedme to lay down. I laid andthe next minute,he wantedto makelove with me. He decidedto have sex, he grabbedtwo of my handsand he was pushingdown very hard, very hard on the palm of my hands- he woulddt let go. I said"A-, stop please",but I couldn'tput my handdown, I said "A-, that'senough please". It was hard for me, I couldn!t move.
AM: That must have been very frightening. Did you tell anybody about it afterwards?
FM: After he finished,I said ,rm going to tell somebodyof you" and I went to the office and told'ýJr I The next day he took A- into the office and he got told off, becausehe wouldn!t let go of me.
NM: That soundsvery upsetting.
FM: Yes it was.
G.rs experiences GJ did not give any details,but said the man with learningdisabilities she regularly had sex with had made her do things she did not want to do. Another woman with more severe learning disabilitieshad also, in the course of my work, made similar complaintsabout this particularman.
Yrs expefiences TY was anotherwoman who saidshe had beenforced by a man with learningdisabilities at a Social Serviceshostel to have sex. She did not give any details.The man she namedwas known to my team as havingsexually abused a numberof vulnerablepeople.
GA"sexpetiences GN reporteda particularincident in the contextof otherthings which had happened: 144
MM: Has any man ever forced you to have sex when you didn't want to, tried to make you do it?
GN: Sometimes
NM: Can you tell me what happened?
GN: They forced me to
NM: Who's "they". Residentsor men from outside?
GN: Residents- if you dorft have sex vvith them, they get in a bad mood andtell you to fuck off
NM: Yes, but that's not quite the same as making you do it - has anybody ever forced you to do what they want? GN: Yes
NM: Has that happeneda lot or just once?
GN: A coupleof times
NM: Was it the sameman or different men?
GN: Different men
NM: Who were they?
GN: (no reply)
MM: It's OK if you don't want to tell me
GN: I do! K. [hospitalresident] do it, Us boyfriend,K. done it to me on the ward one day, he!s rude, he pulled my knickersdown in the quiet room and he put his penisinto my backsideand I didnl &e it
NM: Did you tell anybody about what IC did?
GN. I told the night nurseand sheput him out the ward and bannedhim for it, stoppedhim comingup to the ward for a coupleof nights
AM: What did you think about that?
GN: D. [her boyfriend]heard about it and he wasvery crossabout it
AM: What do you think should have happenedto K? 145
GN: I would haveliked him to be told off
XM: Who do you think should have told him oO
GN: Anybody. He did do it to me in the ward, a long time ago, Frn not lying; he pulledmy nightieup, he did.
NM: I believeyou
GN: Fm not lying. He askedme did I want sex andI said no to him and he kept carryingon.
The manwith leamingdisabilities GN is refening to was the boyffiend of MH (seebelow).
TC'sexpefiences Referringto her boyfriend of manyyears standing, the man she one day hopedto marry, TC saidthe f6flovving(she caHs sex'playing vvith! ]:
A man has forced me to play with him, becauseof what he is with me otherwise,D. did that. rve had to go out to him, to satisfy him that's all, to keephim happy,to stop him from going for me. Thafs what I haveto do.
MI's expefiences MH describedonly one incidentwith a man with leamingdisabilities in hospital,but shewas thought by staff to have been abusedby her boyfriend (a different man with leaming disabilities)on numerousoccasions. Although shedoes not relateany of that herewhen asked the specificquestion about abuse(perhaps suggesting it is harderto recogniseabuse and name it when it happensby a loved one),at other times during my work with her, shecomplained at lengthabout her boyfriend'ssexual behaviour. But hereshe is talking abouta differentman:
NM: Did you want to have sex with IL?
MR. No, I wasn'tpleased with it, he locked me in the shed,I didnI want to do it in the shed,ies dirty in the shed. He said "do it in the shed,like it or lump it" I tried to get out of the door andI couldn't,the door was locked.He said"if you kick that door down, youll pay for it"
AM: That A sounds very upsetting. Do you know if he did that to anyone else?
MH: He usedto hurt aUthe women 146
NM: Yes, lots of women have complained to me about him.
The manshe is referringto was well known to me (not personally,I had nevermet him, but by reputation)as manywomen had complainedto me about him. He did have a key to the shed, which he had had accessto as part of hisjob in the hospital.I made official complaintsabout him to the (male) psychiatristresponsible for his care, but was treated disrespectfullyby him and my concernsdescribed as exaggerated.Illustrating that not all staff in learningdisability services take issues of sexual abuse seriously (McCarthy and Thompson 1996), this psychiatristtold me that lots of men in the hospitalbehaved as R- did, so it would be unfair to pick on him and this would make him angry. When I took my complaints(the original one aboutR- and new onesabout the doctor) to the hospitalmanagers, there was an investigation of sorts,but it was not resolvedto my satisfaction.At the time of writing (somethree or four years later), reports about R!s abusive sexual behaviour towards women with learning disabilitiesare still emerging.
HC's experiences HC was one of the leastable and leastcommunicative of the woman in the study and did not give much detaUabout what hadhappened to her:
MM: Has anyone ever forced you to have sexwhen you didn't want to?
HC: J. (hospitalresident) did once,he done it to me once, hejust wantedto do it
NM: Did you tell anybody about that?
HC: No I didM teUanybody, no.
AM: Do you know why you didn't teff anybody?
HC: I didnl teUthe st4 no.
NM: What do you think the staff would have done?
HC: They uýght havehad a word with him.
L2's expefiences 147
LT related her experienceof sexual abuse by a neighbour when she was young, and unwelcomeattempts by boysat school:
LT: Yes, whereI usedto five, the man 4 doors down, Mr S. I was 14 and he calledme into his garageand told me to take my trousersdown, So I said but he did it, he his finger, index finger how I no, put the ... can this ? He his finger inside I frightened death,I put ... put me. was to didn't know what to do.
That's really horrible, so what happened?
LT: I told police andhe got arrested
NM: That was very brave of you to tell
LT: Ies for fife When I boys put me off sex .... was younger at school, used to try to force me in the bushesto do it, but I wouldnt let them do it. I was too young.
DO's experiences DO had had two abusiveepisodes in her life (at the time of interviewing she was stiU only nineteenyears old, the youngestwoman in the study):
MM: Has anyone ever forced you to have sexwhen you didn't want to?
DO: Yes, my dad when I was younger,about 13 1 think, he was doing things that didnl make me I knew it was wrong, but he forced me into doing it. ....
AM: Did you teUanybody about it?
DO: It My dad becauseif I did washl easy... told me not to tell anybody, tell anyone,he! d beatme, so I had no choicereally. It was only when me and my dad were left on our own, when anyoneelse was there, it was all family love and all that. I really wantedto tell my mum but I couldrft. I knew if I told my mum shewouldnl believeme anywayand it would all go through police andeverything and I didnl want that.
NM: Last week you mentioned that you had been raped..were you referring to what happened with your dad?
DO: No, that was an old bloke I knew. Me and other Idds used to help him with the paperround, he usedto give us 11 each. All the kids usedto do it, but they stoppedand I carried on and he started on me, getting all thesefimy ideas. It was alright for a little while, then he got a job at a 148
playschool,clearing up and he asked me would I help and I thought "Why not?". It would give me a bit of extra moneyand thaVswhen it all startedwith him, down there. ThaVswhy my mum and dad stoppedme from going out, they wouldn't let me out of the house,not even for 5 minutes.
AM: So you told your mum and dad about it?
DO: Yes andmy dadwent absolutelyloopy, he startedgetting A his mates with all thesebaseball bats....
NM: Did anybody tell the police?
DO: No, we had enough trouble as it was with the police, I'm scaredof them becausethey camearound and arrestedmy dadbefore.
AM: How old were you when this happenedwith the old man?
DO: Sixteen. He corneredme into a comer andI didrVthave my chanceto get away. He didet listen and that madeit harderon me. And now there!s anotherbloke, aroundhere, one of the blokesthat knew my dad, said to me to go with him in his car andgo for a dirty weekend. I said "No way, rm not going out with you, you!re too old, you're old enoughto be my father."
AM: You've obviously had some bad experienceswith men. Has it affected your attitude to men generally?
DO: It makesme anxiouswhen rm walking down the streetand there's a man behind 'cos don't know like Some me.. you what they're .... men are nice and someare really, really horrible.
NM: When you had your bad experiences,did you have anyone to help you get over them?
DO: No, I had to do it all myself But my fliend E. has had the same I have her it hang together. experiencesand spokento about ...we around
AM: Do you have any thoughts about why men do those things to giris?
DO: Becausethey're stupid basically, aren't they? I don't know why they do it, they mustbe boredI suppose.
AM: Well, I don't know about that...if you're bored you could read a book or watch tele, you don't have to go and rape somebody.
DO: I doril know why they do it, there!s no needfor it is there?Is it fun or what? I meanwhafs the attractionof hurting other people? 149
7D's expefiences TD did not give much detail, but relatedan instanceof having been taken to the shedin the hospitaland having to do somethingshe did not like. She had also, in anotherhospital, been touchedin a sexualway by a manwith learningdisabilities whilst walking in the grounds.She hadcomplained to staff aboutthis incidentand that hadprompted the referralto me.
KWs expenences KN had also had two episodesof abusein her fife: first shetalks about how shewas rapedby her father as a girl, eventuallyhaving his child when shewas seventeenand how her brothers were initially suspectedof abusingher:
KN: My brotherssent the police to the hospitalwhen I had R- and said to my dad "we havebeen accused of K. beingpregnant, but dad ifs you". My dad told me if I didn't keep my mouth shut, he!d be in prison. I didnl understand.When my mum cameto seeme I told her what they said and she said "ifs rightý hell go to prison and I will haveto go in prison as well." I said "why you, you airft done nothing wrong?" and shesaid "I will haveto go in prisonbecause I wasnI watchingyou, ifs called'aiding and abetting". I didn't graspit, but I didift saynothing. I think my mum felt guilty until the day shedied, because she apologised to me. I saidto her "you haven'tgot nothingto be sorry for".
NM: How did your brothers know it was your dad?
KN: Becausethey didnI makeme pregnantand he kept blamingthem.
NM: But how did they know it was him and not anybody else?
KN: BecauseR- looks deadlike him. I think that with my dad is what's put me off sex andI try not to let him seethat I'm hurting. He's so muchlike my dad, but it's not his fault. It's really sad. I feel guilty all the time, but I know it's not my fault.
As well as this earlier traumaticexperience, she later had another abusiveexperience with a manwho also had mfld leamingdisabflities:
KM: I had anotherboyfhend, he took me in the woods, he saidthere! s some pretty animalsthere and me, being young in the mind, thought "thats good, I like animals". But I never dreamthe was going to rape me, I didn!t realiseit was called rape, I ran away, I don't know how I got homeand told my Mum andDad what happened.He worked with my 150
stepdad and my uncle. They got him on the side and said "You mustnI do that. We know you're not sensible,but you're not to do thatýyou've scaredher now". My mum told me to tell him to look for anothergirIffiend and I did. I didrft go outurith him anymore. That was 10 or 20 yearsago now.
In additionto their own experiences,which are extensive,seven women knew of otherswho had also been sexually abused. Six of these women knew other women with leanfmg disabilitiesthis had happenedto; all apart from one were other women in hospitals.One woman knew that her boyfliend (without learningdisabilities) had been sexuallyassaulted by anotherman. Onewoman who saidshe had not beenabused herselý did not know of anyoneelse who had been,but saidher boyffiend may well abuseother people?. doesh!t know what he'sdoing half the time, he!s out of control, hell have it with anybody'(TN1). This man had, in fact, been referredto my teamfor sexuallytaldng advantageof lessable women.
As well as giving informationabout what happenedto them and how they felt about it, some of the women also revealed,in passingmostly, what happenedto the men who abusedthem. Aside from the woman who said her father was imprisonedfor what he did to her and the womanwhose neighbour was arrested(but very likely not prosecuted),it is apparentthat there were no legal consequencesfor all the other men. Two of the fathers who raped their daughterswere not reportedto the police becauseof the perceivedtrouble that would causein the wider family network; another man who raped was not reported becausethe woman!s family were known to the police and wanted no fiinher dealingswith them. The most likely responseto men with learningdisabilities was, if anythingat all happened,to be 'told off. The man with lean-dngdisabilities who attacked MC and bit her face was already on sexual suppressantmedication, because of his past abusivebehaviour. The doctor's responseto his latest offencewas to increasethe dose of this medicationand keep him on the ward for two days.See chapter seven for a fuller discussionon achievingjustice for women who havebeen sexuallyabused.
Whetherthe womenthemselves had sexuallyahused others It seemedunfikely, from what the women had saidabout not taldng the initiative andoften not wanting or enjoyingsexual contact, that they would havesexually abused anyone else - but 151
neverthelessthey were askedabout this. Somewhatsurprisingly, only one woman appeared offendedby the questionand so answeredin a rather indignanttone of voice. The others all gavematter- of- fact, short answersto the effiectthat they did not do this. Occasionallythere was a brief elaboration,eg:
Tve neverforced anybody,they only force me'(EY) No, I!m not the forcing type! (NU-1).
One woman initiaUy said that she had, in fact, forced a man to have sex with her, so this was exploredfurther. It transpiredthat her definition of her forcing him was 'I kept on at him until he saidyes' (GN). Although this was, as I pointed out to her, a form of pressureand therefore unacceptable,it was not the sameas forcing someone.At an earlier stagein the interview this woman had said shedid not ask men for sex,therefore there was someinconsistency in what shesaid regarding this.
Sexwith lessable people Becauseit would be naiveto expectpeople to freely admit to sexuallyabusing others, I tried another way of gauging whether the women would do this or take advantageof others sexuallyby asking them about sex with people less able than themselves.It is worth noting herethat althoughI meanta lesserin tellectual ability, the women themselvesas often as not constructed'less able' in physicalterms ie peoplein wheelchairswere mentioneda numberof times, as were people who could not talk. Through further clarification from me such as 'peoplewho are not as clever as you' or 'peoplewho carft understandthings like you do, and by namingcertain individuals known to both of us as examples,I was satisfiedthat the women hadgrasped I was talking aboutintellectual and not just physicaldisabilities (although for some of the peoplewe had in mind, both may havebeen present). In this part of the interview,I had to use languageI would normally avoid, becauseof its stigmatisingnature eg 'handicapped people',as thesewere termsthe womenthemselves used freely and understood.
With referenceto the questionof whetherthey had,or would have,sex with someoneless able than themselves,two women did not respond and one responsewas very unclear. Of the remainingfourteen, two women saidthey n-dghthave sex with lessable men if the men asked 152 them to. One of these mentioneda specific man who used a wheelchair and who was intellectuallyquite able and who I knew did initiate sexualcontact with others.However, by far the biggest majority (twelve) said they would not do this. Moreover, they felt this was a wrong thing to do, becauseit was'not fair, eg:
No, it's not fair on the handicappedones, because they woulddt know what's going on! (LT) I think it's terrible,I really do, especiallyif they'renot right upstairs[points to head]'(ICN)
No, oh no, poor buggers,it'd kill them,wouldn! t itT (EY).
It is interestingthat a numberof the women saw it asbeing unfair and saw lessable people, by definition,as being at a disadvantage.This is similar to the view taken by many professionals andacademics (McCarthy andThompson 1992, Brown andTurk 1992).What is interestingis that the women themselvesvery frequently had sex with men more able than themselves;in effect they were the less able peoplein those encounters.But they did not usually construct their own experiencesas beingunfair on thosegrounds.
In the courseof the abovediscussions three of the women (all in hospitals)said they knew of menwho did havesex with lessable people and they thoughtthis was wrong, for example:
'What makesthem want to have sex with a personwith a discapability(sic)? I think it's all bloody wrong (MC)
EY: Someof the mendo, someof the patientsand some of the outsidemen
NM: They chosethe handicapped ones?
EY. If they can'tget a high-gradepatient, they get a low-grade
AM: What do you think about that? Is it afright?
EY: No rve talkedto peopleabout that, I don!t think it is right
AM: I agree, but why do you think it's bad to have sex with a handicapped person?
EY-.Because it qouldkill them or sendthem silly 153
AM: Do you think they understand enough about sex?
EY. No they clon'tand it's not their fault it's the personwho goeswith them
AM: I think you're right and if you ever know this is happening you should report it, because those people need others to look out for them
Sexeducation The women were askedhow they first learnedabout sex. As is apparentat variouspoints in this study,the womenhad cleadybeen influenced by manyof the various'messages' that are in circulationabout sexualmatters, many of which are sexistand damaging(NMard 1994).1 was thereforeinterested in someof the subtleways sexualmessages are communicated,but this did not prove to be a fruiffW areato explore,probably because of the abstractnature of the subject matter. Consequentlythe emphasishere is on formal andinformal sex educationand leaniing from experience.(Some women learnedfrom more than one source.) Three women did not answerthis question,although one said she had not leamedanything aboutsex at school.Three women saidthey first learnedby being sexuallyabused as children or young women, two by their fathersand one by an older pupHat school.One of thesewent on to receivesome formal sex educationmany years later, the other two did not. Womenwith learningdisabilities learning about sex through beingabused is noted elsewherein the literature (Hard andPlumb 1987).Five otherwomen alsolearned from direct experience,some of which was consentedsex eg, I went out with a bloke calledT., quite a few yearsago and he taught me!(13N). For two of thesefive womentheir consentis in doubt:
AM: How did you first learn about sex? TY: When T. did it to me.
No-one told me, exceptmy boyfriendwanted it, I still haveto go out to hid (rc).
Only'five of the women said they had receivedany formal or structuredsex education.Three had had some educationat school ( all specialschools for children with mild / moderate learning disabilities) and two had been taught at adult education (one adult education programmein hospitaland one at an Adult Training Centre).Three of thesewomen specified 154 that they had only been taught about reproductionand contraception,the other two did not saywhat the contentwas. One womanwho had beentaught about reproductionmade a point of sayingshe had not understoodwhat shehad been taught, despitethe fact that shehad what might be consideredan advantageover the other students,because she had given birth to a child herself
The most common source of information about sex (for eight women) was when it came informallyfrom other women. Six women namedtheir mothers(including one foster mother), one a youngersister and one woman fliend ashaving talked to them about sex.In sevenof the eight casesthe subject matter was, as one woman put it 'the facts of life! (TN1) ie purely concernedwith menstruation,pregnancy and contraception.Only one woman had been spokento about other, lessbiological, matters: this was a young woman who had beenplaced with foster parentsbecause of sexualand physicalabuse at home and her foster mother had talkedwith her abouther experienceof rape.
Despite mothers being a more forthcoming source of information than anyone else, two women pointed out that their mothershad not talked to them about sex at all. One said her motherhad not told her anythingspecifically "because of what I suffer with! (TC), althoughshe is referring to her epilepsy,rather than her learning disability.For the other woman it was becauseher mother was uncomfortablewith any discussionof sexualmatters and, she seems to imply, was uneducatedherself
When I told my mum aboutthe sex education,she said ,rm as greenas grass, I shouldcome with you". But my mum didn't like talking about it... if she saw her didn't like it, d turn the a newspaperwith a woman showing ..she she! page quick. If therewas anythingin the paperabout abused women or anythinglike that, she!d saynot to readft. OCN)
Otherpeople'ssexual experiences The women were askedwhat they knew, or thouA aboutother people!s sexualexperiences. I was interestedin how they perceivedthe sexualityof non--disabledpeople, so askedthem specificallyabout this, suggestingby way of examples,that they thought aboutpeople who did not live or work in the sameplaces as them for example,their families,staff and their families, etc. The women were askedthree related questions:whether they thought other people did 155 havesex; whether they thought this was broadly the sameas theirs or not; and whetherthey generallythought menand women enjoyed sex equally.
Two women did not know whether other people had sex and one thought they did not. The remainingfourteen thought other peopledid havesex, although a numberof them pointedout that it was difficult to know and/orthat they were not sure:
TWs quite a hard questionactually' (FM I don't know, do I? rm not there!(Gi).
Thesewomen were highlightingthe dffEcultnature of the questions,which essentiallyrequired them to use their imaginationand/or extrapolate from their own experiences,things which are often hard for peoplewith leamingdisabilities. Not surprisinglythen, six women did not know or could not imaginewhether other people would have broadly the same Idnd of sexual experiencesas they did. However elevenwomen did venture an opinion, with two of them thirildrig other people'ssex would be like their own and nine thinking it would be dfferent. Seven of the nine gave reasonswhy they thought it would be different, including use of Merent sexualpositions, having privacy, having sex at night insteadof during the day. One woman, who had experiencedsex inside and outside of hospital, thought her own sex fife outsidehospital was closerto the 'norm!than what shewas currently experiencingin hospital. Frequencyof sexualcontact seemed to be the essentialdiffierence; 'Sex life is differenthere. At homeit was more now andagain, not all the time like it is here!(TN.
As to their thoughts on how other people enjoyedtheir sexualactivity, one woman did not know and four thought women and men would both enjoy sex equally. Three women, however,thought that women generallyenjoyed sex more than men. Two of them believed this was becauselove and marriage meant women would enjoy sex more. Mine women thought that it was men who enjoyed sex the most, although one added the rider that sometimeswomen could enjoy it too and gave the exampleof her married niece,who she thought Eked sex.None of the women knew why they thought it was men who enjoyedsex the most; 'theyjust would really' (DO) was the generalfeeling. It is reasonableto assumethat manyof them were basingthis on their own experience;indeed one woman saidas much: 156
XM: Why would men enjoy it more than women? boyfriend TC: I know why - becauseof my enjoying.
The womerfs belief in, and acceptanceoý the fact that men simply did enjoy seXmore than womenconcerned me andled to the following conversationwith one of the mostable women:
AM: Thinking generally about other people, who enjoys sex the most?
DY: Men.
AM: Why is that?
DY: Donl reaUyknow, do I? Men do enjoyit morethan women.
AM: That's whAt most people say, but I think it's important to think why that is.
DY: [irritated, exasperatedtone] How do I know why?
AM: rm not saying you do know, or that I know either, but it's important to think about, becauseI don't think it's good enough. I think both women and men should enjoy it equally and it bothers me that they don't
DY: [flippant tone of voice] Does it?
NM: Yes. Do you think it's important? Does it bother you that men get more pleasurethan women?
DY: It don't reaUybother me anyway[big obviousyawn]. irritated her Her apparentlack of concernabout the situationirritated me,just as my concern and,as the atmospherewas becomingtense, I droppedthe subject.
Sexon Television One woman did not watch TV and another gave an answer totally unconnectedto the questionand seemednot to want to discussit. The remainingfifteen had all seensome sexual activity on TV. Only two reportedany embarrassmentwatching it. I askedwhether what they- fact sawbore any relationto what they had experiencedthemselves. Despite the that they only hadto rememberwhat they had seen( as opposedto the previousquestions which askedthem did to think hypothetically)this seemeda very difficult question.Ten women said they not 157 know or did not answer.Of the five who did know, all of them thought the sex they saw on TV was very diffierentfrom their own. Threedid not sayhow and two did: one saidsex on TV was much more passionatethan real fife; the other saidpeople on TV had sex lying down and they kissedand cuddled, none of which shedid.
The women were askedwhether men and women on TV enjoyedsex equally and all fifteen answeredthis question;two thoughtboth enjoyedit equally;six thought men enjoyedit more; and six thought women enjoyedit more. Of those who thought men got most pleasure,only one woman could say why and shewent on to describea rape scene.Of thosewho thought women got more pleasure,all gavereasons and thesevaried considerably:one said sheknew the women liked it becausethey verbally encouragedthe men and madenoises; two thought the women on TV liked it becausethey were married and wanted babies(whether this was actuallypart of the plot of programmesthey were thinking of or their own projection,I do not know); one thought the women on TV enjoyedit becauseif they did not, the menwould force them anyway;and one thought she could tell the women on TV enjoyed sex more than the men,because they stayedin bed, looking relaxed,while the men got dressedand went home. The fifteenthwoman gave one of thoseanswers which mademe realisethat, as researcherswe sometimesask stupid questions;she pointed out that neitherthe women nor the men on TV enjoyedhaving sex, because they were not really doing it, they were only acting!
Whatthe womenliked about their bo&es [The fol.lowing sectionswere added after the first interview, and therefore relate only to sixteenwomen. ] Severalrelated questions were askedto try to find out how the women felt about themselvesas adult women, their body image and appearance.They were first asked what they liked about their own bodies.Despite this being a simple question,in linguistic terms, it proved difficult to answer for several of the women and a number asked for chirification.
Four women saidthere was nothingthey liked abouttheir bodiesand a finther threesaid it was 'ahighf, but could not or did not sayanything positive beyond that. Most of the remainingnine womenneeded a fair amountof promptingto saywhat they liked. This was unusualcompared with the rest of the interviewsas a whole, so it may meanthat what they said reflectedtheir 158 wish to give me an answer,rather than being a true reflectionof how they really felt abouttheir bodies.Nevertheless three women were mostly positive,listing a numberof featuresthey liked aboutthemselves, eg:
NM: I want to ask now how you feel about your body. Not sexual parts necessarily,but your body generally. What do you like about your body?
EY: I like my figure (laughs)
NM: Good. What is it you like about your figure?
EY: It's nice and sofý you know, but I am a bit fat, but it's a nice built body, nice backsideand differentthings
NM: OK, anything elseyou like?
EY: My feet andmy legs.That lady in the chiropodisttold me I had nicefeet. I don't wanI to be rude or nothing, but when I was going with my boyffiendhe told me I had nice legs.
Another of thesewomen said she liked her legs, despitethe fact that she had very bad leg ulcerswhich shehad aggravatedfor monthsby picking at them. The medicalstaff were of the opinionthat shedid not want the ulcersto get better andso was making surethey did not. One perceivedexplanation for this, put forward by the medical and nursing st4 was that this behaviourwas linked to her emotionaland mentalhealth problems.
Six women could, after someprompting, comeup with one or two things about their bodies which they liked. The fist is interestingfor its content and variety; one woman said she liked her face and two otherstheir figures.But after that the fist becomesa bit more unusual:one woman said she liked her nose (she made exaggeratedclaims about how small and delicate herswas and how big andugly minewas! ); anotherwoman said what sheliked abouther body was how cleanit was (in fact shehad grave problemsMth her personalhygiene); another said what sheliked was her body 'beingleft alone!(TC). What theseresponses demonstrate is that it is not really possibleto talk about womeds bodies in straightforwardand positive terms without tappinginto more complicatedissues.
Whatthe women&sliked about their bo&es Not surprisingly,in view of the above,the womenfound thesequestions easier to answer,less clarificationand promptingwere necessary.However four women still did not know or reply. 159
Two women were negativeabout almosteverything about the way they looked, althoughone of these was overwhelmingly concerned about her weight. She felt that being fat overshadowedany other, positivefeatures she might have.As with so many women (Orbach 1978, Szekely 1988) her perception did not match reality -I think she could have been described,at most, as slightly overweight. Six women fisted one or two negativefeatures abouttheir bodies:two of thesealso concerned perceived excess weight; one said shethought she was too tall. Two women said they disliked their genital area: one specifiedthat she dislikedthe way her pubic hair got itchy when she had sex;the other linked her dislike of her genitalsto her dislikeof sex.
Four women saidthere was nothing about their bodieswhich they disliked (althoughthree of theselater saidthere were thingsthey wantedto change- seebelow). One of the womenwho saidthere was nothing she dislikedhad a lot of facial hair. As this is somethingmost women do not like and aboutwhich there are strong socialtaboos (Brownmiller 1986),1 would have liked to havediscussed this further.However I felt it hadto be raisedby the womanherselý as it would have beentactless for me to draw attentionto it. In the event she did not mentionit andit was thereforenot discussed.
Whatthe womenwanted to changeabout their bo&es The women were askedif they could, what they would changeabout the way they looked. Two did not know. Another two wanted to changeeverything. One of these(whose Prader- Willi Syndromemeant she had no secondarysexual characteristicsor womb) spoke very movingly about the profound changesshe wished for [NB it should be noted that this statementcame from her after I hadhad severalsex educationsessions with her, which almost definitelyaccounts for the fact that shementions the clitoris:
IM changethe way I was born, so I could be bom againa normal femalebaby and rd havea clitoris andbreasts when I was older andrd seemy periodsand be ableto haveIdds and not havediabetes. (N1Q
Four other women wantedto changespecific things such as strengtheningweak anklesor have longer hair. Two of thesewomen specificallymentioned cosmetic surgery; one wanted facial surgeryso shecould be made'asbeautiful as someof them on the tele' (EY); the other wanted a breast enlargementdespite having very large breastsalready. TUs was the woman with mentalhealth problemsmentioned above regarding her leg ulcers.I did havethe feeling that 160 shesaid she wanted even larger breaststo get somekind of reactionfrom me - but this maybe pure projection on my part, as I find it hard to believethat someonewrith very large breasts would want them evenbigger.
By far the most commondesired change (named by ten of the fourteenwomen who saidthey wantedto changesomething) was to loseweight. This accuratelyreflects the pre-occupations of most non-disabledwomen (Lawrence 1987), suggesting that women with learning disabilitiesare similarlyaffected by socialpressures to be thin. Most did not specifyhow much they wanted to lose, but the two who did had unrealistic and worryingly low target rates of sevenor eight stone. Someof the women seemedmore distressedabout their size and more seriousabout losingweight than others,but all were concerned.Many spokeof how difficult it was to actuallylose weight and how their desireto be thinner,conflicted with their enjoyment of food (I like my food' (N4C))or their needto eat (I would not like to be fat, but I haveto eat.I haveto eat to five, I do' (TC)).
Threewomen spoke explicitly about how staff in lean-dngdisabilities influenced or controlled their decisionsabout weight. My wider knowledgeof the serviceswould suggestthis was a more commonissue that it appearsfrom thesenumbers however. One woman saidit was her keyworkeesdecision that sheshould diet, not her own. Another describedthe staffs efforts to control her eatingin the following way: They won!t let me haveice-cream, they say "you can't havethis, you can.1 havethat". They bossme around'(MH). This woman had in fact put on a lot of weight as a direct result of the medicationwhich staff had prescribedfor her.
Another describedhow staff could exert a more subtle,but still powerful influence,as role models:
KS: rd Eketo be sEnny
NM: Why do you want to be skinny?
KS: rd like to losea bit more
AM: Do other peopletalk to you about losing weight?
KS: We!re supposedto be weighedevery month
AM: Do the staff encourageyou to loseweight? 161
KS: Yeah,I've seenthe stafflose weight
AM: The staff loseweight themselvesdo they?
KS: Yes, we'vegot thesescales at the moment
XM: Which staff lose weight?
KS: IVswomen staff
NM: And do you want to be like them?
KS: Yes, 'coswe! ve got the scales.
Shealmost seems to be implyingthat they haveto loseweight becausethey havescales.
nether the women'sbo&es gave themanypleas-ure The women were askedwhether their bodieswere sourcesof pleasurefor them and this was explainedin two ways: either in the physicalsense; or psychologicalpleasure eg pride in their bodiesor a more generalsense of being pleasedwith them. Once again this proved to be a difficult question,with a numberof women needingclarification. Three women did not know or give a reply. Two said that everythingabout their bodiesfelt good to them. Five women mentionedone or two specificthings they got pleasurefrom: one saidher handsbecause of all the things shecould do with them; interestingly(although it is probablydue to sexualitybeing the main topic of my work with the women), all the four others said it was their sexualor private body parts which gave them some pleasure.One of these women specifiedthat the pleasureshe got was from knowing her boyfriend liked 'playingwith md (TC). The biggest singlegroup (of six women) saidthey got no good feelingsat all from their bodies.
Personalhygiene
As anotherway of finding out how the womenvalued their bodiesand what control they had over them,a numberof questionswere askedabout personal hygiene. Firstly, the womenwere askedwhether they valuedcleanliness ie whetherit was importantto them to keep clean.All said yes and this is not surprisingly,given how difficult it would have been for them to have saidno, evenif this were the case.However it is perhapsworth noting that two of the women 162 did in fact havevery poor personalhygiene, despite being consideredby their support staff as being quite capableof attendingto their own needs(see below for further discussion).What was interestingwas the reasonsthe women gavefor why it was importantto keep clean.Five gaveexpected responses such as unpleasantbody odour and related socialconsequences. But an equalnumber named dire physicalconsequences ranging from the general( sores,illnesses and diseases)to the specific (whooping cough, bronchitis and AIDS). Because of the exaggeratedand incorrect nature of much of theseresponses, I think it is likely that the women mayhave been warned by carersthat they could get somekind of infectionif they did not keep cleanand they hadthen associatedthis with the namesof anyillnesses they knew of
The women were askedabout their accessto bathroomsie whether they could haveas many baths, showers and washesas they wanted. Rather surprisingly (given that all except one woman lived with groups of others,where therewere often far more peoplethan bathrooms) all the womensaid therewere no restrictionson them - at most a few women saidthey had to wait their turn, but none suggestedthis was for unreasonablelengths of time. If this is an accuratereflection, then lean-dngdisability servicesare certainly managingthis aspect of people!s carevery well, in lessthan ideal circumstances.
The women were askedwhether they had completecontrol over their own personalhygiene or whether staff or their carersplayed a role. Five women said others did play a role, which usuallyinvolved the woman beingtold when to have a bath or a wash.In four casesthis was staff,for one woman it was her mother(with whom shedid not five). Sometimesthis adviceor instructionwas acceptedby the womenconcerned, sometimes it was resentedwith the women assertingthat they were old enoughor capableenough to seeto themselves.
Onewoman saidthe staff did not try to influenceher personalhygiene and that shetook care of herself This was one of the very few instanceswhen I knew a woman was not telling the truth. She had, in fact, very poor personalhygiene, especially during her periods, and staff certainlydid play an activerole in trying to get her to changeher habits.I did discussthis with her at a later stageof my work (thereforethe conversationwas not recordedor transcribedas the interviewswere). Shewas not a verbally articulatewoman and so it was hard to be sure exactlywhat shefelt. But my interpretationof what was going on was that refusingto washor 163
changeher clothes was, for her, a way of gaining some control over her own fife and, importantly,a weaponto the annoyand upset staff .
Only two women mentionedshaving their legsand underarms(nobody was specificallyasked aboutthis). Both saidthey could not do this for themselvesand one relied on st4 one on her mother,to do this for them.For both, shavingwas not a choice,but a perceivednecessity:
You've got to, you can'tleave it, canyouT (KS)
For the other woman the messagesabout getting rid of body hair had beeninternalised to the point where shesaw it as an essentialpart of beinga woman:
Becausewe! re women, aren'twe? Men don't do itý don't have to do it. But we!re not men,are we? WeYeladies, we haveto shaveunder our armsand our legs otherwisewe wouldn't be humanwould we? (MH)
Although most of the women did not havestaff explicitly telling them when and how often to wash,there were other ways staff intrudedon the womeds senseof themselvesor their sense of personalspace. For one woman this was when staff madepersonal comments about her appearance:
NM: You said before that staff didn't like your hair?
MH: No, they didnI like it when I had blonde highlights,they said I look like a tart
NM: Who said that?
MH: One of the staff,I don't like looking Ekea tart
AM: You don't. I thought it looked nice.
For anotherwoman staff literaUyintruded upon her privatespace:
DY-. Like this morning I was just about to get in the shower and the staff came in and told me to have a bath and they saw me stark naked without any clotheson andthat and it was really embarrassingfor me, they just looked at me while I was stark naked and it was very embarrassing.They camein and said "you know full well yoifre not 164
aflowedto havea shower,you've got to havea bath" and they saw me stark nakedand it was embarrassingfor me.
AM: Didn't they knock on the door?
DY: No, they just peeredaround the door and looked at me, while I was stark naked.
MM: Can you complain to anyone about that?
DY: I will complainif it happensagain.
NM: Are there no locks on the doors?
DY: Not by the showers,in caseyou havean accidentor something
MM: But if the staff can just walk in, so can other residents, the male residents... [NB men with histories of sexual offending are on this ward]
DY: The systemin this hospitalis very poor indeed,very poor.
I'd complain if I were you, becauseit's not right.
Clothes
The women were askedquestions about how they felt about the way they dressedand who had control over this. In terms of what they put on eachday, almost all the women saidthey decidedfor themselves.Some had the adviceof staff in this, most did not. However somestaff madeuninvited comments:I decidernyselý but the staff like you to changesometimes, they "I don't like say that on you, changeit" ' (EY - aged55).
The picture was quite different when it came to choosingwhat clothes to buy. Only two womenhad completecontrol over this and madeall their own decisions.For one of thesethis her but from her death was not choice, resulted mother's a few yearspreviously - prior to that shehad relied on her mother'sadvice when shoppin&a situationshe preferred.Nine women did make choices about what to buy, but did so with staff help, which most wanted and appreciated.One of thesewomen was being activelyencouraged by staff to go out aloneand shopand she was proud of her recentachievements in this area.For the remainingfive women, staff were also involved but the balancewas difIerent: the staff chosethe clotheswith the womeds help, as opposedto the other way around. Interestinglythis group, who played a 165
smallerpart in choosingtheir own clothes, were not, on average,less able than the other women - indeedthree of them were amongstthe most able in the whole sample.What they had in commonwas that they were all in hospital. However it is not possibleto draw clear conclusionsfrom this, as five of the nine women who had more control over their shopping were also hospital residents.It is probably more likely to be dependenton attitudes of individualstaff membersrather than anythingelse.
Six women,from both the groupswhich involved somestaff help, clearly expressedthat staff did, in fact, havethe ultimatecontrol in the decisionmaking process. I askedthem what would happenif they saw somethingthey liked, but the staff memberdid not: two said they would allow themselvesto be persuaded not to buy it; four were clearthat they simplywould not be allowedto haveit. It shouldnot be thought that all the womenwere happywith staff havingso much influence.In fact this was one of the few occasionswhen a significantproportion (a quarter)expressed resentment towards staff andindicated that they did not alwaysco-operate:
I like choosingmy own clothes,my nursesnever let me choosemy own, they like choosingthem for me!(TC)
T choosemy own. The staff do say things sometimeslike "I don't think you shouldwear that", but it's my own decision,if I want to wear it, I will. They caM really tell me what to put on! (DO)
Well, ifs; up to me, ifs my money,isnI it? If I like it and they dodt like it, if s tough, isdt it? If I like it, I buy it' (DY).
None of the women saidthe way they dressedmade them feet generallybad aboutthemselves. Three did not give a reply and two saidthey just felt 'alright'about the way they looked. Four said the way they felt depended,largely, on whether they thought they looked fat in certain clothes.Seven women saidgenerally they felt good aboutthe way they dressed,although few were entirely satisfied.Several wanted more or better clothesthan they had. Sometimestheir wisheswere very modest;'I needsome new knickers,I n-dghtget them for my birthday'(GJ). Sometimesthey were more ambitious; My clothes make me feel good, but they donl make me feel good enough. They don.1 make me feel as good as what rve seensome people in. If I had somethingreally nice, rd feel very good. I ainl got no fancy clotheslike some peoplegot, like the starson the tele, I wouldn't mind somethinglike that (EY). 166
Two of the women who saidthey paid attentionto their appearanceand thought they looked good, in fact dressedin ways which most peoplewould probably considerinappropriate or sloppy eg summer clothes in winter, clothes that were dirty or in need of repair. In one interview I attemptedto explore what I saw as this mis-match between the reality of a wom&n'sappearance and how shesaw herself This was a mistake.The woman told me that shewore clothesthat were cleanand that if anythingneeded mending she would take it to the hospitalneedleshop for repair. As shewas sayingthis wearing a stainedraincoat with several buttonsmissing, I questionedit. It was a very awkwardmoment: the look on her face andtone of voice (when she said shehad lost the buttons) clearlytold me that, in pointing out the real state of her clothes, I had oversteppeda boundary of polite and respectful discussion.I hesitatedwhether to apologisefor my insensitivityand decidedit was better not to draw any more attentionto the issueand droppedit. But I certainlyregretted my rudenessand naivetyin thinking that such an issuecould be explored in the way I had imaginedie at my initiation rather than hers. Also part of the awkwardnessat what I had done was that I think we both realisedthat it was outsideof my role and the context of sex educationfor me to have been questioningthe state of her clothes.Part of the discomfort for the woman herself,may also have been that the discussionalso expo,sed a differencebetween me and her, becausemy clotheswere alwaysclean.
SerualHealth
The women were askedwhether they had ever had anythingwrong with, or infectionsin, their genitals.I did not specify sexuallytransn-dtted diseases (SIDs) as I anticipated(rightly as it turned out) that not all the women would have recognisedwhen somethingwas sexually t-ansmitted.
I was somewhat surprised to find that the mdjority of women said they had had such infections.Surprised because I simply did not know infectionsof that kind were so common and becausein my sexuahtywork with women with learningdisabilities more broadly,giving advice,information and reassuranceon this particularaspect of sexualhealth (as opposedto IHIIVprevention) had not beena strong component.NTine women saidthey had had infections. Another declined to answerthe questionand there was a definite awkwardnessor tension apparentýwhich led me to feel that sheprobably had, but did not want to say.Three of the nine 167 who did report infectionshad hadtwo or three,the othersonly one. The infectionsmentioned includeda very severeoutbreak of Herpes,genital warts, 'VD', Thrush, Cystitis, and the less specificgenital itching and pain or burningsensation on passingwater. In addition onewoman hadalso had treatmentfor pre-cancerousabnormal cervical cells.
Only four of the nine women knew, or thought they knew, how they had got their infections. Two saidthey got them from havingsex with men who were not clean,one saidit was from her boyfriendand the fourth woman (one of the most able) saidit was from 'havingtoo much sex!(DY). Most other women did not know how or why they had developedthe infections and acrossthe whole sample,a numberdid not have any awarenessof the nature of SIDs. This was explainedand at a later stage of my work, I would have covered sexual health matters more thoroughly, although it must be said the emphasiswas usually on IRV prevention.When I was explainingto onewoman how STDs could be passedfrom one person to another,she asked the very pertinentquestion of how the very first personever got infected then,to which I could only confessI had no idea!
The women who had had any kind of infection in their genitalswere askedhow they had felt about this, in particular whether they had been embarrassedor worried. I was interestedin how the women would have coped with the social stigma still attachedto STDs and other genito-urinaryconditions. However, only onewoman seemedto perceivedthis stigmaand said shehad been too embarrassedto even tell her doctor. Another reported embarrassment,but this was not becauseof the natureof the infection(ie possiblyrelated to sex) but due to having to scratchher genitalarea, which sheknew was not sociallyacceptable. Two womensaid they hadbeen worried, but this was becausethey had actuallybeen ill. and had beenconcerned for their health.None of the othersseemed to feel particularembarrassment or stigma.In one case (wherethe woman hadHerpes) staff were concernedabout her lack of embarrassmentand the fact that shedid not seemto feel the needto keepit a privatematter.
Although they were not specificallyasked, two women mentionedhaving had smeartests and how muchthey dislikedthis becauseit hurt. One of theseexplained how shehad felt let down by a femalemember of staff who had accompaniedher for the test: T said to me "dodt be a baby,it won't hurt" but it did hurt!'(W. In my work with women with learningdisabilities in 168
this area,I havetold the womenthat the test may well hurt them, but not for long andthat it is worth it, becauseit cansave them from getting really ill andhurting more later.
Contracepfion
Four women were not using any contraception: one was infertile (due to Prader-Willi Syndrome);one was presumedby staff to be infertile (as no pregnancyhad ever occurred despite years of unprotectedsex); one was past her menopause(but had previouslyhad an intra-uterinedevice (IUD); one hadpreviously been on the Pill, but had come off it as shewas not sexuallyactive at that time. Of the thirteenwomen who were using contraception,seven were on the Pill, four had the Depo-Provera,injection, and two had ILJDs.
The fifteen who had ever used contraceptionwere askedwho had decided whether they shouldhave it andwhich contraceptionto use. Sevensaid doctors had decided,two saidtheir had parents decided(in fact one of thesewomen appearednot to evenknow shehad an RJD), two saidstaff had decidedand threedid not know or could not remember.Only one had made decision the for herselýa shockingfact given the relativelyhigh levels of ability of the whole group. The onewoman who had decidedfor herselýwas the youngestwoman (only nineteen), had yet she the most matureand responsibleattitude towards her own sexualhealth. Not only had shedecided on her own contraception,but also to use condomsfor additionalprotection from FHV. In addition, she had actively sought and acceptedwhat she saw as good quality advice:
I went to the Family PlanningClinic and talked to them about it. They were really helpful,really helpful.I felt comfortablethere, they makeyou feel part of it (DO).
The respecffWand inclusiveway she was treated by the staff at the Family PlanningClinic contrastssharply with some of the disrespectfWand patronisingattitudes from medicsand other staff someof the other women in this study experienced.
The thirteen currentusers of contraceptionwere askedwhether they were satisfiedwith their method and the way decisionswere made about it. Six were satisfied,although one of these had numerousquestions and concernsabout the Depo-Proverainjection and brought along a leaflether had GP given her - it was full of very denselytyped medical information, way above 169 her reading and comprehensionlevel. I clarified for her as best I could, but told her she probablyneeded more medicaladvice. Another woman said,when askedthe direct question, that shewas satisfiedwith her contraception,but at anotherpoint she indicatedshe did not want to use contraceptionat all, asshe wanted to havea baby:
MH: What wiH happento me if I caM havechHdren?
AM: What do you mean what will happen to you?
MH: What would happenif I adopt one?
NM: You wouldn't be able to adopt one
MH: I thought if I adoptedone, I could look after it, dressit, put it in the pram andthat. rd like to havea baby. What arnI going to do then?
AM: Well, lots of people don't have children and I suppose you will be one of those people
MH: I fike chfldrenI do
NM: WeH, I think it's not going to happen, especially as you're already 41.
Four women were dissatisfiedwith their contraception.One, who had previouslylived in the community,but who was then in hospital,complained that shewas not able to makeher own decision:
MM- The contraception you use now is the injection, isn't it? Whose idea was that?
TM: Vongpause] We've got to here.Iley say it's up to you if you want it, but when the date!s due andyou don't want it, I meanyou canl sort of say no and you've got to haveit
NM: Who makesyou have it?
TM: The staff
AM: Well if you really don't want it nobody can force you, but you're it's if it right to say that very hard to say no the staff want you to... so wasn't your choice by the sound of it and it doesn't sound like you are happy with it 170
TM: I said to L. [ward manager]that I was down and depressedover not havinga baby
NM: Why do you think the staff don't want you to get pregnant?
TM: They think you c&t haveone here,but if I did have one on the way in 9 monthsI would be out of here
NM: Do you think you would be able to look after a baby?
TM: I could look after a young babyuntil it's beginningto walk
MM: Then what, once it can walk?
TM: M stiHkeep it, it's a strain
NM: It is a strain. I guess a lot of staff think that you wouldn't be able to look after a baby and that's why they're concerned that you don't get pregnant
TM: Thafs why they give me the injection?
MM: Yes.
The three other dissatisfiedwoman all wanted a different method of contraception,although only onewas ableto saywhy - shewas worried about gainingweight from taldngthe Pill. Her motherhad put her on the Pill, althoughthe woman said shehad specificallytold her that she did not want it. Two woman did not know whether they were satisfied with their contraceptionor not.
Senseof se6(assexual heings In the final stagesof the interviews,I askedsome questions which tried to gaugethe womerfs senseof themselvesas adult sexualbeings. This was a difficult areato explore,and the abstract nature of the first of thesequestions was clearly a strugglefor some of the women. I asked eachwoman if sheconsidered herself to be a sexualperson eg someonewho was interestedin sex, had sexualfeelings, made decisionsabout it etc. Or whether sex was rather something thatjust happenedto them.Five women did not know or reply, probablybecause they did not understandwhat I was trying to get at. 171
The remaining twelve, however, did reply, with the vast majority (ten) giving negative responsesie to the efFectthat they did not considerthemselves to be sexual,rather they were usually on the receiving end of someoneeVs sexualbehaviour. This group included the womanwho had beenunreservedly positive about all her sexualactivity and the woman who was enjoying a loving relationshipwith her boyfriend where she did feel in control. This indicatedthat there had been some confusionin the minds of some of the women regarding this question.However otherswere crystalclear:
MC: I haveno sexualfeelings whatsoever
AM: But you do have sex, so is it something you want or is it something that just happensto you?
MC: A ratherlot of it is forced on me.
I doift feel as if rve got sexin my fife, somethingholds me back, I dorft know what it is, I supposeit's becauseof what happenedto me with dad, that holds me back. And rve read about things that happento peopleyou know, not all women, it happensto men as well, they get strangled,get hurt, and I think to myself "is it worth it?". For that 3 minutesof madness,a lifetime of sadness. TI&s all it is really,isn't it? (ICN).
Another woman gave an answerI found difficult to classify,but feel it probablycounts as a negativeresponse, as shesaid when I askedher if shewas a sexualperson My boyfriendlikes playingwith me and he shouldget marriedto me. It's not right for him to go without marrying me!(TC).
There was only one woman who gave anythingapproaching a positive reply, indicatingthat she did consider herself to have a sexual side. But this was also tainted with negative experiences'Other people do sexto me, but I am sexymyself as well'(EY).
The women were askeda more concretefollow up questionregarding what madethem feel good or bad aboutthemselves when havingsex. Four did not know and five saidthey only felt bad aboutthemselves, but did not elaborate.Three women gave mixed responses:one said,for example,during sexitself shedid not feel anythingmuck but 'at the end of it, I feel brilliant. If there!s any problems,we alwaystalk about it. We Idssand make up' (DO); anotherwoman 172 said how she felt about herselfdepended on the quality of the experience,and that largely dependedon the man:
EY: What makesyou feel good is in your body, you know, it's all lovableand that. The hard thing aboutit is when anybodyhurts you or forces themselfon you or you get any painsand thafs an awful thing
MM: Most of the time are you left feeling good about yourself or not?
EY: Sometimesgood and sometimesbad, it all dependson who you go with. With somemen it's alwaysbad and with some men you think you like them andyou havesex but thenyou dorft really like them andthat's a bad feeling
MM: If you've had bad feelings with someoneand he wants to have sex with you again, what would you do?
EY: It's bestnot to go vith him
AM: That's right, it's important to try to learn from the good and bad feelings. I think a lot of people find it difficult to learn from the bad feelings
EY: ThaVstrue, but sometimesyou haveto go back againbecause the men say TU give you a good hiding" or 711make you" and they hang aroundand you can'tget rid of them.
Importanceof sexin the women'slives The final questionof the interviews(although it shouldbe rememberedthis was not the end point of my work with the women)was 'is seximportant to youT. As I was certainthat they all understoodthe word 'important, I left eachwoman to interpretthe questionin whateverway was most meaningffilfor her.
Three women said sex was important and interestinglytwo of them said this was becauseof pregnancy.One of thesemeant it in a negativecontext ie if you accidentallygot pregnantthis would be an important matter (NB. this woman had got pregnantherself aged nineteenand althoughI cannotbe certainit was an unplannedpregnancy, it seemslikely that it would have been. Her child was no longer in her care.) The other mentionedpregnancy in a positive contextie that sexwas importantbecause of the potentialfor childrenand that it was therefore especiallyimportant for youngerpeople like herself(she was in her thirties). When I askedif 173
shethought older people did not have sex, she replied They do but their periodsstop at 45 andthey can'thave children after thaf (TNI).
Two other women said sex was important to them, but they qualified this. One said Us important but not very important,it dependson who ifs with andwhat happens'(EY).For the other it was a muchmore complexpicture. Shesaid it was importantfor her boyfriendand that she was willing to do it but only until they left the hospital to move into a hostel in the community(an eventthat was dueto take placeshortly aflerwards).She hoped they would be ableto many then:
NM: OK, but if you were marTied, would you want to have sex?
TC: rff haveto ask him that.
MM: What do vou want?
TC: I would haveto havesex with 1-dmif he wantedsex with me.
MM: That's a bit different. Think what You would like, for joursel don't think about D. for the minute.
TC: I would tell him that I wouldn't want any more sex...I want to marry my boyfriend.
MM: Does he want to marry you?
TC: He does.
NM: How do you know that?
TC: I told him.
NM: I know you've told him, but what's he said to you?
TC: He hasn'tsaid nothing to me yet. rm going to teHhim to tefl himself to marry me.
Two women said sexwas sometimesimportant not always,but did not elaborate.Ten of the seventeenwomen said,usually quite simply and starkly, that sex was not important to them. Only one elaboratedand this was to distinguishbetween sex, which shedid not value,and the relationship,which shedid: 174
Sex is not important to me, no. But having fiends is. But G. mixesthe two together, he wants fhendship and sex, whereaswith me, I just want his friendship.But I supposethat's men, ish! t it? (KN).
What the women have had to say about their personaland sexualfives and their bodieshas clearlyraised many important and interesting points. The next chapterdiscusses the key points, integratingthe findings from this study with what, if anything,the literature has to say about them. 175
CHAPTER 6 -DISCUSSION
The picture that emergesfrom most, though not aH,of the women interviewedfor this study was a generaflynegative one in relationto how they felt abouttheir sexualfives. Most, in fact, did not considerthemselves to he sexual,despite regularly engagingin sexual activity. The reasonsfor this are complex,but I suggestthey may includethe fofloAing: a lack of sexual agencyamongst the womenthemselves; the actualsexual activity that takesplace; the fact that this is experiencedon a predominantlyphysical level; the very high levels of sexual abuse which the women experience.Each of thesewiU now be examinedin turn. I wiU then discuss other importantfindings, including the differencesbetween hospital and communitysettings.
Lack of sexualagency. By my suggestionthat thereis a lack of sexualagency, I am referringto absenceof the women deci&ngfor themselveswhat they wantedto do, with whom, when and how. On the whole it was menwho madethese decisions and the woman!s choicewas either to comply or resist.As resistancecarries with it the possibility,or in somecases the probability, of negativesanctions for the woman, complianceis often the safer'choice! (MacKinnon 1987). This is a traditional pattern of heterosexualbehaviour for women without disabilitiestoo: When women do not initiate, or initiate rarely, they also acquiesceto participating in sexual behavioursthey themselveswould not have chosen'(Wyatt et al 1993:30). This pattern is obviouslynot true for all women andwith the greatersexual freedoms which somewomen havegained in recent decades,many haveincreased their senseof autonomyin relation to their sexuality.However this traditional patternhas been far from overturned,even amongst younger Westernwomen who might havebeen thought most likely to havebecome more assertive.The recentresearch from the Women Risk and AIDS Project (WRAP) found that the majority of sexual behavioursbetween young men and women in Britain were male led, that a quarter of the youngwomen had experienced'unwanted sexual intercourse in responseto pressurefrom med (Holland et al 1991 a: 3) and that it was 'unusualfor young women to discusssex in terms of their own pleasure,rather than mensneeds! (Holland et al 1991b:20).
Secondly,the lack of sexualagency is also indicatedby the generallylow reportedlevel (one third) of masturbationamongst the women interviewedin this study. This is much lower than other reported surveyseg 821/o(Hite 1976),701/6 (Masters et al 1992), 81% (Quilliarn 1994). 176
Cautionneeds to be takenin makingcomparisons, due to the much larger samplesizes in these other studiesand differencesin methodology.Whether women with learningdisabilities really do masturbateless than other women or whether they feel lessable to say so, is impossibleto know. Probably both factors are true and until women with learning disabilitiesfeel more comfortable talking about the subject (which could possiblybe achievedby sensitivesex educationwhich encouragesit andfrom more opennessabout it generally)then further insights into this are unlikely to be gained.
The third way a lack of sexualagency is indicatedfor the women with learningdisabilities is the apparentlyvery low levelsof sex" activity betweenwomen. No woman in this study said shehas any sexualcontact with anotherwoman and the literaturecontains nothing but the odd passingreference, usually to the effectthat sex betweenwomen seems very uncommonor that 'it seemsexceptionally difficult for women with learningdifficulties to recognisethemselves as lesbians'(Walinsley 1993: 94). Anecdotallyhowever, some professionals have told me that they are awareof a few lesbianswith learningdisabilities. They areusually unsure about how much, if any, actual sexualactivity takes place betweenthese women. It seemshighly unlikely that womenwith learningdisabilities would not be attractedto other women in similarproportions to other groups of women in society.Moreover it could be argued,as it very frequentlyis for men with learning disabilities(Thompson 1994) that their historical segregationin services would have meant that women with learning disabilitieswould have more opportunity than other women to form lesbianrelationships. My own speculations(based on what I havelearnt aboutthe sexualbehaviour of both women andmen) asto why lesbiansexual activity seemsto be so under-representedamongst women with learning disabilitiesare: that women are not socialisedor accustomedto taking the initiative sexually;that women are more likely to want sexin the context of an establishedrelationship and with no role modelsor supportfor lesbian relationships,these are unlikely to develop;attraction to a particularindividual is more likely to encouragea woman to havesex, so if a woman is not sexuallyattracted to anotherwoman she is unlikely to havesex with her (whereasmen will havesex anyway regardless of whetherthey 'fancy'someone or not); manywomen learnwhat sex is throughabuse by men,but as they are rarely abusedby women, they do not learn what sex betweenwomen is; most sex between men andwomen in institutionsinvolves an exchangeof sex for money and there is no history of women payinganyone for sex,therefore no incentiveor motivationfor women to engagein this. 177
As with womeds masturbation,there is undoubtedlysome elementof under-reportingfrom women with learning disabilitiesabout their sexualactivity with other women. Once ahgain, until the subject becomesmore legitimate! to talk about, we are unlikely to get a clearer picture. Some specialist sex educationresources for people with learning disabilitiesare inclusiveand explicit regardinghages of lesbiansexuality (McCarthy and Thompson 1992, O'Sullivanand Giffies1993), whilst othersavoid explicit imageryonly in the caseof lesbiansex andinclude it for heterosexualsand gay men (West London Health Promotion Agency 1994). In the lean-dngdisability field, as with sex educationin schools, the developmentof anti- heterosexist(and indeedanti-sexist and anti-racist) sex education programmes is relativelynew and largely unevaluated(Thomson 1994). So it remainsto be seenwhether it does have an impacton wometfs ability to developconfidence in a lesbianidentity. However, for the sakeof thosepeople who are attractedto their own sex and for thosewho are not, but who needto developrespect and sensitivity,it shouldbe deliveredas a matterof course.
Yhesexual acawty, The secondfactor which I believecontributes to the generallynegative view the women had of their sexual fives relates to what actually happensto them sexually. As indicated in the previouschapter, sex, for half the women was exclusively,and the other hA predominantly, penetrative sex. Over half the women who gave details (nine out of sixteen) had anal intercourse,which was ratednegatively by all of them. The reasonswomen gave for dislikingit were not related to social taboosor believingit was wrong, but were pragmaticreasons - it causedthem considerablephysical pain. Whether women with learningdisabilities experience anal intercoursemore frequently than other women is impossibleto know. When I have discussedmy work with various professionalsthere is a 'gut feeling!(which I share)that it is more common amongstmen and women writhlearning disabilitiesthan other heterosexuals. But this is not basedon any evidence,just a sensepeople have, possiblyextrapolating from their own Oackof) experience.However, what researchevidence there is, showsquite a wide variation in reported rates for anal intercoursebetween men and women is: rates (which the researchersdescribe as 'surprisinglyhigh) of 20% and 25% for adolescentsin Australia and USA have been recorded (Moore and Rosenthal1993: 8); rates between20% and 50% for adult women in the USA are suggested(Wyatt et al 1993);whilst recentfigures for adultsin Britain show almost 14% of heterosexualmen and 13% of women report ever havinghad anal 178 intercourse(Wellings et al 1994).These research reports give no indication of whether anal intercoursewas regularly practisedor whether it was tried just once. Moreover they give no reports of whether the women like or dislike it. Quilliams (1994) study of British women suggeststhat anal sex is practisedby a minority of women and disliked by the majority who havetried it. The WIW researchalso describesit as a minority activity that was 'particularly disfiked'bywomen (Holland et al 1993:24). Fridays (1991) study of womeds sexualfantasies suggeststhat aswomen become more sexuallyconfident and assertive, fantasies about anal sex increase.However as sexualfantasy and reality rarely havemuch in common,this shouldnot be taken to meanthat women are increasinglytrying and liking anal sex. There is simply no way of knowing this as heterosexualanal sex is abehaviour long neglectedby research'(Wyatt et al 1993:29).
The women with leamingdisabilities interviewed for this study and indeedall the womenfrom the wider group I haveworked with over the past six or sevenyears, have reported that their sexualexperiences with men are generallydevoid of those non-penetrativeactivities which other women (FEte 1976, Quilliam 1994) have named as sources of pleasureeg kissing, caressing,skin contactýstimulation (with partneeshands and mouth) of breasts,genitals and other erogenouszones. This is not to imply that women generallydo not like or want v*W penetrationand would preferthese other activities.It is not an either/orsituation. Most women who havereported their sexualdesires to researchersimply that they want both. What seems very clear is that few women would be satisfiedwith what is offered to most women with learningdisabilities ie vaginal and/or anal penetrationwith little or nothing elseto arousethe womanprior, during or after it.
There is very little other researchwhich detailshow peoplewith learning disabilitiesactually experidncetheir sexual fives. That which I am familiar with confirms the findings in this researchstudy. Andron (1983) and Andron and Ventura (1987) report from their work with married coupleswith learningdisabilities, that most of the women did not know about their clitoris, did not experienceorgasm or indeedhave any conceptof what it involvedand that'sex playwas basicallynon existent.Sex was understoodas penis-vaginaintercourse! (1987: 33). 179
7heemphasis on theplýWcal experience. The third factor which contributesto the women'sgenerally negative view of their sexualfives relatesto the fact that sex seemsto be experiencedlargely, or in some casespurely, on a physicallevel. In the previouschapter I wrote about the psychologicaldisengagement which someof the women seemedto experienceduring sex and suggestedthat this may be a coping strategyfor the sometimesvery unpleasantsituations they found themselvesin. In additionto that, there also seemedto be a lack of emotional intensity about sex for the women I interviewed.Both these factors have been noted elsewherein the literature related to the sexualexperiences of women with learningdisabilities (Kiehlbauch Cruz et al 1988).This may be due to the fact that the women did not have a wide, or even adequatevocabulary to describetheir emotions and/or like many others they may have been too embarTassedto expresstheir emotionsto someoneelse. It shouldbe emphasisedthat I am not sayingwomen with leaming disabilitiesdo not feel any emotions connectedwith sex. For example,my findingsdo not concurwith thoseof Reesand Berchert (1992:144) who statethat 'in training over a thousandpeople with mentalretardation, we havenever encountered a client who has mentionedthat love or caring are important parts of a sexualrelationship. Indeed half the women in this study who gave reasonswhy they had sex said it was becausethey loved or liked the men they were with. However my contentionis that engagingin sex with someone you love, is not the sameas giving or receivingsexual contact as an expressionof that love. Although I appreciateit would havebeen very difficult for the women to put into words ( as indeedit is evenfor peoplewithout learriingdisabilities), sex as a physicalcommunication of love or affectiondid not seemto be a reasonwhy the womenengaged in-sex'Arith men or how they perceivedthe sex they got from men. This, I believe,connects back to the ideasI first raisedin chapterthree about the socialconstruction of sex and 'sexualscripts' (Gagnon 1977). Gagnonargues that 'peoplelearn to becomesexual in the sameway they becomeeverything else.Without much reflection, they pick up directionsfrom their social environment.They acquire and assemblemeanings, skills and values from the people around thed (1977:2). Moreover Gagnonargues that sexis only experiencedas very specialand emotionallycharged, becausepeople have been taught to believe it is special.Therefore if people have not been taught that certainthings are meantto be erotic, intimate,passionate, sexy, then they will not assignthese meanings to them. Tiefer (1995) takes up thesearguments in her provocatively entitledbook SexIs Not A Natural Act. Shewrites: 180
So, if sex is not a naturalact, a biological given, a humanuniversal, what is it? I would say it's a concept,first of all -a concept with shifting, but deeply felt definitions. Conceptualisingsex is a way of corralling and discussingcertain humanpotentials for consciousness,behaviour, and expressionthat are available to be developedby social forces, that is availableto be produced, changed, modified, organizedand defined.Like Jell-O, sexualityhas no shapewithout a container, in this case a sociohistoricalcontainer of meaning and regulation (1995:7).
As the women with lean-dngdisabilities in this study describe,their avenuesfor learningthe meaningsascribed to sexwere few in numberand very narrow in the scopeof the information that was imparted.Some had learned about sexfrom direct experience(not an unusualavenue, asthe WRAP researchersfound (Thomsonand Scott 1991)),and much of this experiencewas abusive.Others had leamt factualthings about menstruation,reproduction and contraception. None suggestedthat anyonehad ever informed them about their potential feelings, about pleasure,desire, arousal.Men, by having consentedsex with them or by sexually abusing them,were teachingthe women about sex.But as I havedemonstrated in my findings,few, if any of them, seemedto have beenconcerned with the womens feelings,pleasure, desire or arousal.The questionneeds to be askedthen, if the women were not leaming their 'sexual scripts' from sex educationor from their direct experience,how else could they learn it? Informally through talking with friendsis one possibility,but none of the women I interviewed suggestedthat this happenedfor them. The media is anotherpossibility, although because of literacyproblems, for most of the women this was likely to be confinedto the television.This differs for other women who get much informationfrom written sources,such as magazines andbooks (I7homsonand Scott 1991).As chapterfive shows,I did ask the women specifically what they had seenabout sex on television.Only a third of the women answeredthe question and none of them relatedwhat they had seenabout sex on televisionto their own sexual experiences.Interestingly in some casesthis was becausethe sex on television was more passionateand intimatethan their own experiences.Given that actual genitalsexual activity is rarely shown on teffestrial television, what the women would have been watching was nakedness,kissing, touching and generalwrithing about - all the things most women reported as being absentin their own sexualactivity. It is not surprisingthen that they did not relateto what they saw or learn anythinguseful from it that they could transferto their own fives.It is interestingthat Andron (1983) andAndron andVentura (1987) (who incidentallyalso cometo the sameconclusions as I do regardingthe lack of developmentof a psycho-sexualscript) note that televisionis a sourceof useless,rather than usefiA informationabout sex for peoplewith 181 learningdisabilities: 'From the news, they have gained knowledge of unusualcircumstances such as babies bom at 25 weeks gestation and of pregnancy in a female who had a hysterectomy,but little or no understandingof their own bodies and how they functiore in (1987:33). 1 can echothis with my findings- one of the women interviewed this study knew from televisionthat peoplehad sex-changeoperations and that a 62 year old post menopausal womanhad had a baby,but shehad no ideathat shecould not get pregnantthrough oral sex.
My suggestionhere is that if you havenever learned from externalsources that sex canbe, and in somepeople's minds is meantto be, a significantand emotionalevent or process,and you have not learnedit from internal sourcesie your body being arousedin such a way that it producessignificant or specialfeelings, then sex is likely to remainon the level of the physical. And the physicalexperience as most of the women were well able to describe,was generaUy an uncomfortableor painful one. Andron and Ventura (1987) confirm this in their work and conclude,exacdy as I have, this is due to lack of lubrication prior to penetration.However they are only referring to vaginalintercourse, as regrettablyanal sex is not mentionedin their work.
IA-elevel and impact of sextialah use. The fourth reasonwhy most women had a generallynegative outlook regardingsex, was the fact that most of them had experiencedsexual abuse of one kind or another: 14 out of 17 (82%) describedat least one, and some several,act(s) of sexual abuse.This is a very high prevalencerate, much higher than reported rates for other women: eg. Hall's London study Ask Any Woman (1985) reported prevalencerate of 17% for rape and 20% for attempted rape; Russells (1984) researchin the USA reported 41% of women experiencingrape or attemptedrape; Randall and Haskeirs more recentstudy in Canadafound that 56% of women had experiencedrape or attemptedrape at somepoint in their childhoodor adulthood,with the rate rising to two out of three women if the definition of sexual abusewas broader and encompassedall forms of unwantedsexual touch or intrusion(1995).
Dfferencesin samplesizes, methodologies and differencesin definitionsof sexualabuse make it extremelydifficult to compareEke with like. There are two main reasonswhy the prevalence rate of abusemay be so high in this study: firstly, a broad definition of sexualabuse was used (being made to do any kind of sex which the women had not wanted); and secondly,the 182 women in this study were not a random sample.They had been referred (in fifteen cases)or referredthemselves (two cases)as being in need of, or able to benefit from, educationand counsellingon sexualmatters. For sevenwomen it was alreadyknown that they had possibly or definitelybeen sexuallyabused and this was part of the reasonfor referral.However, this meansthat at leasthalf the abusedwomen had not beenreferred for reasonsconnected to the abuse.This is a somewhathigher rate than the overall patternof referralsto the SexEducation Tearn, where only 35% of all abusedclients were referredfor that reason (McCarthy and Thompsonforthcoming (a)). In effiectthis meansthat the very high prevalencerate of abuseis only partly due to the women being a selected,not random,sample. Using the samebroad definitionof sexualabuse, the prevalencerate for all womenwith lean-dngdisabilities referred to the Sex Education Team over a five year period (in effect the vast majority of my client group during my work in this field) was 61% (McCarthy and Thompsonforthcoming (a)). A prevalencestudy which matchesquite closely the methodologyused in the McCarthy and Thompsonstudy (ie basedon discussionsfrom peoplewith learningdisabilities themselves as well as casehistories) was undertakenin the USA by Hard and Plumb (1987) (seep98). It is interestingto seethat their prevalencerate of sexualabuse for women with learningdisabilities was 83%. This is almost exactlythe sameas mine, despitethe fact that the Hard and Plumb samplewas much bigger, involving all the peopleattending a day service,and not thosewho hadbeen identified as having specific needs relating to sexuality.
Becausemany of the women with learningdisabilities in this study had experiencedsome form of sexualabuse at one, or various point(s) in their fives, this would probably have made it difficult for them to experienceother sexualencounters positively and/or to fi-amethem as such. Other researchconcerning non-disabled women (Orlando and,Koss; 1983,Kelly 1988, Wyatt et al 1993) and disabledwomen (KiehlbauchCruz et al 1988) suggeststhat abusive sexual experiencescan have a negative impact on women!s subsequentconsented sexual experiences.It is important to try to understandwhat links there may be betweenthe two different types of experiences,although this is difficult to do, becauseas Wyatt et al have pointedout 'sexresearch has developed as a field of researchquite separatefrom child sexual abuseor adult rape!(1993: 6). Wyatt and her colleaguesargue for researchwhich integrates womerfsexperiences of both consentedand abusivesex. 183
It is my contentionthat it is the combinationof a large quantity of sexualabuse against the women in this study and the low quality of much of the consentedsex they have, that contributes to their generally negative view of sex. Indeed as an outsider hearing their experiencessecond hand, it was often difficult to distinguishbetween what was abusiveand what was not. This must also havebeen difficult for the women themselves.Consider KN for examplewho would'give id to metfs demandsand pressureand havesex sheneither Red nor wanted, to 'shut them up' and stop the pressure.Or EY who said she sometimeslet men continueto havesex with her, eventhough it was painfiýl,because of fears that they would hit her if shetold them to stop. Or TC who was quite surethe price to be paid would be physical violenceand the end of the relationshipif shereffised to havesex with her boyfriend.Are these actsof consentedsex, pressured sex or sexualabuse? Actual acts of physicalforce were rarely used to subdue a wom&s will and force sex upon her. But a womads will can be progressivelysubdued over time and/ or subsumedover seeminglymore urgent needs.Men who take advantageof the womerfs addictionto smokingand so offer cigarettesfor sex or thosewho take advantageof the very sociallyisolated fives women in hospitalslead and offer rides in their car for sey, are exerting forms of pressurethat no court of law would be interestedin. Women who consentto sex in such circumstancesare viewed by many as only havingthemselves to blame.As I explainedin chapterfive, I think it is inaccurateand unhelpful to label individualwomen in thesesituation as prostitutesor as being especially'promiscuous, as if there were somethinginherently 'wrong! with them. Rather we should examinethe abnormalsituations they five in andsee their behaviouras a responseto that (Brown 1992).
In many casesthe women!s abiHtyto give free and informed consent to sex has been compromisedby someparticular factors which have to do with their leaming disability,butý importantly,also some particularfactors which haveto do with their beingwomen:
When sexis violent, womenmay havelost control over what is doneto us, but the absenceof force doesnot ensurethe presenceof that control. Nor, under conditionsof male dominance,does the presenceof force make an interaction nonsexual.If sex is normally somethingmen do to women, the issueis less whether there was force and more whether consentis a meaningfulconcept (MacKinnon 1987:144).
This echoesPatem&s earlier work on consent in which she discussesworneds consentto sex, in the wider context of 'consenttheorý (1980). Patemanargues that unless there is 184 genuine freedom and equality between women and men, that 'an egalitarian sexual be in (1980:164). relationship... cannot grounded consent'
Patemanalso assertsthat:
Consentas an ideology cannot be distinguishedfrom habitual acquiescence, assent,silent dissent,submission, or even enforcedsubmission. Unless refusal of consentor withdrawal of consentare real possibilities,we can no longer speakof "consent"in anygenuine sense (1980: 150).
Someof the women in this research,and indeedin that of others(eg Gavey 1992,Holland et al 1991a, 1991b) have shown, that being able to not consentis far from straightforward. Gavey'swork illustrates how the stark options of consent or non-consentare simply not perceivedas distinct choicesby somewomen. Thus, the apparentor actualcomplicity of some women with what men want from them sexuallyIs a highly complex process,which is influencedby manydifferent discourses regarding heterosexuality. Gavey looks at a numberof thesediscourses, which lead women to engagein unwantedsex with men, includingwhat is perceivedto be 'normaVheterosexual behaviour, women having sex with men as a way of taking careof them, or for pragmaticreasons, such as avoidingarguments or wantingto get to sleep.Her researchalso highlights what shecalls the 'ultimatepragmatic reason' (1992: 345) ie 'consenting!to sexto avoidbeing 'raped'.
The law, as it hastraditionally been allowed to interpretwomen's consent (or lack thereoý, is alsohighly problematic.Pateman points out that:
"no" is frequently disregarded ..a womarfs explicit all too or reinterpretedas "consent".However, if "no", when uttered by a woman, is to be reinterpreted as "yes", then all the comfortableassumptions about her "consent" are also thrown into disarray.Why shoulda woman!s "yes" be more privileged,be any lessopen to invalidation,than her "no"9 (1980:162).
However, the law as it is applied,and the dominantdiscourses of heterosexualityit feedsfrorr4 often turn out to meanthat if a woman saysyes, shemeans yes. If she saysno, shemeans yes. And if she saysnothing at all, she meansyes. This position is absurd and outdated and in recognitionof this, Lees has calledfor a move away from the simplisticconcept of consent, towardsa moremodern communicativemodel of sexuality'(1996: 260). 185
It is impossibleto unpack the different strandsof oppressionand to know whether the high levels of sexualabuse of women with learning disabilitiesand the lack of responseto it by learningdisability servicesor the law is prinmaily becausethey are women or becausethey * havelearning disabilities. However, what we cando is observethat manywomen with learning disabilitiesoften decidenot to report sexualabuse, because they know, instinctivelyor from past experience,that they would not be believed(Hard and Plumb 1987,Brown 1996) and they feel they may be blamed.In this respectthey havemuch in commonwith other women who have experiencedsexual abuse (Kelly 1988). One woman in this study who lived in a communitylearning disability service,did not tell the staff that she was being pesteredby a manfor sex,because she thought the staff would think badly of her. Another lived in a hospital which had a tunnel under the road which ran through the two sites of the hospital.Many womenwere anxiousabout using the tunnel, especiallyat night. I personallyavoided it in the dark and usedthe road instead.But hospitalresidents were encouragedto use it, so that they did not risk a road accident.One woman had beentouched in a sexualway by a maleresident in the tunnel. Shehad neitherinvited nor fikýd the touch, but did not report the incidentto the staff When I askedwhat she thought the staff would say if she did report it, her immediate reply was 'They'd say "why were you in the tunnel?"' (GJ). One can only presumeif shehad been knocked over crossingthe road, she would have been asked 'why wereift you in the tunnel?'There is also evidence(Hard andPlumb 1987,McCarthy and Thompsonforthcoming (a)) that there is a greaterreadiness to believeand respondto the sexualabuse of men with learning disabilitiescompared to their female peers, suggestingthat women with learning disabilitiesdo, in someaspects, suffer from doublediscrimination (see p12 ).
The findings in this researchstudy and other related work (eg McCarthy and Thompson forthcoming(a), Thompsonforthcon-dng) indicate that there are rarely any negativesanctions for the perpetratorsof sexualabuse against women with lean-dngdisabilities. When the women do report abuse they are rarely offered specialistsupport, legal justice or compensation (Brown 1996).These facts also makeit difficult for the womenwith learningdisabilities (and others) to see what 'counts' as sexual abuseand what does not. It is hard to escapethe conclusionthat not much does'count! as abuseand this maybe one reasonwhy the womenput up with so much negativesexual attention and activity. 186
7hepodlive side. It would be wrong to concentrateonly on the negativeside of the women's sexual fives, without also drawing attentionto the more positiveaspects. Three of the women in this study were generallypositive about their sexualfives. Only one talked in any detail about why this was: shehad a boyfriendwho was roughly the sameage and of the sameability level as her, they lived similarfives, going to collegeand socialisingwith fiiends; they had a lot in common andshe considered them to be equalpartners in the relationship.She described herself as being confidentand assertive with him andalthough it was he who alwaystook the initiative sexually andwho decidedwhat was going to happen,she felt well ableto say what shedid and did not want. She had been raped by two different men in the past (one her father), but felt a determinationnot to acceptbad treatmentnow.
Those women with long term boyfriendsvalued their relationshipsvery highly and wanted them to continue. This is very important to note, becausealthough the sex was largely unsatisfactoryfor the women,sex is only one part of a relationship.Moreover, actuallyhaving sexdoes not usuallytake up a great deal of most people!s time: apart perhapsfrom thosewho work full time in the sex industry,most peoplespend most of their time not having sex. Sex, therefore,can be relativelyunimportant within the overall.context of a relationshipand this did indeedseem to be the casefor manyof the womenwith learningdisabilities in this study andin my,wider experience.Although there is much similaritybetween my work and that of Andron and Ventura (1987), 1 come to quite the oppositeconclusion about the primacy of sex within the womens relationships.Andron and Venturaconclude that coupleswith learningdisabilities often havelittle privacy and manyof their practicalneeds (such as shopping,cooking, laundry etc) are met by carers and that therefore 'their 'couplehood'is expressedonly in bed. This placesa large emphasison sex and makesthe smallestProblem appear a major dysfunction! (1987:34). From what I learnedfrom women with learningdisabilities, 'couplehood' is not necessarilyexpressed through doing things together that couples might expect to do, but ratherthrough heing togetherin an acknowledgedrelationship. And far from sexhaving a very big importance,the women in this study totally refute that. It has, as they clearly indicated, generallylittle importancein their fivesand although it may soundstrange, I think this is one of the positivefeatures to emergefrom this study.This is becausealthough the women generally did not rate sex highly, they did not let this depressthem unduly. They coped with it by not according it much importance in their fives. The development and maintenanceof 187 relationshipswith menwere more important to themýit seemed.Other relationshipswere also important:some women had friendshipswith other womenwhich they valued;some were very fond ot and felt closeto, particularmembers of staff, somewomen had very positive family ties particularlywith parents,which were highly valued.Coping strategies have been defined as 'any in to the thought or actionwhich succeeds eliminatingor amelioratingthreat self ..whether it is consciouslyrecognised as intentionalor not' (B reakwell 1986: 79). Thereforeit seemsthat coping with a negativefeature of one!s life by relegatingit to the realmsof the unimportant could be seenas part of the women!s resistanceto, and survival from, the various negative sexualexperiences.
The resistanceto, and recovery from, sexual abuseby women with learning disabilitiesis another positive feature to emergefrom this work and has been noted elsewherein the literatureWard 1994).Many of the women had experiencedacts of abusewhich could very easilyhave been utterly devastatingto their senseof self I am not implying that the women in this study were not damagedby their abuseat all; on the contrary some had mental health problems,including depressionand panic attacks,others had self-injuriousand challenging behaviour.But neverthelesswithout the benefit of much, if any, therapeutichelp, none of the womenwas incapacitatedby what had happenedto them.That said, therewas one woman in this study who, by her own acknowledgment,would probablyhave done a lot more with her life had she not been raped by her father and given birth to his child. Generallyspeaking, however,the personalstrength and resilienceshown by the women in coming to terms with what happenedto them and in somecases, with what was continuingto happen,was to their great credit. It is all the more noteworthy becauseother researchevidence indicates that women with the least internal or externalresources to draw on, such as older women, poor women,women who had experienceda major life stressbefore the abuse,generally have more difficulty copingthan others(Kelly 1988).
Another positive featureto emergeis that some of the sexualtaboos which still operateto makepeople feel emban'assedand ashamed about sex,did not seemto havea great impacton the women in this study.Regarding anal intercourse for example,only onewoman held a belief that this was morally wrong and to be avoided for that reason.None of the other women seemedto differentiate(on moral grounds) betweenvaginal and anal sex. It is interesting howeverthat many did view oral sex as still a taboo subject.This is a reversalof the trend in 188 the generalpopulation; womens magazinesfor example,carry explicit articlesabout oral sex (seefor exampleMeade 1993),but it is very rareto find a mentionof analintercourse. Also, as I indicatedin chapterfive, most of the women who had had a sexuallytranstnitted disease or other genito-urinaryinfection, did not seem embarrassedor ashamedof this. Although the women generally held prejudicialviews regarding masturbationand lesbian sexuality (see chaptersfive and six), the only socialtaboo regardingsex with men which had a strongimpact on all the women was that relatingto sexualactivity during menstruation.As well as practical reasonsfor wanting to avoid it, therewas a strong senseof moral disapprovalabout this. It is hard to know why somesexual taboos had an impact and others did not. I can only speculate that becauseof the paucityof informationthe women hadbeen given about sexualmatters and the fact that much of it had revolvedaround fears of reproduction,that the women may, for example,simply not havebeen told orwarned' about analsex or sexuallytransn-dtted diseases. Conversely,many of them saidthey had beentold aboutperiods, often by their mothers,and it is not hard to imaginethat this may haveincluded the message'not to let mentouch you when you'vegot your period'.
The final positive feature to mention relatesto the women's desiresto have children. Only threeof the seventeenhad had childrenand none had raisedtheir chHdrenin the long terin; two had their chUdrentaken into care, and one had her son raisedas her brother (indeedhe was both, as the womaiYsown father was the child's father). Some of the women expressedno wish to havea chEd,others did. AU seemedvery awarethat other people,particularly stA did not think motherhood was a realistic option for people like them. This has been noted elsewherein the Hterature:? eoplelike us don't have babies.No one at the centredoes apart from staff Some people have their stomachstaken out! (Woman with learning disabi1ities quoted in Atkinson and WflHams1990: 175). Despite this, seven of the seventeenwomen activelyresisted this notion, statingclearly and on more than one occasion,that they wanted children,they fiked chffdren,they felt they could cope with looking after them and that their fives were lacking somethingwithout them. The fact that mostýif not A were unEkelyto realisetheir ambitions,should not be taken as signsof passiveacceptance. The womenwanted childrendespite the ideologieswhich had them labefledas unfit parentsbefore they evenbegan (Booth andBooth 1994) and despitetheir own lin-dtationswhich probablywould havemeant the stressesof chfldcarewould havebeen beyond what they could copewith. 189
Body Image
In common with many other women (Brownmifler 1984), most women with learning disabilitiesin this studyfound it very difficult to sayanything"positive about their bodies.It was hard to tell whetherthe difficulty was in helievingthat therewas anythingpositive abouttheir bodiesor in actuallysaying positive things. I suspectit was primarily the former, becausea negativebody imageis generallyacknowledged to be one of the most acutely felt fonns of oppressionfor women (Wolf 1990). That women with learning disabilitiesrespond to this oppressionin similarways to other women was confirmedby the fact that ten of the women were dissatisfiedwith the samething, namelytheir weight. As only one of theseten women would havebeen considered by most peopleto be 'genuinely'overweight (as opposedto on the plump or heavy side), the women had clearly internalisedsociety's high expectations regardinghow slim women should be. The women reported that staff in learning disability servicesdirectly encouragedthem to loseweight and staff and peerscomplimented them when they were thin.
I am not suggestinghere that the weight of peoplewith learningdisabilities should never be the concernof staff. somepeople, particularlythose with complexphysical disabilities that may make eating difficult, may well be very underweight;conversely there are some conditions suchas Down's Syndromewhich may predisposepeople to being overweight(Bell and Bhate 1992).All too often, however,being'overweight'is equated with assumptionsof beingunfit or unhealthy,when neither may be the case.77% of the learningdisability servicesin a recent study indicated that encouragingweight loss was the key indicator of their attemptsat a healthylifestyle initiative for their serviceusers (Turner 1996).Turner pays no attentionin his study (nor haveI seenany evidenceof this in services)to how peoplewith learningdisabilities, especiallywomen, may actuallyfeel about their weight. My findingswould indicatethat most womenwith learningdisabilities would welcomeinitiatives aimed at helping.them loseweight. Nevertheless,consideration needs to be given to supporting individuals to resist these pressuresif they want to, otherwiselearning disability services will be perpetuatingunrealistic and unfair expectationson women. The politics, as weU as the pleasures,of weight loss for womenneed to be considered(Brown 1996). 190
I regret that I did not discussthe matter of body hair and facial hair with the women in this study,as it seemsvery likely that thesewould also havebeen vexed issues.On other occasions when I havetalked to womenwith learningdisabilities about this, thosewhose body hair is left to grow have indicatedthat they do not like this, but acceptthat they have to five with it becausethey cannotremove it themselvesand other peopledo not considerit importantto do so. It has seemedto be somethingwhich they recognisesets them apart from other, non- disabledwomen, who they rarely,if ever, seewith body/facialhair. Whenwomen with learruing disabilitiesinternalise their devaluedstatus both as women and as people with a disability (Downes 1982),it shouldnot be surprisingthat so few havepositive imagesof themselves.
Contraception
My findings that all the women in this study used, or had used, only three methods of contraception- the Pill, Depo-Provera,Intra-Uterine Devices (IUDs) - reflects my wider experienceof workingwith women with learr-drigdisabilities. The literaturealso confirmsthat thesethree methodsare the only ones used by most women with lean-dngdisabilities, with barrier methodsbeing reported as unheardof (Chamberlainet al 1984). It is no coincidence that the three methods commonly used are those which require little or no 'active user participation!(Chamberlain et al 1984:449). It is undeniablythe casethat somewomen with learningdisabilities would find makingdecisions about which type of contraceptionto usevery difficult and would also find it hard or impossibleto managethe practicalitiesof some methods.However, it is alsoundeniable that manywomen with learningdisabilities, including those in this study, are not given sufficient or appropriateinformation and support to make those choicesthemselves. As Williams statesThe impositionof contracepfion,like the long- lasting drug Depo-Provera to discouragethe fertility ..reveals pressures of certain groups of women! (1992:156). Certainly Depo-Proverais disproportionatelyused with women with learning disabilities.What little literature there is on the topic (eg Chamberlainet al 1984, Elkins 1994) suggeststhat it is generallywell toleratedwith minimal side effects,but neither studyreports anyviews of womenwith learningdisabilities themselves.
IUDs are not generallythe contraceptionof choice of youngerwomen who havenot had any children,yet they are frequentlyused for women with learningdisabilities in thesecategories (Chamberlainet al 1984,Elkins 1994).[incidentally the Chamberlainstudy is entitledIssues in 191 jetWfitycontrolfor mentallyretardedadolescents, yet actuallyrelates to girls andwomen aged 11-23,a curiously broad definitionof adolescence.] Despite the commonside effect of heavy bleedingduring menstruation(see below for discussion)the relative popularityof the IUD for womenwith learningdisabilities seems to be due to the fact that it requireslittle maintenance- once inserted, it can be 'forgotterf. In my experienceworking with women with learning disabilities,IUDs can be literally forgottenby aUconcerned, with no one checkingor replacing themfor yearson end. Sometimesthe woman herself(as with FM in this study) canforget she hasone in situ.
The lack of use of barrier methodsof contraceptionamongst women with learningdisabilities is interesting.Use of condomsare mentionedwidely in the literature, but these are almost exclusivelyin relation to FRV prevention.Use of the cap or diaphragmis almost entirely overlooked (see the video BetweenOurselves (1988) for a notable exception).Overlooking the use of the cap is regrettablebecause some women like this methodbecause of the senseof control it givesthem over their own fertility (Phillipsand Rakusen 1989). However for women with learningdisabilities, it is generallyassumed that they would be incapableof managingit reliably.Despite my implied criticismhere, the very real practicalitiesof using the cap should not be dismissed:a woman hasto be willing to touch her genitals;it is tricky to learn how to insertit properly, a woman hasto rememberto insert and removeit at the right times; and as manywomen with learningdisabilities do not havesex in their bedrooms,they would haveto rememberto carry it around with them. The hurried nature of much of the sexualactivity women with learnffigdisabilities have reported to me suggeststhat capswould be impractical. Use of the female condom is also likely to be very limited amongstwomen with learning disabilitiesfor the samereasons (McCarthy and Thompson forthcon-dng (b)).
This study did not specifically focus on other matters related to womerfs sexual and reproductivehealth, such as breastand cervical screeningor the menopause.These remain very much under-researchedareas (Brown 1996) and some recent researchwhich has appearedis shocking in its disregardfor the rights of women with learningdisabilities to be treated as other women. Huovinen (1996), for example,describes the positive effýcts of therapeutic amenorrhea(the deliberate stopping of periods) for women with learning disabilitiesas being'so obvious'(1996: 59) that they do not merit discussion.He conducteda researchstudy in Finlandto seeat what point this medicalintervention should stop, becauseit 192 is obviouslyunnecessary after the menopause.His conclusionwas 'evenin mentallyretarded womenmenopause is individual'(1996: 6 1). It beggarsbelief that anyonemight havethought that all women with learning disabilitieswould reach menopauseat the sametime and one cannothelp but be concernedthat Finnishtaxpayers'money is funding suchresearch.
The reasonfor prescribingcontraception to women with learning disabilitiesis not alwaysa straightforwardmatter of preventingan unwantedpregnancy in a sexuallyactive woman of childbearingage. Many times when I have questionedwhy a woman with leamingdisabilities who was not sexuallyactive was on the Pill, I have been told by staff and carersthat it is becauseof heavy or painful periods (McCarthy and Thompson 1992). WUst not dismissing theseas genuineconcerns, I must say that it does seemto be a very common problem for womenwith learningdisabilities, to the point whereI cannothelp wonderingwhether staff and carersare not exaggeratingit, in order to justify being able to use the Pill, or indeedother methodsof contraception,as a long term strategyto avoid any possibilityof pregnancyfor the whole of a woman'sreproductive fife.
Other reasonswhy contraceptionis given to control or eliminate menstruationparticularly amongstwomen with more severedisabilities, is that they would be unable to practically managetheir periods and/or that they would be very distressedor confusedby the sight of blood (Taylor and Carlson 1993). There is very little researchevidence to substantiatethis. However there is evidencethat attitudestowards menstruationvary widely amongstwomen, and particularly betweenwomen and men, with men generallyholding more negativeand oppressiveattitudes (Laws 1990). As the medical professionis male dominated,this may partly explain why contraceptionis so readily prescribedfor reasonsother than preventing unwantedpregnancies.
It is undoubtedlythe casethat, just as for many other women, some women with learning disabilitiesenjoy a greaterdegree of personalfreedom if they are using reliablecontraception, than might otherwise be the case ( see p84 for my argument that the availability of contraceptionto people with learning disabifitieswas one of the factors that led to a less restrictivecare regime). However, the downsideof this (which was certainlyrelevant to many of the women I haveworked with, althoughnot many in this particular study) relatesto risks of sexualabuse. I havewritten elsewhereabout the falsesense of securitygiven when women 193 are given contraceptionas 'protectionfrom the sexuallyactive men around thern' (McCarthy and Thompson 1992:70). Taylor and Carlson (1993) go further and point out, rightly in my view, that prescribingcontraception to a woman with learningdisabilities thought to be at risk of sexualabuse, in fact increasesher vulnerabilityto abuse.As much abuseis perpetratedby malefamily and staff members,these men would presumablyknow that as detectionthrough pregnancywill not occur,their chancesof beingcaught and identified are reduced.
Hospital and communitysettings.
When I first beganmy work in this field, I expectedto find fundamentallydifferent patternsof sexualbehaviour and experiencesdepending on whetherpeople with learningdisabilities lived in hospital or community settings.This expectationis reflectedin the title of this thesis.I expectedthe situationsof individualsto be significantlyworse in hospitals,due primarily to a lack of privacy,but alsoto the generaldehumanising effects of institutions. One of the disappointingfeatures of my work and that of my colleagues,which is reflectedin this research,is that the differencesare not nearly as pronouncedas I had imagined.As I outlined in chapterfive there were only two areaswhere there were clear divisionsbetween women basedin the hospital and those in the community.These differencesrelated to the exchangeof sex for moneyor other materialrewards (with all the hospitalbased, but none of the communitybased women engaging in this); andto the placeswhere peopleconducted their sexualactivity (with all the hospitalbased women having to have sex in semi-privateplaces often in outdoor locations,whilst all the communitybased women had sex in their own, or their partner'sbedroom). The greaterprivacy availableto the women in the communitymay have accountedfor some other, but lessstark, differences.However, becausethe numbersare so small,it is very difficult to make valid comparisonsbetween the hospitaland communitybased groups. Thereforethe following informationis presentedwith great caution.Access to greaterprivacy may haveled to the fact that the threewomen who were most positiveabout their sexualexperiences had all lived in community settings(although two were in hospital at the time of the interviews). Gavey's(1992) researchalso suggests that where opportunitiesfor sex are constrainedby lack of privacy and/or time, women tend to be dissatisfiedby the experience.Greater privacy may also haveaffected the way women felt about engagingin masturbation,where four of the five womenwho saidthey did masturbateor had doneso, were in communitysettings. 194
Having greater numbersof sexualpartners did seemto be associatedwith being in hospital. This may be partly dueto the easyavailabUity of sexualpartners, when very large numbersof peopleare congregatedtogether. It is also likely to be partly due to the fact that institutional settings are generally not consideredto be conducive to the maintenanceof long-term relationships(Crossmaker 1991). However, it shouldbe noted that four of the hospitalbased women in this study had sustainedvery long-term relationships(ie. lasting severalyears) with men.
Therewere someMerences in the types of sexualactivity the women engagedin (bearingin mind the relatively small numbers):there was a strong associationbetween being in hospital and engagingin anal intercourse,with all eight hospital basedwomen having experiencedit, comparedto only one communitybased woman and one who had lived in both settings(it was not clearwhere shehad experiencedit); therewas also an association(although not as strong) between a woman giving oral sex to a man and being in hospital. One reason for these Merences could be a greater reluctanceon the part of communitybased women to speak about thesemore 'taboo' sexualactivities, although this is speculationand I do not have any evidenceto substantiatethis. Another, perhapsmore likely reason,is that for both groups it was the men who controlledwhat sexualactivity took place.The womenwho were long-term hospital residents were largely having sex with men who were also long-term hospital residents.It is likely that many of thesemen would have had considerableexperience of sex with other men (I7hompson1994) and may have been replicating some of their same-sex experiencewith women.
Lack of information about, and experienceot clitoral.stimulation and orgasmwas universal acrossboth hospital and communitybased women. The only differencewas that the three women who used or recognisedthe word 'con-dng(but who, as I explainedon pl.20, did not really know what it meant)were all in the communitysettings. They were also amongstthe most inteHectuaUyable and had had sex largely with men similar to, or more able than themselves,so it is not surprisingthat their vocabularyfor sexualmatters included this term. An interestingobservation is that very few of the women used colloquial or slangterms for sexualactivities or boo parts, apart from ones which are in very common usage,such as 'bunf. Apart from the'one or two most able women in community settings who did 195 occasionallyuse terms such as 'con-dng'or 'war-de,there were a few other women who used words like Tucleor 'fucking', but this was in the context of swearingin generalconversation, not to refer to sex.Men with learningdisabilities have beennoted as using more slangterms for sex, than women of similar ability levels (McCarthy 1991). The implication of this is that sexeducation materials aimed directly at peoplewith learningdisabilities which useslang terms (eg Cambridge1995) may be meetingthe needsof menmore than women.
In relation to opportunitiesto learn or talk about sex, there did appearto be some slight differencesbetween women in hospitaland communitysettings: of the five women who said theyfelt staff did not reallywant to discussmatters of a sexualnature, four were in hospital;of the five who saidthey had had someformal sexeducation, four were in the community.
With regardsto their feelingsabout their bodiesand their appearance,there were someslight differences:the women in the communityseemed generally less happy with their body image and appearancethan the women in hospital. This could be becauseoutside of the hospital environment,the women are exposedto more societalpressures to be attractive.However, the womenin hospital do watch television,see magazines, go out, so this is a somewhattenuous argument.It could be more the casethat living more ordinary fives in the community,the women have picked up inhibitions which discouragethem saying positive things about themselves.
There were also some slight dfferences with regardsto having had a sexuallytransmitted diseaseor other genito-urinaryinfection: the hospitalbased women were more likely to have experiencedthese than the women in community settings. With regards to the sexually transmittedinfections, this may be accountedfor by the fact that the hospitalbased women tended to have more sexual partnersand more anal intercourse;with regardsto the non- sexuallytransmitted genito-urinary conditions, I do not know why thesewould appearto be more commonin the hospitalbased group. I can only imaginethat being surroundedby nurses anddoctors, the women in hospitalmay havebeen more readilydiagnosed than womenliving in the community. 196
Conclusion
Generallyspeaking, with regardsto important factors such as control, sexual pleasureand freedom from pain and/or coercion, the overall situation was slightly better for women in communitysettings. However, as I have explained,the differenceswere not pronouncedand this situationis depressingin that it is not possibleto blame' most of the negativefeatures of womeds sexualexperiences on the adverseeffects of institutionalisation,as I had oncenaively expectedto be able to do. The generallack of significantdifference in sexualexperiences for womenwith lean-dngdisabilities regardless of wherethey areliving haslargely been completely overlookedin the literature to date, with the exceptionof my own observations(McCarthy 1994). Anecdotally,I am aware of some professionalsin the field of sexualityand learning disalýffltywho believethere are significantdifferences and that the situation for women in terms of their sexualexperiences is much better in the communitythan in hospitaland they have criticised my work for not drawing more attention to this. However I have not seen evidenceof this. Indeed if one comparesthe findings of work based entirely in community settings(eg. Andron and Ventura 1987, Millard 1994) with those based predominantlyin hospitals(eg. McCarthy 1993) and with this study, anotherconclusion must be drawn: that whilst the physicalenvironment has some impact (-Arith all the effectsof hospitalenvironments being in the negativedirection), the quality of women'ssexual experiencesis more directly deten-ninedby factors such as the natureof relationshipsbetween women and men; abuseand aggressionfrom men;assertiveness from women;women's perceptions of themselvesas sexual beingsentitled to personalfulfilment; the existenceof sex educationand supportin its broadest sense.
It is thesefactors and otherswhich wifl be discussedfinther in the final chapter. 197
CIEUMR SEVEN RECONEYIENDATIONS
In this final chapterI will make recommendationswith regardsto both policy and practice issues;some in relation to learning disability servicesin a broad sense,most specificallyin relationto sexualityand sexualabuse. However beforeI outlinemy recommendations,I would like to note that I am mindful of the ethical issuesinvolved in doing so. As Holland and Ramazanoglu.have pointed out The issueof whose knowledgeis producedfrom interviews, and to what ends it should be put, is particularly salient in the case of feminist research! (1994:141). Like other feminist researchers,I have tried to give voice to the experiencesof womenwho rarelyhave an opportunityto 'havetheir say.But I havealso analysedand put my own interpretationson the womens experiences.Holland andRarnazanoglu go on to say:
Drawing policiesfrom confiisedand contestedmeanings can neverbe an orderly or value-free process. Feminism plays methodological, moral and political roles in struggling to ensure that as much of womeifs experienceas possiblecan be grasped,and that appropriate policy recommendations can be drawn from this experience (1994:143).
In view of this, and to minimisethe chancesthat I may havemisunderstood or misinterpreted what the women in this study have said, the following recommendationshave developed primarily from the findings of this particular study, but are also rooted in my broaderwork experiencein services.(They are not in order of priority.)
Policy recommendations
Continuationof hospital closures The first recommendationrelates to the very broad issue of deinstitutionalisationand the provision of servicesin the community.Although the hospital closure policy has been fiffly implementedin someparts of the country, in othersit hasnot and at the end of the twentieth century,large hospitalsfor peoplewith learningdisabilities do still exist. Indeed at the time of writing, two of the four hospitalsrepresented in this study are stiff open. As I outlined in chapter three some writers are drawing attention to what they see as a process of reinstitutionalisation,with new servicesbeing developedon old hospitalsites. This is precisely what has happenedto one of the three hospitalsI worked in as part of the Sex Education 198
Team. When I began working there in 1989 there was a clear closure plan for all three hospitalsin the service.Now althoughone hospital has closed and anotheris scheduledto close,plans to closethe third havechanged, with new servicesbeing developedon site. The implicationsof continuedhospitalisation for the sexualfives of women with lean-dngdisabilities are serious.Although this studyfound relativelyfew stark differencesbetween the experiences of womenin hospitaland those in the community,those it did find were to the detrimentof the women in hospitals.In addition there is the fact thatýcontrary to what a lot of people think (seefor exampleMarchant 1993b), hospitalscan be very sexualizedenvironments, more so thanmany community service settings. As I haveremarked elsewhere:
It shouldbe obviousthat living in a large hospitalwhich has spacious grounds,with scoresof other peoplewith learningdifficulties, accords more opportunitiesfor sexthan living in a smallhouse with a few other people and higher levels of supervision.(McCarthy and Thompson 1995:278)
A numberof women with lean-dngdisabilities who havelived in both hospitaland community settingshave confirmed the view that more sex happensin hospital.In this studythis was most clearly expressedby the woman who said in relation to being in hospital'Sex fife is different here.At homeit was more now andagain, not all the time like it is here'(TN1).
To focus on the amount,rather than the nature,of sexualactivity taking placein one settingas opposedto another,may seem.puzzling. However, the fact that higherlevels of sexualactivity are taking place in the physicalenvironments least suited to itý is a causefor concernand a policy issue. The provision of privacy for people with learning disabilities to express themselvessexually should be more of a priority for all serviceproviders than it hitherto has been. It has long been recognisedthat ýxhere there is no privacy, there is no appropriate sexuality'(Hingsburger 1987: 44). This impactsmore on women with learningdisabilities than men, becauseas this study illustrates,when there is little or no privacy, little time is spenton sex and sexual expressionis reduced(largely at the instigation of men) down to the bare minimumof sexualintercourse, which manywomen expressdissatisfaction with. Until services grasp the nettle and prioritise the provision of private and dignified spacefor people with learning disabilitiesto have sex in, it is important that my work, and that of others (eg. Hingsburger 1987, Thompson1994) continues to confront policy makerswith the inevitable consequencesof the lack of privacy: 199
When clientstalk about "havingsex" it is temptingto translatethis into our own culturdsunderstanding of that- which is nakedand in bed,but it is importantto rememberthat theseclients had a different experience and learntdifferent sexual practices (Mngsburger 1987: 44).
For manypeople with learningdisabilities in hospitalsand somecommunity settings, including the women in this study, this is true. Many have never had sex in a bed and many never removeall or even most of their clothes.A lack of privacy not only reducessex to being something rather furtive, which in itself can lead to the emotional/ psychological disengagementwith it I earlier outlined (see also Heyman and Huckle 1995),but it also has implicationsfor the sexualhealth of peoplewith learningdisabilities. I would maintainnow, just as strongly as I did someyears ago, that 'it is completelyunrealistic to expectpeople with learning difficulties to engagein safer sex activities which involve the sensualand sexual explorationof eachother's bodies' (McCarthy and Thompson1992: 63) whilst they havelittle privacy. The issuesfor women are even more poignant: whilst they are obliged to conduct their sexualfives in undignified surroundings,they cannot be expectedto developthe self- esteemthat is necessaryif they are to becomeassertive enough to negotiatesexual matters with men.
Policies to reducerisks of sexualabuse against women in learning aUsabilitysemces, Whilst changesat policy level will neverbe ableto eradicateall sexualabuse in services,there is neverthelessmuch that could be done to reduce the chancesof it happening.With my colleagueand co-authorDavid Thompson,I have outlined in some detail how this might be achieved(McCarthy and Thompson1996). 1 will summarisesome of the key points here, as the findingsfrom this researchstudy confirm previousimpressions and arguments.
Firstly, there is the concern about placing men with very mild or only borderlinelearning disabilitieswho havecommitted sexual offences in learningdisability hospitals. There is a long history of using learningdisability services as a diversionfrom the prison systemfor suchmen, which goes back at least as far as the 1913 Mental Deficiency Act. Various factors now contributeto the policy of placing individualswho pose a sexual risk to others in learning disability services:the Reed CommitteeReport (Dept. of Health and Home Office 1992) listed, amongstothers, the lack of specialistprovision for offenderswith borderfineor mild learning disabilities (p.49), many of whoný the report recoVýsed, were sexual offenders 200
(p.50); and the inadequateprovision of medium secure units for people with Iean-dng disabilities(p. 49).
In addition to this, it is quite clear to anyonefamiliar with learning disability hospitalstoday that as well as sex offenderswith very mild leanfmg disabilities,men with histories of sex offendingwith no lean-dngdisability in the generallyaccepted sense of the term are alsobeing admitted (McCarthy and Thompson forthcoming (a), Thompson forthcon-dng.) The recent well publicisedescape (during a visit to ChessingtonWorld of Adventure) of convictedchild sex offenderTrevor Holland is a casein point (seefor exampleFleet and Johnston1996). The impact on the fives and sexualexperiences of women with lean-dngdisabilities of the policy of receivingsuch men into lean-dngdisability services is illustratedby this researchstudy: out of a relativelysmall group of nine womenwho had ever lived in hospitals,two had boyfriendswith little or no learningdisabilities who were convictedrapists.
Men who have little or no learning disability immediatelygain a very high status within services,precisely because they are so much more ablethan the vast majority of other clients. This high status,combined with the other advantageswhich often go with a higherintellectual ability (such as more socialskills, a history of havinglived independently)make the men seem attractive to many of the women in learning disability services.However, forming sexual relationshipswith thesemen can make the women very vulnerable:not only are the women more likely than not to already have experiencedsexual abuse with all the damageto confidenceand self-esteemthat often entails,but as sex offenders,the men have,by definition, alreadyproved themselvesto be willing and able to disregardanother person's sexual rights, feelingsand wishes.In addition,because of confidentialitypolicies the women are not told of the metfs historiesof sexualoffending, so are in a poor positionto protect themselves.This is a very undesirableset of circumstancesand onewhich policy makersurgently needto rectify.
The second factor which increasesthe vulnerability of women with learning disabilitiesto sexualabuse, "ithin servicesis the siting of RegionalSecure Units (R-S.U. ) or similar services within the grounds of learningdisability hospitals. In my experienceof worldng in a hospital with sucha unit on site, it was clearthat men from the R-S.U. were disproportionatelynamed by women as the perpetrators of sexual abuse and/or physical violence; as rough and insensitivesexual partners; and as the perpetratorsof sexualharassment. This study confirms 201 that: of the six women who lived in a hospitalwith an R-S.U. on site, five reported sexual and/orphysical abuse by menfrom what was (in comparisonto the rest of the hospital)a very smaUunit.
Thirdly, having only mixed sex residentialaccommodation is a policy decisionwhich needs reviewing, becauseof the potential for it to impact negatively on women with learning disabilities.As I explainedin chapterfour, it is increasinglybeing recognisedthat the biggest singlegroup of perpetratorsof sexualabuse against people with learningdisabilities, is in fact men with learning disabilities(Browný Turk and Stein 1995, McCarthy and Thompson forthcoming(a)). Ensuringthat womenwith learningdisabilities did not haveto sharea service with their male peers would therefore significantly increasetheir sexual safety. This is somethingthat somewomen with learningdisabilities have recognised for themselves(People First 1991, Powerhouse1996a). However this is not to call for all, or even most, learning disabilityservices to be segregatedby gender,not leastbecause this strategydoes nothing to protect men from being sexuallyabused by other men, which is also a significantproblem in learning disability services (Brown, Turk and Stein 1995, McCarthy and Thompson forthcoming(a)). Moreover, in suggestingchanges for the future, it is essentialto keepan eye on the past; it is only relativelyrecently that strict gendersegregation was in operationas a matter of course in learningdisability services.It is potentiallyvery damagingto the public imageand self imageof peoplewith learningdisabilities to suggestthat gendersegregation is alwaysappropriate. Aso manypeople with learningdisabilities, including women, want n-dxed sexservices (Namdarkhan 1995).
Nevertheless,for those men who posea particularrisk to women, and for thosewomen who would prefer a women-onlyenvironment, the option of singlesex servicesshould be available. If they are not madeavailable, learning disability services are in effectýimplementing policies which compelwomen to five with often quite large numbersof men. This can leadto a kind of 'siegementafity' developing amongst women with learningdisabilities, where staff advisethem to alwayslock themselvesin their bedrooms(Namdarkhan 1995). It must alsobe remembered that in certain kinds of services,especially assessment and treatment servicesand secure services,the term 'mixed services'hides the reality that women are often significantly outnumberedby men: for example,in October 1996 1 visited a secureservice for peoplewith learningdisabilities and found that it housednineteen men andtwo women; one of the women 202
I worked with on the Sex EducationTeam who lived in a R-S.U. was in fact the only woman on a ward full of men. Even where the gender imbalanceis not at these extremelevels, I believethere are still strong groundsfor challenginga policy which obligesvulnerable women five, to work and relax alongsidemen they have not chosen,are not relatedto by family or intimateties and amongstwhom there will almost definitelybe those with known historiesof sexualviolence against women.
Chmging 7heLaw
If there is one area of policy reform that is in urgent need of attention, it is the inadequate responseof the legal systemas it appliesto sexual crimes committed againstwomen (and indeedmen) with learningdisabilities. There is ampleevidence that the existinglaw is failing women with learningdisabilities: in this study, despitemany sexual crimesbeing committed againstthe women, only one of the perpetratorswas brought to justice and that was many yearsago; in my other researchon sexualabuse of peoplewith learningdisabilities (McCarthy and Thompsonforthcoming (a)), only 3 out of 59 perpetrators(5%) of sexualabuse against women with learning disabilitieswere convicted; Turk and Brown indicate that a criminal prosecutionor staff disciplinarytook place in only 18.5% of casesof sexual abuseagainst women and men with learning disabilitiesin their 1992 study and that this figure actually droppedto 14% in their later follow-up study (Brown, Steinand Turk 1995).
It is of coursethe casethat wheresexual crimes are concernedthe existinglegal systemfails to give adequateredress to women regardlessof whetherthey havea disabilityor not. The many structuralimbalances of the current legal system,which operatein favour of men accusedof rape and other serioussexual crimes have beenwell documentedby Lees in her recentbook Carnal knowledge:Rape on Dial (1996). 1 would draw attentionto the fact that manyof the sexistattitudes held by membersof the judiciary, as well as the proceduralunfaimesses which Lees highlights, are likely to disadvantagewomen with learning disabilitieseven more than other women. For instance,Lees reportsthat despiteit not being official Home Office policy to do so, police officers 'no-crime!reports of rape if they considerthe woman complainantto be unreliable(1996: 98). This will work to the detrimentof women with learningdisabilities, becauseit is widely acknowledgedthat both the police and the Crown ProsecutionService (C.P. S. ) tend to view peoplewith learningdisabilities as inherentlyunreliable orincompetenf 203 witnesses:the principle crown prosecutor has admitted as much; 'I won't defend the indefensible;we and the police do back off due to prejudice!(Jackson quoted in Cohen 1994:20).
The counselfor the prosecution,who in lay terms is perceivedto be 'on the woman'sside! during rapetrials, is in fact thereto defendthe public intereston behalfof the Crown, andin no sensecan be arguedto be playingthe samerole for the woman as the defencelawyers play for the accusedman. In fact the counselfor the prosecutionis not allowed to meet or speakto woman before the trial and this is, in the view of many people, quite outrageouslyunfair. Again, although this is detrimental to all women who have been raped, it is likely to particularly disadvantagewomen with learning disabilities;it is difficult to see how the prosecutingcounsel can put anythinguseful across to a jury about a learningdisabled womaifs character,capabilities and lin-dtations, without everhaving met her.
Lees arguesthat the long delay in rape trials coming to court puts pressureon women in variousways. This is undoubtedlyso and once againis likely to be especial1ydisadvantageous to women with learningdisabilities, who may well have trouble rememberingprecise details about eventsin the more distant past and who often have particular trouble being accurate about times and dates (Sone 1995). In addition it seemslikely that women with learning disabilities,like 'psychiatricpatients' (Lees 1996:111) - indeed many women with learning disabilitiesare both - would comeinto a specialcategory of personsabout whom judges have the discretion to give special caution regarding the danger of convicting without uncorroboratedevidence, thus stackingthe dice evenfurther againstthem in court.
As well as changesto the existing laws and legal processes,two other legal changesare sometimessuggested as the way to improve mattersfor the benefit of people with learning disabilities.The first of theseis to rely lesson the criminallaw and makebetter use of the civil law. Carson(1994) has arguedthis casestrongly, suggestingthat where the C.P. S. decides againstbringing a criminalprosecution, then a claim for compensationfor trespassagainst the person could be brought in a civil court. He also suggeststhe possibility of suing learning disabilityservices for failing to protect their clientsagainst sexual abuse or for failing to equip clientswith the necessaryassertiveness sIdUs, so that they would have had a better chanceof protectingthemselves. 204
It seemsa sensiblerecommendation to look towards the civil courts, not least becausethe burdenof proof is a lesserone - casesare decidedon the balanceof probabilities,as opposed to beyond all reasonabledoubt in the'criminal court. However Carson'ssuggestions are in themselvesproblematic for a numberof reasons.Firstly, they involve an acceptancethat the criminaljustice systemfails peoplewith learningdisabilities and this meansthat perpetratorsof crimesagainst them will effectivelyget off with, at most, a fine. Secondly,they are problematic becausealthough the idea of suing learning disability servicesis attractive in someways, it overlooksthe important questionof who preciselyis going to sue.Many peoplewith learning disabilitieswould be unable to do so themselves;some may have families willing to sue, althoughmany families would be reluctantdue to fearsof losing essentialsupport services and fears of possibleunpleasant repercussions for the serviceuser, independentadvocates could well play a role here, although relatively few people with learning disabilitieshave them. Thirdly, suing a service for having failed to equip people with learning disabilitieswith assertivenessskills is fiwght with problems. Learning disability serviceswould probably defendthemselves by sayingthey did teach assertivenessskills and that it was thereforea deficiencyin the individual that made them unwilling or unable to put their teachinginto practice. Unseernlywrangles in court about whose fault it was and victim-blan-dngseem inevitable.
The secondfundamental change would be to createa new law which specificallyrecognises the inherentvulnerability of adultswith learningdisabilities. To someextent this alreadyexists in the Section 7 of the SexualOffences Act 1956,which statesthat a woman with a severe mentalimpairment is not capableof giving consentto sexualintercourse. But proposalshave beenmade for the creation of a new offence of exploiting a person with a mentaldisorder (Carson1994: 134). Other countrieshave already gone down this road. For examplein India it is currentlybeing proposedthat the sexualassault of a 'Womanwho is sufferingfrom a mental or physical disability' should count as an aggravatedsexual assault (Khanna and Kapur 1996:40); in New South Wales, Australia, the sexual assaultof a person with a 'serious physical disability' or a 'serious mental disability' (Rosser 1990:34) already counts as an aggravatingcircumstance for which an extra six yearsimprisonment can be given.
Although such legal changesare welcomedby many, they are also problematicfor various reasons.Firstly, legally defininga'serious' disabilitywill be as difficult with the new laws, as it 205
is with existingones. As Rosser(1990) points out, in practicethis will meanthat aswell as the traumaof havingto give evidenceabout sexualassaultý a woman will also haveto sufferthe indignityof havinglawyers argue in court about how able/disabledshe is. Secondly,if women are legally defined as having serious intellectual disabilities,not only might this impact negativelyon the way others perceivetheir ability to make decisionsabout their lives in a broadercontext, but it will also suggestto the court that they are unreliablewitnesses, thus reducing the chancesof securing a conviction, the precise opposite of what is intended. Thirdly, the wider implicationsof suchlegislation have been largely overlookedie what it will do to the public imageand self imageof peoplewith learningdisabilities to be consideredso different from other adults, that it is automaticallyconsidered worse to sexually assaulta personwith, ratherthan without, a disability,which is, afler all, what making it an aggravating circumstanceimplies. More debateis neededon thesesubjects, including hearingwhat people with learningdisabilities think aboutthem.
Pro Wsionof sexualitysupport to peoplewith leaming disabilities. The final areaof policy I intend to commenton relatesto the provision of sexualitysupport to peoplewho use learningdisability services. The aim of all sexualitypolicies shouldalways be to support people with learning disabilitiesin their sexualfives, not to dissuadethem from havingsex. The onlyjustification for dissuadingpeople fi7om having sex is if the risks they pose to themselvesor othersare very seriousand cannotbe reducedby any other means.Generally speaking,however, this is not the case.In confirmingthe view that most people needhelp with the difficultiesthey are facing,not removingfi7om the situation,Brown hasstated We do not dealwith the issueof bad mannersby persuadingpeople not to eae(1983: 134). Although I agreewith her, I think this is a wrong analogy,because people will die if they do not eat,but not if they do not havesex ( althoughjudging by someof the writings on this in the 1970seg Greengross1976 and Stewart 1979,one would think this was the case!). Unlike eatin& sexis not a life or death matter, it is a quality of fife issue.It is therefore entirely appropriatethat learning disability services should have policies which addressthe provision of sexuality support.
In this study a numberof the women madeit clearthat stafFwerenot readily availableto them to discusssexual matters. As many people with leart-tingdisabilities have a wide variety of needs in relation to sexual matters (McCarthy 1996b), every learning disability day and 206 residentialservice should seek to ensurethat at leastsome staff are ready,willing and ableto take on this role. This needsto be a policy as well as a practiceissue, because it has resource implications;eg. for staff training, the purchaseof educationalmaterials and very importantly, staff time. As well as the provision of support for all on an informal basis, all people with learningdisabilities should have access to formal sex educationas a matter of right. This is not to say it should be compulsory, becausethere will inevitably be some people who are uninterestedand unwilling to attend.However only five of the seventeenwomen in this study saidthey had receivedany formal sex education(not includingthat which they receivedfrom me)- this despitethe fact that thesewere all sexuallyactive women who were both motivated andable to discussthe issues.
Sexuality policies should ensure that proactive support is given to people with learning disabilitiesin hospital and community settings.This meansthat issuesrelated to sexuality, sexualabuse and sexualhealth should be routinely discussedas part of Individual Programme Plans(1PPs) or Individual CarePlans (ICPs) and reviewedat regularintervals (Cambridge and McCarthy 1997). Of course this would need to be done sensitively and in ways which protectedthe individual'srights to privacy andconfidentiality. However, maldngit a legitimate! part of a service'sresponse to all service users, moves away from the reluctant stancestill prevalentin many services,where sexuality is still only grudgingly addressedfor particular individualswho arethen often viewed as especiallytroubled or troublesome.
Although sex educationwhich teachesself protection strategiesis of limited effectiveness becauseit is an individualisedapproach to what is essentiallya social problem (McCarthy and T'hompson 1996), it is still neverthelessextremely important that people with learning disalýifitieshave accessto it. Without raisingthe awarenessof individuals'they may respond indiscriminatelyto what is askedof them, be unawareof appropriatebehaviour, possess poor judgementin sizing up the motivations of others or act impulsively'(Kiehlbauch Cruz et al 1988:414). 11ingsburger'slatest book Just SayKnow! (1995) is built aroundthe centraltheme of the importanceof sex educationfor peoplewith learningdisabilities as. a protectivestrategy.
Although this research,and indeedthe whole body of my work in this field, is concernedwith the socualityof adultswith learningdisabilities, I am not unawareof the needsof childrenwith learningdisabilities in this area.Sex education,in its broadestsense, needs to begin at an early 207 age. Children with learning disabilities,like other children, need structured teaching and informal support to learn that their bodies belong to them and that they have rights not be abused.They need to learn also that their bodies can be sources of pleasureand about appropriatesocial and sexualbehaviour. Whilst parentsclearly have an importantrole here,so do schools.There are some excellentexamples of specialschools and innovativeprojects, which teach personalsafety and sexuality issuesto pupils with varying degreesof lean-dng disabilities(Stewart 1993, Scott et al 1994). Equipping childrenand young people with the knowledgeand skills that will be usefulto them throughouttheir adult fivesshould be seenas a priority.
Practice Recommendations
Delivery of sex educationand broadersexuality support to womenwith leaming &Sahilities At the end of chapterthree, I arguedthat it was only a feministperspective which allowed a proper understandingof the genderednature of power relationsbetween men andwomen with learning disabilities. Thus, in maldng any recommendationsabout the delivery of sex education, an understandingof power issues is crucial. Thomson comes to the same conclusionwith regardsto sexeducation of young peopleat school:
For sex educationto be meaningfulit needsto addressand develop moral autonomyand to do this it needsto addresspower and inter- connectingrelationships of power (1994:55).
Central to understandinggender power relations is the awarenessthat heterosexualwomen and men (whetherthey havelearning disabilities or not) very often lead quite different sexual fives (Holland et al 1993),Crawford et al 1994,McCarthy 1994).Therefore it is unlikely that exactlythe samesex education,advice and supportwill be usefulto both menand women. The different motivationsfor women and men with learningdisabilities to engagein sexual activity with eachother needsto be betterunderstood, both by peoplewith learningdisabilities themselvesand thosewho supportthem. In anotherrecent piece of researchabout people with learningdisabilities, I found that whilst 49% of women (n=65)had had sex'with a man or men without really wanting or enjoyingit in its own right Ciethey were induced,coerced or felt it necessaryto developor maintaina relationship),only 1% of men (n--120)had had sex with a 208 woman without really wanting to (McCarthy 1996b).This fits very much into the gendered stereotypesof women wanting boyfiiendsand men wanting sex (Holland et al 1990).Whilst theseare uncomfortablestereotypes (and of course not true for all women and men) they neverthelessstill seemto applyto manypeople. As long as this is still the case,it indicatesthat great emphasisneeds to be placed on self-esteemand assertivenesswork for women with lean-tingdisabilities. This is not just in relationto sexualmatters, but more generally.Indeed it is unrealistic to expect women (with or without lean-dngdisabilities) to become sexually assertivewith men,before they aremore generallyassertive (Dickson 1985).
The only hope for women to be ableto get and keepwhat they want in a relationshipand not constantlybe giving men what men wantý is if they can become sufficiently assertiveto negotiatefrom a position of strength.Obviously in the longer term, one can only hope that these polarised positions of many men and women would converge. Learning disability servicescould help women in this respect by assistingthe women to lead fuller, more independentlives, with better socialnetworks and with a variety of interestingand stimulating activities.As long as the most, and sometimesthe only, valuedtiling in a womans life is her relationshipwith a man,this leavesher emotionallydependent and vulnerable.
One of the most stark and depressingconclusions from this researchand my broaderwork with women with learningdisabilities, is the lack of sexualpleasure they get from much,and in somecases all, of their sexualactivity with men.This was also found by Andron and Ventura (1987) andMiUard (1994) andby HoUandet al (1990) andThompson (1990) in their research on non-disabledyoung women in Britain and the USA- However, the widespreadlack of sexualpleasure for women is not well understoodwithin learningdisability services. Simplistic assumptionsget madethat if a womanis havinga lot of sex,she must be enjoyingit, otherwise shewould not do it. But the fact remainsthat there is not necessarilyany direct correlation betweenthe amountof sex and/orsexual partners, and the amountof sexualpleasure a woman experiences(Russell 1995).
It thereforeseems that there is a very strong casefor recommending-that all sex education work with women with learningdisabilities should place a significantemphasis on womerfs sexual pleasure.In practical terms this would mean emphasisingthe sexual pleasurethat 209 women could get from masturbationand informing women that this could help them learn what kind of sexualstimulation they might welcomefrom their sexualpartners. Lesbian partnershipsand sexual activity should also have a more prominent place in sex educationwork with women. Sex between men with learning disabifitiesis much more commonthan sexbetween women and I haveexplained why I think this is (seep176 ). I have justified elsewherewhy I think women with leaming disabilitiesmight benefit from learning moreabout the possibilitiesof relationshipswith other women:
Given the unsatisfactorynature of much of the heterosexualactivity for many women with learning disabilities,it is of concern that it seems,for whateverreasons, to be lesspossible for them to engagein same sex activity and relationshipsthan it is for their male peers. Relationshipswith other women might offer them the pleasureand satisfaction that the women often reported were absent in their relationshipswith men. However the downside would be that the women would be faced with the stressesrelated to homophobiathat many men with learning disabilities currently face (McCarthy 1996b:275)
Sex educationneeds to emphasisea more active, lesspassive and acceptingrole for women with learning disabilities.This may mean for some women taking the initiative and at least someof the control. But acceptingthat this is likely to be very difficult for manywomen who have absorbedthe more traditionalgendered stereotypes about sexualroles, at a more basic levelit could alsomean taking decisions,standing up for oneselfand trying to resistpressure.
In Thompson'sresearch with young women, she found that those who experiencedsex negatively'didift look aheadto sex.They diddt prepare.They didift explore.Ofien they diddt evenagree to sex.They gave in, they gaveup, they gaveout' (1990: 35 1). Shealso found that those who experiencedsex positively had previousand ongoing experienceof masturbation and had experiencedorgasm through that. They also had more non-penetrativesex than the others. They also had mothers and other older women around them who talked positively As Thompson They had learrit lessonthat is that about enjoyingsex. says a ... crucial: women canbe the subjectsof their own desire!(1990: 3 54). The positiverole modelsthat this group of young women had is very importantand somethingthat sex educationcould try to emulate.It is essentialto make it socially acceptablefor women to talk positively about enjoyingtheir sexual activity. Without thatý it will remain very difficult for women to construct and understandtheir sexualexperiences positively. Unlike for men, there is no positive discourse 210 for women which permitsthem to describesexual experiences (including masturbation) which they really wanted at the time, thoroughly enjoyed and are looking forward to repeating (Thomson 1996). Indeed if women, especiallygirls and young women, do expresspositive views about sex,they risk being labelledas a 'slag or 'slueand ruining their reputations(Lees 1993).However, many writers have suggestedthat the influenceof feminism(s)can help to creatediscourses which allow for women's power and desireto be positively describedand experienced(see Gavey 1992,Segal 1994, Plummer 1995).
Thompsonsuggests that in orderto bring the womenwho experiencedsex negativelycloser to thosewho had positive experiences,what we have traditionallythought of as 'sex educafion' needsto be refrainedas 'erotic education'(1990: 3 57). Although the phrase'erotic education'is unfamilig and soundsa little odd, in fact the content of what Thompsonproposes for young womenis very similarto that which I suggestabove for womenwith learningdisabilities.
The fundamentalchange I am recommendingto the way women with lean-dngdisabilities are supported in their sexual fives, focuses on the women!s empowerment. This kind of empowen-nentis most likely to be achievedby helping women with leaming disabilitiesto engagein a processof critical reflectionabout their sexualfives. This is somethingI havebeen attemptingto do, with the women in this study and others,over the past sevenyears. I say I havebeen attempting to do itý becausein reality it is extremelydifficult to do, not leastbecause some women do not want to do it (see for examplemy discussionwith DY on p156). Reflectingon one!s pastbehaviour or experiencescan be painfuland threateningto one!s sense of self Nevertheless,if womenhave the courageand supportto do it, it can be beneficial.The Idnd of critical reflectionI am referringto is what Holland et al call 'intellectualempowerment' (1991b:23). They suggestýas I do, that critically reflecting on past sexual experiences, especiallywhere thesewere pressuredor otherwisenegative experiences, can lead women to desirea differentand more positiveexperience in future sexualencounters.
However, Holland et al emphasisethat empowermentat the intellectual level ie women decidingthat they want things to be different 'is insufficientto ensurethat women can act effectivelyon their positiveconceptions' (199 lb: 23). They suggestthat women needalso 'to be empoweredat an experienfiallevel (199lb: 19, original emphasis).This meanswomen being ableto put their ideasinto practiceand achievea shift in maledominance. In other words, for 211 women to be able to changetheir feelings,beliefs and experiencesof sex, men also need to change.This is extremelyimportant, as otherwise the situation may well develop for some women with learning disabilities,as it has for other women ie becoming empoweredand resolving not to put up with poor treatment from men, may well lead to not finding or sustainingrelationships with male partnersat all. This in itself can then lead to a loss of self esteem.As Ramazanogluhas memorably put it ? oHticalcorrectness is no comfort on a lonely Saturdaynight! (1992:445).
Delivery of sex educationand broadersexuality support to menwith learning disabilities. In terms of changingthings for the better for women with learning disabilities,I am in absolutelyno doubt that effortsmust be put into helpingmen change their sexualbehaviour. There are.some areas where it would be usefulto give explicit and specificadvice to menwith learningdisabilities. For example,men needto be told not to concentrateonly on penetrative sex; that they should avoid anal penetrationand penis-oralcontact, unlessthey get a clear signalfi7om women that they want this (thejustification for this is that theseare the two sexual activitiesdisliked most by the vast majority of women with learningdisabilities I havespoken to); men needto be madeaware of the needfor, and ways to ensure,some natural or artificial lubricationbefore penetration.Using lubricatedcondoms could help hereand in any eventuse of condomsneeds to be encouragedfor sexualhealth reasons.Men with learningdisabilities also need to be educatedinto not ceasingall sexualactivity the moment they have sexually satisfiedthemselves through orgasm;that they should not offer financial or other bribes or inducementsto get women to engagein sex with them; andthat they shouldnever pressure or force a woman (or indeed anotherman) to have sex. In addition to that detailedlevel of advice,men with learningdisabilities need more generaleducation about relating sexuallyto women ie understandingthe importanceof mutuality,respect and not alwaysputting their own needs first. Put more starkly, men with learning disabilities,like other men, need to start choosingnot to take what they want sexuallyor what they perceivethemselves to needor be entitledto. As Jensenstates:
The simpletruth is that in this culture men haveto make a conscious decisionnot to rape,because rape is so readilyavailable to us and so rarelyresults in sanctionsof any kind. (1996:96)
Looked at in this way, it is clearthat men needto learn to negotiatejust as much as women do. 212
Those men with learning disabilitieswho continueto overstepthe boundariesof acceptable sexualbehaviour need to be given a clear messagethat this will not be tolerated. Both punishment and support/treatmentfor the offending behaviour seem appropriate here. However, in reality legal sanctionsagainst men with learningdisabilities who sexuallyoffend againstwomen with lean-dngdisabilities are rarely applied. Thompson (forthcoming) has shownthat men with lean-dngdisabilities are only legally punishedwhen they sexuallyoffend againstchildren or non-disabledwomen (eg membersof the public) and not when the victims are other people(men or women)with learningdisabilities. This was despitethe fact that the sexualoffences committed against people with learningdisabilities were generallymore serious offencesthan thoseagainst the othergroups.
Not punishingmen with learning disabilitiesfor sexual offences against other people with learningdisabilities gives a messagethat it is acceptable.I have acknowledgedearlier that the law is very weak at dealingwith sexualoffences and that there is evidenceto suggestthat suspectsand defendantswith learningdisabilities are at a disadvantageat various stagesof the criminaljustice system.Therefore, it is also appropriateand necessaryfor learningdisability servicesthemselves to apply sanctions against men who sexually offend (Brown and Thompsonforthcon-dng (a)), althoughthis is ethically,and sometimes,practically very difficult. This is not a view sharedby everyone:for example,in a book which is excellentin its analysis of the seriousnessof crimes committed againstpeople with learning disabilitiesand in its argumentto bring the perpetratorsto justice, Williams (1995) makesan exceptionwhere the perpetratorsof crimes have learningdisabilities and suggeststhat police could be askedto haveinformal discussions,give warningsor cautions.No cogent argumentis madeas to the justification for this. In addition,he statesthat there is no placefor servicesto take any action of their own: 'if an offence cannot be proven, no action can be taken against an alleged perpetratoe(1995: 24). This entirely overlooks the structural injustices of the legal system which meanthat it is relativelyrare for a sexualofrence to be proven (Lees 1996) and leaves learningdisability servicesto struggle on trying to manageboth an allegedperpetrator and victim in the sameservice.
My own view is that despitethe inherentweaknesses of the criminaljustice systemand despite the dangersof men vAth learningdisabilities potentiafly being disadvantagedin comparisonto 213 other suspectsand defendants,it is wrong to avoid applying the law to them when they sexuallyoffiend against women Arithlearning disabilities; this seemsdefeatist and will ultimately work againstthe interestsof women.
In suggestingthat efforts needto be madeto get menwith learningdisabilities to changetheir sexualattitudes and behaviourtowards women, I am very awarethat it is a limited approach, becausewomen with learningdisabilities also havesex with men who do not haveany kind of disability.It is rare that learningdisability services have any significantcontact with thesemen and evenif they did, it is hard to imaginethat they would welcome sex educationor advice from theseservices. My only attemptat doing this work myself (a woman with mild learning disabilitiesrequested that I talk to her boyfriendwho was very much more intellectuallyable than her and he agreedbecause they had a sexualproblem he wanted to resolve)was not a greatsuccess: in factýit was unpleasantfor me and frustratingfor both the man and myself He was solelyconcerned with what he perceivedas his girlfiiend'sproblem ie her not wanting, or being able to experiencevaginal penetration,to his satisfaction.L not surprisingly,wanted to take a rather broaderview of what was and was not happeningbetween them sexuallyand otherwise.There was no common ground betweenus: he left, patently insulted that I had impliedit was at leastas much his problemas hers,telling me my advicewas rubbish;I was left feeling concernedat his attitude to, and treatmentot women and what this would meanfor any woman he becamesexually involved with. However, the fact that not all the potential sexualpartners of women with learningdisabilities can be reached(in all sensesof the word) shouldnot preventservices from doing what they canwith thosewith whom it is possible.
Whoshould deliver sexeducation to people with lexving &sabilifies? Elsewhere(McCarthy and Thompson 1992,McCarthy 1994)1 have suggestedthat the more formal fomis of sex education,such as one-to-onework or group sessions,are best doneon a single sex basis. I would re-emphasisethis in the recommendationshere. A samegender approachwhen discussingmatters of a highly personaland intimate nature is a logical extensionof the widely accepted(although by no meansuniversally implemented) practice of providing a member of staff of the same sex for assistancewith personal care tasks eg. washin& dressing,help with bodily functionssuch as going to the toilet, and for women,with periods.A samegender approach to discussingsexual matters also offers a greaterchance to 214
the person with learningdisabilities to identify v-riththe persontrying to advise and support them. In addition it offers, where appropriate,the opportunity to look at some sharedfife experiences,as this studyhas iflustrated.
From a feministpoint of view, this approachhas the addedadvantage of giving maleworkers the responsibilityfor addressingmen's sexuality and sexualabuse. However, this approachhas practical shortcomings,because male workers are underrepresentedin learning disability servicesand are fin-ther underrepresentedamongst those who take an active interest in sexualityissues McCarthy and Thompson 1996,Malhotra and Mellan 1996). Nevertheless, my recommendationwould be that plannersand managersof learningdisability services adopt a strategywhereby they actively encourageand support male workers, rather than passively acceptingthat womenstaff are 'naturally'going to be more interestedand skilledat this work.
The involvement of people with lean-drigdisabilities themselvesin the delivery of peer educationis an important area,which goes largely undiscussedin the literature or field more broadly (seeBarber andReffern 1997 for an exception).It is even more unusualto find any critique of this aspectof sex education(see McCarthy and Thompson1995 for an exception). Peoplewith learningdisabilities educating and supportingtheir peerson sexualissues has the potential to be a powerful tool for change:members of other disadvantagedgroups have chosento work with otherswho shareat leastsome of their characteristicsand life experiences and there is no reasonto think that some people with learning disabilitieswould not also benefitfrom beingable to do the same.A peer educationapproach is also appropriatebecause peoplewith learningdisabilities can sometimesunderstand the priority concernsof their peers better than professionalscan. A poignant exampleof this was my own experienceof being involved in the organisationof the first ever national conferencefor women with learning disabilities(Walmsley 1993). The predominantlynon-disabled organisers had taken great care to ensurea wide range of workshopsto cover sexual abuse,sexual health, womens health issues,a workshop for lesbians,and one for Black women, etc. In the event when women with learningdisabilities came to maketheir choiceabout workshops, the most popular choice byfor was a workshopon Making Friends.
However, whilst there may be advantagesin a peer educationapproach, it should also be acknowledgedthat if people with learning disabilitiesare to becomemore involved in the 215 delivery of sex education,they (like others) will need training, support and supervision. Moreover their work shouldbe opento the samescrutiny and evaluation as other people!s. It is my view that peoplewith learningdisabilities have a right to sexualitysupport from others (whether they have a learning disability or not) who have an understandingof, and a commitmentto chaflenge,various forms of sexualinequality. Although it feelsvery difficult to criticise the work of peoplewith learningdisabilities (so difficult in fact that it is practically never done by professionalsin public, although it is in private), neverthelessthere are occasionswhen I feel criticismis justified. For example,the recentbook WomenFirst., a book by women with learning dtfficulties about the issuesfor women with learning difficulties (PeopleFirstý undated but publiclylaunched at the end of 1996)has a sectionon sexuality:the clitoris is missingfrom the diagramof womens 'sexual/sensitive parts' (p17); and sex itself is describedin the following way:
Sex is somethingthat we can chooseto have with our boyffiendsor giriffiends.We all havethe right to chooseif we want to do this or not. Sex canmean lots of thingsfrom kissingand cuddlingto actualsexual intercourse.Sexual intercourse is when a man puts his penis into the wornarfsvagina. The man gets very excitedand comesin the woman's vagina. When this happensthe marfs sperm could make the woman havea baby.(p. 18)
Although it is very encouragingthat the women haveincluded the possibilityof lesbiansex and non-penetrativesexual activities, it is very disappointingthat they completely omit any referenceto womerfs sexualexcitement and orgasm.In addition,the only picturesof sexual activity in the book, show vaginalintercourse with the man on top of the woman.It is difficult to know quite why informationabout womeWs sexual pleasure has been omitted; it is hard to believe that the women with learning disabilitiesinvolved in producing the book had the knowledgethemselves but deliberatelychose to withhold it from other women.It seemsmore likely that either they were too embarrassedto include it or they simply did not know it themselves.In commonwith someother publicationson sexualissues by peoplewith learning disabilities(eg Everythingyou everwanted to know about safer sex..but nobody botheredto . tellyou (PeopleFirst undated),individuals do not put their namesto their work, thus makingit harderto enquireas to why somethingwas includedor omitted.
This kind of approachis not just taken by people %rithlearning disabilities in Britain: Women with Disahilffies.ý Speaking Outfor Ourselves(A Group of Womenwith Disabifities1996) is 216 a recentpublication from New Zealandand has many similaritiesto the WomenFirsi book mentionedabove. In the short sectionon sexualityissues, a third of the spaceis devotedto sexualabuse and the remainingtopics the womeds group fist as those they wantedto find out more aboutthemselves and which they considerto be of importanceto other disabledwomen are as follows 'sterilization,reproduction, menopause, osteoporosis, smear tests, periods, sex, getting pregnant,having babiesand contraception!(1996: 20). WiHst theseare all important, interestingand relevant issuesfor women with and without learning disabilities,it is again disappointingthat the Est is so heavily weighted towards the more physical, and indeed medical,side of sexuality, and there is no explicit mention of womeds sexual pleasureor satisfaction.
FMal recommendationsand conclu&ngremarU Like all research,this study has been limited and some areas of investigationhave been overlooked. Consequently,a general recommendationis that further researchneeds to be carriedout in the whole areaof women'ssexuality.
Firstly, the experiencesof Black women with learningdisabilities are missingfrom this study, for the 108 Thereforethe fives Black reasonsoutlined on p . sexual and sexualabuse of women with learningdisabilities should be investigatedin their own rightý and by way of comparison with the experiencesof white women which are reported in this study and elsewherein the literature.
Secondly,the experiencesof women with learning disabilitieswho relate sexuallyto other women are also missingfrom this study. Although it would be difficult to find a big enough samplegroup to study, it shouldnot be impossibleand it is important, so that servicesknow how to supportlesbians with learningdisabilities.
Thirdly, the consentedsexual experiencesof women with learning disabilitieswho have not also beensexually abused, are largely missingfrom this study, and indeedmost others.Once . it would be difficult to find a big enoughsample group to study, but neverthelessit is importantto do so, becauseonly in this way, will it be possibleto investigatewhether, and 217 how, women with leamingdisabilities who havenot beenabused, experience their sexualfives more positively.
Fourthly, this study has focused very much on what women with lean-dngdisabilities do sexuallyand what they think and feel about that. It hastherefore only marginallyaddressed the broader,but neverthelessvery important,issues related to women!s sexualityeg issuesaround fertility and reproduction.Therefore, it is a recommendationthat thesebecome research topics in their own right.
Fifthly, it is recommendedthat somelongitudinal research takes place with women (and men) with learningdisabilities to evaluatewhat impactýif any, sex educationand sexualitysupport actuallyhas on their fives in the longer term. Currentlythis is unresearchedand consequently not well understood.
Finally,it is recommendedthat the influenceof genderupon the fives of girls andboys, women and men with learningdisabilities becomes a subjectof researchin much broader areasthan sexuality.This is becomingmore frequentnow than it oncewas; however, it is interestingto that from has its investigation, note , aside work which sexualityas underlyingtopic of other work about gender is in fact almost exclusivelyabout women (eg Noonan Walsh 1988, Williams 1992,Bums 1993,Brown 1996.See Hazlehurst 1993 and Townsley 1995for a rare examplesof exploringgender issues with men with learningdisabilities). Apart from sexuality issues,the only other area of work where genderissues are beginningto be exploredis the challengingbehaviour of people with learning disabilities(eg Clements et al 1995). The importanceof understandingthe impact of genderupon the totality of a personwith learning disabilities'life experienceis emphasisedby Clementset al when they state'there is a high cost to be paid if a personis perceivedas gender free in a genderedworld' (1995:426).
At the outset of this research,it was my intentionto applysome of the principlesand practices of qualitative and feminist research methodologiesto the investigation of the sexual experiencesof women with learningdisabilities. I set out to understandin some depth,what women with learning disabilitiesdid sexually (and what was done to them) and what the women thought andfelt aboutthese experiences. My findingsin this study haveindicated that the sexualside of adult life was not generallypositive, pleasurable, or life-enhancingfor most 218
of the seventeenwomen representedhere. The findingsof this study are in line with what little detailedinformation there is in the literature about the sexual experiencesof women with learningdisabilities. This suggeststhat the recommendationswhich I have fon-nulatedwould benefit many women with leaming disabilities:those who are still in, or who may enter, hospitals;and those who arenow living, or havealways lived, in communitysettings. 219
Summary of recommendations
Policy recommendations
The continuation of the hospital closure programme
Policies to reduce risks of sexual abuse to women in learning disability services
- prevent admissions of men with little or no learning disability, who have histories of sexual offenses
- where hospital servicesdo still exist, move regional secureunits off-site
- provide somewomen-only residential provision
Changesto the law
- remove current structural inequalities that exist between the women who bring charges and the men who defend themselves against them
- bring casesof rape and sexualassault to trial quicker
- increaseuse of civil law, where appropriate
- give consideration to the creation of a new law which specifically recognises the vulnerability of adults with learning disabilities
Every learning disability serviceto implement a policy which stipulates that formal and informal sexuality support will be provided to the peoplewho use the service. 220
Practice recommendations
All sex education and broader sexuality support should be informed by an understanding of gender power relations and the different expectations and constraints which operate for women and men with learning disabilities.
All sex education to emphasisewomen's sexual pleasure.
All sex education and assertiveness work with women with learning disabilities needs to take on board the complexitiesof intellectual and experiential empowerment.
All sexuality support in learning disability services should prioritise working with men to the same extent as with women, although recognising that the content will be different in a number of ways.
All learning disability services need to develop strategies to prevent and manage the sexual abuse which is perpetrated by men who use the services.
A single sex approach to sex education should be encouraged, except where women with learning disabilities actively want to discuss these issues with men.
The provision of training and support in anti-discriminatory practice for those people with learning disabilities who are engaging in peer sex education.
Recommendations for further research
To understand the sexual experiences of Black and other ethnic minority women with learning disabilities.
To understand the sexual experiencesof women with learning disabilities who relate, or wish to relate, sexuaDyto other women. 221
To understand the sexual experiences of women wit learning disabilities who have not been sexually abused.
To understand what women with learning disabilities think and feel about issuesrelated to their fertility and reproductive rights.
Longitudinal research to understand the impact of sex education on the lives of people with learning disabilities.
To understand the impact of gender more broadly upon on the non-sexual lives of girls and boys, women and men with learning disabilities. 222
APPENDIX
INTERVIEW QUESTIONS [NB. The questionswould not necessarilyhave been put to intervieweesin the way they are worded here.]
SEXUAL ACTIVITY
1. Do you like havingsex?
What do / dodt you like aboutit?
3. Who do you have sex with? Boyfriend, other known men, any man who asks, includingmen without learningdifficulties?
4. Do menlike havingsex with you? How do you know?
5. Do you masturbate?
6. Is this better/worselsameas having sex with a man,orjust different?
7. Do you know other womenor menwho do this?
8. Do you have sex with women?
9. Is it better/wor-selsameas having sex with a man, orjust different?
10. Do you know any other women who havesex with women? On T.V.? What do you think aboutthis?
I Do you everthink/dreara/fantasise about sex?
12. If you could neverhave sex again, would you missit?
13. Do you evertal. k to anybodyabout sex?
14. Do you know what/whereyour clitoris is? What do you call it?
15. Do you haveorgasms? What do you call them? Are the orgasmsby masturbation?With men? With women?
16. Does the manhave orgasms? How? How do you know?
17. Does sex ever/regularlyhurt? (Is it supposedto hurt?). What do you do when it hurts?
18. What do you usuallydo when you havesex with a man? Describeactivities -vaginal penetration,which position? analpenetration Idssing 223
touching/masturbating oral sexX2
19. If you havepenetrative sex (vaginal or anal),is there any lubrication?Natural - how? Artificial - what is it? None - doesit hurt? What do you do if it hurts?
20. Do you have sex during your period?
21. Which sort of sex do you Ekebest? Which do you like least? What about oral sex?
22. Which sort of sexdo men&e best/least?
23. Which sort of sex do you havemost often?
24. Does any kind of sexscare you?
25. Do men pay you for sex? Do you think men shouldpay women for sex?
26. Where do you have sex? Do you think you have enough private places and time for sex? (If yes, what effect would it have if you didrft? )
26a. Do you take all/ someof your clothesoM Does the man?
27. Who decideswhat sort of sexyou have? Who decideswhere and when you haveit? Who decideswhen it is over?Do you everwant it to go on longer?
28. Do you choose the man? Does he choose you?
29. Would you everfeet ableto ask a manfor sex? What circumstances?
30. Why do you havesex with men,e. g. love, good feelings,status, approval, money, etc.?
31. Who wants sexthe most? You or the man?
32. Has a man ever exposedhimself to you?
33. Has a man everforced you to havesex when you didnI want to? (Do you know if this hasever happenedto anyoneelse? )
34. Have you ever made a man have sex vAth you when he didn't want to?
35. Have you/would you ever have sex with a personwho was a lot more 'handicapped' thanyou?
36. Who enjoyssex the most? You or the man?
37. Where/howdid you learnabout sex? School,parents - mumsre. periods? 224
OTHER PEOPLE'S SEX
38. Do you know what sort of sexother people(outside the service)have?
39. Do you think staff/familieshave sex? Sameas you or dfferent? How? Do you think they masturbate?
40. When other people have sex, do you think women or men enjoy it more? Why.?
41. Do you ever see people on T. V. /films have sex?
42. What happens? Is this the same as yours or different?
43. Who enjoys it more on T. V., men or women? How do you know?
BODY E\4AGE/SELFESTEEM/PERSONAL HYGIENE
44. What do you fike aboutyour body?
45. What don't you like about your body?
46. If you could change anything about your body, what would it be?
47. Do any parts of your body give you good feelings?
48. Is it important to keep your body clean?
49. Canyou keepas cleanas you want?
50. Do other peopletry to makeyou have'too many'baths/washes?
CLOTBES
51. Who choosesyour clothes(to buy anddaily dressing)?
52. Why do you choosethose?
53. Do your clothesmake you feel good/bad/nothing?
SEXUALHEALTH
54. Have you ever had anythingwrong with your privateparts? Any infections?
55. Why do you think this happened? 225
56. Did it worry/emban-assyou?
57. Did you tell peopleabout it?
58. What kind of contraceptiondo you use?Who chosethis? Are you happywith it?
SEXUAL BEING/IDENTITY
59. Do you think of yourself as a sexualperson (feelings - decisionsetc) or does sexjust happento you?
60. Whenyou're having sex, what makesyou feel good/badabout yourseD
61. Is sex importantto you? 226
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