Disease Is Not A Metaphor by Cyree Jarelle Johnson
Disease is not a metaphor for some crude and unnamed other. Disease is not capitalism, nor is it communism. Disease is not anarchy, nor is it the threat of anarchy. Except for when the body is chaotic and unknowable. Disease is not a virus in the system. Disease is not the body, not the whole, but a part. Disease is not a test from god. Disease is not a fiery furnace, a wall to climb over, a home to be lifted out of by rope. Disease is not a battle to be won or lost in death. Disease is not a metaphor. Disease is not hyperbole. Disease is neither metonym nor synonym. Disease is a condition of the body. Disease is a visitor. Disease is a backseat driver who climbs up front and takes the wheel.
Illness is not a filigreed way to speak about things unpleasant and undesired, no matter how comfortable you may be with thinking of it in that way. You were not “crippled” by debts, nor “paralyzed” by fear, nor was your Thursday evening movie “lame”. You are not “blind” to the reality of the situation, nor “deaf” to the concerns of a close friend. You were re-entrenching able-bodied supremacy in language though, is there a specialized insult for that, taken from the lexicon of sorrow heaped upon people who are not yourself? No, there are not more important things to think about than words, because the things that you say are the substance of your thoughts, which become the things that you do and the biases you keep close to your chest.
Neither disease, nor illness, nor disability is a convenient way to transmit your point into the bodies of those who would not listen otherwise. Disease is so rarely convenient. By invoking disease you have likely hit the point in their brains that monitors pity, fear, and disgust. If you are talking to me, it is the sector that should learn to better control rage. Disease is not for you to take on and cast off and diagnose yourself anew each morning. Disease is not for you to diagnose in the bodies of others, based on your novice opinion and ableist vision. Disease is not erased by the clever sidestep of euphemism. You cannot close your eyes and blink it away in hopes that we will die before you open them up again. You may utter the name of the disease loudly, I do not think it offensive.
The body is not an apology for the disease. The body is not something to be looked at with eyes cast down and weeping. The body is not something to be viewed with the smug sense of knowing what health is. The body is not an apology for the disease. The body is not a manifestation of corporeal weakness and lack to be filled up by Jesus or God or the holy spirit. The body will not untwist itself, anti-virus itself, or cover itself up no matter how many prayer circles surround it, or altar calls it kneels before. The body is not something to feel sorry for because the body is not sorry. The body may be twisted and sly, but the body is not an apology.
The body is not a mistake. The body is not a quirk. Not something to be aborted in utero because of preemptive pity and shame that you could produce such a body. The body is not something to be tested out of existence, or prepared for with good breeding. The body is not something to be quarantined in sanitariums and put under the defacto house arrest of disgust. The body should not be killed with medication and medical middle managers who know best while no one cares that you are dying. The body is not something to be fought against or beaten in a race against oneself. The body is a beating, spreading thing, moving and touching even at rest.
And the body is not miraculous or brave, even though it does so many things you think it shouldn’t be able to. And the body is not just like yours even though there are overlaps in desire and function. Sameness is not a prerequisite for solidarity. And you should care about it even if you have made conscious attempts to ignore our bodies, to look away, to avoid hospitals and the smell of home care. And you shouldn’t need an apology because the body is not wrong. Looking Back but Moving Forwar Chapter 6 marginalized and other people to both benefit from that marginalization and jnstify it, becanse the rest of ns are inferior. Lastly, acceSSibility cannot be addressed universally; rather it mustbe approached holistically. While the medical model presents disability as falling somewhere on a Looking Back but Moving Forward. spectrum between full health and the absence ofit, the radical model posits that, to borrow Foucault's (1969) concept, disability falls somewhere in a The Radieal Disability Model constellation. Like the constellations in the sky, disability is in constant flux and appears different depending on the positioning ofthe onlooker. This model rejects the social model's distinction betweenimpairmentand None ofthe models discussed so far have adequately addressed both disablism disability. To review: "impairment" is defined bythe social modelas functional and disabled minds and hodies; rather, theyfocus either onthe oppression we limitations and "disability" as the oppression "imposed on top ofour impair- experience (social model) or on what the models define as our flawed bod- ments" (UPIAS in Oliver 1996: 33). The radical model ofdisability rejects the ies and/or minds (eugenic, medical and charity models). This final chapter notionthatimpairmentis a biological reality. The radical modelalso posits that discusses the radical model of disability, my proposal for bringing disability impairment and disability can necessarily be distinguished from each other. politics into a newwave. This framework, while based on the workofa number This model is not the social model ofimpairment - while the model has a of disabled activists and scholars (notably Clare, 1999; Davis, 1995,2002; strongfocus onthe social construction ofimpainnent it rejects the dichotomies Moore, 2002; Erickson, 2007; Epstein, 2009) as well as feminist, anti-racist, created by the social model. anti-capitalist and postmoderntheory, is relativelynew. Developedin organiz- In some times, places or cultures, havingvisions is viewed as wholly nega¥ ing meetings and coffee shops in Toronto, it is myproposal for howwe should tive, requiring the individual to undergo medical intervention, confinement, move disabled people's movements forward and how anyone concerned with medication and!orforced electric shocks to the head. Inothertimes, places or social justice should conceptualize disability.' It is also a call to action, for dis- cultures, it is seen as a gift. Similarly, deafuess is understood to be a disability abled people and non-disabled people alike, to organize inclusively for social bythe medical model but for some people this has been far from the case. For justice and radical access. instance, in Martha's Vineyard around the turn ofthe last century"everyone ... The radical model defines disability as a social construction used as an spoke sign language;' accordingto Gale Huntington, wholived there at the time. oppressive tool to penalize and stigmatize those ofus who deviate from the The townspeople "didn't think anything about [Deafpeople], they were just (arbitrary) norm. Disabled people are not problems; we are diverse and offer like everyone else" (in Groce 1985: 2).Deafness was perceivedverydifferently important understandings ofthe world that should be celebrated rather than and not as a disability in the way that it is in a communitywhere most hearing marginalized. people are unable to communicate with Deafpeople. What is considered a There are four key concepts in the radical model. Firstly, disability is not disability depends on the context. separate from other forms of oppression; rather, it is interlocked with and overlaps them. Secondly, what is considered normal is arbitrary and requires Intersedionality deconstruction. Up until this point, all ofthe models ofdisabilityhave failed to A foundational component ofthe radical model is the idea ofintersectional- challenge the supremacyofthe norm. Margrit ShildrickandJanet Price (1998: ity: addreSSing multiple oppressions together and in conjunction with each 236) havewritten, "A more radicalpolitics ofdisability, then, would disruptthe other. The word "radical" is derived from the Latin, meaning "havingroots:' A norms ofdis/abled identity... by exposing the failure ofthose norms to ever conceptualization ofdisabilitythat did notinclude, atits base, the acknowledg- fully and finally containa definitive standard:'Thirdly, thedisabilitylabel is used ment ofand engagement with tbe interlocutory nature ofoppressions could to marginalize specific types ofpepple in orderto obtain and maintain power; not be a radical model. the classification ofdisabled is a pplitical determination, not a biological one. Within disability theory, intersectionality is often ignored. For instance, Disability is not about whether or not something is "wrong" with someone; disability studies have been called "white disability studies" (Bell 2010: 374), it is about the classification of disability, which allows certain people to be and the exclusion ofwomeninthat discipline has alreadybeen documented. Eli 100 I Disability Politics and Theory Looking Baek but Moving Forward / 101 Clare writes further on the lack ofintersectionalityin radical disahility circles: This is the case for many people with more than one marginality, yet disabled organizers and academics in the field ofdisability studies negate our complex Unfortunately, not manydisabilityornondisabledprogressive groups identities. When disabled people are "run over" because ouridentities are omit- engage in multi-issue thinking and organizing that deeply embeds ted, it is no accident. These erasures occur for a number ofreasons: prejudice, disabilitypolitics into an agenda thatincludes race, class, gendlii'and ignorance and/oran attempt to distance a group from others in order to better sexuality. AtanADAPT demo recently, 1sawa flyer that read "You think lay claim to privilege. prison is bad, try a nursing home:' In one simple slogan, disability Being real about intersectionality means working to keep people from activists advanced ahierarchy ofinstitutions and oppressions, defined being"run over," as Bell puts it. One waypeople getrun over orleft out occurs disability as their sole focus, and revealed profound ignorance about whensome members ofthe disabled communitytalk about "disabilityculture:' the ways being locked up in prisons cause bone-crushing damage, "Cultnre" can be used in lots ofways and mean lots ofdifferent things. It is particularly in communities of color. This slogan and the disability important, however for everyone to recognize that they are a part ofa culture. politics behind it leave little chance for making connections and Sometimes white people don't acknowledge that they are a part ofa culture addressing the daily complexities of folks who know the grief and because it is so pervasive and dominant that it can be hard for some people to outrage ofboth prisons and nursing homes. (2009: 12) recognize. When disabled people talk about disability culture it is importanl\f Disabilitypolitics often re-establish whiteness, maleness, straightness and that they not erase the many cultures that many disabled people are a part oD richness as the centrewhen challenging the marginality ofdisability. Similarly, when disability studies writers discuss other oppressions, they often do so as Out from Uncler Disability distinct phenomena in which different marginalities are compared (Vernon, Itis highlyproblematic for disabledpeople to simply build a rights movement 1996b; Bell, 2010). to access privilege; yet this has largelybeen the case in Canada and the United When oppressions are discussed in an intersectional road} it is commonly States. Equallyproblematic are groups ofpeople who are classified as disabled treated like a country road: two, and only two, separate paths meet at a well- working to take themselves out from under the disability umbrella in order to signed, easy-to-understand location. Typically, authors talk about disability build a rights movement to access privilege. Manydifferent groups that fall or and women (see Thomas, 1999; 2004a; 2004b; Rohrer, 2005; Wendell, 1989, have fallen under the disability umbrella have worked to separate themselves 1996; Crow, 1996; Morris, 1991; Fine and Asch, 1988; Gill et a!., 1994; Hall from the category ofdisability to their advantage and to the disadvantage of 2002; Garland-Thomson, 1994), disability and class (see Stewart and Russell, those theyleave behind. 2001; Preece, 1996), disability and race (see Bell, 2010; Stubblefield, 2009; Since in the 1970s, Deafpeople have fought to get out from under the Stuart, 1994) and disability and queerness (see McRuer 2002, 2003a, 2003b; disabled label (Baynton, 2002).According toA Journey into the Deaf-World by Clare, 2001; Sandahl, 2003). None ofthese lists is complete, and there are, of Lane, Hoffmeister and Bahan (1996: 232), "To be Deafis not a disability in course, some important exceptions to the commonpractice ofover-simplifying Deafculture, and most members ofthe Deaf-World see no disability in their intersectionality (Vernon, 1996a, 1999; Clare, 1999; Garland-Thompson, 2002, way ofbeing:' Or, as MJ. Bienvenu has put it "We are proud ofour language, 2005; Emmett, 2006; Petersen, 2006; Sherry, 2007; Clare, 2009; Dossa, 2009; culture and heritage. Disabled we are not!" (in Lane, 1995: 83). This statement Mingus, 2011).' not only works to separate Deafpeople from the disabled identity, but it also Intersectionality is a multi-lane highway with numerous roads meeting, implies that there is no pride in a disabled identity. crossing and merging in chaotic and complicated ways. There are all different Psychiatricsurvivoractivists have beenworkingto unaffiliate with the dis- kinds ofroads involved: paved andgravel roads, roadswith shoulders and those abled community. This movement has asserted that there is nothingwrongwith without and roads with low speed limits, high speed limits and even no speed psychiatrized people and, therefore, they are not Gifford limits. There is no map. The mpst important feature of these intersections, aIld Harrisonargue in Speaking Our Minds that this is because theyunderstand though, is that theylookvery depending on your location. label as being imposed from above bymlRllcaI prore;;;;;nars: Withrespect to multiply opptessedpeople, Chris Bell (2010: 378) points outthat their ethnicityand race are erased, "lettingthemherun over, forgotten:' Many psychiatric system survivors are unwilling to see themselves 102/Disability Politics and Theory Lo"klngllack but Moving Forward/103 as disabled. They associate disabilitywith the medicalization oftheir Trans and other psychiatrized people, aloug with Deaf people, have set distress andexperience. Theyreject thebiological andgenetic explana. outto counterthe stigma attached to disability and to build a rights movement tions oftheir distress imposed by medical experts. They may not see by arguing that there is nothing wrong with them; ergo, they are not disabled. themselves as emotionally or mentally distressed either, but Trans people argue that there is nothing wroug with them, they experience celebrate theirdifference and theirparticularperceptions. (1996: 209) their bodies and genders in ways that do not align with so·called biological standards; psychiatric survivors argue that there is nothiug wrong with them Because many psychiatric survivors and mad pride organizers have disablist because they experience or are perceived to experience the world differently; assumptions about disability and disabled people, they frequently argue that Deafpeople argue that there is nothing wrong with them because they are a they are not a part ofthe disahled community. Additionally, a number ofthe linguistic minority These arguments do not contradict the radical disability campaigns against forced drugging and EeT invoke disablist arguments to ad· model whatsoever. However, with Deaf, trans aud psychiatrizedpeople saying vance their case (Withers, 2010). Psychiatric survivors have problematized the that theyare notdisabledbecause there is nothingwrongwith them, theywork medical model as it applies onlyto them, identifyingitas abusive anda tool for to reinforce the idea that there is somethingwrongwith those disabled people social control in relation to the psychiatric aspects ofmedicine (Burstow and theyare trying to distance themselves from. Weitz, 1988; Burstow, 2006), not to the other aspects ofthe medical model While Deaf, trans and psychiatrized people are workingtowardbecoming or the model as a whole. non·disabled, othergroups have beenfar more successful.As alreadydiscussed, The trans (transgenderl transsexual, genderqueer et al.) community is a women were classified as unfit or disabled during the eugenic era. Feminists group ofpeople that has been psychiatrized but, on an organizational level, fought for women's rights and iu doing so worked to construct themselves does not work with psychiatric survivors to achieve non-disabled status. as nondisabled, reinforcing the oppression of those they left behind. Many Ratherthanbeingprotected onthe grounds ofgenderorsex, trans peoplehave feminists have perpetuated the constructionofwomen as strong) non-disabled human rights protections in NewYork (andpossibly otherstates) because "GlD people, saying things like, "Female physical frailty is not a reality but a myth [gender identity disorder] is a disability" under state law (Doe v. Bell, 2003: with au agenda" (Dowliug, 2000: 213). n.p.). Trans people are pathologized under the category of gender identity Racialized people have also worked to distance themselves from disability. disorder (GlD); ouridentities are funnelled through medical "treatments:' This Erevelles, Kanga andMiddleton (2006: 78.79) have writteu aboutsomecritical process is undermining, arduous and canbe abusive (particularlywith respect race thinkers who "have actively sought to distance race from any associations to children). Some trans activists are fighting for the removal ofGIn from the with disability because they have recognized that this association has been DSM so transsexuality would no longer be a disability. DL.JCclly'-winten; (in used to justify the brutality of slavery, colonialism, neocolonialism and the G]P.Jlefurm 1\ continuedexploitation ofpeople ofcolor." 'Ihe.Qisabilitylabelhas beenused in p".o.E!e]..=cQm:!iti .. <;ontilw"s:.'Pi!ference waYSj!g and lesbians took an active role in fighting for change. One ofthe key aims of women members).5Racialized communities and women also sold out many the struggle was to establish homosexuality as a minority group rather than members of their communities in order to access privilege by winning the a disability. The mainstream gay rights movement argued that the categoriza- status ofnon-disabled. tion ofdisability needed to become one ofthe key battlegrounds in the,;ights Griffin Epstein (2009: 33) says that there is a "national mandate for the movement (Kameny, 2009)."" • formerly marginalized to pickup the mantle oftheoppressorinexchange for the The mainstream gay rights movement built itself through its separation rights and privileges ofcitizenship:'Withrespect to disability, all ofthese groups away from othermarginalities and its separation from the disabilityumbrella.' (women, racialized people, homosexuals, trans and otherpsychiatrized people In establishinghomosexuals as non-disabled, the movementactivelyorganized and Deafpeople) have taken up that mantle in order to win reclassification as against being defined as disabled, as well as being against those who defined non-disabled. Those groups that have won a level ofmarginality that does not homosexuals as disabled: the American Psychiatric Association (APA). The include being called disabledlargelycontinue to upholddisablism and maintain APA was the gatekeeper of all psychiatric diagnoses and had the power to separation from disabled people. Indeed, Davina Cooper (2009: 233) argues: un-psychiatrize homosexuality. This criticism was not ofpathologization or "When one minority group tries to seek equality by breaking away from the the oppressive nature ofthe classification ofdisability in general, Simply that stigtnaproduced by association with another group, the claim ofequality can those in power had erred in classifying them as disabled. This strategy actually further naturalize the otherminoritygroup's alienation:' This act ofseparation worked to maintain disablist oppression and the status quo while negotiating often serves to reinforce the justifi.cationfor the oppression ofthose left behind. privileged homosexuals' co-optation. Ofcourse, there are manydisabled peoplewho are also members ofthese In 1973, the mainstream gay rights movement was successful in getting groups thathave beenleft behindin these definitional shifts. Beyondcontinuing homosexuality de-listed as a psychiatric disability. Gay psychiatrist Charles to oppress other members ofthese marginalized groups, there are otherreasons Silverstein (2008: 272) called it "the most important achievement ofthe Gay that make the struggle to reconstruct these groups as non-disabledproblematic. Liberation Movement:' Out ofthis, a new "minority rights" movement was Ofcourse, it is always problematicand disappointing (yet, almostpredictable) born. Homosexuals would no longer be forcibly confined, electro-shocked, for marginalized groups to participate in the oppression ofothermarginalized drugged, lobotomized and subjected to other horrors Simply for being homo- groups. Rather thanworking in coalitions to challenge the systems that permit sexual. Undoubtedly, this is an incredibly important victory in the history the characterization ofundesirable people as disabled, these groups have cre- of gay rights and one I personally benefit from. However, it is important to ated space for their communities tobe at perpetual risk ofbeing reclassified as examine it critically. It was a victory for many homosexuals at the time, but a disabled on other grounds as the needs ofthose in power shift. lot ofhomosexuals were left behind. Threats of being placed back under the disability umbrella are real for To be gay orlesbian is no longer to be pathological, as white, middle- and racialized communities, women and homosexuals. Academics like Rushton upper-class homosexuals and bisexuals (especially gay men) are considered to andJensen have devoted theircareers to proving the intellectual inferiority of, be productive and useful in contemporary society (particularly the "straight particularly, Blackpeople to buildthe case that theyare disabled. The prospect acting" gays or "strays"). The mainstream movement has rallied around ofthe re-pathologization ofwomen has recently become an issue because of assirrulationist issues like gay marriage, gays in the military (in the United prenatal sex selecti.on. Also, the discovery of a "gay gene," which is actively States) and adoption that work to uphold capitalist values and social norms. beingsought, couldlead to the re-pathologization ofhomosexuality. These are This is done instead of, and at times at the expense of, organizing in defence justsome oftheways that these communities could be reclassified as disabled. of(or even actively marginaliZing) "deviant" queerlifestyles like polyamoury, Because components ofthese movementshave workedto reinforce the idea sex work, transsexuality; transgenderism and gender queerness that challenge that disability (and by extension disabled people) is bad and undesirable, they those values and norms. Manyofthese ways ofliving remainpsychiatrized and will be left with few political options ifthey face re-pathologization. Further, are still considered disabilities. That said, there remains strong opposition on these groups all share overlappingpopulations, so, racialized queerwomen are the political right to the of"strays" into mainstream society. especially at risk ofbeing put back into the disability box. The mainstream gayrights sold outits disabled members (not to Adopting a radical modelofdisability, rather than tryingto break outofthe mention its racialized and pOOf, trans, intersexed, two-spirited and, oftentimes, disability category, would problematize the entire disability labelling process, 106 / Disability Politics and Theory Looking Back but Moving Forward / 107 not jnst a few communities' membership within it. Snccessfully eliminating This competitive oppression-building is also performed by disability the systems that permit the creation ofthe category ofdisability would leave organizations towards those groups thathave moved outside ofthe category of every member ofall ofthese marginalized groups better off. disability. Just one example is how, in Canada and the United States, disabled Ofcourse) the reinforcing ofoppression in order to getoutfrom un4e:r the organizations have fought for "accessible" public transit; but once ramps, disability label is only one way that marginalized groups work to uph'bfd !he lifts and automatic announcement systems have been put in place, they stop oppression ofothers. There are countless examples ofwhen andhowoppressed fighting. These organizations don't fight for free or affordable transit or an end groups (including disabled people) have targeted or tried to oppress each to discrimination on public transit) to name but a few causes.6 Movements for otherfor rights and resources. 1his is because) according to Martin Banton and change cannot continue to replicate the models ofco-optation and oppression. Gurnam Singh (2004: 113), "oppressed groups often succumb td' oppressive Disability is not actually about those of us who are disabled; it is about" ideologies. One of the consequences of this is that the group "may seek to those with the power to call us disabled. Indeed, marginality is controlled by identify a position within the strata that is superior to as many other groups those who are not marginalized, which makes it very important to work col- as possible:' When this happens, according to Banton and Sing, oppressed lectivelyas oppressed groups to target that power. Further, one cannot choose communities can act to "reinforc[e] the structures ofoppression:' to oulyfight disablism, as most disabled people experience more than one form Disabled people are notimmune to this phenomenon. Disability organiza· ofmarginalization and) therefore) more than one form ofoppression. tions in Canada and the United States have frequently "picked up the mantle This is why poverty, seXism, heteroseXism/homophobia, transphobia, ofoppression" and allowed themselves to be co-opted, rather than build their racism and ageism must be fought in tandem. Internationally, most disabled struggles outward. There are numerous examples of those groups still well people are racialized (New Internationalist, 200S; Parens et aI., 2009). In under the disability umbrella trying to distance themselves from others to Canada, rates of disability are disproportionately high among First Nations gain privilege. Some physically disabled people were against advocating for people, racialized people and non-European recent immigrants (Raphael, the inclusion of people who were psychiatrized or intellectually disabled in 2007).Also, mostdisabled people are women- theyare more likely than men the Charter of Rights and Freedoms because it could lower their chances for to report chronic conditions and disabilities (Federal, Provincial and Territorial inclusion (Vanhala, 2011). There has also been a great deal ofcriticism ofthe Advisory Committee on Population Health, 1999; Raphael, 2007). Disabled disability rights movement for being dominated byphysicallydisabled people. people are far more likely to be poor than non-disabled people (Rosano et There is also a Facebookgroup called "Being physically disabled does not al., 2008; Raphael, 2007; oEeD, 2010). Many of us are queer and/or trans, automatically make us stupid." It tells people to "join this group and together and most ofuS are seniors. Our multiple identities means that ifwe focused we can make people change their attitudes towards us:' The attitudes that are solely on disablism, much like aspects ofthe disability rights movement has being changed, though, are the disablist attitudes about others - and these done, thenwe are working to exclude the majority ofdisabled peoplefrom our attitudes are being reinforced. I have also seen physically disabled people who struggle - people who would not be able to access the privileges that they are the brunt ofdisablism say that they are smart or that theyhave a university would be able to access ifthey were not disabled. degree to assert their worth. It is important notonlyto acknowledge the diversitywithin disabled com- .• On the other hand, I know physically disabled people who have been muuities, butalso to actinsolidaritywith othermovements. The disabilityrights the subjects ofpity from intellectually disabled people who operate on the and social models have largely failed to fight other oppressions and to work in assumptionthattheyhave it so muchworse. Manyintellectuallydisabled people solidaritywith other marginalized groups andanti-oppression movements for identify as "people who have been labelled" (People First of Canada, 2006). change. Rather than fighting for our piece ofthe pie while working to enforce The choice to refer to themselves as "people who have been labelled" without eXisting oppression on others, we need to bake a new pie. We have to build using the word "disabled" reinforces the idea that there is something negative new models. To quote longtime activist Beric German (2009), "It cannot just about being disabled, while addressing the root ofthe problem, orthe fact that be pie in the sky, it has to be pie that you can the label exists, is out oftheir coiJ,trol. I think itis important to respect the way that people choose to identify. same time, I am critical ofthis choice as it seems to me to be rooted in disablism. lOll! Disability Polities and Theory Looking Back but Moving Forward / 109 Normal, Biological and Political Constructions do everything that they can (which is obviously out oftheir control) not to Disability, which includes impairment, is a social construct. In U.S. and become like us. Canadian societies, OUf disabilities are defined bythose in powerto their own Undercapitalism, individualproductivityis linked to individualworth: the advantage. WhoatlQ shiftsclepem!irlgon wh.\ltJ'.o",er more you produce, the more money you make and the more valuable you are d\et.ales.illte.tJ.tiJnes.withhroad, sweeping definitions in order to marginalize to society. As productivityand worth are measured entirelyin monetaryterms, Peop-Ie. In this society, power and capitalism are intrinsically related. Those in people who are left out ofthe system, such as disabled people, are worthless. power enable capitalism to function, and capitalism enables those in power Ofcourse, most disabled people who are excluded from paid labourare left out _'"rto keep their power and obtain more ofit. According to Sam Gindin (2002: because ofdiscrimination and inadequate workplace accommodation. Rather n.p.), "Some people control the potential ofothers, control howthat potential thanarguing that disabledpeoplecanbeproductiveina capitalist paradigm, the develops over time, privately appropriate the surplus created in social produc- radical model ofdisability sees capitalist values as problematic. People should tion, and apply that surplus to restructure work, communities, and future op- not be valued byhow much money we make, how much we produce or how portunities:' It is these elites that also control the definition ofwhat is normal much we contribute to an unsustainable and unjust economy. and, therefore, what is disabled, in order to maintain and expand influence and This is not a romantic or superficial point. TIlls is an important contribu- control to their benefit. The definition ofdisability shifts as the needs ofthose tion that radical disabilitytheorycan make to radical politics today. Frequently, in powershift: as economic and social needs change, so too does the peoplewho are organizingoragitating for social justice retain this core capital- tion ofwho is disabled. People who are disabled are labelled so because people ist value. We often view other people's value through their contributions to with power say we are disabled. the struggle, through how much work they do or how productive they are. If Since the advent of eugenics, one ofthe primary reasons we have been, we truly want to create a just society, we must value people as people, not as and continue to be, categorized as disabled is because we are considered to be producers. unproductive orunder-productive in the capitalist system. In practice, capital- What is considered normal ornonMdisabled is constructed around certain ism is a system that is upheld by a number ofmyths. One ofthem is that white kinds ofpeople, while leaving others out.Anothermyththatis firmly upheld is people are superior to racialized people. Another is that men are superior to thatdisabled people are dependentand non-disabled people are independent. women (also that there are onlywomen and men as far as gender identities go No one is actually independent. This is a myth perpetuated by disablism and that those identities are fixed). Capitalism is not necessarily patriarchal and driven by capitalism we are all actually interdependent. Chances are, and racist; however, the current form of capitalism that operates globally is disabled or not, you don't grow all ofyourfood. Chances are, you didn't build inherentlypatriarchal and racist. All forms ofcapitalism, however, are innately the car, bike, wheelchair, subway, shoes or bus that transports you. Chances oppressive and work to benefit the few at the expense ofthe many. Also, there are you didn't constructyour home. Chances are you didn't sewyour clothing is a myth that somepeople have powerand wealth because theyworkhard and (or make the fabric and thread used to sew it). The difference between the others are lazy and that there is one ideal that people must strive to achieve. needs that many disabled people have and the needs ofpeople who are not . / In order to maintain our beliefin the capitalist myths, they need to be labelled as disabled is that non-disabled people have had their dependencies, - SOcially imposed. Those ofus who violate the goal ofstriving for the ideal (by normalized. and call the .',,- choice or by our existence, as is the case with many disabled people) or who people who need those things independent, while other nee.gs areS9nsid_ered challenge our roles within the socio-economic system face consequences for us Ot1;rs our deviance. Sometimes these consequences are legal, such as forced confine- resources and to meet our needs. We are all inter4epef!dent.------1his ment and "treatment" ofmany psychiatrized people, but more often they are is ..E,art economic and sociaL We are made into examplesj we are denied the resources, l:!?,:vever, disabled people areconstructedas dependentand deviant rather joys, comforts, jobs and pleasures that "normal" people have access to. We are a£;:r;;;;;:;·;:;;;I:ifwe100katwhow"'''OflgmaIlY7:lassifiedas then punished for our low by way of systemic discrimination, disabled under the first m-;;dern categorization ofdisability (eugenic theory) poverty, dehumanization, degend'ering7 and violence. This is the punishment in Western society - poor people, women, homosexuals, racialized people, used against us. Importantly, though, it is also a lesson for everyone else to physically disabled people and intellectually disabled people - the links 110 / Disability Politics and Theory Looking Back but Moving Forward / 111 between unproductivity and the categorization ofdeviance and disability are litigate against businesses was dramaticallyreduced, whichwouldlimitpotential apparent. While there are clear capitalist functions for the eugenic classifica- liability. In order to permit fewer people the chance to access resources and tions of disability, it is important to recognize that the oppression that these accommodations, the ADA definition was made morc restrictive. An amend- groups experience is not rooted solely in capitalism. Sexism, heten)s!jXism/ ment introduced to the ADA in 2008 was designed to refocus the definition of J,,;" ., homophobia, disablism and racism all exist outside ofcapitalism, and itwould disability. However, peope who need to use eyeglasses continue to be exempt be irresponsible to argne thatreplacingcapitalismwould alleviate all oppression. from the Act (Leonard, 2009), and it remains to be seen what, ifany, impact the changes will actually have. Legislative Definitions of Disability The ADA is complaint driven. Typically, an individual who has been dis- Whatis constructed as disabilityis informed bynumerous forms ofoppression criminated against must have the time, energy and resources to engage in the and has clearly changed over time. Even within a set period oftime, however, court system to seek a remedy to the discrimination. In order to be successful, definitions change depending on the intended outcome. The greater amount people also need evidence that is often difficult or impossible to obtain. Also, ofaccess to resources and rights a piece oflegislation involves, the stricter the litigation requires resources - resources that manypeople do not have access definitionbecomes. Upon the examination offourlegal definitions ofdisability to;'ho:wever} many property owners} businesses and corporations have ample that are used in the Americans with Disabilities Act (ADA) and Supplementary resources to defend themselves in the courts. Security Income (SSI) in the United States, and the Accessibilityfor Ontarians Further, the ADA, like the otheracts I will discuss in this section, qS>'csnoth- ingto address and, while itappears tobebroad and encompass with Disabilities Act (AODA) and Ontario Disability Support Program (ODSP) in Canada, the waythatlegislation andlegal precedentsinfluence social defini- a great numberofpeople, the actual numberofpeople who successfullypursue tions ofdisability becomes clear. litigation is quite small. FromJuly 1992 to September 2005 there were over In the United States, one ofthe mostwidespread definitions ofdisability 230,000 claims filed underthe ADA for employment discrimination. Ofthese, is outlined in the Americans with Disabilities Act (1990). The ADA defines roughly33,000 (Jess than ]5percept) endedin favour ofthe complainant. Ouly disability as "a physical or mental impairment that snbstantially limits one or 2.2 percent ofsuccessful claims were actuallywonthrough the courts, the rest more majorlife activities ofsuchindividual;' and/orhaving a "record of;' and/ were settled or otherwise resolved (Winegar, 2006). While this legislation has or being "regarded" as, having an impairment. This definition was interesting helpedspecific individuals remedydiscrimination, its overall impact is nowhere because itdiverged from the medical model, in part. It used a more rights/social near what is needed to undermine disablism in the United States. model definition because it included people who were "regarded" as disabled. Canada does not have federal disability legislation that is comparable to However, in 1999, the U.S. Supreme Court tightened the definition of the ADA. The Canadian Charter ofRights and Freedoms (1982) protects against disability under the ADA. People who had "easily correctable" disabilities like government discrimination on the grounds ofdisability (which is undefined nearsightedness (with glasses) orhigh blood pressure (with medication) were in the law). Additionally, each province has a human rights code that contains no longer considered disabled. They were told, according to Michael Berube protections for disabled people. However, human rights law does notnecessarily (2093: 54), that they "had no basis for a suit under the ADA precisely because entail physical inaccessibility or lack ofinterpreters, for example. Like the ADA, their disabilities were easily correctable:' however, this legislation is largely complaint driven. This meantpeople filing suit nnderthe ADA were "too disabled to be hired In Ontario, the country's most populated province, there is disability- (ODA) but somehownot disabled enough to be covered by the ADA; or, to put it this specific legislation: the Ontarians with Disabilities Act (2001). This law way, plaintiffs' (Ontarians with Disabilities Act, 2001: 2. (1)(a); Accessibilityfor Ontarians with under certain pieces oflegislation, this is primarily not to benefit us butrather Disabilities Act, 2005: 2. (a)). to benefit those in power. This definition is incrediblybroad, butprovides little meaningful assistance The same government that celebrated itself for passing the Ontarians for disabled people. Additionally, the governmenthas refused to enact sec- with Disabilities Act arbitrarily changed the definition of disabled for social tion making it an offence to break this law, so it is essentially useless assistance, which led to thousands of people no longer being considered ofcourse to the governingpartywho enacted thelaw, as theyreceived extensive disabled (Toughill, 1995) and hence no longer eligible to receive financial positive media coverage from its passage (Lepofsky, 2004). support. Similarly, the conservative government inBritish Columbia redefined Where thebenefit to disabled people is greater and has ameaningfulimpact disability and required people receiving assistance to submit twenty-three on people's lives, the definition of disability becomes much more restrictive. pages offorms to re-prove they were disabled in order to retain their benefits Supplementary Security Income (United States) and the Ontario Disability (Lavender, 2003).gln the United States, the 1996 Personal Responsibility and Support Program provide (measly) montWy amounts to people on disability Work Opportunity Reconciliation Act redefined disability, resulting in 100,000 who are declared unahle to work. Theybothrequire medical documentation of children losing their henefits (American Academy ofPediatrics, 2001). These conditions that are terminal orwill last at least a year (Social Security Online, were all made more restrictive in order to reduce benefits for many 2010; Ontario Disability Support Program Act, 1997). Disahility, in the case of people and to save the government money. Supplementary Security Income (SSI), must lead to an inability "to engage in When there is little or no benefit, but lots of stigma, to being disabled, any substantial gainful activity" (Social Security Online, 2010), which to the definitions are broad. But definitions increasingly narrow as the level of and American government means productive, paid employment. With respect to access to resources increases. These definitions, like all definitions ofmarginal- the Ontario Disability Support Program (ODSP), the definition also involves ized people, are used as forms ofcontrol, creating large groups of"others"when a "substantial restriction in one ormore ... activities ofdaily living;' which are it is useful. Further, these definitions remain under the control ofthose with personal care, paid work or operating in the community (Ontario Disability power and can be changed to serve their needs and desires. Support Program Act, 1997: s4. (I)(c)). Neither 55I nor ODSP account for systemic discrimination in employment; Who Is Disabled? this means that there are disabled people who cannot work because they are People are disabled. We are disabled if those in power say we are. This is an disabled (because no one will hire them), but cannot access disability social identitythat is fully outofour control. However, because it is outofour control, assistance because they are not disabled under the legislated definition. The there are some people who are notallowed into the disabilitygroupingbecause ADA andhuman rights legislation are supposed to remedythis, but they don't, they need to access resources. By denying people the identity ofdisabled they just as civil rights legislation did not end employment discrimination on the are automatically refused resources, accommodations, social assistance and grounds ofrace or racism in general. Because there is a discrepancy between human rights protections. 1hisis the plight ofmanypeople with non-apparent, who counts as disabled under the ADA and under SSI, there is a class ofpeople or"invisible," disabilities. Further, as long as ourcommunities remain classified who are unable to obtain employment and are unable to get income support. in the category ofdisabled, rather than hold the power to create the category The'se people are disabled only when it is to other people's benefit, not their itself, we will have a divided disabled community, one that is unlikely to build own. unity and a base of resistance together. So, who is disabled? Anyone who is identified or who identifies as disabled. Implications of Definitions of Disability AsTomShakespeare (2006b: 77) contends, "Definingdisabilityinterms of When people actually get access to money, accommodations, equipment or social barriers or social oppression, ratherthan abiological impairment, opens attendant care, such as those individuals defined under social assistance legis- up the category to a range ofother socially excluded or devalued groups:' The / ... lation like SSI and ODSP, the definitions ofdisahility are rewritten, classifying problem with this argument is that it assumes that biological impairment and \, veryfew people as disabled. legislation that is general, like the ADA and, social oppression are severable, which they are not. Shakespeare takes opposi- espeCially, the ODA, the definitiorl'is broad and aimed at reaching as manyvot- tion to, for example, fat people beingincluded in the disability identitygroup. ers as possible. While there may be some benefit to being defined as disabled However, I argue that fatness is a disability. Obesity is a medicalized t-' 114/Disability Politics and Theory L.ooking Back but M.oving Forward /115 condition and commonlyregarded as a disability - at least depending on the risk of legitimizing the medical model of disability, as it is the primary and definition. In Cook v. Rhode Island Department ofMental Health, Retardation, oftentimes exclusive mechanism for labelling disability. Self-identification is and Hospitals (1993), the court found that Ms. Cook was disabled under the the only way that people claim membership in the queer community and it ADA. She was a fat woman who was not hired because she was to has worked out fine. Imagine ifqueers were afraid that straights would start be disabled by her obesity. The ADA defines a disabled person who h[s,' or is identifying as queer in order to get access to the few benefits that we have regarded as having, substantial limitations performing "major life activities:' (equity hiring and awesome parties) that we made people go to a doctor to One ofthese activities is working, and Ms. Cookwas unable to work because get documentation they were queer. she was regarded as disabled; therefore, she was disabled under the law. This A parallel example ofthis gatekeeper phenomenon is when women-only was a curtail case as Cook continues to have positive employm,ent implications spaces exclude trans women. This is often justified on the basis that a man forfat people (Carpenter, 2006).An interesting circular definition ofdisability could come into the space) say he is a woman and be violent. In reality, a man was established in this case, wherein if someone is fat and perceived to be or a woman could come into that space and be violent. In a situation like that, disabled and that perception prevents them from working (or doing any ofa which is an imagined worst-case scenario, you deal with the behaviour at numberofother activities) thenthatpersonis disabled. This First Circuit court the'tit1?-e. As someone who has done training for homeless shelters, some of demonstrates what a radical understanding ofdisability looks like: those with which were women-only spaces, I have had this same conversation a number power (the employer) considered someone as disabled, treated her as ifshe oftimes with staffand residents. For the most part, I do not think that people was disabled and, therefore, she was disabled. raise issues out ofmalice but out offear. The reality is that these hypothetical -jThe correlations and/or intersectionality between fatness and disablism situations aren't going to happen, and ifthey do, we can collectively deal with have also been discussed by a number of authors (Aphramor, 2009; Rowen, the situations that arise. 2006; Herndon 2002; Cooper, 1997). Like otherforms ofdisability, the defini- Further, because disablism is so deeply internalized in many disabled tionofand the attentionpaid to fatness orobesityhas shiftedwithsocial values. people, we maybehesitant to ask for accommodations. Inmyexperience with Charlotte Cooper (1997: 33) writes, "Many fat people... grow up fearing our the disabled people in my life, we don't "abuse" accommodations: we ask for own bodies in shame, public ridicule and social ostracism and the cultural fear fewer than we need or than would be helpful. There is a tremendous amount and hatred ofus can ruin ourlives. I believe that self-defining as 'disabled' enables ofstigma around disability, so disabled people are less likely to ask for what us to take ourselves seriouslyand demand others do also:' April Herndon (2002: we need, not the otherway around. Forcing people to prove they are disabled 122) asserts disability needs to be understood "as a diverse social category that is notthe solution to the hypothetical problem ofnon-disabled people saying can meaningfully incorporate fat embodiments." Cooper goes on to say, "Fat tbeyare disabled in order to gain advantages. people's demands are regarded as trivial compared to those ofdisabled people; Disabled people have been overwhelmingly excluded from society. Our thus, the notion ofcivil rights for fat people is little more than a joke" (1997: 33). community shouldn't replicate the same problems. Disabled people's spaces Shakespeare and other disabled authors and activists perpetuate the trivi- can be empowering and important to our sense ofwell-being and belonging. aBzation offatpeople's experiences and demands bytheir conscious exclusion We need to relearn ways ofbuildingcommunity, ratherthan replicate the flawed of fat people from the disability umbrella. Further, as disabled people have divisions that have been forced on us for so long. so commonly been the brunt ofthe other end ofthis dynamic - the ones excluded, the ones who have had their oppression supportedbygroups trying Difficuity and Trouble: Real Experiences of Being Disabled to reduce theirs - we should notbe doing the same thing to others. Because many disabled people find pride in our disabled minds and bodies, Some people raise the concern that there will be people who identify as this doesn't mean tbat we don't have difficulty with them. Sometimes, we do. disabled who aren't actually disabled (see, for example, Shakespeare, 2006b). But these difficulties are not because we are disabled; we experience them However, people do not claim marginality oftheir own choosing. There may because we are human. Everyone gets frustrated with their minds and their be extreme or hypothetical ciri:!!>mstances in which such a situation might bodies at some point. Inspite ofdisablist discourse, this is notunique to those occur) but it doesn't make sense exclude people based on imagined worse ofus classified as disabled. case scenarios. Ifwe fail to let people self-identify as disabled, we also run the One ofthe key criticisms ofthe social model has beenthatitdoes not give 116/ Disability Politics and Theory Looking Back but Moving Forward /117 space for people to talk about the difficulty that theyhave with their minds and We need to create space, within a radical theory of disability for people bodies. Over a decade ago, Michael Oliver (1996) countered this criticism, to talk about our difficulties. This does not mean that people who are identi- : f sayingthat there just needed to bea social model ofimpairment to complement fied as disabled necessarily have more trouble with our minds or bodies than / the social model of disability. However, within the hegemony of thelPcial non-disabled people. This does not mean that our diffi.culties are permanent model, there has been an understanding that there is a separation betWlieh our or stagnant; rather, our perceptions ofour minds and bodies shift depending political, public presentation and ourprivate lives (Tregaskis, 2002). on any number offactors. To say we should just wait for a social model ofimpairment is simplistic We refuse to talkabout ourlives, and ourtroubles around them, instead of and dismissive. I feel a lot ofpressure from social modelists not to talk about talking about them openlywithin a radical framework. As a result, all it takes is the trouble that we have with our disability labels and our minds and bodies. one ChristopherReeve (1998: 287) calling for a cure and saying "merelybeing I feel a responsibility to our fight for justice not to say certain things. Tom alive is not enough" to reinforce the disablist notions that our arguments are Shakespeare writes: wrong and OUf lives really are worth less, or even worthless. OUf politics cannot draw distinctions between our public and ourprivate Manydisability rights campaigners concede thatbehind closed doors lives. We cannot draw arbitrary lines down our lives, leaving out parts ofour theytalkabout aches andpains and urinarytractinfections, even while lived experiences because they are not convenient to our arguments. We need theydeny any relevance ofthe bodywhile theyare out campaigning. a disability politic that is true to ourlives, one that doesn't make us keep secrets Yet this inconsistency is surely wrong: ifthe public rhetoric says one - secrets that ultimately weaken our arguments. thing, while everyone behaves privately in a more complete way, Disabilitypride can co-exist with our real minds, bodies and lived experi- then perhaps it is time to re-examine the rhetoric and speak more ences, which can include the joys and the difficulties that our diversity brings. accurately. (2006b: 52) Perfectly healthy people who never struggle with their minds and bodies, who are never challenged by them, do not exist. '!his "ideal" is a construct to There is, however, a real fear for me, and I would guess the same for many perpetuate disabled people's marginalization. Evolutionary biologist Marlene others as well, to talkabout mydifficult experiences with mybody. A few years Zuk argues that diseases have evolutionary purposes and are a basic presence ago, I wrote about how hard it is: in all ofhuman existence. Zuk (2007: 10) cautions against a war on disease: I am afraid that I will help fuel the fires of hatred against disabled "What we should hope for is not victory, but reconciliation:' Reconciliation, people. IfIsay that [mylife can bepainful andisolating] that could be with respect to disability, would mean an acceptance of human diversity, used to snpport the argnment that disabled people do nothave full and including the fact that we all have different minds, bodies, needs and abilities. rewardiug lives. IfI address the difficulty that many disabled people Itwould mean welcoming the different perspectives that this diversity brings. have accessing support and the tension that that puts on personal The kinds ofpeople who are currentlylabelled disabled have always been relationships it couldbe manipulated to contend that disabilityshould a part ofour population and offer important perspectives and contributions. be eliminated to spare parents from the burden ofhaving a disabled Disabled people are often celebrated for our accomplishments in spite ofour child. If! talk about the depression, and even the sense ofworthiess- disabilities (people like Franklin Roosevelt and Helen Keller). We are rarely ness, that can go along with chronic illness, chronic pain, and limited recognized for thecontributions we make because ofour disabilities. Forinstance, access itmight be twisted around to bolsterthe position thatwe aren't when I am having a hard time walking, 1walk very slowly and 1notice a lot of worthy ofIife. IfI honestly talk about the struggles that I endure on what is around me. Because I experience the world differently than many of a daily basis what we have to say about our lives and the world may the people around me, I have a unique and useful perspective. be reduced to inspirational material rather than meaningful and importantinterpretations oftheworld around us. (Withers, 2007: 36) Radical Access Within the disability rights and social models, accessibility means different These are the secrets I have kept order to help to build a movement. We all things depending onwhoyou are talking to and when you are talking to them. keep secrets. Ideas ofaccessibility were often more restricted and solely focused on physical 118/ Disability Politics and Theory Looking Back but Moving Forward /119 access (i.e., lifts and ramps) in decades past, but the ideas surrounding access meansthatonestrives to communicatein ways that are easilyunderstood. It also have begun to expand. means that oppressive language is not used. This includes disablist language, Like all disability models coming from disabled people, one of the key which is pervasive within North America and the Left. Sometimes, however, issues is access. However, the radical model does not advocate solelyfor ramps words do have multiple meanings according to the dictionary: "paralyze" can and lifts - though physical accommodations should always be We mean to fully stop; "deaf" can mean to refuse to listen; "disable" can mean to advocate andagitate for radical access. Access needs to be addressed collectively, breakor turn off; and"crazy "can mean ridiculous. But} as Chris Chapmansays} across bodies, boundaries and borders. Radical access means acknowledging while these words "have acceptable usages about things other than people, in systemicbarriers thatexclude people, particularlycertain kinds ofpeoplewith terms ofwhatdictionaries say, I would suggest thatitis impossible to use these certain kinds of minds and/or bodies, and working to ensure not only the words without evoking people." Chapman (2010, n.p.) argues that "whatever presence ofthose who have been left out} but also their comfort} participation dictionaries say - it would be impossible for me to say 'gay' and have it only and leadership. Spaces that need to incorporate radical access principles are signify 'happi" Double usage or not, disablist slurs need to be stripped out organizational, they are educational and institutional, but they are also the of everyday langnage ifwe want to create spaces where disabled people feel spaces closest to us: our cafes, OUf officesJ our homes and our hearts. welcome andwanted. No space is ever accessible ifoppressive language is being Radical access is not about "universal design" or universal access - that is used} no matter what other measures are taken to make it so. an arbitraryand fictional concept. According to Ron Mace, the manwho coined the term "universal design;' it is "the deSign ofproducts and environments to Conclusion be usable by all people, to the greatest extent possible, without the need for This model would not have been possible to imagine before the disability adaptation or specialized design" (Center for Universal Design, n.d.). The rights movement, the social model or the important work of many radical problem with this concept is that people and their needs change. An obvious, activists and thinkers. There are also many directions this model could go in. and unfair, example is that ifabuildingthatfits a universal desigu oraccess mould For example, there could be important shifts in language. For instance, the is in Finland and I cannot go to Finland, then it isn't accessible to me. However, term disability justice is used, largely on the West Coast ofthe United States, even if the building is downtown, but transit is expensive and I don't have the to radically respond to the disability rights movement. Also, a disabled friend money, orif! am a Black man and the streetcar refuses to stop to letme on, or if ofmine, AmandaDorter, has started using the word "disablized" to talk about 1am a wheelchair user and the streetcar is not phYSically accessible to me, that disabled people inorderto betterindicate theimposition ofthe disabilitylabel. buildingis not universally accessible. Access doesn't just begin at the front door. As peoplebeginto see themselves, and others} in increasinglyradical ways) our When1was muchyounger and was relativelynew to activism, 1frequently politics and the words that we use to talk about them will evolve. talked about identity groups exclUSively as groups, not about the many indi- Itis important, however, that the fundamental tenets ofthe model - the vidual people who make up those groups. One of the most valuable things necessity of recognizing and relating to intersectionality, that disability is a that developing the radical disability model and radical access polities have social construction, that the disability label is imposed as a tactic to retain taught me is that I cannot simply paint groups with one brush. Access politics power and social control and that we have to create space for each other both demand that we treat people as people and look at each ofour needs and how in terms ofacknowledging our lived experiences and ensuring accessibility- to collectivelymeetthem. While there are specific, basic demands thatwe need remain intact. Rather than perpetuating unrealistic ideals for humans, radical to putinplace to ensure some standards ofacceSSibility, each ofus has ourown disability theory calls for reassessing and revalUing people. We should not be needs, and access should be collectivelynegotiatedbetween everyone involved. penalizedfor falling outside ofarbitrary and unjust norms ofproductiVity and This negotiation is never neutral and cannot take place without considering independence. There is nothing wrong with us. We should be celebrated for present-dayoppression, as well as the histories ofoppression. This negotiation is our diversities and our perspectives. not about creatingroom for people inspite oftheir marginalitybutrecognizing Radical access and radical disability theoryare notfringe ideas - theyare that everyone deserves space and\!!at their membership in an oppressed group fundamental ideas looking at the essence ofwhat disability and access mean brings perspectives and that are not only welcome but wanted. for everyone. Radical disability theoryis about fighting to redistribute power Radical access also includes intentional and accessible use oflanguage.This and resources and creating accessible spaces and communities. 120 / Disability Politics and Theory Byfighting to make it happen, I literallymean thatwe have to fight. Radical access and an end to disablism will never be handed to us. We have to work together to demand and create change. We have to move beyond the identity politIC ofphysical access andworkto create access for all. We have to and consistentlyconfront OUf own actions and ways ofreinforcing References Perhaps mostimportantlythough, we must organize.We mustworkinsolidarity with othermarginalized groups,and we must get pastourdifferences and fight for justice, dignity, equality and access. Abbott, Anne. 2011. Personal interview. Toronto, August 27. Accessibilityfor Ontarians with DisabilitiesAct. 2005. S,O. 2005, Chapter 11, last amend- Notes ment: 2009, c. 33, Sched, 8, s. 3. 1. I amputtingthis theoryforward, itwas collectively developed, particularly Ad Punch. 2007. "Metlife Foundation: Alzheimer's Disease Steals Normal Life." with Erickson. Griffin Epstein has also been integral to its articulation, Like many good stories, the early threads of this one were woven over dinner, a large bowl of saffron laced paella, steaming on the table between two good friends. Leroy Moore and I were excited over his recent collaboration with Todd Herman – a film entitled Forbidden Acts that intertwines Leroy’s randy poetry with tasteful yet explicit cock and body shots – and sharing dismay that most people can’t seem to conceive that people with disabilities are sexual, let alone sexy. Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne my forehead pressed hard against the cool wall sweat slips across the base of my neck leaving a salty trail for your tongue to track should you choose to follow. i inhale slowly in synch with your fingers' penetration. your wrist corkscrews circles getting smaller a zen garden in my flesh and i am pinned by your round shoulder to the wall and i open my mouth to taste plaster breathing you a wordless whimper of ecstasy. you hiss into my ear that i am a good puppy girl open all the way for you my cunt my heart my ass my mouth my mind everything open to your fucking vulnerable and so wanting. a knuckle presses the base of my hole and you uncurl a third finger up between my walls and you begin to thrust and i begin to chant your name daddy daddy please feed me daddy and you do filling me with a deep breathless undulating fuck each push taking more and your arm begins to pound. my mind spins a cacophony of screams to the meter of your voice because here is your sweet girl sweet girl sweet girl tighter good whore daddy's whore pretty whore tighter little toy fuck toy baby toy squeeze touch touch there daddy please scratch there there please and i am spread open pumping you stretched out needing you moan i push ignite ignite we ignite to catch pulses pulses it pulses and i catch fire branded and i come to you alive with awe. - patty berne sins invalid 2006 We’ve both been disabled since birth, and bluntly, we’re both pretty hot, and we both humbly know it. Still, every day throughout the day we each struggle with the disconnect between what we know to be true about our beauty and the passion of our lives, and what the world seems to believe, that we are less than, undesirable, pitiable… it’s hard, to know that you have been blessed while others seem convinced you’ve been cursed. Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne Leroy F. Moore, Jr. Excerpt from Swimming against the Stream Sins Invalid 2006 Mmm, my sperm here it comes watch out! My sperm has history swimming against the stream My sperm has been rejected, feared, studied and labeled dangerous by the mainstream My sperm has caused scientists to write books Politicians to write laws Doctors to write prescriptions My sperm put the fear in Charles Darwin, slave masters and Hitler My sperm has women running to the doctors My sperm has been swimming against the stream My sperm gave birth to the eugenics movement My sperm is in test tubs marked “DAMAGED!” My sperm has been swimming in deep shark invested waters My sperm, you think could cause one, two or worse a whole generation like me… So, being an activist and an organizer, we did what we know how to do – organize. And a performance event on sexuality and disability was in the process of being born – Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility. Well, truth be told, at first it was going to be a small video screening for a few friends in a local café…and our early working title still conjures up images of bloody puddles in my mind. But the universe often offers unexpected gifts, in this case manifesting as our friends and veteran artists Todd Herman and Amanda Coslor. We told them about our idea and they offered to collaborate, contributing massively toward the aesthetics, contacts, available resources and experience. Sins Invalid then had a dedicated core group, moreover, a family. And to top it off, we then had a fiscal sponsor – The Dancing Tree. But, let’s backtrack for a second – what’s so innovative about this show? Well, besides the obvious “have you ever been to an erotic event featuring people with disabilities?”, let’s take a look at the context in which we live. We know that our culture maintains embodied and Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne enforced “norms”, norms that constrict all of us with unmet expectations and fears of the repercussion of not “measuring up”. Regardless of where we identify on the spectrum of sexuality, gender, size, ability, age, class, etc., the boundaries of our normalcy get policed. And when we transgress boundaries by having different abilities, gender presentation, etc, we are at risk of social and economic alienation, hostility, threats to safety / violence and the deepest acts of dehumanization – the implied and at times explicit message being that “they” (insert any oppressed group here – people with disabilities, African descended people, poor people, immigrants without state documentation and on…) are a different kind of human, “they” don’t feel or think as we do, “they” don’t deserve what we have, “they” are less than us. To bring the issue to the body, the definition of the “normal” body is becoming ever narrower, to the extent that even the natural process of growth and aging is seen as a problem to overcome. People with disabilities are often seen as “flawed” beings whose hope of normalcy rests in the “medical model”. Hold up – you gotta trust that this tangent into political framing is central to the telling of the story, okay? Cool. The “medical model” is a way of looking at a person w/a disability. The “problem” resides in that person’s body, and the solution is to “fix”, cure or in some way modify that disabled person to fit into existing conditions and frameworks. Hhhmmm…there’s something missing in this medical model… can it be an analysis of power? The disability rights movement articulated another lens of viewing disability – the social model. With this view, we understand that the “problem” resides in sociopolitical and economic structures which exclude an array of people and abilities, and the solution is social and institutional change. This should resound familiar with folks from a social justice perspective. But still let’s make sure we’re clear. Let’s say I go to a building which has stairs; my wheelchair does not climb stairs. Is the problem that I cannot walk up stairs? Or is the problem that the building owner and architect did not create a building which allows entrance to people with a variety of means of mobility? Is the problem my body? Or is the problem being excluded because my body is different than the building owner’s? Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne As people with disabilities, we are not oppressed by what we can or cannot do with our bodies or minds. We may be inconvenienced by living with an impairment, but what oppresses us is the systemic prejudice, discrimination, segregation and violence we face because we do not fall within a perceived “norm”. And the real irony is none of us do. As social justice advocates, we know there must be avenues for resistance to oppression and celebration – and here is the power of Sins Invalid. We challenge dominant notions of the disabled body and sexuality because we understand it is key to challenging the oppression of people with disabilities; moreover, our performers offer stories and visions affirming our strength as people with disabilities, creating beauty in which we are centered. So, meanwhile, back to our laptops and cell phones, we had a show to create – yowza! Leroy, Amanda, Todd and I began meeting in my tiny plant-filled living room to plan the show. A call to artists was placed and by the end of an arduous selection process we had a phenomenal group of artists defying norms, committed to speaking their truths about their bodies, their desires, their visions for the world – and not surprisingly given who we are – folks were mostly brown and black, mostly queer and genderqueer, 100% compelling. Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne Powerful people with stories to teach – from ‘ron daniella, mixed race in ancestry and living genderqueer with multiple disabilities, storytelling about his childhood masturbation before he slowly strips to the deep thud of a triphop track to reveal his sinewy body and a ten inch dildo – tocrone-to-be solidad decosta delivering spoken word on living intersexed with eye contact so direct it burned the seat cushions; from dignified and flirtatious Lee Williams, an African American man perched in his wheelchair and in his 7th decade of life entering the stage and baring his heart with the grace earned only through experience – to shy smiling Noemi Sohn describing the sexual and comic tensions of her first kiss in her home country of the Philippines while swaying to Marvin Gaye in the meter of cerebral palsy; from spirit infused Lisa Thomas-Adeyemo recanting poem, vignette and song in sensual mahogany tones – to Ron Jones, deeply thoughtful and artful moving in his meditative recreation of sunset skinny dipping; from fierce femme Leah Rae “spittin’ poetry like fire, upliftin’…” to Lady Venus in full “fat ‘n fabulous” burlesque glory as the MC. And that wasn’t even the video artists – Todd Herman, Thanh Diep, Leroy Moore, Oriana Bolden, John Killacky and myself. Next, we had to develop the look of a show which was simultaneously erotic and communicating resistant politics. It turned out to be easier than one might think, because people claiming their bodies and desires for liberation are tender and powerful and fierce – and that’s sexy. A central part of our process was leadership development. As a whole, the progressive left in the U.S. has not addressed its ableism1, making itself less than hospitable to people with disabilities. Regrettably, the radical left has not done much better. At the same time, to quote Millee Hill from her book Black and Disabled in the Arts, "The disability world contains the same schisms, 'isms' and inequalities that exist in society generally, and the world of disability arts is no exception in reflecting institutional racism." We saw and continue to see Sins Invalid as a place where people with disabilities can incubate a radical political analysis and their skills as artists, particularly those who don’t see themselves represented in the ranks of disability rights/disability culture/disability studies due to race, class, gender presentation, etc. Given this priority, our process looked like a hybrid between a community based organization and a performance – facilitated meetings where we shared updates about the show as a whole, performed for each other to 1 ableism: a set of practices and beliefs, embedded in institutions, which privileges people without disabilities and reinforces that non-disabled people maintain power Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne hone the on-stage work, and engaged in political discussions about our message; one on one’s between performers and Leroy Moore or myself to support the process of disclosing both personally and politically on stage – after all, folks were exposing both their bodies and soul; and, for a performance event, a great deal of collective decision making…that is until “tech”. Tech was, well, in my opinion…hell. The only thing that got us through it was the trust that had developed, the collective commitment of the group, and the intermittent splash of brilliance. But it was still wildly stressful. Things had to be done, and decisions made – quickly. It didn’t help that many folks, including me, were learning what one does during tech as we went along(design the show in the theater space; coordinate lights, sound and performer cues amongst all tech operators). Note to reader: event organizing and running a performance are two very different beasts! Nor did it help that, given cost, we had a tech day. Lots of people have a tech week. There were last minute coordination mishaps between the theater’s technical director and the lighting interns from the local high school. We had equipment failures, including last minute projector freezing and mics not working. Leroy injured his back moving a table, a performer showed up ill, a minor conflict between personalities erupted…it was wild. And, when the lights went down and a hush went through the audience, the magic unfolded. Three hundred people witnessed disabled artist after disabled artist, talking about desire, displaying our bodies and doing it in a way where we were setting the terms of engagement. We moved the audience through a new paradigm, with emotions in the theater shifting from voyeuristic eroticism to intimacy to loss to anger to risk to aroused by a new vision of embodiment. It was beautiful. Sacred for some. A healing happened in that theater. Artists boldly claimed their bodies as whole and perfect, inviting others to join, and they did. The love in the room was palpable. The respect was visceral. In hindsight it’s hard to explain – but I think most transformations are. At the show’s close, we had a sustained standing ovation. For the night, we were done. Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne As I’m sure many organizers out there know, right after the magnetism of an event, there’s an equal and opposite push away from the intensity, a required respite, which can feel like emptiness. There’s a loss – there’s so much syn/energy in the centrifuge of an event that after the motor stops…well, there’s a deflation. Which is why, partly for political process and partly for emotional closure, we held debriefs…We debriefed and heard pluses and deltas from performers. We held a separate debrief for our logistics people, Ann Icardi and Maurice Campbell. And as a core group, Leroy, Amanda, Todd and I debriefed, processed and processed some more, identifying what we were proud of, what frustrated us, and what we would do differently if there were ever a next time. And then, in the weeks following, we received feedback from friends who’d seen the show. People said they were surprised that a show on disability and sexuality could be so hot. On the web, we found people with disabilities who’d been in the audience blogging about us. Scholars in disability studies approached us. And it became clear, our impact wasn’t just on that night – we had made a lasting impression on people. We had asked people to think and it seems that people did. Solidad DeCosta Excerpt from intersexed is how it intersects Sins Invalid 2006 I don't think you can handle my body! my curves swerve like a bat outta hell and my lines define something mixed you see, I am different -- not just reddish brown mixed-race different or pansexed dyke different, for while all those things are a part of me, they are not all of me/there's more/ When I was born, I was whole My body reflected the realities of both Hermes and Aphrodite … No longer full of shame or dread, I am whole again, and my scars just mark the path to my past and the rest is just facts which is not the same as truth because if the medical definition of your biology is the only reality, where does that leave me? For I do not consent to my invisibility, I shatter the glass freak cage and tell it on the mountain my fountain is receptive, my news is representative and my life is anything but done… Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne So, after a month or two hiatus, we started the process again, but this time with a few changes, including a longer timeline. One important piece of feedback we heard was the need for points of entry into the process. (Of course there were volunteer opportunities on the night of the show, but clearly that’s rather limited). So in Spring 07 we facilitated a series of writing and performance workshops for people with disabilities, and we expect to facilitate two workshop series in 08. The organizational process around the performance is another component with which we’d like to engage community members, so next year we hope to seed an internship program. A commitment made after last year’s event was to pursue foundation funding. AEPOCH Foundation expressed a strong belief in our vision, and started us off on a solid footing. With those funds we hired development consultant extraordinaire Elaine Beale, who pitched hard and we’ve now received additional grants from the San Francisco Arts Commission, the Zellerbach Family Fund, Hewlett Packard Foundation, Potrero Nuevo Foundation, and the Rainbow Grocery Collective. With the additional funding, we’re running the show 2 nights this year, with a serious crew – a stage manager, assistant stage manager, and lighting designer. And the show this year – it’s another full on production, with ten live performers and three video artists. We have artists coming to perform from around the U.S. and one artist flying in from France. We are in the thick of it; in fact, this text is being written 53 days until the show. We can’t describe the show quite yet as it has yet to happen, but we can predict that it will change people’s perceptions on disability and sexuality, and hopefully lead into deeper political shifts. We believe deeply in our work, our process, and our politic. We’ve gained strength from Audre Lorde, Paul Robeson, Eli Clare, Marlon Riggs, Otto Rene Castillo, Millee Hill, so many teachers. We want to magnify our message and engage a greater audience with a claim of beauty and justice for all people; we’ve decided to visually document the process and event and make a film about Sins Invalid. This is an incredible opportunity, of course a whole other layer of work, and at the end of the Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne day we expect it to be more than worth the effort. Because we have stories to tell and a movement to build. Lateef McLeod Excerpts from Living with Joey Sins Invalid 2007 “Just swallow” / You say to me / And I really do try / Cuz I be wearing tight fits / Like Rocawear jeans, big Ekco shirts, Gap hoodies /And when I am really GQ in a tailor made suit / And drool does not go with a tailor made suit / You know I try to look suave 24 7/ So there shouldn’t be a problem with me swallowing, right? / Well I have to remember to swallow / Every minute / Every hour / Every day / That means when I roll down the street / Swallow / Whenever I talk to someone / Swallow/ When I exercise/ Swallow/ When I go to school / Swallow/ Cuz I don’t want anyone to see me drool, especially you/ You always say that it makes me look gross/ And It is not my attention to gross you out/ So I try to swallow like a mad man/ I / (swallow)/ Try and/ (swallow)/ Consciously do something /(swallow)/ That everyone else/ (swallow)/ Does unconsciously/ (swallow)/ And you still/ (swallow)/ Can’t understand /(swallow)/ Why/ (swallow)/ Can’t I / (swallow)/ Learn to swallow/ (swallow)/ All the time / (swallow)/ It is like /(swallow)/ To toss you a tennis ball/ (swallow)/ Telling you/ (swallow)/ To throw it / (swallow)/ In the air and catch it/ (swallow)/ Every 15 seconds/ (swallow)/ And yell at you/ (swallow)/ When you drop the ball Swallow/ Just swallow/ Come on and swallow/ You know you want to. Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne Maria R. Palacios Excerpts from My Sexy Disability Sins Invalid 2007 My disability is sexy. Sexy like Incan sunsets that paint oceans and skies and awaken the moon in your eyes when you're with me. My disability is sexy. Sexy like the uneven curves of South American mountains; sexy like rose petals and red lips; fields of eucalyptus and pine, dreams of a derailed spine and the smell of sex between my poems. I am sexy. Sexy like coffee and books; cream and sugar to taste. Go ahead and turn my page. Read me. My words are dragonflies and shooting stars, the ridges of my scars and the grand canyon of my cleavage. My disability is beautiful and sweet. I'm sweet like arroz con leche, and flan, sweet like ripe watermelons, like the scent of mint. I am cinnamon and sin. I am my own Ave Maria; Catholic girl gone bad, 21st century Frida Kahlo. I paint my sexiness with words. Sins Invalid: An Unshamed Claim to Beauty In the Face of Invisibility Patty Berne Sins Invalid recognizes that we will be liberated as whole beings – as disabled/as queer/as brown/as black/as genderqueer/as female or male bodied – as we are far greater whole than partitioned. We recognize that our allies emerge from many communities and that demographic identity alone does not determine one’s commitment to liberation. Sins Invalid is social and economic justice for all people with disabilities – in lockdowns, in shelters, on the streets, visibly disabled, invisibly disabled, sensory minority, environmentally injured, psychiatric survivors – moving beyond individual legal rights to collective human rights. Our stories, imbedded in analysis, offer paths from identity politics to unity amongst all oppressed people, laying a foundation for a collective claim of liberation and beauty. Disabling Sex: Notes for a Crip Theory of Sexuality Robert McRuer GLQ: A Journal of Lesbian and Gay Studies, Volume 17, Number 1, 2010, pp. 107-117 (Article) Published by Duke University Press For additional information about this article http://muse.jhu.edu/journals/glq/summary/v017/17.1.mcruer.html Access Provided by Western Ontario, Univ of at 11/19/11 8:08PM GMT DISABLING SEX Notes for a Crip Theory of Sexuality Robert McRuer The time has come to think about disability. Of course, “Thinking Disability” was not, on the surface at least, what Gayle Rubin had in mind when she penned the famous opening lines of her 1984 essay “Thinking Sex: Notes for a Radical Theory of the Politics of Sexuality.”1 And, even as I perform a crip appropriation of those lines, I am aware that, for many, sex and disability at times seem not so much intersectional as incongruous: “What exactly do you do?” is about as frequent a question for disabled people, in relation to sex, as it historically has been for many queers. The motivation behind the question, however, has usually been different. Although stereotypes of the oversexed disabled person engaged in unspeakable acts do exist, disabled people are more commonly positioned as asexual — incapable of or uninterested in sex. Speaking to such expectations, the disability activist Anne Finger wrote more than a decade ago, in an assertion now well known in the disability rights movement, “Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier to talk about and formulate strategies for changing discrimination in employment, education, and housing than it is to talk about our exclusion from sexuality and reproduction.”2 But what if disability were sexy? And what if disabled people were under- stood to be both subjects and objects of a multiplicity of erotic desires and prac- tices, both within and outside the parameters of heteronormative sexuality?3 With such attitudes and questions in the background, I want to play with the title of this brief essay — “Disabling Sex” — stretching it to signify in a couple of different ways. I do that partly by linking “Thinking Sex” to another text from the same year that it has, without a doubt, never been linked to before. Deborah A. Stone’s 1984 book The Disabled State is largely a history of varied welfare state policies (from Britain, Germany, and the United States).4 It is chock- full of facts and statis- GLQ 17:1 DOI 10.1215/10642684-2010-021 © 2010 by Duke University Press 108 GLQ: A JOURNAL OF LESBIAN AND GAY STUDIES tics. It mainly examines the push for restriction or expansion of various programs, and it is not particularly optimistic (given how consistently those programs col- lapse or fail). It is often very dry, even if, I argue, it contains some stunning argu- ments that the interdisciplinary field of disability studies, or any field, might still attend to. Hence one thing I am doing with my title, “Disabling Sex,” is bringing the disabled state to bear on thinking sex. And this essay attempts to make the most of the potential incongruity — if it is not entirely unthinkable that a lover might say “what’s that juicy opening line from Rubin’s ‘Thinking Sex?’ ” it is a bit harder to imagine “mmm, talk dirty to me, read me a few lines on the emergence of SSDI and worker’s compensation from Stone’s Disabled State.” Cripping Sex Before staging a quick, promiscuous encounter between the two 1984 texts, how- ever, I should emphasize that Rubin’s famous article is, in fact, already satu- rated with disability in at least three ways. First, as Abby L. Wilkerson has sug- gested, Rubin’s “charmed circle of sex” marks an able- bodied/disabled divide, even according to Rubin’s own terms, since the location she identifies as “the outer limits” is where many crips end up.5 Here, for instance, are some of Rubin’s own terms: unnatural, nonprocreative, commercial, in groups, casual, cross- generational, with manufactured objects. Wilkerson goes on to consider “Her- maphrodites With Attitude . . . men with breasts, ‘chicks with dicks,’ anyone who is HIV- positive or schizophrenic or uses a wheelchair” and demonstrates that the project of thinking about particular bodies and practices populating the “outer limits” could be infinitely extended.6 To add to Wilkerson’s reflections on sexual- ized practices outside the charmed circle (and some of these are outer limits even for many inside disability communities): devoteeism; fetishizing of the accoutre- ments of deafness (or, for that matter, deaf wannabes); self- demand amputation; barebacking; hospital scenes (whether Bob Flanagan’s very public ones or the ones staged by any ordinary person who wants to get off in a hospital gown during a hospital stay); potentially surveilled sex between people with cognitive disabili- ties in group homes; sex surrogacy (more about that later); or (to specify some of Rubin’s “manufactured objects”) sex involving crutches, oxygen masks, or pros- thetic body parts. Recognizing his own new position outside the “charmed circle,” one contributor to the Lammy Award – winning anthology Queer Crips takes pride and pleasure in his location there, noting that he was a pretty average straight guy until his accident, after which he begins using a chair, thinks in expansive ways about what he might do with his body, becomes gay, and is open to just about DISABLING SEX: NOTES FOR A CRIP THEORY OF SEXUALITY 109 anything kinky.7 Jump to the center of Rubin’s charmed circle, conversely, and you have what Wilkerson calls “normate sex,” which — following Erving Goffman — is probably only possible for one or two people; Goffman identifies this imagined normate as “a young, married, white, urban, northern, heterosexual Protestant father of college education, fully employed, of good complexion, weight and height, and a recent record in sports.”8 Second, the “sex panics” Rubin details are invariably about disability somehow. The disturbance, disorder, and danger that Michel Foucault talks about in his lectures on the emergence of the abnormal individual are specifically posi- tioned as threats to “public hygiene” and health, and certainly the “increasingly decomposed, ravaged, skeletal, and diaphanous physiognomy of the exhausted young masturbator” plays a key role in the story he has to tell, as masturbation is etiologically connected to everything from blindness to insanity.9 And, of course, even as Rubin was writing in the mid- 1980s, we were learning that “now, no one is safe” (to quote the famous Life magazine cover): queers, addicts, and sex work- ers out of control would infect everyone (and essentially kill them, but of course first comes significant disability).10 Rubin was both aware of what was coming in relation to AIDS and savvy enough to link the coming panic to earlier historical moments that were likewise simultaneously about both panic over sex and horror at what might happen to the body. In her discussion of AIDS, she writes, “A cen- tury ago, attempts to control syphilis led to the passage of the Contagious Diseases Acts in England. The Acts were based on erroneous medical theories and did nothing to halt the spread of the disease. But they did make life miserable for the hundreds of women who were incarcerated, subjected to forcible vaginal examina- tion, and stigmatized for life as prostitutes.”11 Third, Rubin’s “concept of benign sexual variation” only really works if we actually populate and extend it with bodies — bodies that are non- able- bodied, or rather bodies (and minds) that are simply off the grid of the historical able- bodied/ disabled binary (normate sex may be founded on compulsory able- bodiedness, but that seems to me the first thing that goes out the window when we theorize and put into practice benign sexual variation). This point is implicit in what Rubin initially says about the concept — “variation is a fundamental property of all life, from the simplest biological organisms to the most complex human social formations” — and explicit in a range of queer bodily and sexual practices over the past few decades, from the ways that various lesbian feminist communities (including attendees at the 1982 Barnard conference that generated Rubin’s essay) worked to value, include, or eroticize a range of nonnormative bodies (think, for instance, of Audre Lorde’s imagined army of one- breasted women) to gay male 110 GLQ: A JOURNAL OF LESBIAN AND GAY STUDIES attempts to have promiscuity in an epidemic, insisting that all of us are living with HIV and figuring out what kinds of pleasures might be shaped by taking that fact into account.12 In these varied queer contexts, “disabling sex” signifies processes that are much more challenging, disruptive, resistant, and even, well, sexy.13 Around 1984 So what might any of this have to do with Stone’s Disabled State? Rubin’s project in “Thinking Sex” involved, at least partly, linking emergent forms of sexual hier- archization to the consolidation of industrial capitalism and paralleling resistance to that hierarchization to struggles around and against the bourgeois mode of pro- duction. Stone, as well, was concerned with how newly configured capitalist states were sorting bodies and behaviors into dominant and subordinated categories. At the same time that Rubin was insisting that “like the capitalist organization of labor and its distributions of rewards and powers, the modern sexual system has been the object of political struggle since it emerged and as it has evolved,” Stone too was reflecting on distributions of rewards and powers and on how structures of inequality rigidified in and through that distribution.14 The trajectory of Stone’s analysis, however, is slightly different from Rubin’s. Stone is certainly concerned with the subordination of disabled people and with the injustices that attend the disabled state. Yet she approaches these questions through a textured consideration of how modern states have in effect utilized disability. Stone examines what she calls “the distributive dilemma” in modernity and places the social construction of disability at the absolute cen- ter of the political struggle to define a given society: in modernity, according to Stone, “we ask [disability] to resolve the issue of distributive justice.”15 A breath- taking pronouncement, really, and a task that Stone acknowledges disability is certainly not up to, not least given the contradictory (and unjust) capitalist context from which this demand emerges. Capitalism first establishes a system where we are “free” to sell our labor power and not particularly free to do anything else and then has to manage those subjects who cannot or will not participate in that compulsory organization of labor. Two distributive systems, one work- based and one need- based, of necessity arise, and Stone grapples with the wide range of issues generated by these conditions: first, the various rationales that emerge to locate people in one category or the other; second, the “validating devices” that emerge to accompany those rationales, determining “objectively” which system, work- or need- based, should be operative for a given person (the very fraught and incoherent notion of a “clinical concept of disability” — that is, a disabled state DISABLING SEX: NOTES FOR A CRIP THEORY OF SEXUALITY 111 that can be observed and noted by authorities — is invented for this purpose); and, finally and perhaps most impossibly, the ideological maneuvering that kicks into gear — capitalist societies must somehow “maintain the dominance,” Stone argues, of the primary, work- based distributive system, even if and as that system is really quite onerous to most people.16 “Disability,” as a putatively measurable social construction, is supposed to resolve all this. Which is where one of Stone’s other major contributions comes in, a con- tribution that is as simple and stunning as her pronouncement that disability is called on to resolve the question of distributive justice in modernity. Of necessity, given the state of affairs Stone describes, in The Disabled State (and the disabled state), disability emerges discursively as a privileged identity, which is why there is so much anxiety and suspicion around the disabled “category” and who gets to qualify for it. I find this 1984 insight incredible for many reasons, not least that twenty- five years later, if you surveyed the vast majority of disability studies 101 syllabi (including my own), stigma and exclusion would likely be the focus of a large portion of the introductory material. Like the deviants and perverts outside Rubin’s charmed circle, disabled people are often positioned in disability studies as stigmatized (and of course Goffman himself links sexuality and disability, and his Stigma often shows up on one of the very first days of the imagined courses I just evoked — indeed, selections from Stigma are in fact the only pre- 1970 read- ings included in The Disability Studies Reader).17 I am certainly not arguing against understanding disabled people as stig- matized in contemporary societies, and neither is Stone: the “privileging” that she theorizes is itself, after all, clearly a form of subordination and stigmatization dependent on what Paul K. Longmore terms “ceremonies of social degradation.”18 The privilege of belonging to the disabled category Stone describes is rooted in stigma because the need- based system has already been positioned ideologically by the modern state as inferior to the work- based system (or, put differently, has been invented by the modern state to vouchsafe the superiority of the work- based system). I am, however, considering how understanding or overemphasizing stigma as isolation or social exclusion may obscure Stone’s quite nuanced arguments about privilege. I do not think it wholly suffices, especially in our own histori- cal moment, to account for Stone’s thesis by saying that disability is stigmatized socially and culturally and “privileged” only in relation to the institutions invested in measuring disability to resolve the problem of distributive justice. That particu- lar distinction between where disability is privileged and where it is stigmatized is true, to a large extent, but does not exhaust her points — or rather, potentially dilutes them and thereby makes it possible to avoid some more difficult or interest- 112 GLQ: A JOURNAL OF LESBIAN AND GAY STUDIES ing questions. In 1984, when it was (according to his campaign advertisements) “morning again” in Ronald Reagan’s America, one could argue — taking seriously Stone’s linkage of disability and privilege — that Stone facilitates a critique of an emergent neoliberalism and attends to the contradictions generated by the neces- sary simultaneity of exclusion and incorporation (from, but also into, the nation and the state) in ways that queer studies will not fully get around to theorizing until A Queer Mother for the Nation, Terrorist Assemblages, The Twilight of Equal- ity, the homonormativity issue of the Radical History Review, and — indeed — The Straight State.19 There is perhaps some of this going on in Rubin’s “Thinking Sex,” but its explicit focus on the persecution and oppression of nonnormative sexuality (a focus that was, at the time, of course, absolutely crucial) is much more obvious than emergent, neoliberal incorporations. Cripping the State For disability studies, even as the field sustains a focus on stigma and exclusion, it is important to keep in view Stone’s oft- forgotten points about the centrality of privilege and incorporation. For queer studies, it is important to attend to how a theory of uneven biopolitical incorporation — the incorporation of some bodies (but not others) into the state — has been part of disability studies for as long as we have had Rubin’s notes for a radical theory of the politics of sexuality. Queer studies regularly demonstrates, at this point if not in 1984, how both the state and the cultural imagination can deploy sex and sexuality to mask exploitation or oppression in other locations. We are, in other words, used to “thinking sex” in these ways. My intent in conclusion is to push us toward similar ways of “thinking sex and disability” together. I attempt to exemplify thinking sex and disability in our moment via a brief concluding story of sex surrogacy and the Netherlands (and of course it’s much easier to tell the story of sex surrogacy via the Netherlands than it is via the United States — or most other places, for that matter). “Sex surrogacy,” where a sex worker either works directly with a disabled person or facilitates that person’s sexual interaction with a third party, is a very contested term. I use it here simply to tell this particular story, and I recognize that the language for the processes I discuss is currently in flux.20 In 2001 a man named Hennie van den Wittenboer won a seven- year legal fight to get help from the social services department in Tilburg. The Dutch Council in Tilburg agreed to pay for van den Wittenboer to have sex once a month with a sex worker. Van den Wittenboer is disabled and uses a wheelchair and — in a story DISABLING SEX: NOTES FOR A CRIP THEORY OF SEXUALITY 113 taken up by Dutch television and newspapers — reported needing less medication and feeling less stress once the state- funded sex surrogacy was in place. Initially, during his legal battle, van den Wittenboer said, “[the council] said sex wasn’t part of the primary needs of a human being.” “Now,” he said in 2001, “there is a lady coming once a month, and I feel much better.”21 Since then, the Dutch government has more consistently codified these services, paying for hetero- and homosexual sexual services for mentally and physically disabled citizens, and, according to Selina Bonnie, “people with significant impairments” have been traveling to the Netherlands “to access sex services, which have been established by the state spe- cifically for disabled people.”22 Although the legal battle prior to 2001 already suggests that the policy was not uncontroversial, it would seem that since then it has both become somewhat less so and partly, for some in the Netherlands (and elsewhere, in thought about the Netherlands), wrapped up in a national sense of who “we” are: nonplussed about sex, attentive to the health needs of “our” citi- zens, different from countries that are neither of those, and so forth. Even with the sexualized twist, this Dutch situation fits with one of Stone’s other arguments, that national attempts to resolve questions of distributive justice around and through disability get wrapped up almost immediately in national self- definition.23 At least two things are interesting to me as disability and sex come together around the state. First, I am interested in how sexualized discourses of “openness” might currently and paradoxically function normatively in the Netherlands (and elsewhere), especially in the wake of Pim Fortuyn’s rise to prominence a decade ago. Fortuyn was an openly gay politician running for parliament as a member of the right- wing, anti- immigrant Leefbaar Nederland Party, when he was assassi- nated by an animal rights activist in 2002. What came to the fore during Fortuyn’s campaign (and in some ways after the assassination as well) was how tolerance of sexual diversity and minoritized gay identities could actually be deployed to facili- tate xenophobia and Islamophobia. I am not by any means equating the stories of Pim Fortuyn and Hennie van den Wittenboer; instead, I am making a point about dangers that can potentially circulate around sexual identity or disability or sex- ual identity and disability: “yes that’s who we are as a people” or even “yes that’s who we are sexually” and “look to the fairness with which we treat our minoritized citizenry” can coexist with what Jasbir Puar has so effectively analyzed as the tar- geting of other populations for quarantine and death. Puar calls the “securitization and valorization” of certain queer subjects in the contemporary moment “homona- tionalism” and contends that such securitization is intimately connected to how other subjects (what she calls “terrorist corporealities”) are marked as excessive and essentially targeted for death or elimination.24 114 GLQ: A JOURNAL OF LESBIAN AND GAY STUDIES Partly thanks to Puar’s important study, we are starting to get used to mak- ing these points in queer studies but not so much, I would say, in disability studies, even if Stone’s arguments authorized us to do so, at a time when a nascent queer studies really was not. A crip theory of sexuality, then, would insist on thinking seriously about van den Wittenboer’s rights and pleasures while being wary of how those might get discursively positioned by and around the state. It would, additionally, to use van den Wittenboer’s own words, want the sensation of “feeling much better” (in all its resonances) to be autonomous from one’s citizen- status (van den Wittenboer seems to have simply evoked the “needs of a human being” that, in his deployment, did not seem to be a category particularly tied to citizen- status). Van den Wittenboer did not necessarily position this as queer or crip theory on the ground, but there is no reason not to. Second, and this may be why we still have such trouble in disability stud- ies with this kind of analysis around privileged identities, obviously the potential use of disability and sex to shore up who “we” are can and will coexist with plenty of “panic” (to invoke Rubin again), plenty of residual or even dominant discourses that still position disability and desire at odds or, put differently, disability as undesirable: debates in the Netherlands about physician- assisted suicide and, for some, a certain common sense that of course severe disability is cause enough for a state- sponsored exit, coexisted and coexist with the more emergent discourses I have been tracing.25 So, to end by repeating one of the questions I identified at the beginning: what if disability were sexy? Of course it already is: crip cultures are as hot and sexy, fierce and happening as queer cultures at their best (and these cultures obvi- ously overlap already and should overlap more). But a crip theory of sexuality is simultaneously hip to how its sexiness might get used, or hip to how disability has already been used in so many problematic ways by the modern state. The sexy queer crip performer Greg Walloch can lead me to a conclusion here. In the 2001 performance video Fuck the Disabled, Walloch speaks of perusing bookstore shelves and coming across a Louise Hay book that identifies cerebral palsy as “brought to this earth to heal the family with one sweeping gesture of love.” After a pause and deadpan look up at his audience, Walloch continues rapidly, “brought to the earth with one sweeping gesture of love . . . you know, I don’t really want that job!”26 A crip theory of sexuality, thinking and rethinking sex and seeking to feel much better, would push for other sensations, other connections, but would always be attuned to the impossible work that disability has been asked to perform — to resolve questions of distributive justice (with one sweeping gesture of love?) while DISABLING SEX: NOTES FOR A CRIP THEORY OF SEXUALITY 115 masking the contradictions inherent in the system that generated those questions of justice in the first place. Notes 1. Gayle Rubin, “Thinking Sex: Notes for a Radical Theory of the Politics of Sexuality,” in Pleasure and Danger: Exploring Female Sexuality, ed. Carole S. Vance (Boston: Routledge and Kegan Paul, 1984), 267 – 319. 2. Anne Finger, “Forbidden Fruit,” New Internationalist no. 233 (1992): 9. 3. I am taking these two questions, as well as the notion of incongruity that I am con- sidering in these opening paragraphs, from Anna Mollow’s and my introduction to the anthology Sex and Disability (Durham, NC: Duke University Press, forthcoming). 4. Deborah A. Stone, The Disabled State (Philadelphia: Temple University Press, 1984). 5. Abby L. Wilkerson, “Normate Sex and Its Discontents: Intersex, Transgender, and Sexually Based Disability,” in McRuer and Mollow, Sex and Disability. 6. Despite Wilkerson’s generative use of Rubin’s “charmed circle” and “outer limits,” she is elsewhere critical of how Rubin’s theoretical move separates sexual hierar- chies from other social hierarchies. See Abby L. Wilkerson, “Disability, Sex Radical- ism, and Political Agency,” National Women’s Studies Association Journal 14 (2002): 33 – 57. 7. Alex Sendham, “Beginner’s Sex,” in Queer Crips: Disabled Gay Men and Their Stories, ed. Bob Guter and John R. Killacky (New York: Harrington Park, 2004), 191 – 97. 8. Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Simon and Schuster, 1963), 128. 9. Michel Foucault, Abnormal: Lectures at the Collège de France, 1974 – 1975, trans. Graham Burchell (New York: Picador, 2003), 235. 10. “Now No One Is Safe from AIDS,” Life Magazine, July 1985. 11. Rubin, “Thinking Sex,” 299. 12. Rubin, “Thinking Sex,” 283. 13. See Audre Lorde, The Cancer Journals (San Francisco: Aunt Lute, 1980); and Doug- las Crimp, “How to Have Promiscuity in an Epidemic,” in AIDS: Cultural Analysis/ Cultural Activism, ed. Douglas Crimp (Cambridge, MA: MIT Press, 1987), 237 – 71. 14. Rubin, “Thinking Sex,” 309. 15. Stone, Disabled State, 13. 16. Stone, Disabled State, 21, 90. 17. Lennard J. Davis, ed., The Disability Studies Reader (New York: Routledge, 1997). 18. Paul K. Longmore, Why I Burned My Book and Other Essays on Disability (Philadel- phia: Temple University Press, 2003), 240. 116 GLQ: A JOURNAL OF LESBIAN AND GAY STUDIES 19. Licia Fiol- Matta, A Queer Mother for the Nation: The State and Gabriela Mistral (Minneapolis: University of Minnesota Press, 2002); Lisa Duggan, The Twilight of Equality? Neoliberalism, Cultural Politics, and the Attack on Democracy (Boston: Beacon, 2003); Jasbir K. Puar, Terrorist Assemblages: Homonationalism in Queer Times (Durham, NC: Duke University Press, 2007); Kevin P. Murphy, Jason Ruiz, and David Serlin, eds., “Queer Futures: The Homonormativity Issue,” special issue, Radical History Review (2008); Margot Canaday, The Straight State: Sexuality and Citizenship in Twentieth- Century America (Princeton: Princeton University Press, 2009). 20. For a now- classic first- person account of his own experiences with sex surrogates in San Francisco in the 1980s, see Mark O’Brien, “On Seeing a Sex Surrogate,” Sun, May 1990, www.pacificnews.org/marko/sex- surrogate.html. 21. Keith Chalkley, “What a Pleasure,” Dispatchonline, November 10, 2001, www .dispatch.co.za/2001/11/10/foreign/BWORLD.HTM. The story was reported in the Dutch newspaper Brabants Dagbland and then circulated globally in English via “breaking news” Internet sites, largely of two sorts: blogs, sites, and chat forums focused on disability access issues and sensationalizing sites highlighting news of the (supposedly) humorous or bizarre. 22. Selina Bonnie, “Disabled People, Disability, and Sexuality,” in Disabling Barriers, Enabling Environments, 2nd ed., ed. John Swain et al. (London: Sage, 2004), 129. In the Netherlands, these issues actually predate van den Wittenboer’s legal battle, and an organization called Selective Human Relations has offered subsidized sex- ual assistance for twenty years. See Mutsuko Murakami, “The Right to Sex,” South China Morning Post, September 11, 2004, 15; Helen McNutt, “Hidden Pleasures,” Guardian, October 13, 2004, 2; Barbara Smit, “State to Pay for Sex Visits to Disabled Man,” Irish Times, August 26, 1992, 7. 23. This national self- definition is a discursive formation that then travels beyond the borders of the Netherlands. The cultural work of this discursive formation does not necessarily translate into more sexual freedom on the ground, and, indeed, accord- ing to Gert Hekma, the widely accepted idea of Dutch sexual openness has actually inhibited queer radicalism at the turn of the twenty- first century. See Gert Hekma, “Queer: The Dutch Case,” GLQ 10 (2004): 276 – 80. 24. Puar, Terrorist Assemblages, 3. Puar herself discusses the Fortuyn story and considers briefly some of the ways in which the Netherlands exemplifies the larger processes she is theorizing (19 – 21). 25. In the United States in 2009, as I was completing this essay, it seems to me that the processes I am sketching remain operative, even though I have chosen in the body of my text to “think disability” (or sex and disability) via another state. The United States remains a location where disabled people’s lives are overwhelmingly positioned as undesirable and often, through the corporate (and extremely punitive) insurance- DISABLING SEX: NOTES FOR A CRIP THEORY OF SEXUALITY 117 based health care system, as dispensable. As health care debates raged in the United States during 2009, however (largely over proposals that would clearly not benefit the vast majority of people living with impairment or illness in the United States), certain key disabled figures were brought forward discursively to shore up who Americans as a people are or should be — most notably, Trig Palin, the son of former Alaska gover- nor Sarah Palin, who was used in some of his mother’s speeches as a disabled Ameri- can who would have to stand before “death panels” deciding whether he would live or die if the insurance- based system were to be reformed. Others, sometimes speaking for themselves and sometimes used as examples by family members, occupied similar positions at so- called town hall meetings around the country. My argument is that this particular biopolitical use of disability identity is relatively new and fundamentally antidisabled. 26. Greg Walloch, Fuck the Disabled, dir. Eli Kabillio, New York: Mad Dog Films, 2001. The Body Is Not An Apology Sonya Renee Taylor The body is not an apology. Let it not be forget-me-not fixed to mattress when night threatens to leave the room empty as the belly of a crow. The body is not an apology. Present it not as disassembled rifle when he has yet to prove himself more than common intruder. The body is not an apology. Let it not be common as oil, ash, or toilet. Let it not be small as gravel, stain, or teeth. Let it not be mountain when it is sand. Let it not be ocean when it is grass. Let it not be shaken, flattened, or razed in contrition. The body is not an apology. Do not give it as confession, communion. Do not ask for it to be pardoned as criminal. The body is not a crime; is not a gun. The body is not a spill to be contained. It is not a lost set of keys, a wrong number dialed. It is not the orange burst of blood to shame white dresses. The body is not an apology. It is not the unintended granules of bone beneath wheel. The body is not kill. It is not unkempt car. It is not a forgotten appointment. Do not speak it vulgar. The body is not soiled. Is not filth to be forgiven. The body is not an apology. It is not father’s back hand; is not mother’s dinner late again wrecked jaw howl. It is not the drunken sorcery of contorting steel round tree. It is not calamity. The body is not a math test. The body is not a wrong answer. The body is not a failed class. You are not failing. The body is not a cavity; is not hole to be filled, to be yanked out. It is not a broken thing to be mended, be tossed. The body is not prison; is not sentence to be served. It is not pavement; is not prayer. The body is not an apology. Do not give the body as gift. Only receive it as such. The body is not to be prayed for; is to be prayed to. So, for the evermore tortile tenth grade nose, Hallelujah. For the shower song throat that crackles like a grandfather’s Victrola, Hallelujah. For the spine that never healed; for the lambent heart that didn’t either, Hallelujah. For the sloping pulp of back, hip, belly, Hosanna. For the errant hairs that rove the face like a pack displaced of wolves. Hosanna, for the parts we have endeavored to excise. Blessed be the cancer, the palsy, the womb that opens like a trap door. Praise the body in its black jack magic, even in this. For the razor wire mouth. For the sweet god ribbon within it. Praise. For the mistake that never was. Praise. For the bend, twist, fall, and rise again, fall and rise again. For the raising like an obstinate Christ. For the salvation of a body that bends like a baptismal bowl. For those who will worship at the lip of this sanctuary. Praise the body for the body is not an apology. The body is deity. The body is God. The body is God; the only righteous love that will never need to repent. You Get Proud by Practicing by Laura Hershey If you are not proud For who you are, for what you say, for how you look; If every time you stop To think of yourself, you do not see yourself glowing With golden light; do not, therefore, give up on yourself. You can get proud. You do not need A better body, a purer spirit, or a Ph.D. To be proud. You do not need A lot of money, a handsome boyfriend, or a nice car. You do not need To be able to walk, or see, or hear, Or use big, complicated words, Or do any of those things that you just can’t do To be proud. A caseworker Cannot make you proud, Or a doctor. You only need more practice. You get proud by practicing. There are many many ways to get proud. You can try riding a horse, or skiing on one leg, Or playing guitar, And do well or not so well, And be glad you tried Either way. You can show Something you’ve made To someone you respect And be happy with it no matter What they say. You can say What you think, though you know Other people do not think the same way, and you can keep saying it, even if they tell you You are crazy. You can add your voice All night to the voices Of a hundred and fifty others In a circle Around a jailhouse Where your brothers and sisters are being held For blocking buses with no lifts, Or you can be one of the ones Inside the jailhouse, Knowing of the circle outside. You can speak your love To a friend Without fear. You can find someone who will listen to you Without judging you or doubting you or being Afraid of you And let you hear yourself perhaps For the very first time. These are all ways Of getting proud. None of them Are easy, but all of them Are possible. You can do all of these things, Or just one of them again and again. You get proud By practicing. Power makes you proud, and power Comes in many fine forms Supple and rich as butterfly wings. It is music when you practice opening your mouth And liking what you hear Because it is the sound of your own True voice. It is sunlight When you practice seeing Strength and beauty in everyone, Including yourself. It is dance when you practice knowing That what you do And the way you do it Is the right way for you And cannot be called wrong. All these hold More power than weapons or money Or lies. All these practices bring power, and power Makes you proud. You get proud By practicing. Remember, you weren’t the one Who made you ashamed, But you are the one Who can make you proud. Just practice, Practice until you get proud, and once you are proud, Keep practicing so you won’t forget. You get proud By practicing. - - - - . • Freaks and Queers I : Naming Handicap[Jtd. A disabled person sits on the street, begging for her next meal. This is how we survived in Europe and the United States as cities grew big and the economy moved from a land base to an industrial base. We were beggars, caps in hand. This is how some of us still survive. Seattle, 1989: a white man sits on the side- walk. leaning against an iron fence. He smells of whiskey and urine, his body wrapped in tom cloth. His legs are toothpick-thin, knees bent inward. Beside him leans a set of crutches. A Styrofoam cup, half full of coins, sits on the sidewalk in front of him. Puget Sound stretches out behind him, water sparkling in the sun. Tour- ists bustle by. He strains his head up, trying to catch their eyes. Cap in hand. Handicapped. 1 Disabled. The car stalled in the left lane of traffic is disabled. Or alternatively, the broad stairs curving into a public building dis- able the man in a wheelchair. That word used as a noun (the dis- abled or people with disabilities), an adjective (disabled people), a verb (the accident disabled her): in all its forms it means "unable," but where does our inability lie? Are our bodies like stalled cars? Or does disability live in the social and physical environment, in the stairs that have no accompanying ramp? I think about lan- guage. I often call nondisabled people able-bodied, or, when I'm feeling confrontational, temporarily able-bodied. But if I call myself disabled in order to describe how the ableist world treats me as a person with cerebral palsy, then shouldn't I call nondisabled peo- ple enabled? That word locates the condition of being nondisabled, 67 ee ELI CLARE EXILE AND P R IDE not in the nondisabled body, but in the world's reaction to that walking like a monkey. My mother often talked about my birth de- body. This is not a semantic game. fa:t. Words bruise a body more than rocks and Cripple. The woman who walks with a limp, the kid who uses Differently abled, physical{y challmged. Nondisabled people, braces, the man with gnarly hands hear the word cripple every day wanting to rushion us from the cruelty of language, invented these in a hostile nondisabled world. At the same time, we in the disabil- euphemisms. In explaining her choice of the word cripple, Nancy ity rights movement create crip culture, tell aip jokes, identify a Mairs writes: sensibility we call crip humor. Nancy Mairs writes: D!fferent!Y abled ... partakes of the same semantic hopefulness I am a aipple. I choose this word to name me .... People--crip- that transformed COWltries from undePeloped to underdevtlaped, pled or not- wince at the word aipple, as they do not at handi- then to las developol, and finally deveJqping nations. People have capf'td or disabled. Perhaps I want them to wince. I want them to continued to starve in those rountries during the shift. Some re- see me as a tough customer, one to whom the alities do not obey the dictates of language.' have not been kind, but who can face the brutal truth of her ex- Differently abled is simply easier to say, easier to think about than I istence squarely. As a aipple, swagger.' disabled or handicapped or crippled. Gimp. Slang meaning "to limp." Gimp comes from the word Freak. I hold fast to my dictionary, but the definitions slip gammy, which hobos in the 18th century used among themselves and slide, tell half stories. I have to stop here. Freak forces me to to describe dangerous or unwelcoming places. Hobo to hobo, pass- think about naming. ing on the road: "Don't go there. It's gammy." Insider language, Handicapped. disabled, cripple, gimp, retard, d!ffermtly abled. I Wl- hobo solidarity. And now a few centuries later, one disabled person derstand my ielationship to each of these words. I scoff at handi- greets another, "Hey, gimp. How ya Handicapped. disabled, cripple. gimp, retard, .differently abled, freak. tions of normality and al:mormality, do not? I want to unravel I need to stop here. Frmlc I don't understand It me: I freak, to pull on the thread called history. don't quite like it, can't imagine using it as some poliuaz.ed dis- abled people do. Yet I want freak to be as easy as the words queer and cripple. II : Freak Show Queer, like cripple, is an ironic and serious word I use to de- scribe myself and others in my communities. Queer speaks The history of freakdom ext.ends far back into western civilization. about who I am, my life as a dyke, my relationship to the domJ- The court jester, the pet dwarf, the exhibition of humans in Ren- nant culture. Because of when I came out-more than a decade af- aissance England, the myths of giants, minotaurs, and monsters all ter the Stonewall Re.bellion-and where-into a highly politicized point to this long history, which reached a pinnacle in the mid- easy I urban dyke community-queer has always been for me. l 800s to mid-l 900s. During that century, freaks were big enter- adore its defiant external edge, its comfortable internal truth. Queer tainment and big business. Freak shows populated the United belongs to me. So does cripple for many of the St.ates, and people flocked to the circus, the carnival, the store- and cripple are cousins: words to shock, words to infuse with pnde front dime museum. They came to gawk at freaks, savages, and and self-love, words to resist intemaliz.ed hatred, words to help geeks. They came to be educated and entertained, titillated and re- forge a politics. They have been by many pulsed. They came to have their ideas of normal and abnormal, su- gay/lesbiarv'bVtrans people, cripple, or cnp, by many disabled people. perior and inferior, their sense of self, confirmed and strengthened. Frmlc is another story. Unlike queer and crip, it has not been And gawk they did. But who were they gawking at? This is where I 4 widely embraced in my communities. For me freak want to start. scary edge; it takes queer and cripple one step too far; it doesn t feel What.ever these paying customers-rubes in circus lingo-be- good or liberating. . . . . lieved, they were not staring at freaks of nature. Rather, the freak This profusion of words and their vanous relauonships to show tells the story of an elaborate and calculated social construc- marginalized people and politiciz.ed communities fascinates me. tion that utilized performance and fabrication as well as deeply Which words get embraced,·which don't, and why? Queer but not held cultural beliefs. At the center of this construction is the show- pmJert. Cripple, and sometimes freak, but not retard. of man, who, using costuming, staging, elaborate fictional histories, the ugly and demeaning words used to batter and bait marginal- marketing, and choreography, turned people from four groups into ized peoples-racist, sexist, classist, ableist, homophobic slurs-per- freaks. First, disabled people, both white people and people of vert and retard nearly burst with hurt and bitterness, anger and color, became Armless Wonders, Frog Men, Giants, Midgets, Pin- reminders of self-hatred.s I doubt the community and the heads, Camel Girls, Wild Men of Borneo, and the like. Second, disability community respectively will ever claim those as nondisabled people of rolor-bought, persuaded, forced, and kid- our own. In contrast crip, queer, and freak have come to sit on a napped to the United St.ates from colonized countries all over the cusp. For some of us, they carry too much grief. For others, they world-became Cannibals and Savages. Third, nondisabled people can be chosen with glee and pride. Qu«r and crip are mine but not of color from the United St.ates became Natives from the Exotic freak, and I want to know why. What is it What Wilds. And fourth, nondisabled people with visible differences- bitterness, what pain, does it hold that cnppk, with its connota- bearded women, fat women, very thin men, people covered with tions of pitiful, broken bodies, and queer, with its sweeping defini- tattoos, intersexed people-became wondrous and horrifying ex- 7Z ELI CLAR£: E XILE AND PRIDE 73 hi.bits. Cultural critic and disability theorist Rosemarie Garland ceive it's really true, when hands are lacking, toes will do," or more 'Thomson argues that the differences among these sometimes over- piously, "Indolence and ease are the rust of the mind." In her auto- lapping of people melded together. biography, which she hawked along with her photos and trinkets, Perhaps the freak. show's most remadcable effect was to eradicate Ann presented herself as a respectable, religious lady. In one photo, distinctions among a wide variety of bodies. ronfiating them W\- she sits beside her husband and son, all of them -wearing formal der a single sign of the freak-as-other.... [A]ll the bodily charac- Victorian clothing. teristics that seemed different or threatening to the dominant William Johnson, a developmentally disabled Ahican-Ameri- order merged into a kind of motley chorus line of physical differ- can man from New Jersey, became the "What Is It?" the "missing ence on the freak show st.age.... [A] nondisabled person of color link." the "Monkey Man." He wore hairy ape-like costumes, billed as the "Fiji Cannibal'" was to dis- equivalent shaved his head bald except for a little tuft at the very top, and abled. Euro-American called the posed in front of a jungle backdrop. The showmen at P.T. Bar- In the eyes of the rube, the freak show probably WdS one big melt- num's American Museum in New York City described William as ing pot of differentness and At the same time, the differ- "a most singular animal, which though it has many of the features ences among the various of people who "M>rked as freaks and characteristics of both the human and the brute, is not, appar- remain important to undemanding the freak show in its entirety. ently, either, but in appearance, a mixture of both-the connecting But whatever the differences, all four held one thing in link between humanity and brute creation."7 Although the way in common: nature did not make them into freaks. The freak show which he came to the freak show is unknown-Barnum may have carefully ronstructing an exaggerated divide between "normal" did. bought him at a young age and coerced him into performing at and Other, sustained in tum by rubes willing to pay good money first-William died in his 80s at home, a well-liked and happy to stare. man, referred to, by his oo-workers, as the "dean of freaks." Hiriam and Barney Davis performed wildly for their audi- Charles Stratton, a working-class short person-dwaif in ences, snapping, snarling, talking gibberish from stage. The hand- medicaJ terminology-from Connecticut worked the freak show as bill sold in ronjunction with their display described in lengthy, General Tom Thumb. He played the role of a European aristocrat, imagined detail "What We Know About Waino and Plutano, the complete with resplendent suits, a miniature carriage pulled by po- Wild Men of Borneo ... In reality Hiriam and Barney were white, nies, and meetings with rich and famous people around the world, developmentally disabled brothers from an immigrant farm family becoming in the process a rich man himself. When Charles and who lived in Ohio. Their mother, after many offers which she Mercy Lavinia Warren Bump, a short woman who also worked the fused, finally sold them to a persistent showman for a Wc1Sh pan freak show, fell in love and decided to get married, P.T. Barnum full of gold and silver. Off-stage Hiriam and Barney were quiet, un- set out, in an extravagant example of showmanship, to tum their asswning men. In one photo they stand flanking their manager wedding into a huge media spectacle. He WdS successful; 2,000 Hanford Lyman. Their hair falls past their shouldeis; they sport people attended the event, and The New York Times ran a full- neatly trimmed goatees; Hiriam folds his hands in front of him; page story, headlined "Loving Lilliputians." Charles and Mercy Barney rocks his hands on his they look mildly and directly played their roles and used the publicity to springboard another into the camera European tour. Ann 1bompson, a white woman born without arms, posed as Two Congolese men and thirteen Congolese women, wearing "The Annless Wonder." From stage she signed and sold photo- large, heavy jewehy in their pierced lips, were bought by circus grapm as souvenirs, writing with her toes sayings like, "So you per- agent Ludwig Bergonnier and shipped from Ahica to the United 74 ELI CLARE EXILE ANO PR I DE 75 States. The poster advertising their display in the Ringling Broth- tive European tour. Others, like the Hilton sisters, conjoined twins ers Circus freak show proclaimed them "Genuine Monster- who worked in the mid-l 900s, became their own managers, or, Mouthed Ubangi Savages World's Most Weird Living Humans like Bump and her Lilliputian Opera Company, formed their own from Africa's Darkest Depths." The women wore only gunny sack performing groups, which were employed by dime museums and skirts; the men, dressed in loincloths, carried spears. Ubangi was a traveling vaudeville companies. In other words, white, nondisabled name randomly pulled off a map of Africa and had no relationship freak show owners and managers didn't only exploit "their freaks." to where these women and men had actually lived. The two groups also colluded together to dupe the audience, to The Davis brothers, Thompson, Johnson, Stratton, the Afri- make a buck off the rube's gullibility. In the subculture of the can men and women did not slide into the world as infant freaks. freak show, rubes became the exploited victims-explicitly lied to, They were made freaks, socially constructed for the purposes of charged outrageous sums for mere trinkets, pickpocketed, or entertainment and profit. This construction depended not only merely given incorrect change at the ticket COllllter. upon the showmanship of the "freaks" and their managers. It also Charles, there is a picture ofyou, taken during a visit with the Queen capitalized on the eagerness of rubes to gawk at freaks and on the of England. You have a miniature sword drawn and are staging a fight ableism and racism which made the transition from disabled per- with a poodl.e. Your wife, Mercy, writes of embarrassment and outrage. Of son to freak, nondisabled person of color to freak. even possible. presidential candidate Stephen Douglas, she remembers: "He expressed Without this pair of oppressive ideologies, the attendant fear and great pleasure at again seeing me, and as I stood before him he hatred of disabled people and people of color, and the desire to took my hand and, drawing me toward him, stooped to kiss me. I create an Other against whom one could gauge her/his normality, instinctively drew back. feeling my face suffused with blushes. It who could ever believe for even one farcical moment that William seemed impossible to make people at first understand that I was Johnson was Darwin's missing link; Barney Davis, a wild man not a child." 8 Didyou share her embarrassment and outrage as you faced from Borneo; Ann Thompson, an armless wonder? that poodle? Or did you and Barnum laugh long and hard as you concocted Ann, in that plwto ofyou with your husband and son, you sit on a your stunts? rng decorated with crosses, a rug you crocheted. The slwwmen made a big deal ofyour dexteriry. But did you learn to crochet as a freak slww stunt? Or did you, like so ma'!)' women ofyour time, sew and knit, embroider and crochet, simp!J' as a necessify and a pastime? The questions about exploitation are complicated; simple answers Although ableism and racism enter the picture here, the peo- collapse easily. Robert Bogdan in his history Freak Show excerpts a ple who worked the freak show did not live as simple victims. letter he received from freak show manager Ward Hall: "I exhib- Many of the "freaks" themselves-particularly those who were not ited freaks and exploited them for years. Now you are going to ex- developmentally disabled or brought to the United States from Af- ploit them. The difference between authors and the news media, rica, Asia, South and Central America, the Pacific islands, and the and the freak show operators is that we paid them." Bogdan com- Caribbean-controlled their own acts and displays, working along- ments, "[Hall's] use of the word exploit was playful. He does not side their managers to shape profitable shows. Many of them think he exploited them. He had a business relationship, complete with contract. with his troupe of human oddities. His livelihood made decent livings; some, like Charles Stratton and Mercy Lav- depended on them, as theirs did on him. He had no pretensions of inia Warren Bump, even became wealthy. When P.T. Barnum lost doing good ...." 9 Although Bogdan chronicles the social construc- all his money in a bad business deal, Stratton came out of semi-re- tion of freaks in amazing detail and refuses to situate the people tirement and rescued him by agreeing to go on yet another lucra- EXILE ANO PRIDE 77 76 ELI CLARE who worl 12 every photDgraph they sold, nothing else; whereas their manager, United StateS as well as people from colonized countries-were Ludwig Bergonnier, made $1,500 a week renting "his display" to sold into the business needs to be examined. The question, why the Ringling Brothers Circus. 1n contrast, Charles Stratton became were they sold, has to be asked. Certainly, in many cases, the an- rich, owning a horse farm and a yacht. Still others, like William swer must revolve around fear and hatred, undiluted ableism and Johnson, found community among the people who worked the racism, imperialism and capitalism. But consider Hiriam and freak show. Barney. They were sold for a wash pan full of gold and silver. You who ended up in the history books named only "Ubangi Sav- What did that wash pan mean to their mother, Catherine Davis? ages, " no names ofyour own: night after night, you paraded around the My sources suggest, although don't explicitly state, that the Dav- cirrus tent, air sticl;y against your bare skin, burlap prickly against your ises were a poor immigrant farm family. Did that gold and silver covered skin. Did you come to hate &rgonni.er? mean economic survival to Catherine Davis? What happened to What did the people who worked as freaks think of their working-class and poor disabled people who needed care but jobs, their lives? I want to hear their stories, but like the stories of whose families could not provide it? The options did not abound: other marginaliz.ed people, they were most often never told, but the almshouse, the street, the freak show. Rather than moralize rather eat.en up, thrown away, lost in the daily grind of survival. and condemn, I want freak show historians to examine the whole Some of the "freaks" didn't read or write, due to particular context, including racism, ableism, and classism, and begin to build disabilities or to the materiaVsocial circumstances of their lives. Or, a complex understanding of exploitation. Like prostitutes, the peo- as in the case of many of the people brought here from other coun- ple who worked as freaks-especially those who had some control tries, they didn't speak English and/or didn't come from cultures over their own display-grasped an exploitative situation in an ex- that passed stories through the written word. A few "freaks" did ploitative world and, as often as possible, turned it to their benefit. write autobiographies, but these pamphlets or books were mostly At the same time, the people who had the least power in the part of the whole production, sold alongside the handbills and freak show-people from coloniz.ed countries and developmentally photos. These stories ended up being part of the showmen's hyper- disabled people-underscore just how exploitative this institution bole. So, in order to reconstruct, celebrate, and understand the could be. Many of the people of color brought to the U nited States lives of the people who worked the freak show, I rely on histDrians, died bleak deaths of pneumonia, pleurisy, or tuberculosis. They like Robert Bogdan, who have sifted through thousands of hand- died on the long ship rides. They died wanting desperately to re- bills, posters, newspaper articles, and promotional garbage used to turn to their home countries. They did not want to be part of the create The Armless Wonder, The Wild Men of Borneo. In large freak show; they never came to like the freak show; they didn't be- part, I will never truly know their lives but can only use my imagi· come showmen and ·women in their own right. Instead, the circus, nation, political sensibilities, and intuition to fill the holes between the dime museum, the vaudeville act, the natural history museum the outrageous headlines in The New York Times and other newspa- were sites of one more atrocity in a long line of imperialist atroci- pers and the outrageous handbills sold at the carnival. ties. Likewise, developmentally disabled people most frequently The histDrians who moralii.e about the freak show frustrate had no control over their displays. Some lacked the cognitive abili- me. These academics will take a detail, like the fact that Hiriam ties to say yes or no to their own exhibition; others were simply and Barney Davis's mother sold her sons to a showman, and use it trapped by unscrupulous managers, who typically were also their to demonstrate just how despicable showmen could be and how legal guardians. Although some developmentally disabled people oppressive the freak show was. The disturbing fact that many of had what appear tD be good and happy relationships with their the people who worked as freaks-disabled people from the 80 ELI CLARE EXILE AND PRIDE 81 managers, the dual role of showman and legal guardian is a set-up "barbaric" people of color. They exaggerated the specific cognitive for exploitation. abilitieefmabilities of "Maximo" and "Bartola." In short, these The display of both groups of people capitaliz.ed on the the- white, nondisabled men totally intertwined race and disability, ra- ory of the time that nondisabled people of color and developmen- cism and ableism, to create "their freaks." tally disabled people embodied the missing link between primates In one set of photos, "Maximo" and "Bartola" are stripped and humans. Eminent zoologist Baron Georges Cuvier wrote in naked, posed against a blank wall I imagine scientists measuring the early 1800s: the diameter of their skulls, the length of their legs, taking notes The negro rare is confined to the south of Mount Atlas. Its char- about their skin color and speech patterns, then snapping these acteristics are, black complexion, woolly hair, compressed cra- pictures to add to their documentation. A second set of photos has niwn, and flattish nose. In the prominence of the lower part of them sitting against a stone wall. "Maximo" wears striped pants the face, and the thickness of the lips, it manifestly approaches and a shirt with a big sun on its front. "Bartola's" dress has a zig- the monkey tribe." zag design woven through it. Their hair is teased into big, wild af- Much the same was believed about developmentally disabled peo- ros. "Maximo" looks dazedly beyond the camera; "Bartola" looks ple. Following the same train of thought as Cuvier, German scien- down. I imagine showmen carefully arranging their props, calculat- tist Ca.rJ Vogt wrote in 1867 even more explicitly about ing their profits. There are no complex or ambiguous answers here evolutionary theory: to the questions of power, control, and exploitation. Microcephalics [people with a type of developmental disability medically known as microcephalia] must necessarily represent an earlier developmental state of the hwnan being ... ; they re- veal to us one of the milestones which the hwnan passed by dur- During the freak show's heyday, today's dominant model of dis- ing the course of his historical evolution. H ability-the medical model-did not yet exist. This model defines The racism and ableism imbedded in these theories intersect disability as a personal problem, curable and/or treatable by the jntensely in the exhibition of developmentally disabled people of medical establishment. which in turn has led to the wholesale medi- color. Consider the story of two developmentally disabled siblings calization of disabled people. As theorist Michael Oliver puts it: kidnapped as children from San Salvador. Called "Maxi.mo" and Doctors are centrally involved in the lives of disabled people "Bartola," they were declared to be from "a long-lost rare of Az- from the determination of whether a foetus is handicapped or tecs." Scientists and anthropologists studied them; showmen dis- not through to the deaths of old people from a variety of dis- played them. Both groups helped create and defend the "long-lost abling conditions. Some of these involvements are, of course, entirely appropriate, as in the diagnosis of impairment. the stabilisation of race" fabrication, anthropologists to substantiate their theories, medical condition after trawna, the treatment of illness occur- showmen to make money, each feeding off the other. 'They used a ring independent of disability, and the provision of physical re- variety of observations as their proof. They emphasized physical habilitation. But doctors are also involved in assessing driving attributes associated with being disabled by microcephalia, particu- ability, prescribing wheelchairs, determining the allocation of fi- larly short stature and a slightly sloping skull. They took note of nancial benefits, selecting educational provision and measuring "Maximo's" and "Bartola's" dark skin and thick black hair. They work capabilities and potential; in none of these cases is it irrune- made much of their subjects' language use and food preferences, diately obvious that medical training and qualifications make be citing the cultural differences between "civilized" white people and doctors the most appropriate persons to so involved." 6 2 ELI CLARE EX ILE AND PRIDE 63 In the centuries before medicalization, before the 1930s and it. Nor were freaks poster children, the mod.em-day objects of pity, '40s when disability became a pathology and the exclusive domain used to raise money on the telethon stage. Instead, the freaks of doctors and hospitals, the Christian western world had encoded flaunted, and the rubes gawked. In a culture that paired disability disability with many different meanings. Disabled people. had and curiosity, voyeurism was morally acceptable. Thus, people sinned. We lacked moral strength. We were the spawn of the devil flocked without shame or compunction to see the freaks, primed or the product of god's will. Our bodies/minds reflected events that by cultural beliefs about disability to be duped by the lies and fab- happened during our mothers' pregnancies. rications created at the freak show. At the time of the freak show, disabled people were no longer In the same way, cultural beliefs about race-notions about monsters in the minds of nondisabled people, but rather extraordi- the wild savage, the noble savage, and an eagerness to see both- nary creatures, not entirely human, about whom everyone-"pro- made the exhibition of nondisabled people of color at the freak fessional" people and the general public alike-was curious. show and other venues extraordinarily profitable. Take for example Doctors routinely robbed the graves of "giants" in order to meas- the display of Filipino people at the 1904 World's Fair in St. ure their skeletons and place them in museums. Scientists Louis. The exhibit was billed as the "Igorot Village," complete with scribed disabled people in terms like "female, belonging to the mostly naked women and men dancing wildly and eating dog 16 monocephalic, ileadelphic class of monsters by fusion," language stew. One among many "anthropological" displays at the Fair, the that came from the "science" of teratology, the centuries-old study Village, as a near perfect representation of the wild savage, at- of monsters. Anthropologists studied disabled people with an eye tracted by far the most Fair-goers and media attention. Christo- toward evolutionary theory. Rubes paid good money to gawk. pher Vaughan in his article "Ogling Igorots" writes: Hiriam, did you ever swp mid-peifonnance, swp up there on your The "civilized" Visayans, despite offering hourly theatrical and dime musewn platjonn and stare back, turningyour mild and direct gaze back orchestral performances-concluding with "The Star Spangled on the rubes, gawking at the gawkm, entertained f?y your own audience? Banner," SW1g in English by the entire village-went relatively At the same time, there were signs of the move toward medi- ignored in comparison with the lgorots .. .. Gate receipts at the calization. Many people who worked as freaks were examirled by Igorot concession nearly quadrupled the total for the Visayans ·doctors. Often handbills included the testimony of a doctor who and tripled that of the colorful Moros." verified the "authenticity" of the "freak" and sometimes explruned It was all too easy for white people to gawk at people of color, us- the causes of his or her "freakishness." Tellingly doctors performed ing the image of dog-eating savages from far-away "uncivilized" is- this role, rat.her than anthropologists, priests, or philosophers. But lands both to create and strengthen their sense of white identity for the in which the freak show flourished, disability was and white superiority. not yet inextricably linked to pathology, and without pathology, During this same period of time, imperialism had intensified pity and tragedy did not shadow disability to the same extent they to a fevered pitch, both abroad in places like the Philippines and at do today. home as white people continued to subjugate and destroy Native Consequently, the freak show fed upon neither of these, rely- peoples and cultures. By the time of the 1904 World's Fair, the ing instead on voyeurism. The "armless wonder" played the fiddle United States had won the Spanish-American War and gained on stage; the "giant" lived as royalty; the "savage" roared and control over the Philippines. In explaining his decision to solidify screamed. These performances didn't create freaks as pitiful or the United States' colonial rule there, President McKinley referred tragic but as curious, odd, surprising, horrifying, wondrous. Freaks to "our civilizing mission." What better way to justify that mission, were not supercrips. They did not ovm:ome disability; they.flaunted than to display Filipino people as uncivilized savages? EXILE AND PRIDE e !5 84 ELI CLl.RE This interplay between politics and the freak show also oc- invented an island in the Gulf of Mexico from which they suppos- curred on the national level. For instance, the missing-link evolu- edly came and, as they toured, didn't let on to their ruse. Fusco and Gomez-Pena expected their audiences to immediately recog- tionary theory, used so profitably by showmen, supported slavery nize the parody. Instead, as dorumented in a video shot at the before Emancipation and the suppression of civil rights after. But scene of several performances, 19 many people apparently took the the freak show didn't only use this ideology. The display of Black and white developmentally disabled people and nondisabled peo- ruse seriously. Some people expressed shock and disgust. Others, ple of color as the "missing link" and the "What Is It?" actually particularly white people, expounded on their theories about why Fusco paced back and forth, why Gomez-Pena grunted, staring out bolstered the theory. The scientists and politicians could point to at the audience. Still others paid 50 cents for Polaroid pictures of William Johnson and say, "See, here is living proof. Look at this the "savages" posed at their bars. Whether these people were seri- creature." In doing so, they were reaffirming the less-than-human ous, whether they all left the performance sites still duped, whether status of people of color and rationalizing much of their social and they truly believed their own theories, is not dear. But at least to political policy. Simply put, the freak show both fed upon and some extent, it appears that "'The Couple in the Cage" easily repli- gave fuel to imperialism, domestic racist politics, and the cultural cated the relationship between rube and freak. suggesting that the beliefs about wild savages and white superiority. old images of race cultivated by the freak show, rather than being dead, live astonishingly close to the surface. The scorn for the freak show also assumes that the bad old The decline of the freak show in the early decades of the 20th cen- days were really awful, but I'm not so sure that they were in actual- tury coincided with the medicalization of disability. As pity, trag- ity all that bad for some of the "freaks." Llsten to the stories edy, and medical diagnosis/treatment entered the picture, the Robert Waldow and Violet and Daisy Hilton tell. All of them lived novelty and mystery of disability dissipated. Explicit during the freak show's decline as medicalization took hold stopped being socially acceptable except when controlled by the Robert Waldow, a tall man born in the 1920s, resisted be- medical establishment. And later in the 20th century, as colonized coming a giant, a freak. He wanted to be a lawyer, but unable to people of color fought back successfully against their colonizers get the necessary education, he turned to shoe advertising. And and as legal segregation in the United States ended and civil rights later, after being pursued for years by showmen, he worked for the started to take hold, the exhibition of people of color also became circus, earning a large salary and refusing to participate in the hype unacceptable. Along with these changes came a scorn for the freak which would have made him appear taller than he really was. At show as an oppressive institution from the bad old days. But I'm the same time, doctors also pursued Robert, reporting him to be not so sure the freak show is all that dead. the tallest man in the world-this being medical hype, not circus Consider Coco Fusco and Guillermo Gomez-Pena's perform- hype. They refused to leave him alone. In 1936 a Dr. Charles ance piece "The Couple in the Cage," created in 1992 as part of Humberd showed up uninvited at the Waldow's home. Robert re- 18 the "500 Years of Resistance" celebration. Fusco and Gomez- _fused a physical exam and wouldn't cooperate with the interview. Pefia costumed themselves in everything from fake leopard skins Humberd left disgruntled and the next year, unbeknownst to the _!_O mirrored sunglasses and posed as natives from a newly discov- W aldows, published an article in the journal of the American Medical ered tribe. They toured natural history museums, art galleries, and Association called, "Giantism: A Case Study," in which Robert be- street comers in a cage, performing the script of exotic and noble came a case study of a "preacromegalic giant." Because of the arti- savages. In the long tradition of showmen and -women, they even cle, which cast him as a surly brute, Robert and his family were 86 ELI CLARI!: EXILE ANO PRIDE 87 deluged with unwelcome attention from the media, the general In the '30s when Franklin Roosevelt's work programs em- public, and the medical establishment. In the biography The Gentle- ployed many people, the federal government explicitly deemed dis- man Giant, Waldow's father reveals that Roben was far more dis- abled people unable to work, stamping their work applications turbed and angered by his dealings with doctors than with "P.H. Physically handicapped. Substandard. Unemployable,'' send- showmen. ing them home with small monthly checks. The League of the Conjoined twins Daisy and Violet Hihon echo this reaction. Physically Handicapped protested in Washington, D.C., ocrupy- These women worked the circus, carriival, and vaudeville circuits ing the Work Progress Administration's offices, chanting, "We from the time they could talk. Early on, their abusive guardians want jobs, not tin cups."21 ln this climate, as freak show jobs disap- controlled and managed the show. They v.iould lock Daisy and peared, many disabled people faced a world devoid of employment Violet away for days at a time to ensure that no one but rubes pay- opportunities. ing good money could see them. Later, after a court order freed the Listen for instance to Otis Jordan, a disabled African-Ameri- sisters, they performed on their own. The cover of one publicity can man who works the Sutton Sideshow, one of the only remain- pamphlet has Daisy playing the saxophone, Violet, the piano, and ing freak shows in the country, as "Otis the Frog Man." In 1984, both of them smiling cheerfully at the viewer. Much of their lives his exhibit was banned from the New York State Fair when some- they spent fighting poverty as the freak show's popularity waned. one lodged a complaint about the indignities of displaying disabled And yet in their autobiography, they write about "loath[ing] the people. Otis responded, "Hell, what does she [the woman who very tone of the medical man's voice" and fearing that their guardi- made the complaint] want from me-to be on welfare?"22 Working ans would "stop showing us on stage and let the doctors have us- as a freak may have been a lousy job, but nonetheless it was a job. to punch and pinch and take our picture always. "20 Try telling Robert Waldow and the Hilton sisters how oppressive the freak show was, how enlightened the medical model of disability is, how III: Pride bad the bad old days were. Try telling Coco Fusco and Guillermo Gomez-Pena that the freak show is truly dead. Now with this history in hand, can I explain why the word freak unsettles me, why I have not embraced this piece of disability his- tory, this story of disabled people who earned their livings by The end of the freak show meant the end of a particular kind of flaunting their disabilities, this heritage of resistance, an in-your- employment for the people who had worked as freaks._For nondis- face resistance similar to "We're here, we're queer, get used to it"? abled people of color from the United States, employment by the Why doesn't the word freak connect me easily and directly to sub- 1930s didn't hinge heavily on the freak show, and so its decline version? The answer I think lies in the transition from freak show didn't have a huge impact. And for people from Africa, Asia, South to doctor's office, from curiosity to pity, from entertainment to pa- and Central America, the Pacific islands, and the Caribbean, the thology. The end of the freak show didn't mean the end of our dis- decline meant only that white people had one less reason to come play or the end of voyeurism. W e simply traded one kind of kidnap and buy people away from their homes. But for disabled freak.dam for another. people the end of the freak show almost guaranteed unemploy- Take for instance public stripping, the medical practice of ment, disability often being codified into law as the inability to work. stripping disabled children to their underwear and examining them in front of large groups of doctors, medical students, physical 88 EL I CLAl'E EX I LE ANO PR I CE therapists, and rehabilitation specialists. They have the My life story. Pay me. You think I'm being exploited? You pay back and forth They squeez.e her muscles. They watch his gait. to go to a baseball game, don't you?" muscle tension, footfall, back CUIVature. They take notes and talk Today's freakdom happens all the time, and we're not even paid among themselves about what surgeries and therapies they might for it. In fact disabled people have, as a group, an astounding un- recommend Since the invention of video cameras, they tape the employment rate of 71 percent. 26 When we do "M>rk, we make 64 sessions. They justify public stripping by saying it's a cents to a nondisabled workers' dollar.27 for students, a way for a team of professionals to pool knowledge. We don't control today's freakdom, unlike the earlier freak This isn't a medical practice of decades gone by. As recently as show freakdom, which sometimes we did. The presentation of dis- 1996, disability activist Lisa Blumberg reported in The .Disabili9' ability today has been shaped entirely by the medical est.al; R.ag that "specialty" clinics (cerebral palsy clinics, spina and the charity industry. That is, until the disability ics, muscular dystrophy clinics, etc.) at a variety of teaching hospi- nghts movement came along. This civil rights and liberation move- tals regularly schedule group-rather than private-eXaminations ment established Centers for Independent Living all over the coun- 24 and conduct surgery screenings in hospital amphitheaters. Excuse try, working to redefine the concept of independence. These me, but isn't public stripping exactly what scientists and centers offer support and advocacy, helping folks find ac.cessible pologists did to "Maximo" and "Bartola" a cenwry ago? Tell me, and. attendants, funding for adaptive equipment what is the difference between the freak show and public and )Ob training. Independent living advocates measure inde- ping? Which is more degrading? Which takes more control away pendence not by how many tasks one can do without assistance, from disabled people? Which lets a large group of nondisabled but by how much control a disabled person has over hWher life people gawk unabashedly for free? and by the quality of that life. Today's freakdom happens in hospitals and doctors' offices. . The movement founded direct-action, rabble-rousing groups, It happens during telethons as people fork CYVer money of like AOAPT28 and Not Dead Yet, 29 that disrupt nursing home in- the tragic stories milked until they're dry. It happens m dustry conventions, blockade non-ac.cessible public transportation, . homes where severely disabled people are oft.en forced to live oa:upy the offices of politicians committed to the status quo, and against their wills. It happens on street comers and at stops, on protest .outside courtrooms. Disabled people have a history of di- playgrounds and in restaurants. It happens when nondisabled peo- rcct-act1on protest, beginning with the League of the Physically ple stare, uying to be covert, smacking their children to teach them Handicapped's WPA protest. In 1977, disabled people occupied how to pretend not to stare. A character in the play The the HEW (Department of Health, Education, and Welfare) offices Hidden Histmy of People with Disabilities juxtaposes the voyeurism of in San Francisco for 25 days, successfully pressuring politicians the freak show with the voyeurism of everyday life, saying: into signing Section 504 of the Rehabilitation Act, the first civil 30 We're always on display. You think if I walked down the street rights legislation in the United States for disabled people. And 1 of your stinking little nowhere town people wouldn t stare at today, ADAPT is rabble-rousing hard, both on the streets and in me? Damn right they would, and tell their neighbors and Congress, to pass a national personal attendant services bill. and talk about me over dinners and picnics and PTA meetings. 1:1e is creating a strong, politicized disability cul- Well, if they want to do that, they're going to to pay me ture with a growing body of literature, performances, hwnor, the- for that privilege. You want to stare at me, fine, 1t s 25 cents, ory: and political savvy. We have theater, poetry, anthologies, cash on the barrel. You want a picture, that's another quarter. ficuon, magazines, art exhibits, film festivals, analysis and oiticism written by disabled folks, conferences, and a fledgling academic EL.I CL.A RE EXILE ANO PRIDE QI discipline called Disability Studies. At the same time, there are dis- you think I look like an ape. Here let me accentuate that look"- abled people working to into mainstream culture, work- can certainly teach us a thing or two about identity and pride. ing to become models photographed for the big-name fashion Pride is not an inessential thing. Without pride, disabled peo- magazines, actors in soap operas and sitcoms and Hollywood mov- ple are much more likely to accept unquestioningly the daily material ies, recognized artists and writers and journalists. conditions of ableism: unemployment, poverty, segregated and The movement lobbied hard for laws to end separate and un- education, years spent locked up in nursing homes, equal education, for comprehensive civil rights The perpetrated by caregivers, lack of access. Without pride, l 990 Americans with Disabilities Act (ADA) did not spnng from mdiVIdual and collective resistance to Qppression becomes nearly George Bush's head, fully formed and shaped by his But pride is no easy thing to come by. Disability understanding of disability issues. Rather lawyers schooled m dis- has been soaked m shame, dressed in silence, rooted in isolation. ability rights and disabled White House appointees with a stake in In 1969 in the backwoods of Oregon, I entered the "regular" disability politics crafted the bill, disability lobbyists educated and first grade after a long struggle with the school officials who wanted lobbied hard, and grassroots disability activists mobilized to get the me in "special education," a battle won only because I had scored ADA passed. In short the disability rights movement, founded in well on an IQ test, my father knew the principal, and the first the same storm of social change as women's liberation and gay/les- grade teacher, who lived upriver from us, liked my family and ad- bian liberation, riding on the energy and framework created by the vocated for me. I became the first disabled kid to be mainstreamed Black liberation movement, came along and is undoing internal- the years later, the first laws requiring quality pub- ized oppression, making community, creating a culture and sense lic for disabled kids, the Education for AU Handicapped of identity, and organizing to change the status quo. Children Act and Section 504, were signed. By the mid-l 980s, These forces are taking freakdom back. declaring that dis- mainstreaming wasn't a rare occurrence, even in small, rural abled people will be at the center of defining disability, defining schools, but in 1969 I was a first. our lives, defining who we are and who we want to be. We are de- No one-neither my family nor my teachers-knew how to claring that d0ctors and their pathology, rubes and their money, acknowledge and meet my particuJar disability-related needs while anthropologists and their theories, gawkers and their so-called letting me live a rather ordinary, rough-and-tumble childhood. nocuous intentions, bullies and their violence, showmen and their They simply had no experience with a smart, gimpy six-year-old hype, Jerry Lewis and his telethon, government bureaucrats and who learned to read quickly but had a hard time with the physical their rules will no longer define us. To arrive as a self- bear witness to rather than incorporate into our pride? How does our own, it bec.omes less a bludgeon. We take a weapon away from witness differ from pride? What do they share in common? the homophobes. Queer names a hugely diverse group of people. It brings dykes, faggots, bi's, and trannies in all our variation and dif- ference and overlap under one roof; it is a coalition-building word. For some people the word works; for others it doesn't. The sa,me To unravel the relationship of the word feaJc to pride and witness, things can be said of the word crip in relationship to the disability let me step back for a moment, move to the word queer, to the community. All of this seems simple enough and is typically as far gay/lesbiarv'bVtrans community. I think it no accident that I've as the thinking about naming goes. paired the words queer and freak in this examination of language, But I want to push the thinking further. How do people who pride, and resistance. The ways in which queer people and disabled have lived in shame and isolation create community and pride? people experience oppression follow, to a certain extent, parallel How do we even find each other? Let me turn here from the realm paths. Queer identity has been pathologiz.ed and medica,lized. Un- of words to the realm of symbol. The pink triangle has been used til 1973, homosexuality was considered a psychiatric disorder. Tcr since the mid-'70s by VWb't people as a symbol to identify our- day transsexuality and transgenderism, under the names of gender selves to each other and to the world. The Nazis originally used dysphoria and gender identity disorder, are considered psychiatric c.onditions. Queerness is all too frequently intertwined with shame, this symbol during the Holocaust to mark non-Jewish gay men on the streets and in the concentration camps just as the yellow star silence, and isolation. Queer people, particularly VWb't youth, often 31 live rut off from other queer folk. alone in o ur schools, neighbor- was used to mark Jews. hoods, and families of origin. Queer people deal with gawking all The pink triangle functions now as a symbol of identity, wit- the time: when we hold hands in public, defy gender boundaries ness, and pride in queer communities. As a sign of identity, it c.om- and norms, insist on recognition for our relationships and families. municates both covertly and overtly. That pink triangle graphic lntersexed people, transsexuals, and people who don't c.onform to worn on a button or stuck on a bumper may not have much gender norms-such as bearded women who grow their beards- meaning to many straight people-particularly those not con- . have their own history at the freak show. Queer people have been nected to or aware of queer culture-but among Vglb-'t people, es- told for centuries by church, state, and science that our bodies are pecially in urban centers, it readily signals queer identity to other abnormal. These parallel paths don't mean.that queer folk and dis- queer people. In this fashion, the pink triangle functions as an in- abled folk experience the same oppression; at many points the sider's language, a language attempting to include a marginalized paths diverge. For example the gawkers often pity crips and beat people while excluding the oppressor. It is also used more overtly up queers (although some crips do get beat up, and some queers, to speak of identity, sometimes inc.orporated into educational pitied). But the places of similarity, the fact that both peoples have work about the historical oppression of gay people, other times been considered freaks of nature, push at the question of pride. into activist work. As a symbol of witness, it remembers and me- How have VWb't people created pride? What are the words and morializ.es the gay men who died in the Holocaust. It keeps the the symbols of that pride? memory of Nazi atrocities alive in our c.onsciousness. It serves as a Qµeer has accomplished a number of things for the VWb't in- reminder of the extremity of queer oppression. And as a symbol of dividuals and communities who have embraced it. The word pride, the pink triangle neutralizes and transforms hatred, follow- names a reality. Yes, we are different; we are outsiders; we do not ing the same political path as the words queer, cripple, nigger. It is fit the dominant culture's definition of normal. Queer celebrates worn by out and proud queers. These functions-marking iden- that differentness rather than hiding or denying it. By making queer tity, expressing pride, insisting upon witness-go hand in hand, all Q8 EL.I CL.ARE EX IL E AND PRIDE three important for any marginalized community. In our search for with a determination to be visible. Witness demands primary ad- liberation, we can sometimes tum the language and symbols most herence to and respect for history. Pride uses history as one of its closely reflecting our oppression into powerful expressions of pride. many tools. Sometimes witness and pride work in concen, other And yet that equation sometimes betrays history, blurring the dif. times not. We cannot afford to confuse, merge, blur the two. ference between witness and pride. As a symbol of pride, the pink triangle has frequently been divorced from its history. In one ahistorical explanation of this symbol, the owner of a Minneapolis gay bookstore tells his cus- And now I can come back to freak. The disabled people who use tomers that pink triangles represent white gay merv'lesbians and the word freak, are they, like many queer people, betraying witness black triangles-used by the Nazis to mark social deviants, includ- in their creation of pride? A disabled person who names herself ing, it is assumed, lesbians, during the Holocaust-represent black pridefully a freak draws on the history of freakdom and the freak gay merv'lesbians. Divorced from its history, the pink triangle be- show to strengthen her sense of resistance, to name a truth, to bol- comes a consumerist symbol, used to sell t-shirts and keychains; it ster her identity. But in using history this way, is she remembering becomes a He. It is not and never will be the rainbow flag, which only Ann Thompson, Violet Hilton, and the developmentally Gilbert Baker designed in 1978 specifically as a queer symbol full disabled girl who, while on display. took to swearing at the rubes? What about "Maximo" and "Bartola"? What about the nondis- of unabashed pride and affirmation. To use the rainbow flag is to abled people of color who died at the freak show, desolate for their connect oneself to queer identity and pride as they are currently homelands? When we name ourselves freaks, are we forgetting constructed. To use the pink triangle honestly is to connect oneself the part of history that calls for witness, not pride? Are we blurring to history. the two? I listen again to my Jewish dyke friends who don't under- How does the history of the freak show interact with the his- stand the pink triangle as a symbol of pride. They ask me, "Why tory of today's freakdom? How do our personal histories enter our reclaim this symbol that has meant genocide? My family would collective history? If I had not intemaliz.ed nondisabled people's never wear yellow stars joyfully as symbols of their pride, perhaps gawking to the point that I no longer notice it, if instead I felt pissy in witness and rage, but never in pride. Why then the pink trian- and uppity about it, would I be more able to imagine flaunting my gle? How can it possibly be a symbol of pride?" Behind their CP? Would I be more willing to take the resistance of the people words, I see the shadows of a collective history, the living remind- who worked as freaks as my own? Would I gladly use the word to ers of numbers tattooed on forearms, the stories passed down of acknowledge a simple truth: that the world considers me a freak? family and culture destroyed. What about people disabled as adults, people who make it Their questions and disbelief ask me to unwind the act of relatively smoothly through the first rounds of denial, grief, and re- witness from the expression of pride. Both witness and pride hab and maybe find the disability rights movement and disability strengthen identity, foster resistance, cultivate subversion. People community? They don't have a long personal history of freakdom. who have lived in shame and isolation need all the pride we can Hopefully shame, silence, and isolation haven't been buried deeply m11.;:tPr nnt tn mirP 011r.-;pJvPs in :l narrowlv defined identitv POii- .i.. ..: ...... \A/k,,t minht th.-ir rPbtinn.:hin tn thP hi<:tnrv nf thP 100 EL I CLA"lt E XILE AND PRIDE I 0 I probably differ from mine. What about developmentally disabled pieces of history, which kinds of humor, which words? Let me re· people? What mean to them? Where is the pride in a tum once more to my question, "Why queer and cripple but not legacy of being owned by showmen who exhibited you as non-hu- freak?" This time I won't expect an answer. Instead. I want to take man? Again their relationships to freak show history are bound to the image of Barney and Hiriam Davis's mild and direct gaze into differ from mine. the freak show camera and practice that stare when nondi.sabled I think of the disabled people I know who call themselves people and straight people gawk at inc. I want to place RDbert freaks. Many of them are performers, helping to build disability Waldow's resistanre ;md Mercy Bump's outrage my culture and/or working to break into mainstream culture. In using lived knowledge that freakdom continues today. I want to re- the namefreak, they claim freak show history both as disabled peo- member that whether I call myselffreak or not, I share much with ple and as showmen and -women. They shape pride out of a cen- Ann Thompson and William Johnson, Otis Jordan and Daisy Hil- turies-old legacy of performing on the street corner, at the open-air ton. I want to refigure the world, insisting that anthropologists fair, in the palace and at the carnival as freak, monster, pet dwarf, never again construct lies like the ones they built around the bod- court jest.fi, clown. On the other hand, could a disabled person ies of "Maximo" and Bartola," that doctors never again publicly whose personal history included public stripping but not perform- strip disabled children. I want to sharpen my pride on what ing as easily break through today's freakdom into that earlier freak- strengthens me, my witness on what haunts me. Whatever we dom? The history that for so long has placed us on stage, in front name ourselves, however we end up shattering our self-hatred, of audiences, sometimes in subversion and resistance, other times shame, silence, and isolation, the goal is the same; to end our daily in loathing and shame, asks not only for pride, but also for witness material oppression. as our many different personal histories come tangling into our col- lective one. This same profusion of histories exists in other communities. For instance, even though I, along with an entire community of dykes, faggots, bi's, and trannies, have made queer mine, the word holds intolerable grief and bitterness for many gay men and lesbi- ans, bisexual and trans people. The effeminate boy who came out in the '50s. The dykes and queens caught in the pre-Stonewall po- lice raids. The trans people with histories that include psychiatric abuse. The folks who can pass as straight and/or normatively gen- dered and choose do so, who yearn toward true assimilation, an end to differentness. I can't presume to know what relationships each of these people have with the word queer. How do their per- sonal histories come crashing into the current, collectively defined use of qiuer? The ugly words follow no logic, calling out Essays and Speeches by Audre Lorde Notice This materia! may be protected by copyright law (Hie 17 U.S Code) San Francisco State University The Crossing Press / Freedom, CA 95019 The Crossing Press Feminist Series Uses of the Erotic: The Erotic as Power* THERE ARE MANY kinds of power, used and unused, acknowl- edged or otherwise. The erotic is a resource within each of us that lies in a deeply female and spiritual plane, firmly rooted in the power of our unexpressed or unrecognized feeling. In order to perpetuate itself, every oppression must corrupt or distort those various sources of power within the culture of the op- pressed that can provide energy for change. For women, this has meant a suppression of the erotic as a considered source of power and information within our lives. We have been taught to suspect this resource, vilified, abused, and devalued within western society. On the one hand, the superficially erotic has been encouraged as a sign of female in- feriority; on the other hand, women have been made to suffer and to feel both contemptible and suspect by virtue of its ex- istence. It is a short step from there to the false belief that only by the suppression of the erotic within our lives and consciousness can women be truly strong. But that strength is illusory, for it is fashioned within the context of male models of power. As women, we have come to distrust that power which rises from our deepest and nontational knowledge. We have been warned against it all our lives by the male world, which values • Paper delivered at the Fourth Berkshire Conference on the History of Women, Mount Holyoke College. August 25, 1978. Published as a pamphlet by Out & Out Books (available from The Crossing Press). 53 USES OF THE EROTIC 54 SISTER OUTSIDER this depth of feeling enough to keep women around in order to we can then observe which of our various life endeavors bring exercise it in the service of men, but which fears this same depth us closest to that fullness. too much to examine the possibilities of it within themselves. So The aim of each thing which we do is to make our lives and women are maintained at a distantlinferior position to be the lives of our children richer and more possible. Within the psychically milked, much the same way ants maintain colonies celebration of the erotic in all our endeavors, my work becomes of aphids to provide a life-giving substance for their masters. a conscious decision a longed-for bed which I enter gratefully But the erotic offers a well of replenishing and provocative and from which I rise up empowered. force to the woman who does not fear its revelation, nor suc- cumb to the belief that sensation is enough. Of course, women so empowered are dangerous. So we are The erotic has often been misnamed by men and used against taught to separate the erotic demand from most vital areas of women. It has been made into the confused, the trivial, the our lives other than sex. And the lack of concern for the erotic psychotic, the plasticized sensation. For this reason, we have root and satisfactions of our work is felt in our disaffection from often turned away from the exploration and consideration of so much of what we do. For instance, how often do we truly the erotic as a source of power and information, confusing it love our work even at its most difficult? with its opposite, the pornographic. But pornography is a direct The principal horror of any system which defines the good in denial of the power of the erotic, for it represents the suppres- terms of profit rather than in terms of human need, or which sion of true feeling. Pornography emphasizes sensation without defines human need to the exclusion of the psychic and emo- tional components of that need - the principal horror of such a feeling. The erotic is a measure between the beginnings of our sense of system is that it robs our work of its erotic value, its erotic power self and the chaos of our strongest feelings. It is an internal sense and life appeal and fulfillment. Such a system reduces work to a of satisfaction to which, once we have experienced it, we know travesty of necessities, a duty by which we earn bread or obli- we can aspire. For having experienced the fullness of this depth vion for ourselves and those we love. But this is tantamount to of feeling and recognizing its power, in honor and self-respect we blinding a painter and then telling her to improve her work, can require no less of ourselves. and to enjoy the act of painting. It is not only next to impossi- It is never easy to demand the most from ourselves, from our ble, it is also profoundly cruel. lives, from our work. To encourage excellence is to go beyond As women, we need to examine the ways in which our world the encouraged mediocrity of our society is to encourage ex- can be truly different. I am speaking here of the necessity for cellence. But giving in to the fear of feeling and working to reassessing the quality of all the aspects of our lives and of our capacity is a luxury only the unintentional can afford, and the work, and of how we move toward and through them. unintentional are those who do not wish to guide their own The very word erotic comes from the Greek word eros, the per- sonification of love in all its aspects - born of Chaos, and per- destinies. This internal requirement toward excellence which we learn sonifying creative power and harmony. When I speak of the from the erotic must not be misconstrued as demanding the im- erotic, then, I speak of it as an assertion of the lifeforce of possible from ourselves nor from others. Such a demand in- women; of that creative energy empowered, the knowledge and capacitates everyone in the process. For the erotic is not a ques- use of which we are now reclaiming in our language, our tion only of what we do; it is a question of how acutely and fully history, our dancing, our loving, our work, our lives. we can feel in the doing. Once we know the extent to which we There are frequent attempts to equate pornography and are capable of feeling that sense of satisfaction and completion, eroticism, two diametrically opposed uses of the sexual. Because 56 SISTER OUTSIDER of these attempts, it has become fashionable to separate the it is dancing, building a bookcase, writing a poem, examining an spiritual (psychic and emotional) from the political, to see idea. as contradictory or antithetical. "What do you mean, a poetic That self-connection shared is a measure of the joy which I revolutionary, a meditating gunrunner?" In the same way, we know myself to be capable of feeling, a reminder of my capacity have attempted to separate the spiritual and the erotic, thereby for feeling. And that deep and irreplaceable knowledge of my reducing the spiritual to a world of flattened affect, a world of capacity for joy comes to demand from all of my life that it be the ascetic who aspires to feel nothing. But nothing is farther lived within the knowledge that such satisfaction is possible, from the truth. For the ascetic position is one of the highest and does not have to be called marriage, nor god, nor an afterlife. fear, the gravest immobility. The severe abstinence of the ascetic This is one reason why the erotic is so feared, and so often becomes the ruling obsession. And it is one not of self-discipline relegated to the bedroom alone, when it is recognized at all. For but of self-abnegation. once we begin to feel deeply all the aspects of our lives, we begin The dichotomy between the spiritual and the political is also to demand from ourselves and from our life-pursuits that they false, resulting from an incomplete attention to our etotic feel in accordance with that joy which we know ourselves to be knowledge. For the bridge which connects them is formed by capable of. Our erotic knowledge empowers us, becomes a lens the erotic - the sensual - those physical, emotional, and through which we scrutinize all aspects of our existence, forcing psychic expressions of what is deepest and strongest and richest us to evaluate those aspects honestly in terms of their relative within each of us, being shared: the passions of love, in its meaning within our lives. And this is a grave responsibility, pro- deepest meanings. jected from within each of us, not to settle for the convenient, Beyond the superficial, the considered phrase, "It feels right to the shoddy, the conventionally expected, nor the merely safe. me," acknowledges the strength of the erotic into a true knowl- During World War II, we bought sealed plastic packets of edge, for what that means is the first and most powerful guiding white, uncolored margarine, with a tiny, intense pellet of yellow light toward any understanding. And understanding is a hand- coloring perched like a topaz just inside the clear skin of the bag. maiden which can only wait upon, or clarify, that knowledge, We would leave the margarine out for a while to soften, and deeply born. The erotic is the nurturer or nursemaid of all our then we would pinch the little pellet to break it inside the bag, deepest knowledge. releasing the rich yellowness into the soft pale mass of margarine. Then taking it carefully between our fingers, we The erotic functions for me in several ways, and the first is in would knead it gently back and forth, over and over, until the providing the power which comes from sharing deeply any pur- color had spread throughout the whole pound bag of marga- suit with another person. The sharing of joy, whether physical, rine, thoroughly coloring it. emotional, psychic, or intellectual, forms a bridge between the I find the erotic such a kernel within myself. When released sharers which can be the basis for understanding much of what from its intense and constrained pellet, it flows through and col- is not shared between them, and lessens the threat of their ors my life with a kind of energy that heightens and sensitizes difference. and strengthens all my experience. Another important way in which the erotic connection func- tions is the open and fearless underlining of my capacity for joy. We have been raised to fear the yes within ourselves, our deepest In the way my body stretches to music and opens into response, cravings. But, once recognized, those which do not enhance Our hearkening to its deepest rhythms, so every level upon which I future lose their power and can be altered. The fear of our sense also opens to the erotically satisfying experience, whether desires keeps them suspect and indiscriminately powerful, for to USES OF THE EROTIC 59 58 SISTER OUTSIDER suppress any truth is to give it strength beyond endurance. The the european-american tradition, this need is satisfied by certain fear that we cannot grow beyond whatever distortions we may proscribed erotic comings-together. These occasions are almost find within ourselves keeps us docile and loyal and obedient, ex- always characterized by a simultaneous looking away, a ternally defined, and leads us to accept many facets of our op- pretense of calling them something else, whether a religion, a fit, pression as women. mob violence, or even playing doctor. And this misnaming of When we live outside ourselves, and by that I mean on exter- the need and the deed give rise to that distortion which results nal directives only rather than from our internal knowledge and in pornography and obscenity - the abuse of feeling. needs, when we live away from those erotic guides from within When we look away from the importance of the erotic in the ourselves, then our lives are limited by external and alien forms, development and sustenance of our power, or when we look and we conform to the needs of a structure that is not based on away from ourselves as we satisfy our erotic needs in concert human need, let alone an individual's. But when we begin to with others, we use each other as objects of satisfaction rather live from within outward, in touch with the power of the erotic than share our joy in the satisfying, rather than make connec- within ourselves, and allowing that power to inform and il- tion with our similarities and our differences. To refuse to be luminate our actions upon the world around us, then we begin conscious of what we are feeling at any time, however comfort- to be responsible to ourselves in the deepest sense. For as we able that might seem, is to deny a large part of the experience, begin to recognize our deepest feelings, we begin to give up, of and to allow ourselves to be reduced to the pornographic, the necessity, being satisfied with suffering and self-negation, and abused, and the absurd. with the numbness which so often seems like their only alter- The erotic cannot be felt secondhand. As a Black lesbian native in our society. Our acts against oppression become in- feminist, I have a particular feeling, knowledge, and under- tegral with self, motivated and empowered from within. standing for those sisters with whom I have danced hard, In touch with the erotic, I become less willing to accept played, or even fought. This deep participation has often been powerlessness, or those other supplied states of being which are the forerunner for joint concerted actions not possible before. not native to me, such as resignation, despair, self-effacement, But this erotic charge is not easily shared by women who con- depression, self-denial. tinue to operate under an exclusively european-american male And yes, there is a hierarchy. There is a difference between tradition. I know it was not available to me when I was trying to painting a back fence and writing a poem, but only one of quan- adapt my consciousness to this mode of living and sensation. tity. And there is, for me, no difference between writing a good Only now, I find more and more women-identified women poem and moving into sunlight against the body of a woman I brave enough to risk sharing the erotic's electrical charge love. without having to look away, and without distorting the enor- This brings me to the last consideration of the erotic. To mously powerful and creative nature of that exchange. share the power of each other's feelings is different from using Recognizing the power of the erotic within our lives can give us another's feelings as we would use a kleenex. When we look the the energy to pursue genuine change within our world, rather other way from our experience, erotic or otherwise, we use than merely settling for a shift of characters in the same weary rather than share the feelings of those others who participate in drama. the experience with us. And use without consent of the used is For not only do we touch our most profoundly creative abuse. source, but we do that which is female and self-affirming in the In order to be utilized, our erotic feelings must be recognized. face of a racist, patriarchal, and anti-erotic society. The need for sharing deep feeling is a human need. But within selections from Kindling, by Aurora Levins Morales http://www.auroralevinsmorales.com/excerpts-from-kindling.html “As I do the work… bringing all my heart and intelligence and skill to the task, I am bringing richness to the common soil we cultivate, pouring my unique combination of nutrients into the ground of our future well-being… I need my resources to flow from the rim of the future, from people who are nourished by what I bring and want to nourish me back.” Please visit http://www.auroralevinsmorales.com/the-village-it-takes.html to become part of the village it takes to support Aurora’s life and work. p. 9-10, Mountain Moving Day “There is no neutral body from which our bodies deviate. Society has written deep into each strand of tissue of every living person on earth. What it writes into the heart muscles of five star generals is distinct from what it writes in the pancreatic tissue and intestinal tracts of Black single mothers in Detroit, of Mexicana migrants in Fresno, but no body stands outside the consequences of injustice and inequality..... What our bodies, my mother’s and yours and mine, require in order to thrive, is what the world requires. If there is a map to get there, it can be found in the atlas of our skin and bone and blood, in the tracks of neurotransmitters and antibodies. We need nourishment, equilibrium, water, connection, justice. When I write about cancer and exhaustion and irritable bowels in the context of the treeless slopes of my homeland, of market driven famine, of xenoestrogens and the possible extinction of bees, I am tracing that map with my fingertips, walking into the heart of the storm that shakes my body and occupies the world. As the rising temperature of the planet births bigger and more violent hurricanes from the tepid seas, I am watching the needle of my anger swing across its arc, locating meridians, looking for the magnetic pulse points of change. When I can hold the truth of my flesh as one protesting voice in a multitude, a witness and opponent to what greed has wrought, awareness becomes bearable, and I rejoice in the clarity that illness has given me.” p. 163, Drifting To Bottom “I settle into the bed of passive sex like a leaf descending to the bottom of a pond, all of me liquid, languid, slow, luminous, still. Once I was tigerish, licking, biting, pouncing, growling, tumbling, arched, riding the springy ribcages and hips of lovers I could climb on. Now I have sex as plants do, petals agape for pollen; as snails do, one sticky wet part sliding softly, infinitesimally across another. I have sex like a body of water, breath making nipples rise like the crests of waves, creeks emptying into my shimmering state of awareness through crevices, gullies, hillside torrents. Rocking against the coast, tide by tide. Now I am infinite earth, potent beyond all things and nearly motionless. Sex is a bead of sweat, dew forming on the curve of a leaf, a thigh. Sex is the quiver of grass on an almost windless day. I am a bed of clay on which your fingers drum like rain, furrowed by your tongue, penetrated by roots that grow strong because of me. I am the sea anemone, exquisitely sensitive and anchored to rock. My most delicate pink-tipped tentacles suck, clutch, cling to what touches them. I change color, rose to maroon to violet, blush, glow, burn, circle and dance in the water, wrap myself all around what comes within my one inch reach, and never lift myself up from my stony bed. I am held down by tired muscles, topped by my own fatigue, nerve endings tingling with sensations, too exhausted to move, lickable, liquid, languid, sinking into the slick, soft mud, coming down from above, drifting to bottom.” p. 165-167, Listen, Speak “1. Come. You. Yes, you. Tonight we are gathering stories, ours, yours. Each of us with our bundles of sticks, each of us with our strands of cord. The word in your pocket is what we need. The song in your heart, the callous on your heel. Come into the clearing. Bring your tinder. Together, we will strike sparks and set the night ablaze. Come out of the forest, the woodwork, the shadows to this place of freedom, quilombo, swamp town, winter camp, yucayeque, where those not meant to survive laugh and weep together, share bread from mouth to mouth, pass cups of water, break bread--- and let our living bodies speak. Come with your triggers, your losses, your scars. When something you hear, something you see, makes your wounds ache and throb, it’s only memory rising, a piece of our history. Bring it into the circle. We will hold it together. … 2. Open up. Make room. Let the circle grow. From the shadows steps a man of Tuskeegee, syphilis raging untreated through his veins, gone blind, lame and speechless while white doctors took notes, but here he speaks with a voice like a drum. At the light’s edge a girl with no face, who lived ten years locked in a room, holds the hand of an old man with no relatives, and blue numbers tattooed on his arm. Trace the lines in the maps of our bodies. They run like furrows, side by side. They move like rivers, enter each other, make tributaries and forks. Make room for the children raised on locked wards under a flickering fluorescent light, the shocked and injected, the measured and displayed, tormented, fondled, drugged, called defective. Their small blunt faces look out from sterile hallways, grey buildings, medical case files, toward the fire that we become. They come wheeling and hobbling over thick tree roots, to sit by the flames, cry out in childish voices, for water, for hands to hold, for us to listen as they give themselves new names. We unwrap our tongues, we bind our stories, we choose to be naked, we show our markings, we lick our fingers, we stroke our bellies, we laugh at midnight, we change the ending, we begin, and begin again.” Citations Berne, Patty. “Sins Invalid: Disability, Dancing and Claiming Beauty,” in Telling Stories to Change the World, edited by Rickie Solinger, Madeline Fox, and Kayhan Irani. New York: Routledge, 2008. Clare, Eli. “Freaks and Queers.” Exile And Pride: Disability, Queerness And Liberation. Cambridge MA: South End Press, 1999. 81-118. Hershey, Laura. “You Get Proud by Practicing.” Accessed January 28, 2014. http://www.cripcommentary.com/poetry.html#PROUD. Johnson, Cyree Jarelle. “Disease Is Not A Metaphor.” Accessed February 10, 2014. http://www.blackgirldangerous.org/2013/07/2013729disease-is- not-a-metaphor/. Levins Morales, Aurora. Kindling. Cambridge MA: Palabrera Press, 2013. Lorde, Audre. “Uses Of the Erotic: The Erotic as Power.” Sister Outsider. Freedom CA: The Crossing Press, 1984. McRuer, Robert. “Disabling Sex: Notes for a Crip Theory of Sexuality,” GLQ: A Journal of Lesbian and Gay Studies, 17.1 (2010): 107-117, p. 114. Taylor, Sonya Renee. “The Body is Not an Apology.” Accessed January 28, 2014. http://www.sonya-renee.com/#!watch. Withers, AJ. “Looking Back but Moving Forward: The Radical Disability Model,” in Disability Politics & Theory. Halifax and Winnipeg: Fernwood Publishing, 2012.