INVISIBLE DISABILITY DISCLOSURE
By
JACQUELINE CÔTÉ
Integrated Studies Project
submitted to Dr. Ken Banks in partial fulfillment of the requirements for the degree of
Master of Arts – Integrated Studies
Athabasca, Alberta
August, 2009 Disability Disclosure 2
Invisible Disability and Disclosure
Introduction
The purpose of this project is to study why some people with "invisible disabilities" do not disclose their disability, especially in work and school contexts. My hypothesis is that
people who do not disclose their invisible disabilities fear discrimination. However, this lack of
disclosure may keep them from receiving needed support or accommodations.
People with invisible disabilities face a dilemma. Unlike people with visible disabilities,
who generally do not have a choice in whether others are aware of their disabilities, people with
invisible disabilities must decide whether or not to reveal their disabilities to others. Many
choose not to reveal their invisible disability, and while this choice may sometimes be a benefit
there are disadvantages as well.
The first step in the research process was to conduct a literature review in order to determine what literature regarding invisible disability disclosure currently existed and to find literature to support why more study is needed. The review of literature also helped define who does or doesn’t disclose disability, some reasons why someone might not disclose, and finally what benefits there could be to disclosure. The review was drawn from online journals, government publications and books which were accessed via the internet and through the
Athabasca library loan system.
The next step in conducting this research was to construct a survey tool. The online survey tool allowed for a survey group size of 25 to be reached quickly and easily via the internet. The survey was constructed using a Google spreadsheets form. The form then entered the responses automatically into the Google spreadsheet. The author embedded the survey in a blog posting on www.blogger.com for ease of use for the respondents and in order to be able to Disability Disclosure 3
precede the survey with the respondent’s consent form. The survey was constructed with both
quantitative and qualitative questions in order to get a clearer picture of the issues affecting those
with invisible disabilities regarding disclosure.
Respondents were recruited from an online community for people with invisible
disabilities. Choosing the online community for invisible disabilities ensured a targeted approach to the recruiting. The survey was designed to be anonymous although respondents had the option to enter their email address if they wanted to receive a copy of the final paper. An anonymous survey was chosen because those with invisible disabilities might be more open to this method compared to doing a case study or even a survey in person.
Data analysis shows that there is a correlation between the respondents’ type of disability, age, age at diagnosis, and disclosure. It also shows the types of issues disclosure has caused or the issues participants fear it would cause if they did disclose. To aid in the statistical analysis
SPSS and Microsoft Excel was used. SPSS was chosen to assist with frequencies and cross tabulations. Microsoft Excel was used to produce simple charts and as a conduit for importing the survey results into SPSS.
Definitions
Disability
According to the Canadian Human Rights Commission:
A disability is a physical or mental condition that is both: permanent, ongoing, episodic
or of some persistence, and; a substantial or significant limit on that person’s ability to
carry out some of life's important functions or activities, such as employment (2005). Disability Disclosure 4
Invisible disability
An invisible disability is any disability that is not “immediately apparent” (Invisible
Disability, 2009). Some examples of invisible disabilities are autoimmune disabilities, chronic
pain, dietary disabilities, neurological disabilities, and psychiatric disabilities (Invisible
Disability, 2009).
Duty to Accommodate: The Dilemma
“The duty to accommodate recognizes that true equality means respecting people's different needs” (Canadian Human Rights Commission, 2006). In this paper, duty to accommodate or accommodations will refer to accommodations for those with disabilities although the legislation encompasses accommodations due to “person's gender, age, disability, family or marital status, ethnic or cultural origin, religion or any of the other human attributes identified in the two federal acts” (Canadian Human Rights Commission, 2006).
More specifically:
The duty to accommodate refers to the obligation of an employer or service provider to
take measures to eliminate disadvantages to employees, prospective employees or clients
that result from a rule, practice or physical barrier that has or may have an adverse impact
on individuals or groups protected under the Canadian Human Rights Act or identified as
a designated group under the Employment Equity Act. In employment, the duty to
accommodate means the employer must implement whatever measures necessary to
allow its employees to work to the best of their ability. In the provision of services, the
provider must implement whatever measures necessary to allow clients to access its
services. (Canadian Human Rights Commission, 2006) Disability Disclosure 5
Literature Review
Who discloses & who doesn't
An individual’s employment situation may affect their willingness to disclose. In a study
of supervisors and managers, 87 percent disclosed their psychiatric condition (Ellison,
Russinova, MacDonald-Wilson, & Lyass, 2003). While this number is very high it should be noted that over half of those people "were led to disclosure due to a variety of unfavorable circumstances”(Ellison et al, 2003). The authors concluded that "confidence in the job, having learned to manage one's illness, knowledge of ADA (Americans with Disabilities Act) and feeling socially connected" were the most significant factors in the manager/supervisor group disclosing their disabilities. In a study of teachers in the United Kingdom only two in five teachers with an invisible disability said that they would disclose their invisible disability to a new employer and one in five would disclose their disability in an interview (Marley, 2009).
The majority of people with disabilities are not working in professional or managerial positions but in a "peripheral occupation characterized by poor job security, lower wages and an absence of regulatory protection" (Wilton, 2004) which would indicate that they would be less likely to reveal their disability based on employment position due to “a fundamental contradiction between the need for disclosure to access accommodation, and the knowledge that disclosure may mark them as problem workers in an already precarious environment" (Wilton, 2004) .
In addition to an employee’s position, the type of disability a person has is a strong factor in the likelihood of disclosure. Wilton reports that those in his study with sensory impairments had a disclosure rate of 100 percent because they felt that they could not function in the workplace without specific accommodations, those with physical impairments disclosed at a rate Disability Disclosure 6 of 65 percent, those with learning impairments at a rate of 56 percent but those with psychiatric diagnoses were the least likely to disclose with only 21 percent disclosing (Wilton, 2006).
Reasons for Non-Disclosure
Stigma. Attitudes towards disabled people may cause those with invisible disabilities to hide their disability due to the effect of stigma. Goffman states that stigma was originally defined by the Greeks as “bodily signs designed to expose something unusual and bad about the moral status of the signifier…. Today the term is widely used...but is applied more to the disgrace itself than to the bodily evidence of it (1963, p.1).” In the case of invisible disability, bodily signs are not apparent and the “disgrace” is simply that of having a disability. The
Ontario Human Rights Commission states:
Regardless of whether a disability is evident or non-evident, a great deal of discrimination
faced by persons with disabilities is underpinned by social constructs of “normality”
which in turn tend to reinforce obstacles to integration rather than encourage ways to
ensure full participation. Because these disabilities are not “seen”, many of them are not
well understood in society. This can lead to stereotypes, stigma and prejudice (2000).
This stigma and prejudice is even more evident if mental illness is the disability. Persons with mental disabilities face a high degree of stigmatization and significant barriers to employment opportunities. Stigmatization can foster a climate that exacerbates stress, and may trigger or worsen the person’s condition. It may also mean that someone who has a problem and needs help may not seek it, for fear of being labeled (OHRC).
It would be hard to argue in favour of disclosure if it were to actually worsen the individual’s condition. However, the problem is not with disclosure but with the stigma of mental illness and disability in general. As Goffman states, “Because of the great rewards in Disability Disclosure 7
being considered normal, almost all persons who are in a position to pass will do so on some
occasion by intent (1963, p.74).”
Even amongst those with disabilities mental illness carries a stigma. In a study by Deal that had those with and without disabilities rank disabilities from most to least desirable, mental illness was ranked as least desirable for both groups. The ranking from most to least desirable was arthritis, epilepsy, cerebral palsy, HIV/AIDS, Down's syndrome, and schizophrenia. The
only difference in the ranking was that Cerebral Palsy and HIV/AIDS were in reverse order to
the above for non-disabled people (Deal 2006, p. 92). It is notable that Schizophrenia is at the
bottom of both rankings.
This fear of disclosing mental illness persists even though discrimination against those
with mental disabilities was deemed unlawful by the Supreme Court of Canada. (OHRC 2000)
The problem with discrimination however, is proving that it has occurred and the onus is on the
disabled person to seek action.
Disabled as “Other”. Disabled people are treated as outside of our society or less than
the average person. The concept of the “Other” was first written about by Hegel and "has been
used in social science to understand the processes by which societies and groups exclude
“Others” who they want to subordinate or who do not fit into their society" (Other, 2009). It
also "often involves the demonization and dehumanization of groups" (2009).
Simone DeBeuvoir proposed that women were the "quintessential Other... fundamental to
women's oppression"(Other, 2009). DeBeuvoir also asserted that this also happened in
"categories of identity” (2009). Wendell expands on DeBeuvoir's views and explains that “(w)e
need a feminist theory of disability, both because 16 percent of women are disabled, and because
the oppression of disabled people is closely linked to cultural oppression of the body” (Davis, Disability Disclosure 8
2006). This is further exacerbated by our “heroic approach to medicine, and because disabled
people’s experience is not integrated into the culture, most people know little or nothing about
how to live with long-term or life-threatening illness…” (Davis, 2006). Our society is used to doctors curing our ailments. When this doesn't happen it is either seen as a failure of our own bodies or a failure of medicine. It is not seen as simply a state of being. This makes disability seem shameful or at least worthy of trepidation. If we understood more about how to live with disabilities they might not be so feared. Until recent years, children with disabilities were segregated from those without disabilities. Beginning in the 1980’s educational reforms in
Canada supported the integration of disabled students in Canada. (Uppal, Kohen, & Khan, 2008)
This integration however was not instant, complete or consistent throughout the provinces.
(Uppal, et al, 2008). Up until that time children attended special schools or attended segregated classes within the school. These children were not part of the non-disabled students’ experience.
They were Other – children both shunned and a little feared. Possibly with continued and more complete integration in our schools the next generation will not see children with disabilities as
Other due to their interaction in their formative years. This may lead to less of a stigma being placed on being disabled and would therefore alleviate the problems around disclosure of invisible disabilities.
There is a toll in making those with disabilities Other not only for those with disabilities but also for those without. "Disabled people are ‘other’ to able-bodied people, and... the consequences are socially, economically and psychologically oppressive to the disabled and psychologically oppressive to the able-bodied" (Davis, 2006). What are we missing as a society by ignoring those with disabilities? What economic loss is incurred by denying employment to the disabled because our society does not accommodate their needs? Those without disabilities Disability Disclosure 9
are stunted in their ability to understand the human condition if they do not have contact with
those with disabilities. The psychological burden on a newly disabled person who has always
seen those with disabilities as Other would weigh heavily. Understandably, those who can hide
their disabilities may do so because they do not want to belong to the group of those who are
"socially, economically and psychologically" oppressed. If an individual hides well enough he or she may pass for non-disabled, however, the individual still must deal with the truth of their disability and the problems that concealment may cause.
As Wendell further explains "(t)he problems of living with a disability are not private
problems, separable from the rest of life and the rest of society. They are problems which can
and should be shared throughout the culture as much as we share the problems of love, work and
family life" (Davis, 2006). This statement is very true for a number of reasons. First disability is
just a state of being and should not be seen as something shameful to keep private. Secondly,
like love, work and family life, disability is a likely result for many of us as we age (Health
Canada, 2005). If we were to accept disability as part of the normal human experience it would
remove artificially imposed barriers for those born with disabilities or those who acquire them
through accident, illness or aging. It would also allow a newly disabled person to deal with his
or her disability without having to worry about what it means to his or her position in society.
The patriarchal concept of independence versus the feminist concept of interdependence is also relevant when it comes to seeing our society’s views on disability:
A very important issue in this category for both women and disabled people is the value
of independence from the help of others, so highly esteemed in our patriarchal culture and
now being questioned in feminist ethics and discussed in the writings of disabled women. Disability Disclosure 10
In addition, some disabled people spend tremendous energy being independent in
ways that might be considered trivial in a culture less insistent of self-reliance; if our
culture valued interdependence more highly, they could use that energy for more
satisfying activities (p. 252).
This is a very interesting concept. In our culture we do value independence very highly. Being disabled suggests that we are dependent and therefore less than what our society demands. If our society valued interdependence the need to hide invisible disabilities would diminish.
Individuals with disabilities would be able to admit to needing help through accommodations and would be valued for the contributions made using those accommodations.
Eugenics. An extreme example of Other was in the practice of Eugenics. Eugenics is the term for the belief that by not allowing "defectives" to reproduce, society would be improved and therefore thrive. This theory resulted in the institutionalized practice of sterilizing individuals with disabilities.
In 1922, Harry Laughlin, an American follower of eugenics, drew up a model sterilization law that would require sterilization of the:
...(1) feebleminded; (2) insane (including the psychopathic); (3) criminalistic (including
the delinquent and wayward); (4) epileptic; (5) inebriate (including drug habitues); (6)
diseased (including the tuberculous, the syphilitic, the leprous, and others with chronic,
infectious, and legally segregable diseases); (7) blind (including those with seriously
impaired vision); (8) deaf (including those with seriously impaired hearing); (9) deformed
(including the crippled); and (10) dependent (including orphans, ne'er-do-wells, the
homeless, tramps, and paupers). (as cited in Pfeiffer, 1994)
This is a very broad range of conditions that would allow for sterilization. Disability Disclosure 11
Canada was not immune to this practice. In Alberta the Sexual Sterilizations Act administered by the Eugenics Board remained in effect until 1972 (Grekul, Krahn, & Odynak,
2004). It could also be argued that therapeutic abortions based on prenatal testing that indicates the possibility of a child being born with a disability are a form of eugenics. With the attitudes and realization that society deemed the disabled as too "degenerate" to be allowed to reproduce and often still tries to control whether those with disabilities are born, it is easy to understand why those with invisible disabilities still try to hide their disabilities from our society.
Disbelief or Discounting of "Invisible" Disability. Invisible disabilities by their nature are not readily apparent. Unless the disability is explained it is not likely to be understood and even then it is not always believed.
Those whose disabilities are invisible may also have to convince other people that they
really are disabled, not seeking some special—unfair—advantage: thus, what they must
do is meet a burden of proof. They thus face a double bind: either they forgo the
assistance or accommodation they need—and thus suffer the consequences of attempting
to do things they may not be able to do safely by themselves—or they endure the
discomfort of subjecting themselves to strangers’ interrogations. (Davis, 2005, pp. 154-
155)
This basically comes down to a “seeing is believing” attitude. In our society, "(t)he only impairments generally taken seriously by others are those which are readily visible” (Stone
2005)."
Individuals with invisible disabilities may find that they are faced with a conundrum:
If they keep quiet, they run the risk of being judged as lazy, incompetent or something
else equally derogatory. If they tell, they run the risk of not being believed, of being Disability Disclosure 12
judged as inappropriately looking for sympathy, or of simply being an attention-seeker.
(Stone, 2005)
Either way they receive negative responses from others. This means that:
Most people (with disabilities) will censor what they tell or say nothing rather than
expose themselves repeatedly to such deeply felt invalidation. They are silenced by fear
and confusion. The process is familiar from our understanding of how women are
silenced in and by patriarchal culture. (Davis, 2006)
In the case of those with invisible disabilities, who are even more likely to have their experience
of disability be invalidated, it may be less painful to simply stay silent.
Why Disclose?
The most often repeated benefit to disclosure was relief from stress. Ellison et al state that disclosure "(r)elieves the stress in hiding information about oneself and provides the opportunity to be accepted" (Ellison, Russinova, MacDonald-Wilson, & Lyass 2003). In hiding this aspect of one’s life there is a feeling of secrecy and dishonestly. This can lead to anxiety caused by the individual worrying about being found out or inadvertently divulging his or her secret. “When an individual in effect or by intent passes, it is possible for a discrediting to occur because of what becomes apparent about him…. (Thus arises one variety of what is called ‘an embarrassing incident’)” (Goffman, 1963, p. 75). Another type of stress described was that the employee might be asked to "do something by an employer that would necessitate disclosure."
(Wilton, 2004, p.32) This is a real concern. If an individual has chosen a job that works with his or her undisclosed disabilities, extra duties or even a promotion could suddenly precipitate the dilemma of doing the job poorly, incurring a possible injury by complying, or having to disclose Disability Disclosure 13
the reason that he or she cannot perform the task without accommodation. Voluntary disclosure
by the individual would reduce the “discrediting” effect.
Employees who do not want to disclose the exact nature of their disability are not
required to do so. “The employer may require a report from the employee’s doctor. The report
should concentrate on the functional or other limitations that require accommodation. It should
not recite the medical condition” (Government of Canada, 2005). This allows the employee to
maintain his or her privacy while still being able to benefit from appropriate accommodations.
In Ontario the employer bears much of the responsibility and cost involved in the accommodation process. For example an employee may be required to show documentation of their accommodation needs in the form of medical documentation or a doctor's note. The cost of this must be paid by the employer (Ontario Human Rights Commission [OHRC] 2000, pp. 23-
24). The employer must also keep all information confidential and "limit information to those reasonably related to the nature of the limitation or restriction so as to respond to the accommodation request" (2000). Accommodations should also be granted by the employer in a
"timely manner" (2000).
If an employer claims undue hardship in granting an accommodation request they then have the burden of proof. According to the Canadian Human Rights Act “it must be established that accommodation of the needs of an individual or a class of individuals affected would impose undue hardship on the person who would have to accommodate those needs, considering health, safety and cost (Minister of Justice, 2009). In addition, the Ontario Human Rights Commission states that "(o)ver two-thirds of job accommodations cost under $500; many cost nothing at all"
(2000, p. 27). At that price it would be very difficult to prove that there was an issue of undue hardship in complying with the accommodation needs of the great majority of workers. Disability Disclosure 14
Accommodations do, however, necessitate the flexibility of an employer in the "scheduling,
training, and assignment of work tasks for workers with impairments" (Wilton, 2004).
Disclosure also affects secondary education. Students with disabilities have consistently
attained a lower level of education than their non-disabled counterparts.
Post-secondary students with disabilities face an array of compounding barriers, which
might help to explain the relatively low rates of entry into and completion of post-
secondary education. A lack of supports, accommodation, and accessible physical
infrastructure can mean that students are not able to participate in their classes, move
around and live on campus, use the cafeteria and bathrooms, do research, or use the library
and computer labs. (Human Resources and Skills Development Canada, 2006)
Accommodation is not meant to give a student an advantage but only to help level the playing field. Many universities have services or associations for disabled students. While it is not necessary to disclose the exact nature of a disability there must be a willingness on the part of the student to seek accommodation. Once disclosure of the disabled student's needs has been made then accommodations can be put in place. If students were to disclose they might be able to achieve a higher level of education which would in turn improve their employment prospects.
"The rate of employment is higher for those with higher levels of education, which suggests that attaining higher levels of education can improve employment opportunities for people with disabilities as it does for the rest of the Canadian population” (2006).
The majority of people with disabilities want to work:
Based on data from the Participation and Activities Limitation Survey of 2001, we know
that of the 52% of people with disabilities not in the labour market, 28% want to work Disability Disclosure 15
and indicate that it is environmental barriers—not their functional limitations—that
prevent them from working (2006).
Accommodations can help remove those environmental barriers but this will only be possible
through disclosure.
Some individuals who have previously not disclosed may find that they have reached a
point where they wish to be open about their disability. As Goffman describes, “the stigmatized
individual can come to feel that he should be above passing, that if he accepts himself and
respects himself he will feel no need to conceal his failing. After laboriously learning to conceal,
then, the individual may go on to unlearn this concealment” (1963, pp. 101-102). While the use
of the word “failing” would not be considered politically correct in our current social climate,
nor correct in effect, the crux of the statement still holds true. The key to this type of disclosure
is that the individual “accepts” and “respects” him or herself and finds new way of approaching
the disclosure of his or her invisible disability.
Primary Research Method
Participants
Participants were deemed eligible by self identification as having an invisible disability.
The total number of responses was 28 with one survey being eliminated due to the same person sending the survey twice and two being eliminated because the respondents identified themselves as not having an invisible disability. This left a sample size of 25. It is acknowledged that the respondents are not a totally representative group with only one male responding, no respondents under the age of 30 and only one respondent over the age of 60. However this does not mean that the results are not significant because they are a good representation of this subset of individuals with invisible disabilities. Disability Disclosure 16
Measures
An online survey was created with a combination of closed and open ended questions.
The survey employed checkboxes allowing multiple responses, single choice radio button
questions, an open ended question, as well as a combination question with both multiple and an
open ended question to add additional responses. Open ended questions were recorded for
frequency of words appearing or for positive or negative responses.
Procedures
The recruitment letter (see Appendix A) was sent to the online community My Invisible
Disabilities Support Community ( www.invisibledisabilitiescommunity.org) and was posted on
the online forum. There was no control over who would or would not respond. Those who
chose to participate in the survey then clicked on a hyperlink in the recruitment letter. The hyperlink then brought them to a blog site which required them to read the consent document
(see Appendix B). To indicate their consent, the respondents clicked on the consent button which then allowed the respondents access to the survey (see Appendix C). The survey itself lasted less than 20 minutes for the average respondent. Respondents had the opportunity for full anonymity or to supply an email address if they wanted to receive a copy of the paper after completion.
Data Analysis
Data analysis consisted of descriptive statistics measuring the frequency and cross-
tabulation of the variables compared to disclosure in work or secondary education or by the
factors that keep the individuals from disclosing. A combination of SPSS and Microsoft Excel
was used in the compiling and analysis of the data. Disability Disclosure 17
Results
All of the 25 respondents are individuals with invisible disabilities. All but one of the respondents was female (96 percent). Respondents had to be over 18 to participate in the survey but only people over the age of 30 responded. There were six respondents (24 percent) in the
30-39 category, 10 respondents (40 percent) in the 40-49 category, eight respondents (32 percent) in the 50-59 category and one respondent (4 percent) in the 60 and over category.
According to “A Profile of Disability in Canada, 2001”, the general disability rate increases with age. The disability rate from birth until age 4 is only 1.6 percent. From birth to age 44 the rate of disability climbs steadily and then rises increasingly rapidly after age 45. By the time an individual is 75 there is a 53 percent chance that he or she will have a disability. This would indicate that the respondents were not distributed by age in the same way as the population assuming that those with invisible disabilities acquire their disabilities within the same age parameters. The disparity in disability between genders only varies by about 2 percent with more males from 0-14 years and more females from 15 years of age and up (Statistics Canada,
2001). The lack of male respondents and the mid range age group is most likely due to the sample being taken via the internet on a social networking site for individuals with invisible disabilities. These sites are more frequented by women and older individuals are not on the internet in as great numbers as younger individuals (Rapleaf, 2008).
The respondents could choose multiple responses for any of disabilities that applied because the individual could have more than one disability. In fact the mean, median and mode for the number of disabilities respondents reported was four. The distribution of disabilities can be seen in Table 1 below. Disability Disclosure 18
Table 1
Type of Invisible Disability N=25, respondents could choose more than one disability
Hearing 2 (8%)
Seeing 2 (8%)
Speech 2 (8%)
Mobility 16 (64%)
Agility 10 (40%)
Pain 22 (88%)
LD/ADHD 6 (24%)
Memory 15 (60%)
Psychological 13 (52%)
Developmental 1 (4%)
The type of disability or disabilities that the respondents had was compared with their rate of disclosure at work and/or in post secondary education to see if the type of disability had an effect on disclosure. Table 2 below shows the percentage of respondents by type of disability who did not disclose at work or in post secondary education. Disability Disclosure 19
Table 2
Type of Do not disclose
Disability at work in post secondary education
Hearing N=2 0.0% N=2 0.0%
Seeing N=2 50.0% N=1 100.0%
Speech N=1 0.0% N=1 0.0%
Mobility N=9 22.2% N=8 25.0%
Agility N=5 20.0% N=3 33.3%
Pain N=12 25.0% N=9 33.3%
LD/ADHD N=3 66.7% N=4 0.0%
Memory N=8 25.0% N=5 20.0%
Psychological N=8 25.0% N=6 33.3%
Developmental N=1 0.0% N=1 0.0%
Those with hearing, speech and developmental disabilities had a zero rate of non-disclosure.
This may be due to these groups not being able to hide their disabilities on an ongoing basis or
needing accommodations to perform in their careers or education. For the seeing disability
group it is possible that the result may not be representative in a larger sample. There were only
two respondents with seeing listed as their type of disability. Both respondents replied to whether they disclosed at work, but only one listed disclosure in post secondary education as being applicable. Interestingly, the LD/ADHD (learning disability and attention deficit hyperactivity disorder) category had the highest rate of non disclosure at work but had full disclosure in post secondary education. This seems to indicate that the respondents felt more Disability Disclosure 20
comfortable disclosing in an educational setting than in the workplace. The full disclosure in
education may be due to familiarity with educational accommodations for learning disabilities
and ADHD. The high rate of non-disclosure in a work setting may be due to the stigma of
LD/ADHD in the workplace. Interestingly, despite much being written in the literature about the
stigma of mental illness, psychological disability had a much lower non-disclosure rate at 25
percent than LD/ADHD at 66.7 percent.
Not all respondents worked or had attended post secondary education. There were 15 respondents for the question of disclosing freely at work. Of those, six responded (40 percent) that they did not disclose freely at work and nine (60 percent) indicated that they did disclose freely at work. There were 11 respondents who attended post secondary education. Seven respondents (63.6 percent) indicated that they disclosed freely in post secondary education , while four respondents (36.4 percent), indicated that they did not.
For those who did disclose their disability 92 percent indicated that disclosure had a negative effect by choosing at least one of the options. In order of greatest response, the respondents felt that disclosure lead to disbelief (69.2 percent), loss of job opportunities (61.5 percent), change in attitude towards capabilities (53.8 percent), discrimination (38.5 percent), or other negative effects (30.8 percent). For those who sometimes did not disclose their disability it was interesting to compare the actual consequences of disclosure with the perceived consequences. Disability Disclosure 21
Figure 1. Comparison of actual consequences to anticipated consequences of invisible disability disclosure.
The chart shows that in the choices Lack of Understanding, Discrimination, and Change in
Attitude Towards Capabilities, the fear of negative consequences is greater than the actual experience of those who have disclosed. In the case of Disbelief, the actual and feared consequences are almost equal. In the case of Loss of Job Opportunities however the actual consequence (61.5 percent) is much higher than the feared consequence (32 percent). However, in Lack of Understanding, Discrimination and Change in Attitude Towards Capabilities the fear was greater than the actual consequence.
The respondents were asked if they accessed services for their disability. Of the 25 respondents, 8 (32 percent) did not access services while 17 (68 percent) did. For those that did not access services the respondents were asked what services would be helpful to them. Two respondents who had answered that they accessed services for their disabilities also answered Disability Disclosure 22 this question. Their responses were kept because they indicated services that they were not currently accessing but would be helpful. The N value was adjusted accordingly in the calculations.
Figure 2. Services for disabilities that are accessed or that would be helpful.
Assistive Technology, Interpersonal Support and Physiological Support showed a fairly consistent outcome for both those currently accessing services and those who would services helpful. Educational Support and Self-help from Books, Videos and Compact Discs, however, showed a marked difference. Educational Support showed that 41.2 percent of people accessing services used this service but only 20 percent of those who did not access services said that they would find Educational Support helpful. This is may be due in part to Educational Support being more readily accessible than some of the other options and usually provided by the educational institution at no additional charge to the student. The Self-help Using Books, Videos and
Compact Discs may have a much larger number of actual users than those who would like to use them because of their low cost and easy accessibility. The most interesting finding is that only Disability Disclosure 23
5.9 percent of the respondents accessed services for help with Organizational Skills while 50 percent of those who did not access services indicated that they would find this helpful.
Respondents were asked if their disability caused missed opportunities at work, in education, socially or if it had not caused missed opportunities. Ninety-two percent indicated that their disability had caused missed opportunities socially. Seventy-six percent of the respondents indicated that their disability had caused missed opportunities at work, and 52 percent indicated that their disability had caused missed opportunities in education. Only four percent felt that their disability had not caused missed opportunities.
The age range of diagnosis for the respondents was also calculated. There were no respondents in the birth to nine years age range. There were 2 respondents (8 percent) that were diagnosed between 10 and 19. Seven (28 percent) that were diagnosed between the ages of 20 and 29. Five (20 percent) were diagnosed between ages 30 and 39. Seven (28 percent) were diagnosed between ages 40 and 49. Three respondents (12 percent) were diagnosed between 50 and 59. One respondent was diagnosed at 60 years of age or over.
The respondents were given an open question asking them to list four words that non- disabled people would think described people with the respondent’s disability. All 25 respondents answered the question but nine respondents responded with fewer than four words for a total word count of 89. Words that had the same meaning were categorized to facilitate the analysis. The original words and the categories can be seen in Appendix D. Of the 89 words listed 81 (91 percent) were negative words, five (5.6 percent) could be considered positive or negative depending on the context in which the word was used and only three words (3.4 percent) were clearly positive. Of the 89 words, 35 (39.3 percent) indicated disbelief. The most common word categories identified was “lazy” with 15 respondents (60 percent). This was Disability Disclosure 24
followed by “faking” with 7 counts (28 percent), and “burden”, “stupid” and “weak” with four counts (16 percent) each. The word categories “whiner”, “hypochondriac”, “you-look-good”
(treated as one word) all had counts of 3 respondents (12 percent); while “crazy”, “pity”,
“attention-seeking” and “depressed” all had counts of 2 (8 percent). There were 31 words that were unique. A full list of the words can be seen in Appendix D as well as a word cloud which shows the frequency by the prominence of the words.
Age was considered as a factor in whether respondents chose to disclose their disability at work or in post secondary education. The lone respondent in the 60 and over age category said that work and post secondary disclosure was not applicable so that category was removed from the figure.
Figure 3. Disclosure at work or post secondary education, by age group.
Figure 3 shows us that the respondents in the 30 to 39 age group were much more likely to
disclose both at work and in secondary education than the other age groups. It is possible that
the respondents in this age category are more comfortable with disclosing due to a gradual shift Disability Disclosure 25
in acceptance of disabilities by society, if not in attitude at least in legislation. Secondary education had a higher percentage of respondents who disclosed than those who disclosed at work, other than in the 40 to 49 age category where the disclosure rate for both were equal. This could be due to education generally being a safer place to disclose than in the workplace.
When respondents were asked if they regretted disclosing their disability, 69.2 percent said they did regret disclosure while 30.8 percent did not. Table 3 shows disclosure rates by the
type of invisible disability.
Table 3
Type of invisible disability compared to regret of disclosing ranked from least to most regret.
Type of Dis. N= No Yes % Regret
Speech 2 1 1 50.0%
Agility 4 2 2 50.0%
Mobility 9 3 6 66.7%
Pain 12 4 8 66.7%
Memory 9 3 6 66.7%
Psychological 8 2 6 75.0%
LDADHD 5 1 4 80.0%
Hearing 2 0 2 100.0%
Seeing 1 0 1 100.0%
Developmental 1 0 1 100.0%
All disability types had a percentage of 50 percent or more for their rate of regret in disclosing
their invisible disability. It is hard to know if the responses for speech, hearing, seeing and Disability Disclosure 26 developmental disabilities are representative of the population due to the small number of respondents in that group. Repeating the survey with a larger sample size would help to clarify this. The high rate of regret overall and in the larger response groups based on type of disability shows that the disabled respondents have experienced negative consequences from their disclosure. Particular attention should be paid to the LD/ADHD and psychological disabilities groups who have a representative sub sample size of 20 percent or more of the total sample and have a higher rate of regret than the overall rate of 69.8 percent for the sample as a whole.
The respondents were asked if their disability had caused them to miss opportunities at work, in education, socially or if their disability had not caused them to miss opportunities. Only
4 percent of the 25 respondents said that their disability had not caused them to miss opportunities. The highest rate of missed opportunities was socially at 92 percent of the respondents. The second highest rate was the “at work” response at 76 percent. “In education” had a rate of 52 percent. Overall 96 percent of respondents had missed opportunities in at least one category. Forty-eight percent had missed opportunities in all three categories, and 28 percent had missed opportunities in two categories. This shows that the respondents have experienced significant effects on their personal and professional lives because of their disability.
Age of diagnosis was also compared to the rates of disclosure of invisible disability. Disability Disclosure 27
Figure 4. Age of diagnosis as a factor in rate of disclosure.
Disclosure rates were high among those diagnosed under the age of 20. The rates then drop dramatically for the 30 to 39 age range, rise in the 40 to 49 age range and then reach 100 percent for the 50-59 age range. This may indicate that those who are diagnosed early in life are more able to adapt and accept their disability and feel less inclined to hide it from others. A possible reason for lower disclosure rates in the 30 to 39 and 40 to 49 groups may be due to career building during this time period. In the 50 to 59 group it is possible that careers have been established and the individual may feel more comfortable divulging his or her disability.
Limitations
The information regarding invisible disabilities is limited. Most of the literature relates to disabilities in general and then must be discerned for relevance to invisible disabilities. The literature does not fully explore the issues around disclosure of invisible disabilities. Further study of the effects of disclosure or non-disclosure for those with invisible disabilities is warranted to broaden the understanding and increase the specific knowledge of invisible disabilities Disability Disclosure 28
Due to the limitations of the project it was necessary to use a small sample size. This
caused some of the sub-samples to be too small to be considered statistically significant. A
further limitation of the project involved the recruitment of the sample group. Due to time
constraints and the difficulty in accessing people with invisible disabilities, the sample was chosen from an online community. This resulted in all but one respondent being female and an age distribution that is not typical of those with disabilities. It is also likely that this group is in
fact more open to disclosure than the general population due to their participation in an online
group for people with invisible disabilities. Also, those who are more comfortable with
disclosure are more likely to fill out the online survey.
Discussion
The data supports the hypothesis that people who do not disclose their invisible disabilities fear discrimination and that this lack of disclosure may keep them from receiving needed support and accommodations. Forty percent of the respondents did not disclose freely at work and 36.4 percent did not disclose freely in post secondary education. This shows that a
large percentage of people with invisible disabilities would prefer to hide their disability rather
than disclose. This lack of disclosure resulted in 38 percent of individuals with invisible
disabilities not accessing accommodations that they may need to be successful in post secondary
education and/or in employment.
People with invisible disabilities have a very negative view of how society perceives
them. In the open ended question asking for four words that non disabled people would think
described people with their disability, 91 percent were words with a negative connotation. Lazy
and faking were the most common words listed. This shows that people with invisible
disabilities feel that their disabilities are not believed by non-disabled people (and possibly by Disability Disclosure 29
people with visible disabilities). Creation of invisible disability awareness might help mitigate
this problem. If people with invisible disabilities felt accepted and believed, they might be more
likely to disclose. Invisible disability awareness might also mitigate the negative effects that 92 percent of respondents had experienced after disclosure. This would also quell the fears of those who have not yet disclosed and perhaps make them more amenable to disclosing their invisible disability. Awareness might also reduce the number of people who felt that their invisible disability had caused them to miss opportunities in education, work and socially. By creating a climate of awareness it would be hoped that there would be less discrimination, particularly in work and education, as these areas can be controlled at least partially through policies and education sessions. Missed social opportunities are no less important, however, and might in fact play an even larger role in the individuals’ overall happiness.
Particular attention should be paid to awareness regarding LD/ADHD (Learning
Disabilities and Attention Deficit Hyperactivity Disorder). LD/ADHD had the highest non- disclosure rate at work of 66.7 percent which means that the individuals are working without work place accommodations. This could have a negative effect on job performance and therefore on job retention and promotion. LD/ADHD had a rate of 80 percent regret of disclosure for a representative sample size of 5 out of 25 (20 percent) reporting this disability.
Hearing, Seeing and Developmental disabilities had a regret rate of 100 percent but the sample size was too small to know if it was representative of a larger population. This high regret rate shows that those with LD/ADHD are experiencing a high rate of negative consequences for disclosure which would warrant targeted attempts to help raise awareness for LD/ADHD. Disability Disclosure 30
Recommendations
The study should be repeated with a larger sample group with a more representative
population. If the study were repeated with a more representative sample group it would be
interesting to see a breakdown by age and gender for those with invisible disabilities compared
to those listed with disabilities by Statistics Canada.
Two areas for further study would be in accessing help with organization skills and age of
diagnosis. Further study regarding how to provide help with organizational skills would be
warranted given the interest in that service (50 percent) and small percentage accessing it (5.9
percent). This clearly indicates a need that is not being met. Age of diagnosis and current age would be good areas for more detailed study to determine if such factors as career stages, length of time to adapt to disability, or changes in society’s views over time affect disclosure.
Disability Disclosure 31
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Disability Disclosure 34
Appendix A
Recruitment Letter
I am a graduate student working on my final project for my Master’s of Arts Integrated
Studies degree at Athabasca University. My final paper is on Disclosure of Invisible Disabilities.
The purpose of my paper is to determine whether people are reluctant to disclose their invisible disabilities and if they are, understand why that is so. I have designed a short online survey to gather anonymous data showing individual experiences. The survey is confidential and no identifying information is needed. The survey will take between five and ten minutes to complete. If you choose to participate in the survey please make sure to read the informed consent section at the beginning.
I have defined Invisible Disabilities as including but not exclusive to the following
“mental illness, physical disabilities that are not readily apparent (such as fibromyalgia, lupus, arthritis, meniere’s disease etc.), Attention Deficit Hyperactivity Disorder, and learning disabilities. These are disabilities that people cannot see and often do not understand.” Any individual self-identifying as having an invisible disability is welcome to participate in the survey.
The survey is posted at invisibledisabilities.blogspot.com
Thank you,
Jacqueline Cote
[email protected] Disability Disclosure 35
Appendix B
Consent
The purpose of this survey is to determine whether people disclose their invisible disabilities at work or in secondary education and the reasons they may or may not do so. By participating in the survey you will help me to understand disclosure of invisible disabilities. There are no known risks in participating in this study. Anyone over the age of 18 with and invisible disability is invited to participate. For the purposes of this research Invisible Disabilities are defined as including but not exclusive to the following “mental illness, physical disabilities that are not readily apparent (such as fibromyalgia, lupus, arthritis, meniere’s disease etc.), Attention Deficit Hyperactivity Disorder, and learning disabilities. These are disabilities that people cannot see and often do not understand.”
You will be asked to complete an anonymous online survey that includes statements that you rate according to your experience. Should you agree to participate, you will not be asked to name yourself or your organization; however, you will be asked to indicate your age range. The survey takes approximately 10 minutes to complete. The survey will be posted from December 15, 2008 until January 31, 2009. The forum will be closed once the required number of surveys has been received or on February 1, 2009.
Before you can begin the survey, you must provide your consent to participate in this study. Please take the time to read this page carefully. If you want more information, I welcome your questions.
Your participation is completely voluntary, anonymous, and confidential. You can refuse to participate in the study or refuse to answer specific questions without penalty. You are free to discontinue completing the questionnaire at any time. However, once your answers are entered and submitted online, they become part of the study database.
No one except the researcher and research supervisor will see any of the answers. Information will be grouped and summarized for the purpose of disseminating the results. ). The survey uses a form from Google Documents; you can read their privacy policy at http://docs.google.com/support/bin/answer.py?answer=37615&topic=8620. The form is hosted on the Blogger blog site however the data will not be saved or accessible on the blog. It is simply a host for the form and does not collect the data. The data will be saved to a password protected spread sheet that only I will have access to. Once the study has been completed, and a final mark has been assigned, the data will be destroyed (approximately December 2009). You may obtain a summary of the results of the study, by sending me an e-mail request. The existence of the research will be listed in an abstract posted online at the Athabasca University Library's Digital Thesis and Project Room; and the final research paper will be publicly available. Questions or Concerns - If you have any further questions or want clarification regarding this research or your participation, please contact:
Researcher: Jacqueline Côté ([email protected]) Research Supervisor: Ken Banks ([email protected])
The Athabasca University Research Ethics Board has approved this research study and may be reached by e-mailing [email protected] or calling 1-780-675-6718 if you have questions or comments about your treatment as a participant in this study.
CONSENT - Participating in this study indicates that: 1. You are over the age of 18, Disability Disclosure 36
2. You understand to your satisfaction the information provided to you about your participation in this research project, and 3. You agree to inclusion of your data in this study.
You are free to withdraw from this research project until the point at which you submit your answers online. When you click on the "PROCEED TO SURVEY" button below, you are giving your consent to participate in the study.
Prior to proceeding, you are encouraged to print a copy of this page for your records Disability Disclosure 37
Appendix C
Survey Disability Disclosure 38
Disability Disclosure 39
Disability Disclosure 40
Disability Disclosure 41
Appendix D
Word List for Survey Question 15
Words Categorized Words Categorized anti-social anti-social lazy lazy asexual asexual lazy lazy attention-craving attention-seeking lazy lazy attention-seeking attention-seeking lazy lazy boring boring lazy lazy Brave brave lazy lazy Burdensome burden lazy lazy headache burden lazy lazy more work for them burden lazy lazy needy burden limited limited convenient convenient losers losers crazy crazy misunderstanding misunderstanding crazy crazy moody moody Cursed Cursed pathetic pathetic dependent dependent perscription-drug-addict perscription-drug-addict depressed depressed pity pity depressed depressed pity pity disorganized disorganized quitter quitter emotional emotional Resilient resilient faker faking scrambled scrambled faker faking self-inflicted self-inflicted faking faking selfish selfish faking faking sensitive sensitive faking faking slob slob faking faking slow slow liar faking smart smart forgetful forgetful stressed stressed fragile fragile struggling struggling Hopeless Hopeless dumb stupid hyperchrondriac hypochondriac Stupid stupid hypochondriac hypochondriac stupid stupid hypocondriac hypochondriac stupid stupid hysterical hysterical suffering suffering indecisive indecisive tired tired irritable irritable uncoordinated uncoordinated bums lazy unstable unstable lazy lazy untrustworthy untrustworthy Lazy lazy weak weak Lazy lazy weak weak lazy lazy weak weak lazy lazy weakling weak whiner whiner looks-ok you-look-good whiner whiner you look good. you-look-good whining whiner really? you-look-good worthless worthless Disability Disclosure 42
Word Cloud
Disability Disclosure 43
Appendix E
Invisible disability initial data Age N=25 20-29 0 (0%) 30-39 6 (24%) 40-49 10 (40%) 50-59 8 (32%) 60+ 1 (4%) Gender N=25 Female 24 (96%) Male 1 (4%) Type of Invisible Disability N=25, respondents could choose more than one Hearing 2 (8%) Seeing 2 (8%) Speech 2 (8%) Mobility 16 (64%) Agility 10 (40%) Pain 22 (88%) LD/ADHD 6 (24%) Memory 15 (60%) Psychological 13 (52%) Developmental 1 (4%) Disclose At Work N=15 No 6 (40%) Yes 9 (60%) Disclose Post Secondary Education N=11 No 4 (36.4%) Yes 7 (63.6%) Has disclosure led to any of the following N=13, respondents could choose more than one Lack of understanding 6 (46.2%) Discrimination 5 (38.5%) Loss of job opportunities 8 (61.5%) Change in attitude towards capabilities 7 (53.8%) Disbelief 9 (69.2%) Other 4 (30.8%) Regret disclosing N=13 No 4 (30.8%) Disability Disclosure 44
Yes 9 (69.2%) Factors for not disclosing N=25 Lack of understanding 16 (64%) Fear of discrimination 14 (56%) Possible loss of job opportunities 8 (32%) Change in attitude towards capabilities 20 (80%) Fear of disbelief 17 (68%) Other 5 (20%) Access services for disability N=25 No 8 (32%) Yes 17 (68%) If yes, services accessed N=17, respondents could pick more than one Assistive technology 6 (35.3%) Help with organizational skills 1 (5.9%) Interpersonal support 9 (52.9%) Educational support 7 (41.2%) Self-help books/videos/CD’s 9 (52.9%) Physiological support 13 (76.5%) If no, services that would be helpful Assistive technology 3 (N=8) (37.5%) Help with organizational skills 5 (N=10) (50%) Interpersonal support 5 (N=10) (50%) Educational support 2 (N=10) (20%) Self-help books/videos/CD’s 2 (N=8) (25%) Physiological support 7 (N=9) (77.8%) Disability caused missed opportunities N=25 At work 19 (76%) In education 13 (52%) Socially 23 (92%) No missed opportunities 1 (4%) Age diagnosed N=25 Birth-9 0 10-19 2 (8%) 20-29 7 (28%) 30-39 5 (20%) 40-49 7 (28%) 50-59 3 (12%) 60+ 1 (4%) Disability Disclosure 45
List four words that non-disabled people would (top answers) N=25 think describes people with your disability. Lazy 15 (60%) Faking 7 (28%) Burden 4 (16%) Stupid 4 (16%) Weak 4 (16%) Whiner 3 (12%) Hypochondriac 3 (12%) You-look-good 3 (12%) Crazy 2 (8%) Pity 2 (8%) Attention-seeking 2 (8%) Depressed 2 (8%)