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INVISIBLE DISABILITY DISCLOSURE by JACQUELINE CÔTÉ Integrated

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INVISIBLE DISABILITY DISCLOSURE by JACQUELINE CÔTÉ Integrated 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
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