Hidden Disability

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Hidden Disabilities

A hidden disability is defined as “one that is hidden so as not to be immediately noticed by an observer except under unusual circumstances or by disclosure from the disabled person or other outside source” [1]. Those with a hidden disability have limitations that are not immediately obvious to other individuals within the society. A hidden disability may become visible, depending on the situation, task, environment, and personal willingness to identify as being disabled [2]. There are thousands of illnesses, disorders, diseases, dysfunctions, birth defects, impairments, and injuries that cannot be observed, but can be debilitating to an individual under certain circumstances. Common indicators of invisible disabilities include: debilitating fatigue, pain, cognitive dysfunctions and mental disorders [3]. Additionally, these symptoms may be temporary, or life long depending on the individual and their circumstances [4].

Common Examples

This list is not extensive, but comprise some examples of what could be classified as a hidden disability.

Disability Models

There are two common disability models that people commonly refer to: the medical model of disability, and the social model of disability.

  1. Medical Model of Disability:The Medical Model of Disability, maintains that disabilities are imperfections within the human body, and therefore can be “fixed” by medical experts [4]. It is through this lens that people believe that preventing or curing a disability, will in effect rid the patient of this abnormality, and will bring the patient closer to being physically and/or mentally “normal” [5] [6].
  2. Social Model of Disability: The Social Model of Disability has a broader understanding and recognition to disability studies [5]. The social model of disability steps away from the medicalization of disability, and instead focuses on disabilities as a social phenomenon. This context is able to identify the social barriers surrounding disabilities, as well as adverse political and economic effects that an individual with a disability may face [4]. This model has faced much scrutiny for being all-encompassing, however proves to be a valuable lens for scholars to use when examining disabilities [2].

Hidden Disability and Identity

Due to the invisibility of the disability to others, those living with a hidden disability are placed between two societal dichotomies: being disabled, and not being disabled. Within this space an individual with a hidden disability can choose to either "pass" or "discuss" their disability with the people around them.

Disclosure and Discussing Disability

When an individual chooses to discuss their disability, it represents their choice to to identify with, and share information publicly about their disability. Disclosure concerning one's disability relieves an individual from the strain of hiding their condition. This will make it more likely for them to seek or develop social support networks with others who share similar experiences [7]. Other times, discussing one’s disability may not be out of choice. For example, in order to receive accommodations at school or work, an individual must formally disclose the disability to the leading institution. UBC’s Access and Diversity is an example of such accommodations. Without formal disclosure, individuals may not receive accommodations that they need to excel at mandatory tasks, and may suffer as a result [7].

Hidden disability disclosure may be met with complications. Many people who do not see an apparent disability may meet disclosure with disbelief, or perceive that the individual is exaggerating or faking limitations in order to gain special accommodations, legal privileges, or sympathy [8] [4]. Additionally, there is a stigma that is often associated with disabilities in society [6]. A combination of these factors may make disclosure increasingly difficult.

For example, an individual with a learning disability may not wish to disclose their hidden disability, for fear of being discriminated against. However, people living with disabilities must formally disclose their disability in order to receive accommodations at work or at school. Individuals must apply yearly in order to continue to receive support. As one individual in the hidden disability community argues: “they’re not asking blind and deaf students to get recertification that they still can’t see or hear. It feels like they’re trying to make us uncomfortable because they don’t believe learning disabilities are real” [9]. This situation, or similar types of situations may lead people to disassociate themselves from their disability in public.

Passing

“Passing” is an act of outwardly identifying oneself as the dominant, non-disabled, normal, or privileged, group [4] [6]. In this situation, an individual is choosing to censor a disability and gives society the false impression of able-bodiedness. By concealing a disability, an individual is able to avoid negative connotations of dealing with a disability, such as stigma, shame, impression management, and impact on relationships [10]. Persons with a hidden disability may also commonly feel a sense of guilt or fraudulence, for identifying as someone with a disability. They may believe that because their disability is not outwardly visible, it is less legitimate than those with visible disabilities, and that they are thus not entitled to similar accommodations, and hide their disability from the public [4] [7]. Studies show that continuing to hide a disability negatively impacts the mental and physical health of that person, by forgoing necessary accommodations [11] [7].

Challenge of Diagnosis

There are many difficulties regarding an individual identifying with their hidden disability in society. However, due to the wide variety of hidden disabilities on a symptomatic and temporal scale, many people with hidden disabilities go undiagnosed or misdiagnosed. Studies show that the process of diagnoses of a disability involves: “collecting multiple diagnoses by healthcare providers over a long period of time”, in addition to this definitions and symptoms of various clinical conditions may change over time, making it increasingly difficult for health care providers to diagnose individuals [7].

Perhaps more research on the globalization of it, how it is seen in other places and whether there can be subjective and cultural influences to it.

Awareness of Hidden Disabilities in the Workplace

Accommodations in the Workplace

People who live with invisible disabilities often face challenges obtaining accommodations from a prospective employer. This phenomenon might be reflected in the lack of knowledge regarding the civil rights entitled to people with invisible disabilities on both the employer’s and employee’s side. Providing accommodations is not part of the company’s policy, but rather it is a granted civil right under the Americans with Disabilities Act (ADA), which is regulated by U.S Equal Employment Opportunity Commission.[12] Prospective employees can request reasonable accommodation in the workplace if such an action would not result in an “undue hardship” on the company.[12] Undue hardship can be explained by an action causing substantial difficulty or expense on the operation of the employer’s business.[12] According to the ADA, reasonable accommodations are “adjustments or modifications provided by an employer to enable people with disabilities to enjoy equal employment opportunities”.[12]

People with hidden disabilities can choose to disclose or “pass” the disability. While some can qualify for the job without having to disclose disability, for others having a disability may hinder one’s job performance at certain occasions. In order to be protected under the ADA, you must voluntarily disclose you have a disability before discussing accommodations with the employer, however, it is suggested that you only disclose the medical conditions necessary to be eligible for an accommodation.[13] The ADA also protects the wellbeing of people with invisible disabilities since it prohibits employers to engage in discriminative behaviour. In the pre-offer period, there is a prohibition of inquiring for medical conditions or examinations and such questions are only permitted in the post-offer period.[14] On the other hand, the employer has no right to “withdraw the job offer solely because you revealed you have a disability” especially if you are able to perform the required duties with reasonable accommodation.[14]

A Case Study: The Potential of Dyslexic Employees

According to the International Dyslexia Association, dyslexia is a specific learning disorder that originates from a person’s neurobiology.[15] It is mostly associated with characteristics such as, difficulties with word recognition, poor spelling and decoding abilities (knowledge of letter patterns).[15] One thing that should be emphasized above all is that there is absolutely no relationship between dyslexia and intelligence.[15][16] Furthermore, this neurological condition is presented since birth and there is no cure for it, but dyslexia can be managed with the appropriate instruction.[15] While dyslexia is not an outwardly apparent disorder, dyslexics can face substantial challenge when they deal with writing and/or reading-based activities.[17]

It is not unusual that many companies are not aware of the impact of dyslexia on employee’s job performance. Employers sometimes underestimate the difficulties dyslexics face when given a task that has an intensive reading and/or writing component, or it might be the case that they are not informed about the learning disabilities of their employees at all. As mentioned before, dyslexia is unlinked to intelligence and many dyslexics are indeed innovative because of the unique way they think.[15][17] In the workplace, it is crucial that employees are transparent about their condition as this is the only way to secure accommodations. Options available to dyslexic employees include reasonable adjustments offered by the management team, or making use of assistive technology.[16] As far as employers are properly informed about dyslexia, companies can implement policies to support dyslexic employees, of which these types of action are preferably carried out by dyslexia specialists.[16] One example of adjustment is working on individual workplace strategies with a dyslexia specialist. In this way, the employee can gain knowledge on the methods that make work less stressful while being more productive, such as to review the skills on prioritization, colour-coding and organization of daily tasks in an effective manner.[16] On the other hand, technology is also a tool that greatly improve the learning barriers of dyslexic people. The implementation of assistive technologies in the workplace can be diverse, the companies should personalize the provision of such instruments according to the individual needs and the difficulties experienced.[16] For comprehension purpose, text-to-speech software can make information in e-mails or reports readily comprehensible. The benefits of assistive technologies are not limited solely to those with dyslexia, for instance, voice recognition and mind-mapping software are examples of technology that can improve the efficiency and productivity of the rest of the workforce.[16]

Historically, the term “dyslexia” is affiliated with social burden and dismissive cultural attitudes.[17] When the knowledge about the condition and treatments are less than available, people would have the tendency to link dyslexia to “stupidity”. As human societies progress, there is generally more information available and businesses start to develop more positive perceptions of learning disabilities and dyslexia in particular.

Disclosure

The transparency of employee’s hidden disability is vital to his or her wellbeing at work. The main contributor to workplace barriers is the lack of awareness coming from the person with hidden disability, as well as colleagues and employers who have not previously been informed of the employee’s condition. Due to the invisible nature of hidden disabilities, there is a fairly low level of awareness in the workplace. A research study has conducted to look at the identity process of young female survivors of hemorrhagic stroke. [18] It revealed the participants’ frustration with having a hidden disability, and which some people might doubt the legitimacy of it.[18] The study concluded that the general concerns of the participations are shared among those with similar disabilities.[18] People have different perceptions on the disclosure of disability and they respond differently to the challenges faced while working when they choose to "pass". However, in order to be better able to cope with the apparent difficulties at work, employees can also choose to disclose so that he or she would be provided with coping strategy or solution. Employer awareness of hidden disabilities is the foremost concern when it comes to requesting for accommodations.

The central concern in the legislation for employers to offer accommodation lies in the issue of disclosure.[19] Though workers are responsible to bring out their needs to whom providing the accommodation, they do not necessarily have to disclose the detailed aspects of their disability.[19] It is solely up to the workers’ will to only disclose the specifics or the entire nature of their impairment. Some hidden disabilities may have symptoms more apparent than others. There is a harder process of disclosure for certain hidden disabilities where conditions can hardly be observed, for instance, mental illness and HIV/ AIDS and the “duty to accommodate” is particularly controversial as these conditions are stigmatized in society.[19] Employers generally comply to “duty to accommodate” for known needs, the Ontario Human Rights Commission insists that employers should pay special attention to assist someone who is “clearly unwell or perceived to have a disability”.[20] Since some employees may be incapable of identifying their needs or they have difficulty disclosing, “the perception of such a disability will engage the protection of the Code” even if the “employer has not been formally advised of the mental disability”.[20]

The Evolution of Social Acceptance of Invisible Diseases

Depression as an Invisible Disease

Though even the Greeks understood depression as a disabling illness, depression in the modern world is commonly understood as circumstantial, self provoked and inherited in phases that will come to an end.[21] For example, physiatrists believe that both grief and depression hold similar symptoms and therefore handle treatment very similarly. The social fallout of this is that depression becomes linked to a short-term negative state or a ‘feeling’ one has about a specific subject. In reality depression holds symptoms of grief as well as an extensive list of symptoms outside of those expected with grief.[22]

Over the last 15 years through the trend of story telling through the Internet via forms of social media and web media depression has become more and more understood in its actual sense. Further, the inclusion of depression as a disease in centers such as UBC’s Access and Diversity give the illness credibility. As the sharing of information takes place, acceptance and understanding will become more and more frequent; allowing for the denial of the illness, or “passing” to happen less.

Hidden Disabilities in University Environments

University institutions are obliged by law to make their facilities accessible to students with various disabilities. In 2005, the government of Ontario passed the Accessibility for Ontarians with Disabilities Act with the aim of making Ontario barrier-free for individuals with disabilities [23]. Such laws raise awareness about hidden disabilities; as a result, the inclusion of people with disabilities improves [24]. Henry Harder, a professor at the University of Northern British Columbia, further refines that support by suggesting these disability management principles are shaped to support people living and working with disabilities.

Social barriers may derive from the lack of understanding towards individuals with hidden disabilities. In many cases, people with hidden disabilities just do not disclose those disabilities. It is difficult to blame the student body for their lack of awareness of hidden disabilities without disclosure. Most participants in studies believe that their disability is a private, personal matter, yet some want the option of full disclosure in order to validate others understanding of their disability [25]. People with either visible or hidden disabilities consistently face discrimination and issues concerning employment as they may face special hurdles [26]. Their additional challenge is not only to find suitable jobs on behalf of their capabilities, but as well as find employers willing to hire them. By providing the right support, people with disabilities can expand their skills and contribute to economic success.

Social Discrimination in University Environments

Discrimination towards hidden disabilities limits the participants’ willingness to disclose information about their personal disability [27]. Negative public perception causes resistance to seek accommodations, such as learning aids. For instance, those with hearing disabilities can be aided by the use of sign language. This can be done by learning sign language themselves or educating people about it, given that these individuals are willing to reach out for support. This social oppression is one of the causes for hidden disabilities to remain unknown. This fear of discrimination discourages disclosure, and individuals with hidden disabilities are less likely to request accommodations [28]. Once awareness has been established, positive attitudes towards hidden disabilities allow the students to obtain enhanced accommodations [29]. Negative perceptions lead to questioning the validity of an individual’s disability, making it much less accommodating for students.

Many students at university have hidden disabilities that face unique challenges and require different types of adjustments. The best ways of evaluating the needs of students is by directly consulting students with disabilities [30]. By raising awareness and eliminating discrimination regarding hidden disabilities, students will be more willing to seek assistance. And this in itself enhances the learning environment for all students. People today with disabilities—whether visible or hidden — desire access to opportunity without shame or pity. Examining inclusion through deviations of normalcy, society can construct approaches to disability that provide access to accommodations for people who need them [31]. Nevertheless, the future is bright and further opportunities are becoming accessible for those living with disabilities.

There is a growing concern for developing inclusive opportunities for people with visible and hidden disabilities. Laws such as the Accessibility for Ontarians with Disabilities Act highlights that society is in fact addressing this conception of social oppression and an effort to establish resolutions are underway. However, even with legislative support, people with disabilities confront substantial obstacles as they attempt to overcome social and physical tasks related to disabilities. This affects every aspect of an individual’s life: behaviorally, socially and economically. Organizations and laws can assist to ensure that disabled people have equal access to opportunities—opportunities that will allow them to maximize their personal contributions to society.

Non-Profit Organizations

The list of hidden disabilities is immensely extensive due to the unlike nature of characteristics that define a type of hidden disability. Since each condition is so unique, there exists a broad network of support systems in society and the number of non-profit organizations has been increasing. Some mentions include, but not exclusive to, Global Initiative for Asthma, International Dyslexia Association, Canadian ADHD Resource Alliance, The Arthritis Foundation and so on.

Invisible Disabilities Association

The Invisible Disabilities Association (IDA) is a 501(c)(s) non-profit organization that differentiates from its counterparts because the IDA concerns with not just one cause but hidden disabilities that pertain to hundreds of medical condition.[32] The founder and head of the IDA, Wayne Connell once said, “it’s that invisible nature of an illness that people don’t understand”.[33] Founded in 1996, Connell’s intention to start the group was inspired by his wife who has struggled with hidden disabilities such as Multiple Sclerosis, Lyme Disease and Multiple Chemical.[32] IDA has three main initiatives working together to change the conventional misconceptions of hidden disabilities – encourage, educate and connect “people and organizations touched by illness, pain and disability around the globe”.[32]

Campaigns
  1. IDA's popular booklet – But You LOOK Good!
  2. IDA's online social network – Invisible Disabilities Community
  3. IDA’s special projects include, the Cleaner Indoor Air Campaign, Invisible No More Campaign, Invisible Heroes Campaign, Programs4People and Service Animal Awareness
  4. IDA Annual Award Galas

References

  1. ↑ Matthews, C. K. (1994). To tell or not to tell: The management of privacy boundaries by the invisibly disabled. Paper presented at the annual meeting of the Western States Communication Association, San Jose, CA.
  2. ↑ 2.0 2.1 Olney, M., & Brockleman, K. (2000). The Impact of Visibility of Disability and Gender on the Self-Concept of University Students with Disabilities. Journal of Postsecondary Education and Disability, 18(1), 80-90.
  3. ↑ 3.0 3.1 Invisible Disabilities Information. (n.d.). Disabled World. Retrieved October 20, 2014, from http://www.disabled-world.com/disability/types/invisible.
  4. ↑ 4.0 4.1 4.2 4.3 4.4 4.5 Valeras, A. (2010). "We don't have a box": Understanding hidden disability identity utilizing narrative research methodology. Disability Studies Quarterly, 30(3/4), 1267-1297. Retrieved October 20, 2014, from http://dsq-sds.org/article/view/1267/1297.
  5. ↑ 5.0 5.1 Ferguson, P., & Nusbaum, E. (2012). “Disability Studies: What is it and what difference does it make?”. Research & Practice for Persons with Severe Disabilities, 37(2), 70-80.
  6. ↑ 6.0 6.1 6.2 Joachim, G., & Acorn, S. (2000). Stigma Of Visible And Invisible Chronic Conditions. Journal of Advanced Nursing, 32(1), 243-248.
  7. ↑ 7.0 7.1 7.2 7.3 7.4 Santuzzi, A. (2013, June 13). Invisible Disabilities. Psychology Today. Retrieved October 25, 2014, from http://www.psychologytoday.com/blog/the-wide-wide-world-psychology/201306/invisible-disabilities
  8. ↑ Gill, C.J. (1998). What are the problems of having a "Hidden Disability"? Post-Polio News, 1. Retrieved from http://www.ppsg.ie/newsletter06.htm
  9. ↑ Kravets, M. (1994). Hidden Disabilities: Another Diverse Population. Journal of College Admission's Special Diversity, 152, 18-25.
  10. ↑ Matthews, C. K., and Harrington, N. G. (2000). Invisible disability. In D. O. Braithwaite, T. L. Thompson, et al. (Eds). Handbook of communication and people with disabilities: Research and application (pp. 405-421). Mahwah, NJ: Lawrence Erlbaum.
  11. ↑ Chaudoir, S. R., & Quinn, D. M. (2010). Revealing concealable stigmatized identities: The impact of disclosure motivations and positive first disclosure experiences on fear of disclosure and well-being. Journal of Social Issues, 66, 570-584.
  12. ↑ 12.0 12.1 12.2 12.3 Facts About the Americans with Disabilities Act. The U.S. Equal Employment Opportunity Commission. Retrieved from http://www.eeoc.gov/eeoc/publications/fs-ada.cfm
  13. ↑ Hidden Disabilities in the Workplace. Retrieved from http://www.iseek.org/guide/disabilities/hidden-disabilities.html
  14. ↑ 14.0 14.1 Job Applicants and the Americans with Disabilities Act. The U.S. Equal Employment Opportunity Commission. Retrieved from http://www.eeoc.gov/facts/jobapplicant.html
  15. ↑ 15.0 15.1 15.2 15.3 15.4 International Dyslexia Association. http://eida.org/
  16. ↑ 16.0 16.1 16.2 16.3 16.4 16.5 Sanderson, A. (2011). Shedding light on a hidden disability: Realizing the potential of dyslexic employees. Human Resource Management International Digest, 19(1), 36-38.
  17. ↑ 17.0 17.1 17.2 Brunswick, N. (ed) (2012) Front Matter, in Supporting Dyslexic Adults in Higher Education and the Workplace, John Wiley & Sons, Ltd, Chichester, UK. doi: 10.1002/9781119945000.fmatter
  18. ↑ 18.0 18.1 18.2 Dale Stone, S. (2005). Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke. Disability And Rehabilitation, 27(6), 293-304. http://dx.doi.org/10.1080/09638280400008990
  19. ↑ 19.0 19.1 19.2 Wilton, R. (2006). Disability Disclosure in the Workplace. Just Labour, 8, 25-28. Retrieved from http://www.justlabour.yorku.ca/volume8/pdfs/02%20Wilton.pdf
  20. ↑ 20.0 20.1 Ontario Human Rights Commission (2000) Policy and guidelines on disability and the duty to accommodate. The Commission, Toronto.
  21. ↑ http://www.namigc.org/documents/Depression.pdf
  22. ↑ https://books.google.ca/books?id=DFFo_fj3ddwC&pg=PA53&lpg=PA53&dq=depression+socially+acceptable&source=bl&ots=uWM4sQAQg-&sig=tm_zDvWc6Efe2ixVjyBe2380sU4&hl=en&sa=X&ei=5UkzVeaSI8PfoATBxIHYBQ&ved=0CCoQ6AEwAg#v=onepage&q=depression%20socially%20acceptable&f=false
  23. ↑ Mullins, Laura & Michele Preyde. “The Lived Experience of Students with an Invisible Disability at a Canadian University.” Disability & Society 28.2 (2013): 147-160.
  24. ↑ Desjardins, Michael. "Invisible Disabilities." Feliciter 56.3 (2010): 106-8. ProQuest. Web.
  25. ↑ Mullins, Laura & Michele Preyde. “The Lived Experience of Students with an Invisible Disability at a Canadian University.” Disability & Society 28.2 (2013): 147-160.
  26. ↑ Harder, Henry. "Invisible Disabilities." International Journal of Disability Management Research 4.1 (2009): 1-2. Web.
  27. ↑ Mullins, Laura & Michele Preyde. “The Lived Experience of Students with an Invisible Disability at a Canadian University.” Disability & Society 28.2 (2013): 147-160.
  28. ↑ Desjardins, Michael. "Invisible Disabilities." Feliciter 56.3 (2010): 106-8. ProQuest. Web.
  29. ↑ Mullins, Laura & Michele Preyde. “The Lived Experience of Students with an Invisible Disability at a Canadian University.” Disability & Society 28.2 (2013): 147-160.
  30. ↑ Mullins, Laura & Michele Preyde. “The Lived Experience of Students with an Invisible Disability at a Canadian University.” Disability & Society 28.2 (2013): 147-160.
  31. ↑ Desjardins, Michael. "Invisible Disabilities." Feliciter 56.3 (2010): 106-8. ProQuest. Web.
  32. ↑ 32.0 32.1 32.2 Invisible Disabilities Association. http://invisibledisabilities.org/about/aboutida/
  33. ↑ Gingold, N. (2015, April 1). People With 'Invisible Disabilities' Fight For Understanding. National Public Radio. Retrieved from http://www.npr.org/2015/03/08/391517412/people-with-invisible-disabilities-fight-for-understanding
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