I was born with a progressive hearing loss. My hearing did not worsen until after most of my speech had developed, so I speak with no impediments. Therefore, I am privileged in my experience with this disability. This has been a double-edged sword. While it is indisputable that deafness is a disability, when it isn’t immediately obvious in a social situation, it is harder to prove that I am disabled, entitled to associated accommodations, and susceptible to certain limitations as a result. This has led to various challenges for me, such as listening fatigue, perfectionism, self-doubt, and imposter syndrome.
What are Invisible Disabilities?
Approximately 1 in every 4 people in America live with disabilities (Center for Disease Control, 2023). Of that 1 in 4, approximately 10% of those disabilities are invisible (Eisenmenger, 2020). Invisible disabilities are a subcategory of disability that are defined as illnesses or conditions that are not visible or identifiable on the outside. This covers conditions such as chronic pain, autism, diabetes, and vision and hearing impairments.
Depending on the severity of the condition, a disability may cause significant hardship, or it may only cause minor inconveniences. Ultimately, societal barriers for people with invisible disabilities are more systemic and psychologically harmful than many people realize. Although there is significant research on the effects of living with disabilities and the way healthcare systems fail the disabled (Center for Disease Control, 2023), what happens when that disability isn’t so obvious?
Stigma and Imposter Syndrome
When a disability is visually apparent, onlookers have a visual cue to feel pity. There is an unacknowledged social acceptance that people who use wheelchairs or physical assistance technology aren’t as physically capable as the able-bodied population, and people expect differently of them.
Invisible disabilities are stigmatized. Research conducted among nurses in the early ‘90s shows a favorable treatment towards patients with visible and physical disabilities, and a perspective of fear and lack of understanding towards patients with invisible or mental disabilities (Murray 1991). This study is only one of many cases where invisible disabilities go misunderstood and mistreated. When the disability can be seen, there is more credibility associated with the individual because their condition can be observed. When the disability goes unseen, people accuse the invisibly disabled of lying, they can be viewed as uncredible, and crazy (Murray 1991).
When an individual has an invisible disability, there is no visual signal to society to expect differently of them. In fact, there are higher expectations from people with invisible disabilities to contribute to society than there are for able-bodied individuals. Because these disabilities aren’t obvious, teachers, employers, and society believe they should be surmountable and therefore expect the same level of success without providing necessary accommodations.
“Our visually oriented society may not take the time to look beyond appearances. People tend to believe what they see; and if it can’t be seen, it simply doesn’t exist.” — Lisa Lorden (Fibromyalgia)
McNeill, John
This stigma tied to invisible disabilities spans from the onlooking population, and is internalized by the people themselves. Many people with invisible disabilities may not even categorize themselves as disabled. This may be because of the stigma associated with disability (Invisible Disabilities Association 1996).
These expectations and lack of accommodations have led me to self-doubt my lived experiences and the extent of my struggles. Because society tells us that our hardship with disability is invalid because it cannot be seen, we internalize that sentiment and dissociate ourselves from the ‘disabled’ label/identifier.
“Sometimes I let doubt get the better of me, and I wonder, “Am I an imposter?” When others assume it’s all in your head, it can make you question your reality.” —Angie Collins (TBI)
Collins, Angie
Challenges in Disclosing Invisible Disabilities
Throughout high school and my first semester of college, I worried about how my peers would receive my request for accommodations. I was worried that if I gave into the label of ‘disabled’ people would begin to treat me ‘disabled’ and pity me. On the other hand, I also worried that people wouldn’t grant me the accommodations I needed simply because I looked and spoke normally.
People with invisible disabilities worry about the stigmatizing effects of appearing normal while requesting necessary accommodations. A primary reason that invisible disabilities are not accommodated in the same way as visible disabilities is because the disclosure of the disability to the employer is entirely up to the individual (Ysasi 2018).
This ability to or not to disclose the disability due to their privilege of passing may cause dire emergency issues, lack of needs being met, and increased fatigue and hardship for the individual as they work harder than necessary to overcome their limitations. The reason an individual with an invisible disability might refrain from disclosing it to their employer may be out of fear of “not being employed or being fired, limited chances for promotion, concerns about losing health insurance, and being treated differently by colleges and employers” (Norsted 2019).
Physical and Emotional Toll of Invisible Disabilities
Living with an invisible disability doesn’t just affect life in the workplace or school. Disabilities of this style have significant emotional, physical, and psychological effects on the individual. People with invisible disabilities are more highly susceptible to self judgment and doubt (Collins 2021). Because society accepts people with invisible disabilities to be members of the majority, they themselves have trouble accepting that they are members of an oppressed minority. We feel an increased need to prove ourselves and are more susceptible to judgment and ridicule when we do something wrong due to our disability. The constant need to “fit in” or prove ourselves “able” leads to increased fatigue and brain fog whether that is a symptom of a specific disability, or whether it is simply from trying to fit into a world that fails to meet accommodations more often than not (Collins 2021).
I distinctly remember a Special Education teacher in my elementary school saying that there was no way I needed assistive technology because I was “performing very well without it.” My successes were used against me. If I did well without assistive technology, it was seen as proof that I didn’t need it. My brain was working overtime to process information and hear what was going on around me. This caused me to fatigue quickly. Each night after school I would fall asleep before being able to touch my homework. I eventually fought to receive accommodations to supplement this struggle.
The ableism didn’t end here. During the height of COVID with state-wide mask mandates, I was unable to lip read. I went through the school to institute the accommodation for clear window-masks, yet my teachers would forget, and in some cases refuse, to wear them. I spoke well and performed well, so I must have been able to hear. Little did they know, I was doing extra work in the background to make up for my needs not being met. This is a common experience of those of us with invisible disabilities. We are susceptible to perfectionism, fatigue, discrimination, and ableism, simply because of our appearance (Collins 2021). What may be considered a privilege—appearing ‘normal’ at face value—actually has significant adverse effects.
Although it is clear that people with invisible disabilities have been failed by insufficient systems and a lack of awareness, certain actions can be taken to assist people with invisible disabilities. In my case, schools can emphasize the importance of enunciation and speech pathology in classes to make it easier to lipread, closed captions can be provided for pieces of digital video media, and there can be policy extensions made to the Americans with Disabilities Act to account for invisible disabilities. A different benchmark can be created and taught within public education to prevent students from presuming the able body and mind to be the default. We can teach inclusivity and lack of stigma from a young age, and the effects of that education will radiate into society.
Citations
Center for Disease Control. “Disability Impacts All of Us Infographic.” CDC, 5 January 2023, https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html . Accessed 6 March 2023.
Collins, Angie. “The Challenges of Living with an Invisible Illness.” Psychology Today, 17 April 2021, https://www.psychologytoday.com/us/blog/stroke-awareness/202104/the-challenges-living-invisible-illness. Accessed 6 March 2023.
Eisenmenger, Ashley. “Five Things You Didn’t Know About Invisible Disabilities.” Access Living, 14 September 2020, https://www.accessliving.org/newsroom/blog/five-things-you-didnt-know-about-invisible-disabilities /. Accessed 6 March 2023.
Invisible Disabilities Association. “How do you define invisible disability? | invisible disability definition.” Invisible Disabilities® Association, https://invisibledisabilities.org/what-is-an-invisible-disability /. Accessed 6 March 2023.
Kattari, Shanna K., et al. ““You Look Fine!”: Ableist Experiences by People With Invisible Disabilities.” Journal of Women and Social Work, vol. 33, no. 4, 2018, pp. 477-492. sagepub.com/journals-permissions. Accessed 19 February 2023.
McNeill, John. “Looks Can Be Deceiving.” Invisible Disabilities® Association, https://invisibledisabilities.org/publications/invisibleawareness/lookscanbedeceiving/. Accessed 27 April 2023.
Murray, Michael, et al. Effect of contact on nursing students’ attitudes to patients, Nurse Education Today, Volume 11, Issue 5, 1991, Pages 363-367, ISSN 0260-6917, https://doi.org/10.1016/0260-6917(91)90036-A.
Norstedt, M., 2019. Work and Invisible Disabilities: Practices, Experiences and Understandings of (Non)Disclosure. Scandinavian Journal of Disability Research, 21(1), pp.14–24. DOI: http://doi.org/10.16993/sjdr.550
Ysasi, Noel A., et al. “Stigmatizing Effects of Visible Versus Invisible Disabilities.” Journal of Disability Studies, vol. 4, no. 1, 2018, pp. 22-29, http://pubs.iscience.in/journal/index.php/jds/article/view/779/497 . Accessed 19 February 2023.
