Do You Need a Diagnosis to Be Disabled?

Or: A Deeper Dive Into Understanding Disability

Photo by Marten Newhall on Unsplash

Image Description: A person wearing a striped suit and blue framed sunglasses holds a large magnifying glass in front of their face creating a facial distortion.

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There is continuous discussion in our society about visible versus invisible disabilities, with folks who have non-visible disabilities frequently experiencing being questioned about whether they have a real disability and truly need accommodations. For some reason our culture is fixated on policing disability, as if there are numerous wonderful benefits for joining this club.

Let me clear the record here. Being disabled is expensive. I have to pay more for pretty much anything significant (housing, transportation, health care, and so on) in my life if I want it to be accessible and adapted to my disability. I spend more time and energy taking care of my body, navigating inaccessibility (and ableism), and managing broken systems (like health insurance) to get the care I need for basic living. I love my life, but being disabled is not an elite club with oodles of secret, fun benefits — we’re not talking the Cosmos Club or even AAA here. Nearly everything is harder, pretty much because of systemic and structural ableism.

Disability doesn’t need constant policing. It needs help in breaking down these systemic barriers so that life isn’t harder merely due to accessibility needs. I accept that my health condition is challenging, but does getting around in my wheelchair need to be so difficult? I certainly don’t think so. 

Yet in many ways I am fortunate because no one (until recently — more on that later) has questioned the fact that I have a disability and need accessibility accommodations. For people with non-visible disabilities to be continually questioned and have to defend their needs, it must be absolutely draining, exhausting, and unnecessarily repetitive.

So, I think it is worth exploring more in-depth the definition we have adopted in the United States as the broadest definition of disability and what it means and does not mean.

Background on the ADA Definition of Disability

Historically the first kinds of disability definitions were created by government agencies to define beneficiaries of programs. Think veterans’ benefits and Social Security Disability Insurance. These programs started and maintained lists of every known medical diagnosis. The purpose was to keep out those pesky fakers from the gluttonous rewards of disability support. Please note my extreme sarcasm here. No one receiving financial benefits for disability from the government is getting rich as they are not even enough to live on, haven’t kept up with inflation, and fall short of providing support for adequate housing (see this report analyzing how people living solely on SSI cannot afford housing in any market across the United States) plus food if you look at average costs across the nation.

These definitions were used for screening applicants and involve a lot of proof via paperwork, medical exams, and interviews. They are a gatekeeping tool, but not exhaustive and inclusive of undefined conditions (think about the onset of Long COVID or the slow recognition of diseases like Chronic Fatigue Syndrome). 

The creators of the Americans with Disabilities Act of 1990 (ADA) wanted a different approach. They understood legal protections were important for all people with disabilities, whether defined and diagnosed, or not. They also recognized that people may experience discrimination by being seen as different by peers, that merely a diagnosis of disability was not going to stop discrimination.

To that end, the definition of who is protected by the ADA was an important, well-discussed start to the law:

A person with a disability is someone who:

• has a physical or mental impairment that substantially limits one or more major life activities,

• has a history or record of such an impairment, or

• is perceived by others as having such an impairment.

Let’s Break It Down

First, the definition starts with the impact a disability has on a person’s life by significantly altering their ability to experience important life activities: like working, taking care of themselves, communicating, moving, and so forth. I emphasize  the major impact part. For example, my nearsightedness is not a major impact on my daily functions, as I can do many things without glasses and plenty of other things with my glasses. However, my rheumatoid arthritis has had a major impact on how I care for myself, work, move around, and so forth. I use a wheelchair for my mobility and need accommodations in most aspects of my life due to the impairment and disability caused by this illness.

The history of impairment is important because many disabilities can fluctuate. Even in my case, where I experience constant disability, I also experience better and worse days with my pain and energy that require accommodations.

Finally, the perception of others is recognized because this has a huge impact on my disability experience. People are constantly judging for themselves what I can and cannot do. What I should and should not do — instead of just asking me what I can do and what accommodations I need. 

Here’s a great example. I used to be able to travel by myself. I could manage most aspects of mobility and self-care on my own. As my disability has progressed (and accessible accommodations have worsened) this is no longer the case. I need more help with my personal care and have adapted to new limitations. Yet, if I don’t tell you, this may be something you don’t know. You may assume I can do things that I cannot (or vice versa). Or may not understand my condition has changed. Or make many other assumptions. My point is that no one should make assumptions about another person’s disability and accessibility needs. But a second point is that it may not be any of your business. If the situation is directly relevant to you, it may make sense to ask, but if not, it really depends on your relationship with the person.

Final Thoughts

No where in the ADA definition is there a list of conditions or diseases that affirm one’s disability. Rather, it is about the experience of a disability on a person’s life being significant and impacting important daily activities. So having a diagnosis is really not required for protections under the law and should not be asked about unless a person is being screened for specific services.

However, I will acknowledge in my own life that having a diagnosis to shout out when needing to defend or request accommodations has been helpful. It seems to add validity (which is silly and frustrating) to my needs. Yet even this is crazy because rheumatoid arthritis varies so greatly. My case is severe and persistent — resulting in my using a wheelchair for more than 35 years, ongoing pain, and progressive symptoms. Other people with the same condition may not experience the same level of disability. 

What we need to do, is listen to the people experiencing disability and believe them. Believe them about the impact of their particular disability. Believe them about the accessibility accommodations they require for inclusion in society. Believe them, whether we can see it or not. 

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