ADA Anniversary: The ADA Can't Bring Disabled Communities Equity Until We Address Inequities in Diagnosis

By Gretchen Gales

The Americans with Disabilities Act, or the ADA, celebrates its 30th anniversary this year. While it is a significant landmark in disability rights, it only goes so far for the disabled community. If you're one of many people going undiagnosed, it can't protect you at all. 
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I didn’t know I qualified for protections under the ADA until I was finally diagnosed with Tourette Syndrome at the age of 22. Sure, I had pediatric records indicating I was diagnosed with a tic disorder and “OCD traits” at eight years-old, but my neurologist was focused strictly on eliminating tics and the anxiety that caused them. He never offered resources or ways to cope with them on my own. For four years, my treatment only targeted eliminating bothersome symptoms so that I could appear more “normal” during my daily activities. This was ultimately a reflection on how I learned to live in a society as a disabled person: don’t tell anyone about your disability at all costs, or be treated as subhuman.
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It was only in my final year of college when my symptoms were bad enough that I was able to get accommodations, but only after pursuing a diagnosis with an adult neurologist. Even though I knew I needed them, asking for them still presented me with a lot of concerns: would my professors think I was lazy for asking for extensions on work or think I wasn’t cut out for my program? 

But thinking of all of the times where the benefit of just knowing I had accommodations available could have been a massive relief is maddening to me. During particularly difficult moments, I would set goals or promise myself a reward for not giving into the urge to tic or run into the bathroom to let out a stream of them. This was to avoid suspicion that something was wrong, but at the cost of great discomfort from the pent-up tics. Had I gotten a diagnosis before adulthood, I very frankly would have avoided a lot of mental and physical distress. 

Unfortunately, this is not an unusual occurrence for those with neurological and other “invisible disabilities” like ADHD, anxiety, OCD, among other conditions. For Tourette Syndrome specifically, which can have the previously mentioned conditions as co-occuring conditions, research shows that 50% of cases go undiagnosed. Without a diagnosis, getting documentation to access reasonable accommodations isn’t possible. If you do not understand why you act the way you do, you can’t tell someone how to help. 

Even if these conditions are finally diagnosed, many workers encounter discrimination in the hiring process. As a result, many choose to not disclose their disability at all to their employer out of fear that they will be rejected because of their condition.The decision to disclose a disability is such a common dilemma that the Job Advocacy Network has a guide on how, who, and when to disclose their condition, if ever. 

This is far from an overreaction. In a study by the National Bureau of Economic Research, two-thirds of cover letters indicated a disability while one-third did not. The results indicated that the applicants who disclosed their condition received 26% less responses from employers. For me personally, even with my struggles, I see my disability as an asset. However, it would be a lie to say that I still hesitate to disclose my Tourette Syndrome to others because of the stigma associated with the condition.

The ADA is still an essential asset to people with disabilities around the country, but in order for the ADA to reach its fullest potential, we as a country need to do a better job at embracing that disability isn’t a bad word, a burden, or an “undue hardship”. The disability community deserves to be seen and respected and invisible disabilities don’t have to continue to be invisible if we can be open with no fear.