The 30th anniversary of the passing of the ADA is here, and to be honest, I can’t help but reflect on how accessible and inaccessible my life has been made recently in light of the COVID-19 pandemic.
I have a rare genetic condition that impacts all of my joints, organs, ligaments and tendons called Ehlers-Danlos syndrome, type 3. Recently, I have had to reckon with developing symptoms of type 6, particularly dramatic hearing loss and an ongoing developmental curvature in my spine and shoulders because of my stenosis and scoliosis. I also have a few mental illnesses and asthma, placing me in the high-risk category for COVID-19.
When I was diagnosed at the Mayo Clinic in Jacksonville three years ago, I didn’t fully recognize what the diagnosis would mean for the rest of my life. All I knew was that I was in constant pain, was forced to drop out of classes at a prestigious university, had to give up all of my active hobbies (I was pursuing a black belt in Taekwondo and enjoyed my fair share of jogging and cycling at the time), and found myself in dire need of mobility aids that I’d only seen older generations of people use such as knee and elbow braces, compression socks, canes, and to my chagrin at the time, a wheelchair.
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When I signed up for classes at a new university in 2018, I registered immediately with the disability services office on campus. As helpful as they were with medical excuse notes and other accommodations to my needs, the actual accessibility on campus was dismal. Unfortunately, this is a common experience for many disabled students across the United States.
I quickly learned that just because a wheelchair ramp is built outside of a building, it doesn’t mean that a wheelchair user can actually easily use it. It sounds like a conundrum, but believe me, my fellow manual wheelchair users understand just how much of a difference a few angle degrees and the width of a ramp can be. That ramp also isn’t necessarily a hallmark sign that the building interior will be cooperative with my wheelchair. The amount of times I’ve been stuck on ramps and unable to get through doorways would impress a lot of folks, I imagine.
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I also found myself wishing on my worst pain days that online classes were made available to me. Given the opportunity, I wouldn’t have had to push myself nearly as hard or cause myself as much fatigue to make it to in-person classes but could have attended class just as effectively online instead.
My experiences at my university and in my local community as a disabled person eventually led me to research and analyze the accessibility of my historic hometown of Savannah, Georgia. This led to my publishing my senior project entitled “Handicapped in the Hostess City” which revealed the intersections of maintaining a city’s historic integrity while also making it easily accessible to disabled persons.
My main findings proved that while the ADA’s passing was a historic landmark in policy and very obviously covers a multitude of protections for individuals like myself, it is up to cities and their building ordinances, historic council-persons and architects to make a city truly accessible.
During my project research, the world was turned upside down because of COVID-19. Seemingly overnight, my classes went from in-person to online, making them instantly accessible from any place in my house and in comfy clothes. It seemed almost like it was a dream come true!
All seemed well, since by nature and by illness’s default I am an introvert and homebody, until I started having to reckon with the need to visit my medical practitioners in their various offices, particularly my chiropractor.
I had to weigh my odds. Was it worth risking exposure to the virus in my immunocompromised state to have my pain alleviated or could I muscle through? Inevitably, I found myself having to go to appointments, though I staggered them out to monthly visits instead of my normal bi-weekly schedule. My body wasn’t pleased with my decision, but I did my best to compensate with more frequent resting and periods of stress relief.
More recently, I made a move with my partner to the D.C. metro area as I plan to attend graduate school in the fall. This means finding new doctors (particularly those who understand my condition), pursuing a specialist for my seemingly ongoing hearing loss, and in general, exploring new territory, particularly public transit.
While my classes appear to be all entirely hybrid courses, meaning they will be conducted as a mix of both in-person courses and online meeting periods, I will have to inevitably reckon with how my mobility aids and I navigate the city, whether by foot or metro.
The ADA has made the United States more accessible, and by happy accident, so has COVID-19, though it has come at an unnecessarily high cost. I’m inclined to believe that many students like myself have come to realize over the passing months that it was possible to have had access to resources for our needs this whole time, but instead we were not offered those resources until “these unprecedented times.”
Naturally, I understand that university budgeting and professors’ tech-savviness is at play here, but it is admittedly a little disheartening to reckon with. I’m finally in a place in life where I have access to complete my classwork without completely exhausting myself, but I also realize these new online learning systems could just as easily go away when the COVID-19 vaccine becomes available.
The ADA has made American campuses accessible by policy, but inevitably it is at the hands of individuals in charge of students’ academic success, university building designers, and even fellow peers who really make a university more accessible. I can only hope that as the pandemic passes and as more social justice issues are brought to light, more individuals will come together and look out for one another’s needs, especially the needs of disabled individuals.
Being abled is a facet of privilege, and in order for the world to become a more accessible place for all, we each have to examine that privilege and find out how to make this a more welcoming place for everyone.
Read more stories like this on The Mighty:
When I Realized I Can’t Be ‘Normal’ as a Queer Disabled Person
Choosing to Be Gentle With Myself Through the Uncertainties of Chronic Illness
How My Husband Helps in My Fight Against Chronic Illness
12 Photos That Capture the Worst of My Ehlers-Danlos Syndrome