A Disability Crash Course: I'm the One Crashing
By Meghan Gragg
(Disclaimer: This is about my experience with disability and does not represent every person’s experience with disability)
Disabled people are the largest minority in the United States.
Anyone can become disabled at any moment.
I first learned anything substantial about disability in 2016 in a freshman writing seminar that was disability themed. In that class, I learned all about disability history and accessibility issues. I heard the experiences of my professor, who was disabled. I left the class with an outsider’s perspective on disability. For years, that was all I had. Every once in a while I would note places on campus and while studying abroad that were inaccessible. I would comment to myself, “well that violates the ADA (The Americans with Disabilities Act),” and that was it. I was an outsider looking in.
For so long, I didn’t consider myself disabled. I didn’t consider it as I struggled my entire life making friends and interacting with others; I didn’t consider it as I struggled with a mysterious illness in middle school that left me unable to keep food down; I didn’t consider myself disabled throughout high school as I dealt with crippling depression and anxiety. I never knew that calling myself “disabled,” was an option. I was always told to try harder, drink more water, eat healthier, and be happier. If I failed at making friends, went home once again because I was sick, or struggled to get out of bed, I just wasn’t trying hard enough. Ableism (discrimination against disabled people) is the norm in our society, especially here in America. Our heavily individualistic, pick-yourself-up-by-your-bootstraps mentality doesn’t account for when people need help and there’s not an easy fix.
This past year has been my own personal lesson in disability. Nearly a year ago, I finally received an autism diagnosis, after years of wondering why I was so different. I met a community of other autistic people on TikTok who are talking about our shared experiences and how we are disabled. I learned about disability pride on TikTok. You see, disability is extremely complex. I can be simultaneously proud to be disabled, proud to be autistic, and also struggle. And I struggle a lot. Disability TikTok taught me that there are some things I cannot do, and that’s okay. I will always struggle to make friends and do smalltalk. I will always be extremely sensitive to bright lights and loud noises. When I get overwhelmed, I can get meltdowns and shutdowns. I don’t have to just try harder. For the first time in my life, I felt like I was enough, just as I was.
Disability TikTok taught me about the social model of disability. The social model comes from the disability rights movement of the 1970’s and states that what disables us is not ourselves, but the world around us. Society puts barriers in place so that we cannot live and work independently, so we cannot live without discrimination. The social model shows itself when the world is physically unaccepting, in all of those buildings that don’t adhere to the ADA. It also shows itself in human interactions. The day after I got my autism diagnosis I was ecstatic. I finally had a word for how I was, how I thought and felt. I wanted to share the news with everyone. I made a Facebook post explaining that I had been diagnosed with ASD (Autism Spectrum Disorder). When the reactions came pouring in, however, my mood dulled. Instead of hearts or happy faces I received care reactions and condolences. They told me they were sorry for how I was.
In those months before and after my diagnosis I learned so much about how the world treats disabled people. Sometimes, at the worst moments, I wish I didn’t know; that I just kept on struggling not knowing I was autistic. Maybe that would be better. I learned about Autism Speaks, how their mission is to cure autism. How they see the way I think and relate to the world as a disease that needs to be eradicated or subdued by abusive therapies such as ABA (Applied Behavioral Analysis), which has been shown to cause PTSD. I learned more about the very real history of eugenics in our country and around the world. Not too long ago disabled people were killed and sterilized in order to “purify” the population. Hans Asperger himself was a Nazi who chose which little autistic boys deserved to live and which ones had too many support needs and would be killed.
People treated me differently once I told them I was autistic. I had people talk to me in a baby voice after they found out. I had a psychiatrist that I saw once every three months tell me that if I’m autistic I must be “high-functioning.” Either I was pitied and infantilized, or my struggles were swept under the rug and denied. I was denied reasonable accommodations at work and then had to quit my job after having a meltdown due to that lack of accommodations. The diagnosis that brought me so much knowledge and surety in myself, only brought discrimination from allistic (non-autistic) people.
I have learned to live with the way people treat me as an autistic person, while standing up for myself and others when possible. However, my other disabilities have snuck up on me. Over the past couple of years my health has deteriorated. My frequent migraines have become chronic and I get weirder ones that cause vertigo and partial paralysis. And, starting August of last year, my joints started falling apart. Literally. I worked a courier job last July that made me overstrain my body, often lifting 200-250 pound boxes in 90 degree weather. I have always had over stretchy joints, which resulted in sprains throughout middle school and hip subluxations (partial dislocations) in high school, but my connective tissues gave up last year. Since August, I have been dealing with chronic pain in all my joints and frequent subluxations. It’s getting increasingly harder to do everyday activities like walking or even brief exercise; I tried doing a 10 second K-pop dance for a TikTok last October and the next day all of my joints were continuously subluxating and I couldn’t get out of bed because of the pain.
So now’s the time to talk about the medical model of disability. The medical model is the traditional model of disability where doctors aim to cure disability. Needless to say, I have a complicated relationship with this model. While I would never, and can’t, be cured of autism (the way I think), I would give a lot to be cured of the pain I am in. However, doctors rarely live up to their promises of curing, or even helping, chronic pain and illness (in my experience). I am terrified of medical professionals, because they have so often gaslit me and make me feel crazy. I vividly remember in middle school, when I couldn’t keep food down, and the school nurse asked to see my vomit because she didn’t believe I was sick every day, even though I was extremely underweight. That same year I cycled through doctors and tests, being poked and prodded, and all they told me to do was drink more water. While the mysterious illness eventually subsided, every once and a while I still have the same problem. I just quit talking about it because I learned that doctors won’t do anything about it but humiliate me.
I am going through the same problem with the doctors now. I finally made an appointment with a primary care doctor in February, a difficult task for me because I have difficulties with executive functioning. He nodded and (pretended to?) listen. He ignored most of my pain and suggested that my shoulders were hurting because I hunch in front of the computer. He said that maybe I should see a rheumatologist, but didn’t refer me to one. After I left I eventually called him back and asked for a rheumatologist referral.
I had that appointment last week. She nodded as I spoke and asked me a bunch of questions. In the end she said that I have “traits of hypermobility” and that seeing a physical therapist might work, but didn’t refer me to one. Her biggest suggestion to me was that “people with better moods tend to hurt less” and that I should “get a better mood,” even after I explained I often felt bad because I am in so much pain all of the time.
If they could offer me a cure, I would take it. If they could relieve my pain at all, I would take it. But each time I go to the doctor I just feel a little bit more like maybe I’m making it all up. Maybe I just need to try harder to not be in pain, as if that’s how it works. As if one day I will think, “when I stand up my knee will not pop out of place and I will not scream in pain,” and voila, it will happen. I wish the medical model could fulfill its promises for my physical disabilities, but right now it doesn’t.
Instead, the medical model is making it more difficult for me to get support. In order to get accommodations and prescriptions for things like mobility aids you need a diagnosis. Doctors refuse to give me a diagnosis, so what can I do? Every day I dread going to class because I know that means I have to walk up the hill to Heller. I plan my walk strategically for places I can sit down when the pain is too much or when I’m too dizzy. There is often no place to sit down so I tell myself to just make it to the next street lamp and then I can lean on it, using my better knee. Some days my pain is too much to move and “Heller is an in-person institution.” I don’t have accommodations for this pain: the joints, or the migraines. If I have a strict professor that won’t let me Zoom in because I don’t have accommodations, then that means I either miss class or I push myself past my breaking point to try to attend class.
Being disabled sucks a lot of the time. Nowadays, when I note inaccessibility, it’s often for myself. I ask myself questions like: “Am I able to walk around to the other side of the building to get to the handicap accessible entrance button? (A.k.a. “Will my knees hurt more by walking there or will my elbow hurt more by opening the door?)” “Why the heck aren’t the gender neutral-accessible (it says it on the sign) bathrooms in Heller, accessible? (Neither have a button to open the door),” and once, “Why did they put the pile of snow right in front of the button to open the doors?” Brandeis isn’t making things easier by loosening COVID restrictions, putting disabled and immunocompromised people at more risk. But, I am so glad I have a community. I have found a disability community online on TikTok, and offline in the Heller Disability Working Group and the Disabled Students Network. We are able to talk about these things together by sharing our similar experiences.
And now that you have gotten a taste of what my life is like as a disabled person, I ask you: please remember us and think about us when making decisions; please center our voices in conversations that concern us. Nothing about us without us!
