Kate Shen/TMD.

As a child, I used to think that the human body had a limited supply of skin. After seeing pictures of skin layers in a first-grade textbook, I thought that every time I scraped my knees on the pavement a different layer of skin was revealed. I used to ask myself all sorts of questions. What would happen when I reached the last layer? Was it just one thin sheet of skin holding muscle, sinew and bone together? After that, would I finally unravel? The image of flesh escaping skinless gaps in my body made me develop a deep fear of falling and tearing my skin. I started living my life with my head down, carefully watching the cracks of the road, making sure I didn’t take a wrong step. Regardless of my caution, I still fell and fell often. Being so young, I just laughed it off and became known as the clumsy kid. As time went on, I continued falling, started struggling with basic movements and injuring myself a lot more. Eventually, my doctors realized that my health was being compromised by more than mere clumsiness. 

At the age of five, I was diagnosed with hypotonia, a condition of low muscle tone that affects my large motor skills and makes certain bodily functions harder. I can walk and function at a basic level, but everything is paired with extreme fatigue and constant pain. For most of my childhood, I understood my differences, and quite frankly, I wasn’t ashamed of them. When I moved to India for four years (from ages 9 to 13), I played sports for hours and hours with my friends in the tropical heat. I got laughed at and we joked around about my rather obvious lack of athletic ability — but throughout it all, I was never embarrassed. While it was a lot harder for me to explain my disability in India (considering the societal habit of ignoring hard-to-describe circumstances), I always found it easier to simply live a normal life. 

I was growing up in a country where politeness didn’t live up to western standards and unsettling directness was more common. Living in India made me develop incredibly thick skin, because if I did not display a certain level of confidence, I would have been trampled over by rude comments very easily. Even when people had something to say about my disorder, I was confident enough to shut it down right then and there (with my freshly developed set of Hindi curse words, of course). It wasn’t until I moved back to the states that I understood that feeling embarrassed is a consequence of Western societal norms. In India, I mostly experienced differentiation to my face so it was easier to respond to compared to the more implicit attitudes I observed from people in the United States. While humiliation may not seem like something culturally unique, it certainly felt that way to me when I experienced the subtleties of ostracism instead of the direct remarks I was accustomed to.

As I grew up, my need to protect myself started manifesting differently. Instead of hiding my weakness by pretending it didn’t exist, I projected a cold exterior so people wouldn’t believe that any debility was even plausible. 

“She could probably beat you the fuck up, Danny” 

In a high school game of Paranoia with 10 other guys, they somehow all decided that I was most likely to fight someone — and win. This type of interaction was hardly uncommon for me. Maybe in my fear of being seen as weak, I started to project some strength that I simply did not possess. Or maybe I like to think that I had any control over how I was perceived. The dissonance between my internal identity and external perception makes me feel quite like a little girl playing dress up in her mother’s adult clothes. I patch wounds from my childhood with this desperate excuse of maturity because I never got the chance to heal. 

It wasn’t until my senior year of high school that my doctor told me hypotonia is only a symptom of an actual disorder, which meant that I had lived 18 years having no idea what was actually “wrong” with me. After a series of tests in 2021, I was diagnosed with ADSSL 1 Myopathy, a mutation of the ADSSL1 gene. Unsurprisingly, this disease is unfamiliar to most people because it is an ultra-rare muscular disorder that also happens to be progressive. After 19 years of living with an unnamed burden, I was told that there was a chance I could lose my mobility and any vision of my future life. When my parents told me about my diagnosis, they also told me about their grand plan to find treatment. Since my brother has the same disorder and his symptoms were progressing faster than mine, my family had a valid reason for being concerned. Despite the rationality of their treatment plan, my first instinct was to tell them that I wanted nothing to do with it. I was sitting at the kitchen table the morning after my flight from Ann Arbor and was somehow being bombarded with this plan for a foundation, gene therapy and fundraising efforts. Their plan relied on going out to the world with my “story,” but just the mere thought of seemingly having to grovel for pity disgusted me. I had spent those prior three months entering my college life and developed unbridled ambitions and hope. That all changed after a five-hour flight and, expectedly, I couldn’t really process anything, so I decided to distance myself from it completely. 

I spent my Thanksgiving break driving to one hospital after another. Despite knowing that my parents were doing all of this for me, I started to hate everything about it. I didn’t want to talk about what was wrong with me because then I would have to actually admit that there was something wrong in the first place. When things go wrong in my life, I choose to fold those thoughts and memories neatly into far-to-reach compartments in my mind. Talking about my disease unwinds all that ordered chaos until there isn’t any order, just simple chaos. The last thing I wanted to think about was my body. The body of a woman, a brown woman, a brown disabled woman. Using the word disability seemed unimaginable at the time because it literally signifies the lack of something, and I liked to pretend that I lacked nothing in my life. 

Ever since my diagnosis, this disorder has consumed my parents’ lives. On top of their full-time jobs, they started a non-profit, found a research team and met dozens of scientists on a daily basis. Yet when I had to hear about it on every phone call with them, somehow I only felt annoyed. I was annoyed by how much their efforts had grown and by how much more I would have to think about it. I was even more annoyed that I knew my anger was misplaced because my parents were pushing themselves for my brother’s and my sake. Slowly, it became an ever-present thought in my head. Walking to class, I would constantly wonder if I walked strangely. Going up the stairs, I would lower my head because I didn’t want anyone to see my face flush bright red. I was embarrassed and exhausted by my life being devoured as both my mind and body corroded. 

[Although I am fatigued when working with my family and professionals, I would like to recognize the privilege I have to explore possible treatment options, since this isn’t the reality for many disabled individuals. My experience with disability has been impacted by my privilege and access to resources, which is not an accurate reflection of other experiences those with disabilities share.]

The feeling of not being able to have any control over my body started to make life seem meaningless. Constantly wondering if my muscle would freeze up at any given moment and if so, would anyone around notice?  My brother encouraged me to be upfront with other people in my life; I didn’t know how to tell him that was impossible for me. I was supposed to be confident and fearless for everyone else’s sake. All of that would crumble if people found a reason to pity me. I have spent 20 years now building this person — someone named Shania, someone I know intimately, someone with handpicked traits created to appear unfazed by the world. She is my exterior, a strong one at that, but if you get close enough you can see the cracks that look in on me — someone I don’t want to be.

I may use the past tense to discuss these feelings, but in reality, I still feel all of this today. Fear, humiliation and frustration exist every moment of my life. I’ve only gotten better at pretending it doesn’t. I don’t have a solution, but I’m motivated to search for one. The pain I see in my family motivates me to find a reason to accept my situation, because changing it would be harder than making my peace. 

My journey to accepting my disability exemplifies the need for larger discourse around the intersectional implications of disability. The conversation regarding intersectional identities through the lens of disability is lacking. Part of that is because it’s hard for a lot of people, myself included, to even realize the intersectional implications of having a disability. Deconstructing our social impressions of disability as a monolith is the first step to destigmatizing our experiences. I would like to believe that reducing the association of weakness with a disability is how we begin widening social spaces for disabled people. My own experience with struggling to be perceived as weak demonstrates just a small example of this. 

I haven’t found a way to disrupt this association because I still live thinking that I am weak every day. What I can offer is a perspective; an experience that is raw, slightly unhinged, but all the while authentic. I don’t have a way to beautify my life or present a final conclusion to my mental hardships. However, realistically, that’s the struggle of internalized stigma. It isn’t pretty and it doesn’t end, but I hope that at some point I can coexist with my disability without being entirely consumed by it. 

MiC Columnist Shania Baweja can be reached at shaniab@umich.edu.