I’M NOT THE ONLY ONE IN MY FAMILY WITH A DISABILITY. BUT I’M THE FIRST TO RELEASE SHAME

I was 23 when I first heard the words “cerebral palsy” in relation to my disability. Up until then, I had no medical diagnosis to explain why I was physically disabled. My family simply never talked about it. It’s not that my parents denied the reality of my disability; they just wanted me to feel as normal as possible. While my friends’ parents drove them to dance classes, gymnastics, and soccer practice, my mom took me to physical therapy three times a week. Though I knew my friends did not go to physical therapy, I began to think of these appointments as my extracurricular activity, my form of athletics. 

When I was fitted for my first pair of leg braces at 4, I chose hot pink. “Are you sure you don’t want them in clear,” my mom asked. “No,” I said, confidently. Hot pink was my favorite color, and I was going to make a fashion statement. By the time I was in kindergarten, I was no longer as bold; I went with the clear plastic. I slowly began resisting wearing dresses or skirts where my knee-length leg braces were visible. I didn’t know it at the time, but the voice of shame was beginning to make its home in my mind.

Up until a few years ago, I only used a wheelchair for long distances. As an elementary school student, I had one with me in case I ever needed it. But most of the time, I pushed it and used it to carry my backpack. Occasionally, my friends and I took turns riding it down the hill at recess, until the teachers witnessed someone getting launched from it at the bottom of the hill. When I moved to a new state, just before high school, my physical therapist discouraged me from using a wheelchair and gave me a walker. Most of my new friends never saw me in a wheelchair since I no longer used one at school, church, or youth group. I grew to fear my peers seeing me while I was out shopping, one of the few occasions I would use my wheelchair. If I ever spotted someone I knew, I had a plan. I would divert attention by telling my mom — or whoever I was with — to look at something away from a possible friend or acquaintance so I could go unnoticed.

Everything changed in 2021 when I began to learn about the Disabled community and Disability Justice. I discovered an entire community of people on social media who were openly displaying their disability with vulnerability and pride. It was also when I first heard the term “internalized ableism,” and realized that like many disabled individuals who grew up in a society that views disability as abnormal, I had spent my whole life holding onto negative feelings about my disability. Finding other people who shared similar experiences and seeing how they were living full, free lives with their disability — not in spite of it — allowed me to begin my journey of confronting the shame I held. This included being honest about where it came from.

Disability is not new or unfamiliar in my family. There are a few members of my family with disabilities. The difference between them and me and my cousin with Down syndrome, is that the rest of us don’t know their specific diagnoses. My maternal grandmother, especially, would not speak of illnesses or disabilities, even though her brother had an intellectual disability. If a family member or close friend learned they had a serious illness, like cancer, my grandmother would refer to it as their “problema.” This unintentionally created a family culture of concealment surrounding disability and illness. Instead of treating them as normal parts of life, we treated them as things to overcome or hide.

Just how much this culture permeated my family became most evident to me in the summer of 2022. I was planning a trip to Brazil to visit family I had not seen in a long time, but I particularly wanted to spend time with my grandmother, who moved back in 2021 after an ALS diagnosis. She wanted to live out her last days in freedom. 

I was excited for my grandmother to be back in her home country, surrounded by a community that could help her get back to doing the things she loved, like going to mass. I also pictured her sitting on the veranda, soaking in the sun, as she chatted up anyone who passed by her. Yet when I arrived in Brazil, all I saw was a woman unable to come to terms with her disabled body. Instead of living in freedom, my grandmother sunk into humiliation and depression. 

My grandmother had not left the house for months. Once she could not physically walk up the ramp at the local church, she refused to go. Before my grandmother left for Brazil, we asked her doctor to put in an order for a wheelchair. The wheelchair remained stored away from my grandmother’s sight until her passing in early 2023; she refused to look at it, let alone be seen in it. While family and friends stopped by regularly to visit her, she rarely engaged in conversation and spent a lot of time looking down. Though I could see that my presence made my grandmother happy in those days, my heart broke because I couldn’t do more to help her release her painful emotions and make the most of the time she had left.

Though I couldn’t help my grandmother find joy and freedom within her disabled body before she passed, I know I still have a chance to help the next generation in my family. My little cousin is disabled. Like me, she cannot walk unassisted. Though her parents have never shared her diagnoses, she also presents behaviors in line with Autism. She is still too young to realize the stigma that hovers over her like a cloud. She doesn’t know that her parents’ refusal to accept the wheelchair I’ve outgrown is a denial of her freedom in her disabled body. But one day she will be cognizant of all this. 

I want her to look at me and see that the shame of generations before us does not have to be our shame. I want her to know that our disabilities are our strengths and that by releasing hurt and humiliation, we make room for empathy for ourselves and others who also face oppression and shame. My hope is that by liberating myself, I am paving the way for her liberation. I hope she inspires the next generation. More than anything, my dream for her is that she can grow up to be proud of who she is, not in spite of her disability but with it.

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2024-03-26T17:47:10Z dg43tfdfdgfd