Spinal muscular atrophy (SMA) has always been a part of my identity, but it has only recently become a source of pride. Reflecting on my relationship with my disabled identity, I see how ableism slowly seeped in, contaminating my views on SMA pride.
As a toddler, I did not know many people with SMA. For all I knew, my sister and I had SMA. I do not remember thinking positively or negatively about that through preschool age. All I knew was adults found it delightful when I explained my disability to others so matter-of-factly.
Read more about SMA diagnosis
For the sake of understanding my journey during SMA Awareness Month, I have created a pride scale to label phases in my SMA pride life on a scale: from 1 to 10, with 1 being horrible, 5 being neutral, and 10 being disabled euphoria.
Preschool Kat’s SMA Pride: 5
In elementary school, I started attending the Muscular Dystrophy Association (MDA) summer camp each year. This quickly became my favorite week of the year. It was where I met some of my best friends, to this day, and where I was surrounded by awesome disabled folks. For the first time in my life, I was not the minority. I did not have to explain my disability or needs, and I felt like it was cool to have SMA. Though the majority of the year, I was 1 of 3 wheelchair users in town where ableism was rampant and unacknowledged, this yearly week immersed in the disabled community with other SMAers indeed increased my acceptance, understanding, and appreciation for having SMA. This lasted through 12 years of age or so.
Childhood Kat’s SMA Pride: 7
As children start becoming teenagers, life can feel a bit dicey. I was fortunate to grow up with a small group of close friends who knew I had SMA and needed help with certain aspects of life. It was pretty normal for them to lift my head when it fell, hand me school supplies or my lunch, and even help me cough. I knew most of their families and parents were fine, if not encouraging, of our friendships. In our town, multiple elementary schools were funneled into 3 middle schools, which then funneled into 2 high schools.
This meant that my best friend and I went to different middle schools and then the same high school. It also meant that there were new kids to mingle with, resulting in shifts in friend dynamics. In addition to shifting friend groups, prepubescent hormones, and natural changes in personalities as children and early adolescents is a time when social interactions often involve activities that were not easily accessible to a wheelchair user. Bike riding, pool parties with adults on the outskirts, surfing, dance practice, and sleepovers where parents were not involved in the activities slowly became more frequent.
Some of my peers made efforts to include me in the ways that I could participate, and a couple of their parents ensured I was included by providing my physical care, such as helping me use the bathroom, transferring me, building a ramp, or even carrying my wheelchair (and then me) up an entire flight of stairs. Though I was not overtly excluded or bullied at this time in my life, I started feeling left out because of having SMA. I had no representation of disabled adults in any form of media or in my personal life, and I, like most tweens, just wanted to fit in. For these reasons, I started trying to be “more than my disability” and distanced myself from just about everything that associated me with disability (except for camp).
Angsty Tween Kat’s SMA Pride: 2
High school is a blur for me. I took a rigorous academic course load, as being a “smart kid” was the part of my identity that felt the best to lean into. I was proud to be a nerd and knew that getting accepted into prestigious universities would give me opportunities to live in different places.
For the most part, I immersed myself in nerdy spaces, which made activities more accessible to me. I could study, debate, write, read, and discuss anything from movies to world affairs in most settings where these activities occurred, all without much need for support or accommodations. My mom found young adults to travel with me on class trips or conferences, so I was able to participate without feeling like I had a parent or caregiver tagging along. There were still times when a peer hosted an event at an inaccessible location or friends would not invite me to a late-night hang for accessibility reasons, but I think this was the timeframe where I wouldn’t say I liked SMA a little less.
I started directing more of my care, reconnecting with SMA friends, and connecting with the adult SMA community. The connection to the virtual SMA community allowed me even to consider moving out of state to pursue my education at New York University. It also gave me the resources and confidence to live independently, date, and work full-time.
Emerging Adult Kat’s SMA Pride: 6
Over the past 8 to 10 years, I have become more confident in my disabled/SMA identity. Part of that is growing up and learning what is important and what is not. It is also the result of reading about disability/ableism, seeing disability representation, participating in the community in real life and online, the death of my sister and the absence of having someone who truly gets “it,” therapy, and raising a disabled child whom I want to feel disabled joy throughout his life.
There are days when I wouldn’t say I like SMA and having to rely on others. Overall, though, I would say my SMA pride is at an all-time high.