For a while now, I’ve talked about being able to voice what I need as I live with a disability. It’s a concept I’d otherwise call self-advocacy, which is merely the action of representing oneself or one’s views or interests. I didn’t always practice self-advocacy. When I was an infant and later child, my mother was my advocate. She navigated through my early intervention and through my overall medical care. It goes without saying that I am forever grateful to her for not only always supporting me, but for also teaching me self-advocacy.
Self-advocacy didn’t truly come into play until I got to college. I was determined to get out of New York City and go away to school, in order to grow and be highly challenged. For me, going away to school didn’t just mean being away from home. It meant leaving my comfort zone. It brought up questions like, how far away from home would I actually be? I didn’t have a car, so how would I get around in a more suburban setting? What if I needed help doing my laundry? (Not actually doing it, just lugging the laundry basket back and forth). How was I going to get food and carry plates back and forth in the dining hall? How was I going to shower safely? Basically, how was I going to make sure I had everything I needed?
Part of my on-boarding to college was getting acquainted with their equivalent to Disability Services. I had to register, fill out lots of paperwork requesting accommodations, provide documentation of my disability, and meet with the Director in order to put my accommodations in place. It was a multi-step process and required me to be vocal at all times. There was nobody advocating for me but me. It taught me to shatter certain boundaries I hadn’t faced before. It taught me that while my family would always be there for me, part of being an independent adult is having agency and autonomy.
Though self-advocacy definitely equipped me for success in many aspects, it didn’t mean college was a breeze. There were many challenges, like fighting against the bureaucratic red tape in order to make the campus itself more accessible. Part of that fight was raising awareness about physical disabilities and how some actual spaces can be extremely limiting and excluding. Though many a time the exclusion was obvious (like a prominent campus building not having an elevator), sometimes it was so subtle others didn’t realize it.
I once pointed out to a physically non-disabled classmate that although the newly renovated science building had accessible bathroom stalls, there was no accessible way for neither a wheelchair user nor someone on crutches to actually enter the bathroom. Thus the door became a barrier. The classmate admitted to me that she never thought about it that way, but that I was right. This is a very minute example of raising the level of disability consciousness, which I speak more about in my post about access.
Even though going away to college was challenging at times, I’m glad for the challenge. It allowed me to be very resourceful, self-sufficient, speak up, speak out, and finally discover myself. As corny as that might sound, it is undeniably true. I never wanted to rely on others to get by, unless absolutely necessary. In a very real way, being on my own for the first time helped me realize that yes, having support from those around you is important, yet I knew I also needed to find that support within myself.
The Spastic Diplege 