Too Disabled but Not Disabled Enough

By:  Carolanne Link

I describe myself as “semi-ambulatory”, an uncommon term that causes more confusion more than anything.  What this means to me is that, while I can walk certain distances and amounts, I can’t always and my walking ability varies drastically day-to-day.  Therefore, for longer distances of walking or standing (or just on bad days), I rely on a wheelchair.  In our society, we maintain the misconception that all wheelchair users have the same function.  We collectively assume that a wheelchair user can’t use or feel their legs and don’t consider any other possibilities.

In my instance, my disability is congenital (from birth) and I spent my childhood not relying on any mobility assistive devices.  During university, UCLA’s campus was so large and hilly that my body began to stop functioning.  The fatigue on the muscles would strain them and cause them to shut down.  This would end with me not being able to get to, from, and in between classes.  Therefore, for my last two years, I began relying on a wheelchair to get around.  However, I still maintain the ability to walk (and even sort of awkward jog).

I live in this grey area between being able to walk and pass as an able-bodied person and relying on a wheelchair and being boxed into a very rigid definition of disabled on sight.  For me, it’s very stressful because I’m not fully accepted into either community of able-bodied persons or wheelchair users.  For example, I’m too slow and can’t walk far, therefore, I can’t do many able-bodied activities like hiking, sports, even just walking down to Westwood and carrying groceries home without adaptation or help.  On the other hand, I was too able-bodied growing up for anyone to consider that I was eligible for lots of disability-related programs.  Therefore, living in this grey area caused me to miss out on many activities and experiences in both communities.

One thing that saddens me greatly that I missed out on is sports.   I was never coordinated enough, had good enough reaction times, or could run to play able-bodied sports.  It became a huge issue for me in middle school because my teachers were grading me down for not being able to perform as well as the other students.  For the straight-A nerd that I was getting a B in PE for being disabled was a major blow to my already fragile self-esteem.  To avoid this issue in high school, my parents worked out with my academic counselor that PE would be waived for me as long as I did supervised independent exercise.  My brother however, is insanely athletic. He can pick up just about any sport and be adequate if not good at it mind-blowingly quickly.  So I’ve seen him try surfing, basketball, lacrosse, water polo, golf, martial arts, etc.  His primary sport ended up being lacrosse which he currently plays on Cal’s team.  I always went to his games, as a good sister does, but I always lived vicariously through his sporting career.  It wasn’t until UCLA’s wheelchair basketball program that I played any team sport.  I’ve now learned about so many opportunities in para sport and the Paralympic Games that I feel so excited to continue to learn and better myself by trying many different sports.  I’ve enjoyed every one I’ve tried so far:  wheelchair basketball, wheelchair tennis, para archery, para athletics (wheelchair racing), and para swimming.  I spent so long believing that this grey area and not fitting into societies normal boxes of “able” and “disabled” meant that there was nothing out there for me.  But now I know better.   Please remember, that disabilities aren’t just boxed categories and you can’t many any assumptions about people and their disabilities on sight.  Now that I have a better sense of self, my abilities, and the resources available to me, I’ve been able to try and better my life by exploring many things that I thought were just beyond my ability.

 

Originally Posted:  7 January 2020