What does it mean to be disabled? Is it different than having a disability? What does it mean to view ourselves as such, and is that different from how the world views us?
These questions came to mind after a recent online discussion with my Facebook friends about Oscar Pistorius, the Olympic athlete who recently became the first amputee to participate in both the Olympics and the Paralympics. It really got me thinking about disability and how that word might mean something different to each of us.
Personally, I consider myself to have a disability, but not to be disabled. In my mind, being disabled would mean that I have many disabilities and am unable to work. A disability can be “anything that…puts one at a disadvantage” (according to dictionary.com). Well, I have Marfan syndrome and that does put me at a disadvantage because I cannot participate in all the activities I’d like to and I’ve needed to use some accommodations in school.
I think there is a misconception that identifying as having a disability or being disabled means that you’ve given up, that you don’t see yourself as anything other than your illness or injury. This isn’t true for anyone I know, though! I believe that I can do almost anything I want to do. Having Marfan syndrome hasn’t stopped me from being a wife or mother, getting my Masters degree, volunteering, writing, or doing most other things. My body has a different set of rules and I have to respect those — so I might accomplish my goals in a different manner than others — but acknowledging my limits is not the same as giving up or giving in.
I am vocal about having a disability because I don’t want other people defining what having a disability means for me. Whether you’re active most days, or spend most of your time in bed, you have the right to define that for yourself.
So…is having a disability different from being disabled? What does that mean to you?
Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and theSensory Processing Disorders Blogger Network.