I mentioned earlier that I grew up disabled. I had my first surgery at age 4 on my legs. I was in a body cast - a cast from my chest all the way down to both sets of toes - for 2 months. After that, I had 1 - 2 surgeries a year for the next 12 years, all on my legs except for scoliosis surgery when I was 13. I used a wheelchair, a walker, wore braces for a little while but most of the time I used crutches, the wooden kind that go under your arms. My mother encouraged me to get up on them as soon as the doctors said I could. I remember I used to get really irritated because I loved sweaters and the crutches wore out the armpits of all my sweaters! When I wasn't in the hospital or sitting in doctor's offices, my life was a normal as possible. My mother enrolled me in programs for things I could do such as art and music while my sister was horseback riding and playing tennis. I was never called disabled or handicapped and I never met any other disabled children. I never received any counseling and my mother forbid me speaking to any of the social workers or counselors who visited when I was in the hospital! I simply thought of myself as a girl with a rare bone disease.
The first time I really realized I was disabled and understood what that meant was in the Fall of 1990. I had graduated from college that past May. I moved into Manhattan and got an apartment with a friend from college and a job as a paralegal. I was struggling inside, though, something nobody else knew because I was raised to face the world with a smile and a positive attitude. But during my junior year of college my mother suffered a severe stroke completely altering her personality. I had a lot of issues with my mother but she was the rock in my life, the person who stood behind me and told me I could do whatever I wanted (within reason). I was floundering without her support and guidance. As a result, the apartment I was living in was a 2nd-floor walk-up in a brownstone. That meant several times a day, my crutches and I were climbing many flights of stairs. (with McCune-Albright Syndrome (MAS) the diseased bones are weaker than similar normal bones so a lot of wear and tear wasn't a good idea for me!).
On this particular day, when I left work in mid-town I decided to take the subway to my upper eastside apartment since the public bus crawled up 1st Avenue and took up to an hour to get me home. I knew the subway would have me home in about 20 minutes. There were two or more flights of stairs down into the subway but going down stairs with crutches is much easier than going up. So I took the stairs, pissed off a few people who wondered why there was a line to get down into the subway - that was my fault, the slow poke using 4 legs instead of 2 to get down the stairs! I got myself a seat in an air-conditioned subway car and within 20 minutes was getting up and off the subway having arrived at 96th Street.
I walked to the exit and looked up at the longest, steepest flight of stairs I'd seen in a long time. I let the other passengers go first and then I took a deep breath and started climbing. It wasn't fun. By the time I arrived at the top of the stairs, I was out of breath, panting, sweating profusely, my glasses sliding down my nose and, not only were my legs aching but my arms hurt which was unusual. I sat down on a nearby park bench to catch my breath and try to figure out what had just happened. It hit me hard and suddenly - though I think deep down I knew it but had never spoken it out loud - I was disabled. I sat there thinking about the word, thinking over my life, wondering what was wrong with me that I'd never realized this. I felt dismay one second elation the next thinking, wow, look how far I've made it and back to dismay again. I finally got up and began walking the several blocks to my apartment feeling different, more self-conscious, confused, unsure what to do with this realization...
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