Growing up Handicapped
Above: Photo © Eliza Alys Young, Crib, Pediatric Ward
I have always hated the term “handicapped”. It is one I have heard a lot. Disabled is worse but they both imply that it means you are less than are full “able” person. “Physically challenged” is the politically correct term now. Normally I don’t give a fig about being politically correct but I can say from some who has had all those labels applied to, including the worst one “crippled”, that physically challenged is the best. Because truth be told, that is how one in that situation feels: challenged, not unable, not weak, but it takes more effort to do the same things.
I was first hospitalized at 3 months. Between that time and my 17th birthday I had over 18 operations. I don’t know the exact number because some of my medical records got lost. My operations were orthopedic (bone related) and at that time hospitals kept you as an inpatient for a long time. I would always go in for months at a time. The longest stay was close to a year.
I don’t think about it much anymore. For so much of my life the hospital was a second home but other than when my children were born, I haven’t had to stay over in the hospital. That part of my life seems a distant memory. Today I walk with a limp but I still walk, dance, ride a bike — lots of things — so I just adapt to my challenges and move on with my day. But recently I have had these memories stirred up. You see, two weeks ago, my 11 year old son fractured his ankle. He was given a cast and crutches. Ah the familiarity of these items was palpable.
At first it was just fun to show him how to use crutches. To tell him stories about my life. But it was when my son went back to school that a particular memory just shouted to come forward.
My father kept me out of school for 6-9th grade. This was because I was in an out of the hospital for extensive surgery and was often on crutches. He was afraid of putting my in the local school in that condition so he had me follow the lesson plan of the school in the hospital. The hospital was the Alfred I. Dupont Hospital for Children (AIDI) and it was endowed so if you qualified on their income guidelines, the treatment was free. We did.
At AIDI they were able to lengthen my right leg to nearly match my left, a major improvement. The procedure was in various stages and took several years. By the time I went back to public school in 10th grade, all my major surgery was done. I just had a plate in my leg where they had lengthened it and new bone was growing to fill the gap. In the summer between my sophomore and junior year of high school, I went back to AIDI to have the plate removed. They said I was to be on crutches for 6 weeks. The whole thing was planned so I would be done before I went back to school.
I went back for a checkup at 4 weeks and the young doctor attending told me that since I would be walking without crutches soon, I could start putting some weight on it. Big mistake. When I went back at 6 weeks thinking I’d be off crutches, they did x-rays and spotted a hairline fracture in my new bone. 6 weeks became 6 months. I now was going to be on crutches when I returned to high school. I was mortified.
It was bad enough that I was a good student, the pride of my teachers and the scorn of my peers. It was bad enough that I didn’t walk normal no matter how hard I tried. It was bad enough that I was painfully shy. But now I had to walk into school… on crutches.
My father was terrified of me traveling on the subway on crutches. Now, as a parent, I understand, but back then I scoffed at his fear. NY was no playground back then. Guiliani had not yet swept through the city and cleaned it up. Times Square was still a seedy pit of peep shows and porn shops. Harlem, where my school was located, was still un-gentrified and quite dangerous for a slight blonde girl, crutches or no.
Still, I was determined to go to school despite the humiliation of crutches, because school was my sanctuary. My father was overbearing and egotistical. Combine that with teenage years and there was no way I was staying home. So my father’s solution was to get me picked up by a “special” bus. The quotes are intentional. This was a bus not for people like me, temporarily on crutches and by all intensive purposes only mildly physically challenged, no this was a bus for the severely handicapped. I was picked up first and then the bus slowly made its way, stop after stop, to pick up each child. All were in wheel chairs. Some drooled. No one talked, I don’t think they could. Each stop was painfully slow.
The bus door slowly opening, the motorized lift going down, the struggle to place the wheelchair on the lift, the motorized lift going up, the struggle to place the wheelchair securely on the bus and then, finally, the doors closing and the bus pulling ever so slowly away. I’m not sure how many stops there were, 5 or 6, but it might have been 100 for how it felt. Can you just imagine how miserable I was, at 16 with all that means — the desire to blend in, to be normal, to be liked — and here I was on this bus with kids who were as different from me as aliens it felt? I say this with love in my heart but I was not like them. I could walk, talk and do things. I never thought of myself as limited. To me it was no different than being overweight or having diabetes, or all sorts of other things people had to deal with. My legs weren’t normal but they still served me well.
I was on that bus for over a month. It wouldn’t get to my school until about 30 minutes into first period. My teacher, who loved me, they all did, kept a seat free for me right in front. I would enter, embarrassed and my teacher, bless him, would guide me to the seat all smiles. Little did he know he was making me feel worse by all the attention. For all the operations, casts, crutches, wheelchairs, the whole bit, this was the most difficult time I can remember in terms of my legs not being normal. Because, when it came down to it, everyone knew that I didn’t just break my leg and was on crutches. It wasn’t cool. I was not normal and the crutches just reminded everyone that I would never be.
One day I missed the bus, that awful bus. Not intentionally but I still missed it. My father wanted me to stay home but I was going dammit, I was going to school. That I did. I understood his fears but I was determined. I made it and from that point on I never took the bus again and was actually on time for school.
I realized as I recounted this time in my life that while for most people, being on crutches was limiting. I was not happy to be on that for sure but in many ways, I felt more power on them then off. This was because my legs weren’t normal so I couldn’t really run but on crutches I could go fast. So I never let them get in my way, and in doing that, I realized how much I really have in me.
Seeing my son on crutches was a very different thing. Thankfully he has not experienced even a wink of what I have. For him the crutches just hold him back and that is as it should be. For me, well, I believe we live the life we are given and I have no regrets. People wonder where my strength comes from at times but I don’t. I know where.