44. Being Disabled

I’ve always had a thing about justice. If anyone seems to get short-changed in any way, it bothers me. Unequal distribution of wealth, appreciation, or health has always bothered me. So when children seemed to be getting a raw deal because they learned too fast, too slowly, or too differently, I did what I could to reshuffle and deal again. Over the years, I’ve had children in my classes who were physically, emotionally, or cognitively disabled, and I’ve tried to keep things fair. Other teachers also do this, but there are other important parts of our job, and each of us has different portions of our work that get us to bend over backwards.
I guess justice has a sense of humor. I’m disabled. If you know me, it may be old news to you, but I have been denying it in a way for years. When people have treated me as if I’m disabled, whether sensitively or condescendingly, I’ve thought they’ve been perceiving me wrong. When I’ve had trouble accomplishing a task because of my MS, I’ve thought, “Now I know how disabled people feel.” When I’ve parked in handicapped parking spaces with my handicapped parking placard, I’ve felt strange twinges of guilt. I’ve even had moments of upside-down guilt when I’ve had to use spaces that seemed to be reserved for non- handicapped persons.
Denial is one of the commonly known stages of mourning. When I was diagnosed with “possible MS” in 1978, when it was confirmed in 1987, when I started developing annoying symptoms in 1990, and as my MS has progressed during the past five years, I’ve experienced various kinds of denial: I didn’t really have MS; it was psychosomatic. No, I had it, but all I had to do was find the right treatment strategy and it would go away. No, it wouldn’t go away, but it meant I could retire and do all the things I like to do; nothing I really enjoyed doing required myelin coating on my nerves.
On Saturday, April 22, 1995, as I was driving to the New England Folk Festival, I realized that I really was disabled, that there was a good chance I’d stay that way and maybe become more disabled, and that I was going to a place where I’d be singing, listening, and talking with old friends, but they would be dancing, and I wouldn’t. I was never an accomplished dancer, never what you’d call poetry in motion, but that’s only if you think poetry has to rhyme and have recognizable meter. My dancing was whimsical blank verse, and I miss it.
I’m glad that I did what I could to make things a little more fair for children who have disabilities. I’ve often talked to children about the two kinds of pride – the constructive kind that makes you feel good about who you are and what you do, and the destructive kind that stops you from asking for or accepting help when you need it. I’ve always had a good supply of constructive pride. I’ve also had the other kind, and it’s not easy to give it up. But I have asked for help and received it, and it’s made my life better. Try it. You’ll like it.

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