Some people really don’t know what to do with paralysis. Many don’t understand its variations or how it affects your function. All they see is a wheelchair- and that doesn’t really offer a lot of information about someone other than that he or she probably can’t walk.
My paralysis affects all four limbs – both arms and both legs. Sometimes people assume I’m a paraplegic because I’m in a manual wheelchair – that is, until they see me try to do something involving my hands. At that point, many do a double take initially – a very visible pulling back. Some people turn away. I’ve seen people who cry.
At first, this upset me a great deal. I would go home, look in my mirror and check to see why people were reacting that way to me. Then I realized that it always happened the same way – they thought they had a handle on my paralysis because I was in a wheelchair and couldn’t walk. Then they saw that it also affected my arms – and they had a second reaction.
Anyone reading this can tell by now that these reactions weren’t- and still aren’t- helpful for me. In fact, as I adjusted to my disability, these reactions were a horror show for me. Now that I have some perspective on my paralysis, I deal with this type of behavior more easily. I still don’t like it, however. It makes me feel as if I’ve just landed in a tacky horror movie – the kind where a “monster” walks through town and everyone flees to the left and right.
[visual description: Huge monster walking through city streets.]
I can understand that someone might be startled by seeing that I’m paralyzed from the elbows down when they’ve assumed I’m not. I certainly do things in different ways. For example, when I’m at Barnes and Noble and want to see a book, I take both arms from the elbow , hit the book until it’s freed from those around it and then jab at it until it falls in my lap. I then put my arms under it, flip it over with my elbows and check out the back book jacket – because I can’t open the book without an assistive device to look inside.
The other day I was in the bookstore going through this routine when I noticed a boy, who appeared to be around 10 years old, watching intently. It took me awhile to get at the book and when I finished, he looked over and gave me a thumbs up. Mission accomplished. Kids are great.
On the other hand, I noticed that there were a few adults around who stared blatantly. Don’t get me wrong – I do understand that this is not something you see everyday. But it’s the only way I can check out books. Until I win the lottery and can afford to take a personal assistant with me, I’m out alone as a quadriplegic with lower arms that don’t work. I feel very strongly that I have to put function over – well – beauty. If people choose to cast me as the “beast”, so be it.
When people stare at me, it sometimes interrupts my reverie. I am learning to ignore it. Perhaps to them I am in a tacky horror movie.
But this is my life. And much of it , to me, is full of beauty.
Copyright 2007 Ruth Harrigan