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.
8 comments:
I have CP. Staring is a common reaction I get. Some people come back for seconds and thirds. I have to ignore it or it interferes too much with stuff. But you know it's happening anyway. I like your blog.
Steve
it's important to educate people about their behavior, even when their reaction to our disabilities may be considered "normal". "normal " is based on our society's take on disability and that's not very healthy. it's sad that going out still means paying such a high price. ( I think you're beautiful. )
I like the person who thought to say, "I like your blog." I forget to mention little things like that.
In our monastery, there's a lot of talk about "simple dress" and a few folks who wear a habit. There's a tension between those of us who think there's a "witness value" in being identifiable as a sister and those who think there are more folks turned off than attracted by that image. A couple of years ago, I adopted some principles of dress that are not a habit - none was given me when I entered - but which have the result that (aside from those with habits) I may be the only one in a dress or jumper on a picnic or hike, and - at work or meetings - I am the only one in long dresses, sensible shoes, and black.
Why bring this up here? In all our tensions - and even my personal guidelines include wearing pants when I am driving cross-country in snow - we have a choice about whether and when to have "witness" value. We can make our identity as sisters more or less visible, as we see fit.
One of the differences I hear reading this blog is the impact of having a ready-made identity card as a person with a disability - and not being able to choose when to use it and when to put it away.
There are times when I have endured some pretty weird looks from folks. People come up in restaurants and ask, "are you a nun?" Some are hostile that I don't have a habit. Some are happy that sisters still exist. But whenever I don't want to deal with that, I put on my corduroy jumper and blend in a little more. A disability wouldn't let me do that.
It would be awfully hard work to be on duty as a witness to the fact that people with disabilities are real human beings, each with their own personalities - 24 hours a day.
Those of you who do have disabilities: thanks for doing that work!
Thanks to everyone for your comments and I'm glad you like my blog. :)
goldchair : Education is the key here. I believe people objectify others who are different which makes "staring" okay - there's a great book called Staring Back which discusses this in more detail. BBC Ouch also does a great top 10 list on how to handle staring.
Sr. Edith- thanks for commenting about your experiences as a "witness" and your choices to do that. I believe that reframing our experiences when we don't have a choice can help PWD - and one way to do that is to seize the opportunity to be educators and witnesses.
Question: In a situation such as you described, is it offensive to you if someone offers to help?
Amber, thanks for the question.
I do run into people who offer help. If I don't want the help, I politely say no. (Sometimes people offer help with things that it's easier for me to do than to explain). I can't speak for everyone with a disability, but I don't take offense from offers for help.
Thanks, Ruth... :)
I hate it when people stare. It's something I can't get used to, especially when it's so blatant. In those rare cases I will ask them what they find so interesting that they have to stare. Circus freak I am not.
Little kids are adorable.
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