Monday, February 07, 2005

A Leap

So it turns out that I'm going to be "facilitating" a group for parents of children with disabilities at a local store that caters to new and expectant parents. I am very excited about it, though I find this amazing, considering who I am and who I've been.

I was raised by a tolerant mother and a bigoted father in a really bigoted small town. Despite all the pressure, I grew up believing that there wasn't anything wrong with being gay, that there were no inherent differences between the races, and that women could and should do anything that men could do. I'm not perfect--no white heterosexual ever really is, I don't think-- but I really try. The issue of disability never really came up. I look back now and shudder. I was perfectly nice to the boy in school with spina bifida who needed crutches and braces for walking. But the "slow" kids? I had no use for them, though I was no worse than any of the other kids (not that that is an excuse). My best friend grew up into a social worker working with adults with developmental disabilities, and had to force me to go along with her to group outings, because the people she worked with made me uncomfortable. I still don't know why...fear, maybe? The fear that something could happen to you, or to someone you loved? But her whole point in bringing me along was to show me that these people were happy, had fulfilled lives, and there was nothing to be afraid of. I couldn't deal with it. I couldn't deal with a friend I had with a degenerative back disease that would leave him in a wheelchair in a few years. I thought having a disability was something that was worth ending your life over, and the idea of having a child with a disability even worse.

Then I had Peanut, and the knowledge that she would be considered even partially disabled hit like a brick. I still have to remind myself that she will have enough limits placed on her by others that she doesn't need me to add more, with my stereotypes and fears. I thought I was getting over this, had become more enlightened and left a lot of that ignorance behind, when something happened recently that made me feel ill.

T. and I were having dinner out a few months ago. I saw this woman, by herself, sit herself down into one of those electric carts used by people with mobility issues that don't need wheelchairs. She pulled up to our table (it was near the door), and started the uncomfortable chatting that strangers sometimes start in enclosed spaces like buses or subway stations where you can't get away and all you can do is nod politely and hope they find someone else to talk to. I sat hoping she'd just go away so we could get back to our meal. Watching her pull her coat on and maneuver out the door, I realized that she was very stiff, and that was probably why she was in the cart. And then it hit me: This could be Peanut someday.

This woman was alone, eating dinner in a rowdy tavern. I am fully aware that there might be lots of good reasons why she was alone, but I thought to myself, if she were dressed well and standing there, saying the same things to me, would I have been so uncomfortable? The answer was No. She was complimenting us, for crying out loud. She was saying to my husband what a lovely date he had, how we looked very happy together. She said I had beautiful eyes, and that she hoped we enjoyed our meals. I assumed she was crazy because she was in that cart, and for no other reason. Had she been standing there, I would have assumed that she was waiting for someone. I would have been embarrassed by the praise, but probably come away from the encounter feeling good. But I was uncomfortable with her because she had a disability. And someday it could be my daughter, having people around her shuffle around and try to avoid her eyes. And it made me ill not just to realize this, but to realize that it took having a daughter with a disability to recognize this about me, about so many other people.

This is why I don't usually jump on people when they say things to me that are hurtful when it seems to come from ignorance rather than ugliness. Because I know that I'm no different. I know I have said and done things, thinking I was being perfectly enlightened, that were awful. I am thankful the people I said them to were kind enough not to jump down my throat, though I wish they'd educated me a bit more. But I imagine it gets a bit tiring to do all that educating all the time--I know I'm starting to reach my limit.

My friend Dana once talked about the problem she had with people who told her they only had problems with "ghetto" black people, just like they had problems with "white trash". The problem is that while she might be one of the "good" black people in their eyes because they know her, she is just another nigger to people like that who don't know her. While that woman was some crazy lady to me, she was someone else's daughter, probably loved just like Peanut is loved by me. The fact that I couldn't get that until I was thirty-one years old is appalling to me.

So me being in this position is interesting. I imagine I am not the only parent who has had this kind of epiphany. Maybe because I've surrounded myself with such truly non- judgemental people since I moved out of my hometown I am holding myself to an impossible standard and need to give myself a break. I don't think so--my daughter will never get a break from who she is. I do have to remind myself that this is all a process, and the important thing is that I'm learning as I go along and I am trying my best.

I'm sorry, I'm still not writing anything funny. Maybe next time I'll try a knock-knock joke or something...


Jen said...

Well said.

And you may be 31 and facing this now, but isn't it better than never facing it at all?

Anonymous said...

And frankly, disability is different from other identity issues, because unlike with race or gender or most anything else (with the possible exception of sexual orientation), we could, any of us, become disabled in an instant. It's why disability activists call "non-disabled" people TABs: temporarily able-bodied.

Most people I know are afraid of disability in one way or another, and the truth is that, stereotypes aside, being disabled makes things harder. Not necessarily harder than someone else's life, but harder than you would have had, with your own race and gender and class and orientation and age and .... Is it right for us to be discriminatory or avoidant or whatever? Well, no. But give yourself some slack, even as you work to make it different.

There will be things that will be hard for Peanut, but there will also be great joy, and things that are valuable to her about her own experience. And disability activism continues, and will continue to make a lived difference in the lives of everyone.

And really, congratulations for recognizing something really hard about yourself. We're all better for it.


Carrie's Mom (and damn proud of it) said...

Surely you realize that there are far more people who feel the way you used to than there are people who have become "enlightened".
Guess what, dear daughter? YOU get to be the "emlightener" - as only a former unenlightened person can be.
You can speak to their fears because you've been there.
This is better coming from you than from someone who is oblivious to (or worse, condemning of) the difficulties most people have dealing with disabilities.
It's truly a shame that when you were in high school, the physically disabled kids were sent to another school. These days, thank goodness, they're part of the regular school population, as they used to be in my day and while there are still cruel teenagers, many of them are - or quickly become - remarkably "enlightened".