Thursday, December 13, 2007

Why I Conceptualize Myself as a Person With Disabilities

Yesterday, I was reading the writings of a certain someone who really needs to create a blog so that more people can have the opportunity to hear what she has to say. *cough*Salspua*cough* Anyway, she she was talking about how we each form our self-concept and how that concept of self works to reinforce what we want to believe about the world. We were discussing it in the context of rape but it made me think about myself as a person with disabilities (PWD).

Over the years I've had the chance to see a lot of the assumptions that people make about how cancer should be seen. We're supposed to be fighting it, trying to overcome it, and, whenever possible, putting it behind us. People--some, not all--seem to think that the best, most emotionally healthy thing to do is just try and forget that we have cancer. If you have to take medicine every day, then you should just hurry up and take it and then pretend like it didn't happen. If you have to have your breast cut off, then you hurry up and get plastic surgery so that you can look "normal" again as quick as possible. Cancer is supposed to be so horrible that it just can't be considered "normal".

Talking about my cancer all of the time gets interpreted as some sort of psychiatric issue that needs to be fixed. Why do we have to pathologize everything in this culture? Any deviation from the culturally-approved standard must be eliminated. Some people are just so threatened by those who think differently.

I can understand why someone might feel threatened in certain situations. If I'm standing over someone with a bat in my hand and it ain't baseball season, I don't think it's unreasonable for someone to wonder if I might be about to hit them. However, if I'm a person who has cancer, I don't think that I should just not talk about it because some folks are uncomfortable when I do it.

So, you know, I've become pretty assertive about it over the years. I don't WANT to blend in and I know it's partly because society tries to force PWD to blend in or stay out of sight. I know that I often have the luxury of being able to fit in with the non-disabled people but many PWD don't even have that option. Identifying myself as disabled even when I don't have to (e.g. situations where no one would look at me and assume that I have any disabilities) is my way of showing solidarity with those who can't choose to blend-in. It's also my way of showing that I consider my cancer to be a part of who I am, just like having brown hair, a pointy nose, and small tits are also parts of who I am.

But what if I didn't have cancer or lupus or asthma? How would I conceptualize myself? My disabilities have been a part of my life for such a long time that I'm not sure who I'd be if I wasn't a PWD, so I guess I have a lot invested in that being a part of how I choose to present myself to the world. If all my disabilities disappeared tomorrow, my place in society would change. Would I still feel like I am a member of disability culture? I mean, maybe I could still be a part of it, but would I still feel like I am a member of it?

That culture is important to me. It's just as important to me as my ethnic cultural ties and the bond that I have with other women. And if I were no longer a member of disability culture then I'd miss out on so many things that matter to me: the camaraderie, the support, the humor, the advice.

How would I have made it through without all of that? I can't even imagine it. The thought of having to do so is just too scary. Perhaps I'm so afraid of having to do all of this without the support of my disability culture that the incessant identifying of myself as a PWD is an attempt to remain firmly within it. Maybe if I didn't say it so much, other PWD would see me as one of those who don't want to be a member of our culture. That impression would definitely change the sort of interactions that they had with me, I think, and it would definitely change the type of support that they felt free to express.

I mean, I know folks who have just as many body issues as I do but they still don't want to be considered a PWD. I'm not going to make a "I'm feeding my tumor" kind of joke at a dinner table unless I'm with folks who have chosen to be a part of disability culture. I'm just not. It's not out of shame. It's because I don't want to make things any harder for folks who may have a disability but are still trying to decide whether they are comfortable with it or whether they see it as something that's significant in their life. I don't want to say something that may remind them that they are disabled if they are dead set on forgetting that they (often? sometimes?) feel disabled by society.

But when I'm among my folks, I can make my cancer jokes and they'll definitely be laughed at. I suspect it has nothing to do with the content or delivery of the joke; it's a laugh that signifies support and belonging*. And that's something that one doesn't necessarily experience outside of that context. I'm not saying that disability culture is always perfect but those who choose to be a part of it can make the conscious decision to provide each other with the nurturing that we've made it clear that we're open to receiving.

My feeling is that I'm not going to wait for someone to designate support zones for PWD. I'm going to create them myself. I want anywhere I am to be a place where another person with a non-conforming body knows they can receive support for who they are without being forced to pretend their disability doesn't exist.

I remember when I first got diagnosed with lupus. I searched all over the place for information about how to deal with it. I wanted to talk to other people who were familiar with it but I didn't know any besides my doctor. I remember how happy I was to find the forums on the old Lupus Foundation site. A lot of people there didn't even talk about their lupus, just random stuff about what was going on in their lives. One woman didn't have lupus but her beloved cat did. That was okay too, because it was a place where a person could talk about it all day long, every single day if they wanted to and not have to deal with someone trying to tell them that they should shut up about it or talk about something else.

These days, there are more places to turn to if you have lupus. However, try having chondrosarcoma and see what happens. See how easy it is to find support groups for that! In all likelihood you won't be able to find even one person in your city with it. Hell, you may not be able to even find another person in the same state! Given that dearth of support, I think it's pretty important for me to talk about it in the hopes that someone who may be looking for it will find it. Seeing myself as a PWD motivates me to keep at it even when people complain. It makes that lack of information an important issue to me because, as a PWD, it's important for me, too.

Perhaps the way I conceptualize myself as a person with disabilities also has to do with the fact that, I can't escape the constant physical reality of those disabilities. Even if I wanted to, the pain, the medication regimen, the flare-ups, would make having disabilities something that I can't ignore. But I can choose to embrace them. And given the fact that I there are so many things (about having disabilities) that I didn't choose, maybe I talk about it all of the time in order to feel more in control of my life.

I don't know. These are just some thoughts I've had about why I see myself as a person with disabilities and how it affects my interactions with others.

*The annual Celebration of Life that I attend is held in a big Catholic cathedral. It's so solemn that it's the sort of place where you whisper even without being told that you need to. Hundreds of people attend it. At the event three years ago, one of the speakers was a woman who had rectal cancer. She joked about a supportive phone call she'd received after her surgery. Her friend called her up and asked her "So, how's your asshole doing?" and she replied "Oh, he's fine. He's just sitting her next to me, reading a book" as she looked at her husband.

The entire audience laughed at her joke and her pluckiness for repeating it from the front podium of the cathedral. Even the priest smiled.


cripchick said...

bint, i love you and am sooo glad to call you my sister in the disability community. your post puts everything i feel everyday into words.

Kay Olson said...

I am firmly in the Visibly Disabled and Cannot Pass as Otherwise Camp now and have been for some years, but these thoughts about passing or choosing to identify for the solidarity are certainly familiar to me. So is the lack of any support group for my specific diagnosis -- I gave up years ago in finding even one other person with sarcotubular myopathy, let alone a support group. It may not have even been a correct diagnosis, though close. And now, it just doesn't matter any more. There's no treatment to anything similar and I get to identify on a larger scale with a greater number of people sharing this culture of ours anyway.

I know that a lot of people think this identifying as disabled and celebrating our culture is wallowing or delusion to the harsh realities that would have to make identification a completely negative experience. I'm sure it would be seen as a hostile gesture, but I always want to say to those people, with true kindness, "Wait. Just wait."

Master Goldrocks said...

Bint, I know that many people with disabilities lives in this world. Your article can be a strong and great motivator for them. The life must go on. Keep your track, Bint. :)

Salspua said...

You soooo rock!

If we had dinner together, I would appreciate an "I'm feeding my tumor" comment. I could ask you if it likes onions. I am very much about being real and appreciate it when people are at liberty to be honest about their realities.

And thank you for the encouragement. Your blog inspired me to start my own a few weeks ago. I'm not on line every day. I need to write more. Work is sucking my soul. Maybe I should write about that, too...

big hugs~~