Monday, March 26, 2007

Living With Disabilities In Both Poor and Affluent Communities

BFP raised some disability related questions on her Woman of Color blog about the differences in how people with disabilities are perceived in different environments. In it, she wrote about her own recollections regarding the way people with disabilities were treated

From what I can remember as a small child–there was no pity for anybody in our community–something that I’ve read a lot disabled people commenting on in the blogging community. Everybody’s life sucked, and you just dealt with the best way you could.

and

In fact, it often went the other way–where people were unduly harsh on disabled people–Often times, survival depends on a persons ability to contribute to the family, so if a person with a disabled leg can’t walk, s/he better figure out a way to crawl mighty quickly.

I started responding to her there but it got too long so I figured that must mean I had enough to say about it to create an entire post. So here's my take on things. Okay, I've been dirt poor and I've been "comfortable" and I've been disabled my entire life even though I wasn't always read as a PWD because schizophrenia can be an "invisible disease" if you're able to get medication and therapy and all of that stuff that poor people often can't afford.

In my own family, there really wasn't any pity for those with disabilities. I remember once when I was hospitalized because a medication adjustment. A lupus flare-up had prompted my doctor to double my prednisone dose in order to try and get it under control. This increased amount of the drug triggered a psychotic episode and I was admitted to the mental ward of the hospital for a few weeks while they dealt with both the lupus and schizophrenia. When I got home, no one was sympathetic at all. My older brother sarcastically told me that it must be nice to get to drop out of life and have a little vacation. Similarly, my mother's attitude was that we all have stuff wrong with us but that's no excuse for not holding it together and leaving others to be responsible for my daughter.

At the time, I thought they were being extremely cruel and unreasonable. I mean, how in the world could I have known that prednisone would do that to me, right? Even my doctor was surprised. He said that prednisone has been known to have the effect that it had on me but there wasn't any way of knowing which patients it would do that to. Even without my family, having had a psychotic break made me feel like a failure because I hadn't managed to prevent it from happening. When those feelings were coupled with their reaction, the guilt became almost overwhelming. Things didn't get better at home for a very long time. I'm not going to claim that this was a healthy environment for someone with a lot of disabilities but I can look back and say that it definitely helped me learn some much-needed lessons.

When you're in a place where poverty is just a heartbeat away and you're scared stiff that it could be you living on the streets, doing anything that could tip the scale back is considered a luxury. The effects of this mentality in people of color communities is always visible to me. I've seen poor people sitting at work with the flu drugged up on over the counter cold medicine because they can't afford to sit at the public hospital for the twelve to fourteen hours it would take to see a doctor and get prescriptions for medicine they really need. When I worked at the drug store in a predominantly Black and Asian part of the city, I saw people who were so sick that they had no choice but to go to the hospital and get the prescriptions only to get to the pharmacy and find out that the price of the meds was so high that they just couldn't bear to spend that much money on themselves when their family had so many other needs. Over time, I watched as they sacrificed their health but managed to keep their households afloat financially and they didn't get any kudos for doing it either nor did they seem to think that they deserved any.

I don't know. Some people might have a hard time understanding that but it is how we were taught to be. Sure, maybe those old women I met at the pharmacy should have just purchased their blood pressure medicine using the money they had. Maybe I should have stayed home and recuperated for awhile instead of go back to working full-time just two days after I got out of the hospital. Perhaps it would have been better if this girl I knew who had bi-polar disorder didn't have her severely disabled mother babysit for her every week.

But what would have happened as a result? Several of those sick older women had grandchildren in their custody that they were trying to prevent from having to go into the foster care system. They didn't have anyone else around to do it for them. I needed to get back to work to pay for the exclusive and, unfortunately, expensive pre-school program that I wanted VanGoghGirl to be able to keep attending. And as for that girl I knew, she had to have her mother babysit so that she could go and work the night shift at a parking garage in order to keep all three of them from being homeless.

When I compare those people to some of the more affluent families I've known intimately, the attitudes were very different. First of all, in some of these circles you just don't see as many people with disabilities. Perhaps it's because they are able to get the sort of pre-natal care that's necessary to avoid some disabilities occurring in the first place, which is a very good thing. And if you do have enough money, you can take care of some health problems before they become major disabilities. However, I've seen other factors that I think may contribute to the absence of people with disabilities. I don't know if this is a widespread attitude but a lot of the more affluent people I've known wouldn't dream of continuing a pregnancy if they found out that the child would likely be born with a significant disability that couldn't be "fixed". They also seemed much more ashamed of having family members with disabilities. I swear, some of these people acted completely devastated when they birth to a child with congenital illness, whereas poor people I know who also experienced the same thing seemed a lot more resigned.

I think the richer folks were less accustomed to having to deal with as many real disappointments, so when they had to deal with the kind that couldn't be fixed just by having more money or better connections they were not as mentally prepared for what they were about to have to go through. However, when you have to live your whole life in almost impossibly difficult financial situations and, above all else, you need to keep your family together because, as screwed up as they may be, they are all you have in this world, then you're going to have to adopt an attitude that is conducive to survival. And when the fit hits the shan, being accustomed to putting other people's needs first and knowing how to suck it up instead of wallowing around feeling sorry for yourself is what one needs in order to get through it all without falling to pieces completely.

1 comment:

Veronica said...

Whoa. That's almost exactly the opposite of what I've seen. Weird. The well-off people I've known found it a lot easier to cope with disabilities, because they had the resources to do so. They were also a hell of a lot less likely to get all Jesus-y on the subject, and tell people with physical disabilities that it was "God's Will," avoiding possible prosthetic, orthopedic, and therapuetic solutions to relatively easily remedied problems.