Talking about demons

One of my friends who has a disability sums up her experience like this: it brings out the best and the worst in people.

I know what she means, so this morning when I saw this article about how Hurricane Ike brought out the best and worst in people, it caught my eye. Some angels appear, the author says - and so do those who take advantage, who try to make a buck on the situation, the price gougers, for example.

The author, who has lived through a civil war, is no stranger to hard times. He asks the reader to be willing to see the demon as well as the angel who appears. And he notes how people emphasize the angels who appear more than the demons.

A very unusual article and it left me wondering if, in our culture, we simply have trouble talking about the demons. And yet, if we don't talk about the demons, they continue to take advantage of those who are vulnerable.

A price gouger is not going to admit, unless authorities get involved, that his prices were raised illegally. Most folks who are demons, as this author says, aren't the type who are going to change their behavior without being confronted in an effective way - if then. And I bet there are repeat offenders, too.

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Some of my friends have family who care for them daily, who help them purchase homes and make them accessible, who help them buy vans, who set up trust funds - and this is all good. But not every family can afford to do that, no matter how much they love their child.

The heartbreak this engenders is staggering. I know one parent who held a fundraiser to get money for the cost of bringing her quadriplegic son home from the hospital, just to get him in the front door, just to make their house accessible. Just to bring him home. Angels appeared and he's home.

Disability doesn't happen in a vacuum. It can happen to people who already have financial issues, who already have other ill family members. And disability is expensive, something we don't talk about, a demon we shut into the closet for fear of upsetting the status quo. We don't talk about lowering the price of items needed, we talk about running Medicare better. We don't speak about developing low cost equipment, not unless Medicare's rates change. We don't talk about ways to make homes accessible or universal design enough. It's not - yet - about the individual consumer with a disability and until it is, disability will be unaffordable.

I once had a woman tell me I looked comfortable in my power chair. "I ought to," I replied. "It cost me almost six thousand dollars."

Let me emphasize - I say this to show the bigger picture - that the price of these items is a real problem when we talk about getting people with disabilities to work. We don't talk about that demon. How can we expect people to pay these prices and, when they rent, bear the cost of making the apartment they rent accessible under the law? How can we ever get independent living off the ground, encourage people to work and buy their own things if we don't lower these astronomical prices and make doing that more affordable? Clearly people know one thing: the disincentives to work built into our system are much stronger than anything else. And, sadly, those who have the best shot at working are those who already come from supportive families who can afford to get them what they need. The American dream for people with disabilities is something I speak up about, because all Americans deserve a shot, not just some.

Well this is why, I suppose, we shouldn't talk about demons. No one wants to hear about them. They just want to hear about angels.

And they're out there. Clearly, they are.