Wednesday, August 19, 2009

Disability as Vulnerability

A writer friend who has a chronic condition requiring the use of steroids wrote to me about how people with her particular disability -- Rheumatoid Arthritis -- are in a sense diminished in news reports relating to the expected H1-N1 virus invasion of the US.

Noting that the first person who died from the virus "had both of these conditions," my friend wrote ...
Since then anytime a death is reported in America the reporters add the caveat, "but the person had pre-existing illnesses."

It is amazing the power that these words have on me. Yes, because I take immuno-suppressant drugs I am at much higher risk of contracting H1-N1, and even dying from it.

So while I understand these words are intended to comfort the 80 percent perfectly healthy majority, I certainly feel that it also devalues the life of people with illnesses who are in danger as this virus spreads.
While I understand a person is not necessarily ill because the person has a disability, I've thought about how illness relates to my life as a disabled person for decades.

I am the poster boy for "pre-existing conditions." In fact, it takes a conscious effort for me to close my ears to the idea that someone with restricted vital capacity is in greater danger during flu season.

I'm so paranoid about it that I ask (demand) my MD allow me to keep a prescription of routine antibiotics on hand, and at the first sign of a stopped-up head or a prickly chest, I swallow a little penicillin derivative.

But I don't take -- in fact, I've never taken -- steroids, and I don't really know how they "feel," so to speak. I do know enough to understand steroids can compromise the immune system, and that's a danger.

I explored the issue a bit in my memoir, noting that many physicians can sometimes view any person's rational concern over how treatment or medications influence overall health. If a person asks too many questions or makes too many suggestions, the person is often labeled as a hypochondriac.

About all we can do as people with disabilities, I suppose, is appreciate that physicians generally are "mechanics" in that most all of their interactions are with people who need "repair." With that in mind, many of them might assume any questioning comes from people who tend to borrow trouble.

Of course, in the instance of H1-N1, we're all at risk, but to varying degrees. I look at it this way: I am at no more risk than a person with emphysema, for example, or even perhaps a heavy smoker. With that, the news story "pre-existing conditions" notice becomes both a warning and a caveat to prevent general hysteria.

In that regard, it becomes a glass-half-full perspective for me rather than another reminder of my vulnerability.

But that wasn't a very good answer to your question to my friend's question, was it?

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