Ben Mattlin is a disability activist and writer (he also gets paid for writing outside of the disability arena). I’ve had the privilege of knowing him for over a decade.
He’s authored an op-ed in the Chicago Tribune that reflects the current realities many of us who have disabilities face in the health care system right now. He also shares how so much of the debate around “reform” isn’t convincing to many of us – no matter which side of the political aisle is speaking.
Here’s the intro to “People like me – Is there room in health care for the disabled?“:
Last year, I was rushed to the hospital after a severe gastrointestinal infection became septicemia. I was unconscious, inches away from death, but before the doctors would perform their magic they asked my wife, “Are you sure you want us to do this?”
Actually, they said, “Is he full code?” but it meant the same thing.
It’s hard not to take that personally, and to be more than a little fearful for your life when similar stories get shared around the disability community.
Like me, he’s not real impressed with either end of the political spectrum in the current debate over “reform,” which seldom touches on the realities many of us deal with right here and now:
Every day, lawsuit-wary doctors, many with misguided notions about the quality of life for people with disabilities, and the penny-pinching insurance companies who pay them render judgments about who does and does not receive certain kinds of care. So when the right wing warns about medical rationing as a bleak future possibility, I don’t listen. I and countless others on the margins already feel the squeeze. Could the feds really do a worse job?
On the other hand, when the left wing talks about health care reform as a kind of panacea, I raise a skeptical eyebrow too. There’s more wrong with our current system than Washington can fix. I don’t like the outrageously expensive premiums I pay as a “high risk” customer, but the most galling obstacles I face can’t be easily legislated away.
In the end, like many of the people I know in the disability community, Mattlin figures the reform that might happen is better than nothing – there are some small ways it might help him and others similarly situated and it probably won’t make things worse.
But don’t take my word for that – go read it yourself. –Stephen Drake