_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.
To my wife, it was clear their uncertainty was due to my physical disabilities. I was born 47 years ago with a congenital neuromuscular delight called spinal muscular atrophy. I've never walked or stood and have very limited use of my hands.
Was my life worth prolonging? Should the hospital provide me with the same measure of medical intervention it would anyone else?
Please! Don't hold my rag-doll body against me!
I'm also a husband, the father of two school-age daughters, a Harvard graduate and a freelance writer with an agented memoir-in-progress.
In other words, I have everything to live for.
In fairness, there are patients who don't want medical intervention. Yet too often have I been dismissed out of hand by medical professionals as a lost cause, a living example of the failure of their profession. My disability stems from a genetic aberration that was only pinpointed in the past decade or so. It's still unheard of by many physicians. No cures or treatments are available. That doesn't bother me. I'm used to it. For me, living with a disability is standard operating procedure. But for doctors I represent a gap in their knowledge, an irritating puzzle, a fearful reminder of the limits of their calling.
Or maybe what I'm perceiving as a stinginess in empathy is truly a case of economics. The simple fact is, those of us with significant disabilities are a bigger draw on the nation's scarce health care resources than other people. If you're counting dollars and cents, keeping people like me alive and healthy just doesn't add up.
Whatever the cause, I'm not alone in feeling marginalized by our current health system. Who hasn't felt the sting of dismissive and impersonal handling from overworked clinical staff and bureaucratic insurance carriers? Even the pharmaceutical giants, with their glossy TV commercials promising to make your life better, notwithstanding the sometimes outrageous legalese disclaimers about side effects, are in on the act. Health care isn't -- cannot be -- one-size-fits-all. There are no easy solutions. This is especially a problem for those of us who don't fit the typical model.
Take, for example, the standard examination table. Many friends with disabilities complain that they don't have a step or grab bars or a height adjustment to make climbing up easier, safer. I always have to remind doctors before they prescribe something as mundane as an antibiotic that I weigh only about 113 pounds, because of my lack of muscle tone. The standard dose for a man my age can bowl me over! I've learned this the hard way.
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.
Nevertheless, pieces of the Democrats' proposals do address some of the needs of people with disabilities. Specifically, they would end insurance discrimination against pre-existing conditions; they would encourage, though not force, Medicaid programs to offer home- and community-based long-term-care alternatives to costly and unpopular institutionalization; and finally, they would extend Medicaid-type coverage to severely disabled adults not poor enough for Medicaid.
Yet I can't help wishing Washington would include provisions to guarantee fair and equal access to the full extent of quality care for every American, including the one in five who has a disability, especially in those dire situations like mine, unconscious on the operating table, when we're unable to demand it ourselves.
Is that asking too much? Perhaps. But we need that reassurance. Not everybody has a wife like mine.
Ben Mattlin, a writer and commentator in Los Angeles, is working on a memoir about growing up with a disability during the disability-rights movement._