There’s an interesting article in the Rocky Mountain News this morning about a family with two severely disabled teenage boys, Mark and Eric Stahlman. They were born 3 months prematurely 16 years ago–something that could happen to any pregnant woman. Their mother, Kelly Stahlman, calls her life since their birth a long and difficult lesson in “‘the business of disability,’ and it’s more than a full-time job.”
There are piles of paperwork: years of documentation of the more than 20 surgeries each of the boys has had to release rigid muscles and fuse bones, records of their condition, back-and-forths with insurers over who would pay what.
At one point, her husband Bruce’s company called to say that the family had already used $400,000 of their $500,000 lifetime benefit.
“What are you going to do next month?” they asked.
Mark and Eric were just a year old.
This family, which has two apparently well-educated middle-class parents in the home, managed to get their children on Medicaid, which pays for much of their care:
15 medications a day, nine different doctors for physical and occupational therapy, speech therapy, vision problems and neurological and orthopedic issues. They both use wheelchairs and are fed through tubes. They require around- the-clock care. Their room is a mini-hospital, with special beds, breathing machines, oxygen tanks, a power lift to get them from bed to bath.
“I never dreamed I’d be a Medicaid mom,” Stahlman said.
No–no one does. People go on Medicaid because they need to. The Stahlman family’s middle-class status and their cultural capital undoubtedly help them work the system in ways that are likely impossible for people with less education, less time, and fewer skills. That’s not to say it was easy for the Stahlmans–far, far from it. That’s merely to highlight how difficult it must be to navigate these shoals without their advantages. The Stahlmans have done a remarkable job with their boys, both of whom attend high school now, and who want to live productive lives as adults. Kelly Stahlman’s experience with caring for her sons has effected a policial conversion:
She had always been a conservative Republican who thought of taxes as a four-letter word. That was before Mark and Eric, before the reality of caring for two children with severe disabilities hit home.
Now, she supports Amendment 51, which would increase a sales tax of a fraction of a percent to raise $186 million for services for the disabled. Colorado’s spending is one of the nation’s lowest, and more than 8,000 are on waiting lists for immediate services.
“It’s not a free ride,” Stahlman said. “Everybody that I know is doing good work and hard work and trying to take care of their own. But everybody sometimes needs a little bit of help.”
Health care in this country–where people (or their employers) are expected to purchase private health insurance from for-profit companies–is based on two flawed assumptions: 1) that health care is a private responsibility rather than a civil right, and 2) that human bodies are essentially healthy, and that disease and illness are exceptional rather than typical. But, if health is not a right but rather a privilege for those who can pay for it, why do we have the FDA to ensure the purity of our drug and food supply, the EPA to protect our air and water, and consumer protection laws? (Please note these three things are also things that right-wing Republicans have targeted for attack in the past twenty-eight years.) We’re already “socializing” a lot of programs and agencies that work to protect public health–why draw artificial lines around health care for individuals?
This question brings us to objection #2: many people are resistant to national health care plans because they believe that their money will go to pay for someone else’s sins against good health–sloth, gluttony, and smoking being the three unforgivable Deadly Sins according to even secular people in our society. And, yeah, they’re right: your money will pay to provide health care for some people who haven’t always made the “correct” decisions (according to you!) about how to treat their bodies. Teetotaling Mormons and Muslims will pay for other people’s alcohol-induced diseases. Non-smokers will pay for smokers’ diseases. Thin people will pay for obesity-related conditions suffered by others. Zero-population growth people will pay to subsidize other people’s prenatal care and childbirth expenses. Democrats will have to pay for Republicans’ health problems, and vice-versa. But, given the choice: would you really trade places with a sick person in the name of getting what you paid for?
And in any case, who among us is free of sins against the body? Think about it: you’ve also had more alcohol than you should have, you’ve also forgotten or refused to use a condom on occasion, and you also smoked in college. Maybe you’re more than a little out of shape or overweight, or you tried illegal drugs once or twice…and the reason that you’re still healthy, and someone else is not, is because of dumb luck, not because of your superior judgment and virtue. You also can’t take credit for having selected ancestors who don’t have histories of cancer or heart disease, nor can you take credit for the random good luck you and your family had if you were born with all of your chromosomes in the right places.
Even if you exercised superior judgment and flawless virtue in taking care of the healthy body you were lucky to be born with, there’s a little something down the road that you may be denying. Everyone runs out of time. Everyone’s body breaks down, decays, and doesn’t work the way it did sixty, or seventy, or eighty years ago. Guess what? If nothing else kills you sooner, nearly all men get prostate cancer at advanced ages, and nearly all women get breast cancer. I guess we could blame you for being so fit, staying sober, and eating so well that you avoided death by surer, quicker ways like drunken car accidents or massive coronaries that we now have to look after your prostrate or breast cancer treatments in your 80s and 90s. (See how that works? It can always be your fault! Always!)
Memento mori, friends. Death is democratic. Work for single-payer health care. (I’ll catch you later–I gotta get my morning run in!)