The GOP Doesn’t Think My Son’s Life Is Worth Living

My son Felix was born 14 years ago with with cerebral palsy and was later diagnosed with autism. Over the years he has benefited from a variety of therapies and medical interventions, including most recently Botox injections that have increased mobility in his shoulders and knees, allowing him to once again raise his arms over his head and straighten his legs.  He has been in high spirits since the procedure—and we hope to do it again. But that may not be possible if the GOP-led Senate passes the American Health Care Act.

The Botox intervention is part of that humane body of medicine that improves the quality of life for people with disabilities, helping them to engage in school and work and take part more fully in community life. But if the Trump administration and the GOP-led Senate have their way, with the AHCA and the gutting of Medicaid, we, together with so many American families with disabilities, will be struggling to survive.

Being Felix’s parent inspired me to start Extreme Kids, a community center that brings together families with children with disabilities. I so wish that some of the Representatives who voted for this bill could visit one of our centers. I believe that if they could meet some of the hundreds of families who have passed through our doors, they might have voted differently.

Through Extreme Kids, I have had the privilege of watching children and families undergo marvelous transformations, many of which are due to medical interventions—drug regimens that have minimized seizures, surgeries that have made swallowing possible, therapies that have brought confidence and articulation to children who before barely seemed to have a voice. The joy that such children bring not only to their families but to all who love and support them is difficult to describe, as it is so intensely and wonderfully felt. But in the dry language of today’s political debates, these children are reduced to Americans with preexisting conditions, and each one of them will suffer if the AHCA becomes law. Even children who do not rely on medical intervention will be affected, for the bill also removes funding from Medicaid’s programs that provide therapists and alternative technologies for children with Individualized Education Plans (IEPs) in the schools.

We don’t say this in polite society, but our society isn’t polite anymore, so I will spell it out: Our culture has long been riven with the idea that people with disabilities lead such miserable lives that their lives aren’t worth living. You hear this when people say, “If that happened to me, I’d kill myself.” The notion springs from being afraid of what you don’t know. If you happen to be young and able-bodied, for instance, the idea of being old and crippled frightens you and you can’t imagine that you could possibly be happy in that state. Conversely, if you happen to be able-bodied and healthy now, but are not particularly enjoying the experience, you may comfort yourself by thinking that at least you’re better off than the disabled.

But perhaps you aren’t. Perhaps you and the disabled have more in common than you think. I cannot speak for everyone officially classified as disabled, for they constitute 20 percent of the population, and are as heterogeneous and complicated a group as you could wish for. But I can speak for my son: There are times when his misery is agonizing and explosive, and there are times when his joy lights up the whole neighborhood. The power of his emotions is such that he seems to be both happier and more miserable than most people I know. Surely, he is as complex and vast.

This fear we have, of losing what we have now—our memory, our ease of movement, our health—can make us push the inevitable away to such an extent that we start believing that misfortune or simple decay only happens to other people, people who have not said their prayers, or exercised daily, or popped the right multivitamin. We “other” the sick, the disabled, the old. In so doing, we divide ourselves into us and them, “us” being the somewhat fit, “them” being all of those people with oppressive medical bills and annoying demands.

The most recent example of this sort of thinking pops up in Alabama Representative Mo Brooks’s defense of the AHCA. In a comment to CNN, the Congressman commends Trump’s proposed bill for allowing “insurance companies to require people who have higher health care costs to contribute more to the insurance pool that helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy. And right now, those are the people who have done things the right way that are seeing their costs skyrocketing.”

In other words: “We,” the virtuous diet-abiders and Fitbitters, are unfairly saddled with the costs of “them”—those slobs who didn’t take care of their health. I’d love to see our nation’s fast-food chains go up in a purple cloud of smoke and for fresh nutritious lunches to be given out freely at schools, to every child, including those whose parents do not have decent jobs and cannot pay. I’d love to see more jogging and jump-roping and dancing in the streets. I believe that movement is good for the body and soul, as is stillness. But to imagine that we wield ultimate control over our health is a form of modern madness.

When you see a 300-pound woman on the bus, you can cluck your tongue and feel superior if you happen to be in a Mo Brooks frame of mind, but there’s no way for you to know why her body is as it is. Maybe it’s a thyroid problem, maybe she’s on an ice-cream diet for her own reasons. I was born with a body that stays relatively slim even when I eat a family-size bag of chips. I’m not a saint, and I’m surely not an ascetic. I’m just lucky to have an active metabolism. We are all born with different bodies and different stories, each of which is fascinating, and not easily told.

Equating health with goodness and virtue has ancient roots, and continues partly because it is convenient. If the sick deserve their fate, then the healthy are under less pressure to help them. When we are in a reasonable state of mind, the idea that, say, my neighbor down the street, who has stage-four colon cancer and two young daughters deserves anything but sympathy is absurd. But these currents of thought run deep, so much so that we feel ashamed or outraged when we ourselves get sick. I still remember my Grandma Harriet’s anger after she learned of her high blood pressure. She hadn’t salted her food for decades! It wasn’t fair!  She was, in Mo Brooks’s terminology, a good person, doing things the right way, and yet she found herself with one of the more common of “preexisting conditions.”

Other Republicans, trying to sound more reasonable, say that they do not wish to punish the sick for being sick, it’s just a question of cutting back on ballooning budgets. But this bill has nothing to do with rational, economic thought. It is a compendium of campaign promises and empty sloganeering that has not been researched, considered, or put through a Congressional Budget Review. Were such a bill to be passed, the economic consequences would be devastating, not only to the millions of Americans with preexisting conditions, and their families, but all those helping them. 

House Republicans seem to forget their own arguments about job creation, or they somehow do not understand that health care is an industry as surely as coal. When we cut speech or physical therapy to schoolchildren, we not only deprive children of attention that can help them grow and learn, we lay off therapists. We are both shutting the door in the face of a child, and increasing the ranks of unemployment among adults, many of who are struggling to raise families themselves.

Republicans have not always been so short sighted. Bob Dole was a co-sponsor of the Americans With Disabilities Act, and President George Bush wrote it into law. Both of those men understood that though they might eat their kale and play a good game of tennis, they were not immune to getting in a car accident or having a stroke. They understood that illness or injury can strike any of us at any moment, be we rich or poor, black, brown, or white, lazy or frenetic.

Caring for one another should not be a partisan issue.  Surely people from both sides of the aisle can see that supporting the sick, the old, and the disabled, is a practice that binds communities together and brings out the best in us.  We grow when we help each other, we learn and we thrive.  One of the wisest things anyone ever said about my son came from the mouth of one of his tireless babysitters: “We all think that we do so much for Felix, but he does even more for us.”

Surely there are some Republicans out there who understand this and will have the courage to block this bill. Let us hope. Let us pummel them with our voices.  And let us applaud them if they stand up for what is right.  Let us also remember that it is not easy to shed fear and rigid conviction, but that is what we must all do if we are to emerge from our current mess.