Health-Care Activism Is Failing The Disabled Community

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The #IAmAPreexistingCondition protests have left me feeling more invisible than ever.

A s Republicans voted in the House to repeal and replace Obamacare, thousands of people used the hashtag #IAmAPreexistingCondition on Twitter and added it to their Facebook profile pictures. The hashtag was created to protest the broad, and often absurd, expansion of what constitutes a preexisting condition in the AHCA: acne as a pre-existing condition? Paying higher premiums simply because you’re a woman? No wonder the internet was up in arms. I joined in the hashtag with vigor at first, eager to share my story as a disabled woman with a world that finally seemed interested in hearing it.

But as the hashtag continued to trend, my initial optimism waned. I quickly realized this outrage wasn’t about me or the rest of the disability community, who have always had the most to lose from health-care reform — this was about centering the fears and anger of people who’ve rarely been interested in understanding my own. The protests left me feeling more invisible than ever.

I’ve never needed a hashtag to “come out” as disabled. My disability was obvious from the day I was born. I have no fingers on my right hand, and it’s often the first thing people notice when they reach out to shake my hand. What I didn’t know until recently was that my medical problems went deeper than my missing hand; I was also born with mitochondrial disease, a genetic disorder of cellular energy production.

The protests left me feeling more invisible than ever.

My missing hand is an obvious disability, but it’s never impacted my life as much as my invisible disease. By the time I reached my early thirties, chronic health problems had left me unable to work. A muscle biopsy eventually gave me my diagnosis, and I was declared totally and permanently disabled by the Social Security Administration before I turned 35.

There’s no such thing as a “typical” mitochondrial disease patient, and I’m by no means as impacted as some of my friends in the mito community. Some of them rely on ventilators to breathe or wheelchairs to get around, and others have died. Many have lost children to the same disease, while others watch their kids’ health conditions progress alongside their own. In the mito world, I am lucky.

It’s not always easy to feel lucky, though. I’ve grown accustomed to pain and lack of energy, but there are still firm limits on what I can do. I need help buttoning my daughter’s dress or shopping for groceries, and I’ve long since given up on more active pursuits like hiking or dancing. My life is rich and filled with joy, but much of that joy comes from accepting my limits and re-framing my ideas of what’s possible. It’s a constant, sometimes even daily, challenge.

A few months ago, I accepted a new job. Unlike my prior career, this position allows me to work from home. It’s the first time that I’ve been able to work since going on SSDI four years ago. And, while I’m thrilled to have this opportunity, I know how precarious my health is. All it takes is one particularly nasty virus to land me in the hospital; even just pushing myself too much could trigger disease progression that would make working impossible. Every day is a balancing act between my job and my health.

Yet, in the midst of our raging debate over health care, my life as a disabled woman bares no resemblance to the outrage I saw on social media; I can’t confine my list of medical ailments to 140 characters. If each of my health conditions were charged an extra premium, my annual health insurance premiums would climb well into the six-figure range. But I’m not in that category — I’m not plagued by some common, relatively minor “preexisting condition.” I’m disabled.

Before Obamacare, I went without health insurance entirely, and it cost me my career. My only option for health insurance if Obamacare’s protections are repealed would be high-risk pools, the cost of which would again leave me without access to the medical care I need to remain working.

In the weeks after Donald Trump’s election, I talked to dozens of friends, family, and even editors about the impact his presidency would have on health care for the disabled. I suggested that high-risk pools would make a comeback and that disabled people like me would end up uninsured and, in some cases, dead. Most of the time, I was told this was unlikely to happen because even conservative Republicans wouldn’t go that far. I was always reminded that changes like these would take time.

But it hasn’t taken time. Trump has been president for only five months, and he and his Republican cronies have already launched two massive attacks on health care. While the AHCA died in the Senate immediately after being passed by the House, we’ve already been assured there’s a new health-care bill coming. These attacks on health care are unlikely to end.

For people like me, this is a threat to our continued livelihood and even existence. And, no matter how afraid my friends and family are of premium hikes for things like asthma or pregnancy, most of them aren’t facing life-ending gaps in their medical care. I know many of them are terrified of suffering what might be catastrophic financial consequences as a result of premium hikes, or even losing their insurance entirely, and I am empathetic — but I’ve yet to experience the same empathy in return.

People without disabilities or severe chronic illnesses may be beginning to understand how health-care reform can destroy our lives, but they just aren’t in the same boat. I’m not interested in conducting the disease Olympics or judging the weight of others’ suffering, but the fact remains that most people with mild health concerns won’t lose their jobs without health insurance, and none of them will lose their lives. If that sounds like hyperbole, it’s because so often the life-and-death struggles of the disabled are brushed aside without a second thought. Even now, when we are the ones with the most to lose.

In the landscape of health-care reform, we aren’t all created equal. The “preexisting condition” of being a woman, as I’ve seen it framed, doesn’t put me at the same risk as my disability; the insurance hike, if any, that would come from my gender pales in comparison to the specter of high-risk pools. We are all people who deserve access to quality, affordable health care, but it’s impossible not to notice how little my health care mattered until the scope of preexisting conditions expanded its reach. The AHCA protests took off only after it was made abundantly clear whose health care took precedence — the able-bodied, not ours.

Now isn’t the time to lose sight of the people who have the most to lose from health-care reform. High-risk pools will destroy the lives of the disabled, many of whom are currently working like myself. They will push us out of the workforce and back into poverty. They will destroy the progress we’ve made as individuals and as a community.

We are not all preexisting conditions — and that’s exactly why we need to center the conversation on disabled people like me whose lives are the most threatened by health-care reform.

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