At first glance, I don’t look like someone with a disability. But when people look closer, they see the small, plastic pod on my arm. “Is that a nicotine patch?” I get asked on the subway; “I don’t mean to be rude, but what is that?”
“It’s an insulin pump,” I explain, hoping to end the conversation before this stranger gives me diet advice or asks whether I ate too much sugar as a kid. As a Type I diabetic who has relied on injections for most of my life, I am used to having an “invisible disability.” Switching to a visible treatment system like an insulin pump gave me more flexibility to control my chronic illness, but it also gave strangers an entry point for expressing opinions about my body.
In the past, I tried to brush it off when well-meaning strangers got under my skin. Of course they don’t understand, I told myself. How could they know what this disease is like? People hear news reports about diabetes and obesity; they may not know that there are two types of diabetes, which are really different diseases. They couldn’t know that I was a competitive runner, 25 pounds underweight, when I was hospitalized and diagnosed. And above all, because I excel at appearing to live a “healthy” or “normal” life, people cannot see the labor and money required to maintain my chronically ill body.
But over the past few months, I’ve become convinced that misconceptions about living with a disability aren’t just personally annoying. Rather, our society’s failure to confront the realities of illness—and our ingrained belief that Americans can bootstrap themselves out of any bad situation—can have political consequences that are, quite literally, life or death.
Since the 2016 election, a Republican government and a Republican president have set their sights on dismantling the Affordable Care Act. For a disabled person like me, the race to tear down the ACA without a replacement plan in place has underscored just how little the government understands or values the lives of the chronically ill.
My life with diabetes isn’t just about advanced medical technology or diet choices; it is about permanent reliance upon the medical insurance systems of this country. I was 17 when I was diagnosed. My immune system had gone haywire, destroyed the pancreas cells that make insulin, and thus caused my body to start breaking down my fat and muscle tissue.
I knew the diagnosis meant transforming my daily life: I would have to check my blood sugar, measure my food, and give myself between three and seven insulin shots every day. I will need to be on insulin for the rest of my life, regardless of what I eat or how often I exercise.
Adapting to these restrictions was difficult. But what was really challenging—and what I didn’t fully grasp as a teenager covered by my parents’ insurance plans—was how living with diabetes meant continually navigating complicated bureaucracies.
The insulin pump on my arm, then, is not just a visible marker of illness. It is the end-product of a system of healthcare providers, pharmacies, distributors, and insurance companies. And the Affordable Care Act made it much simpler for a chronically ill person like me to participate in this system.
Prior to the passage of the ACA in 2010, insurance companies could refuse to cover or could impose exclusionary waiting periods on individuals with pre-existing conditions. The only way around these obstacles was by maintaining “continuous coverage.” But maintaining coverage without any gaps is fairly tricky, unless you’re already settled in a permanent, full-time job with benefits.
I spent the first decade of my adult life stitching together insurance plans. Since individuals could not yet stay on their parents’ health plans through their 26th birthday (an ACA provision), my parents bought me COBRA insurance as a college graduation present. This extra year of coverage allowed me to find a graduate program that included benefits in their fellowship offer. I didn’t consider masters programs or internships; I went directly into a PhD program because I knew it offered insurance. The need for continuous coverage also limited my career mobility. I couldn’t even consider leaving one position unless I had another one with full benefits lined up, and I always had to pay COBRA costs for the transitional months so my coverage would not lapse.
I’m not describing these difficulties for the sake of complaining. I’m sharing my story to illustrate how difficult it can be to build a life within an inflexible healthcare system, even in a best-case scenario. I had all sorts of advantages: a family support system to help me navigate expensive transitions, educational opportunities that offered benefits early in my career, and enough control over my disease to work and save enough money to pay COBRA fees. But even with these factors working in my favor, there was little room for surprises in my life plan. In a healthcare system this rigid, the chronically ill are always one major illness or job loss away from financial ruin—no matter how hard we work.
The passage of the ACA offered radical change. It meant that I could consider leaving a position without my next job-with-benefits in hand. In other words, it gave me the freedom to deal with the inevitable, unplanned twists of a life.
This kind of flexibility is increasingly necessary in an economy where part-time labor without benefits is on the rise. According to a 2015 US government report, an estimated 40% of the country’s workforce held “contingent” jobs in 2010—that is, they were part-time workers, independent contractors, temps or self-employed, without guaranteed access to benefits and other government protections. As an individual with a PhD and a decade of teaching experience, my chances of finding full-time work are actually worse than average. According to a study by the American Association of University Professors, 76.4% of faculty are now “contingent,” meaning that they work part-time or full-time without guaranteed future employment. In such an economy, individuals like me need ways to access affordable health care while moving between jobs or working multiple part-time jobs.
But with an ACA repeal on the horizon, I worry about whether I will be able to get coverage. I certainly cannot afford my medications without insurance, no matter how hard I work, since insulin prices continue to skyrocket. Without a clear Republican replacement plan in place, nobody knows how future medical and insurance systems will work. Trump has promised that his health care plan will protect people with pre-existing conditions. But it is unclear how any plan can keep that promise without bankrupting insurance companies or requiring universal participation.
Furthermore, in the recent Senate “vote-a-rama,” Republicans voted against a number of Democratic amendments, including proposals to keep pre-existing conditions protected. While these votes are non-binding, they suggest that cutting costs will be a higher priority of this Congress than taking care of the chronically ill.
Ultimately, I believe these moves to dismantle the health care system are part of a larger problem with American ideas about independence and identity. As Carolyn Zaikowski eloquently explains, policies that discriminate against disabled people reveal society’s ingrained assumption that each of us is capable of controlling our destiny through good choices and hard work. It is easier to imagine disabled bodies as a drain on an otherwise viable economy than it is to admit we all are vulnerable.
But in an economy where steady benefits are becoming more rare, we all can benefit from recognizing our reliance on systems that we cannot directly control. And we all can benefit from remembering how Americans won those benefits in the first place: through collective action, calls for change, and resistance.
Right now, with the future of health care undecided and Republican representatives possibly wavering on their push to repeal the ACA, I believe it is important to tell stories that highlight the importance of accessible health care.
To be clear: I unconditionally reject the idea that any person should have to earn the right to health care. I believe that a just society takes care of its sick. I also reject the American myth that neatly sorts bodies into two categories: the productive and able, or the worthless and disabled.
My life is a model of the ways we are all ultimately dependent on social systems. Through will and hard work, I have managed many successes, from climbing mountains to earning a PhD. But I have been able to accomplish these things because of insulin pumps and endocrinologists and periods of stable insurance coverage.
I cannot bootstrap my way out of diabetes. But, as my insulin pump now reminds me, with access to medical care I can still work and build a life. As a nation, if we choose to dismantle the ACA, we need to develop a clear alternative plan that keeps such interdependence in mind—and we have to relinquish the idea that a dysfunctional few are ruining economic prosperity for the rest of us.