“How does it feel to be a problem?” W.E.B. Du Bois asks in of “The Souls of Black Folk.” Though I will never be able to understand the trials and tribulations of African Americans in the United States, I do know something about how it feels to be a problem. I have known since I fell ill as a pre-teen, since schools began expelling me for being too ill to attend class, since doctors who couldn’t find the proper diagnosis gave up and passed me off to therapists, since my father noticed my inability to get out of bed and decided it was a disciplinary issue best solved by yelling. Even once I was properly diagnosed with several illnesses that explained all the mysteries of my pain, fatigue and other symptoms, I was a new kind of problem. I was the problem of the chronically ill, the disabled.
I first realized that my new body was unwelcome when a relative said I couldn’t stay with her — it was too much work; I was too hard to care for. I was shocked. This woman had looked after me every summer of my childhood; surely my dietary limitations, inability to regulate my body temperature and fatigue were less cumbersome than my being an actual infant? Later, when another relative told my father that he needed to save money because if I couldn’t support myself I couldn’t live with his family, I was crushed.
I didn’t really understand what had happened, why I had suddenly become a problem too great for anyone other than my parents to deal with — just because some of my body’s systems had failed me. As I began to study literature, history and disability theory, I found that I was not alone, that the concept of the ill as burden, leech, deadweight, delinquent, deviant was neither new nor unique to my high school, doctors or family. The ill and disabled have always been viewed with a degree of skepticism. We worry who bears the burden of their care. We share a distaste for and discomfort with the problem of the ill.
Though occasionally hurt by the reactions of the world around me, I never let it in too deeply, never let it shake my identity or idea of personal worth. My body betrayed me, but I was still the same me, as morally and interpersonally good or bad as ever. But once my dad retired and I started using Cardinal Care, it became clear there might one day be a problem. My illnesses make health insurance the only way I can stay alive. My illnesses also make working a full-time, in-person job almost impossible. And thus I find myself in a dilemma faced by thousands of Americans. A dilemma I took comfort in being solved when the Affordable Care Act (ACA) was passed. Surely, this ensured that, no matter what, I could get the medications and procedures I need to stay alive?
Even when Trump started attacking the law, I wasn’t worried. Once people understood the benefits of healthcare not tied to employment they would never let it be dismantled. Never in American history has such a program been undone after its creation and popular usage. And then the Supreme Court agreed to hear the administration’s challenge to the ACA. And then RBG passed away. And now Trump has appointed Amy Coney Barrett, who will almost certainly help dismantle it. Millions of people will most likely lose their care, and I am once again at the center of a debate about the problem my existence presents to humanity.
I have long understood that we are a capitalist society that ties the worth of a life to economic production. I don’t need my life to be valued highly, but what COVID-19 and the probable fall of the ACA have shown is that my life doesn’t mean anything to many people. It is worth less than the itch of a mask. It is worth less than the taxes paid to support government-subsidized insurance. At least philosophically, I am a problem to be solved, not a person to be loved or hated or tolerated. There are countries where my right to life wouldn’t be questioned by politicians, lawyers and people I am foolish enough to talk politics with. But America is not one of them.
So as I try to focus on my classes, stay in touch with friends and stay safe inside my house, leaving only to go to Vaden or Stanford Hospital, there is always a thought buzzing in the back of my mind. What will happen after, next, someday, soon? Will I be able to find a way to work as much as I can, take care of my body and get the care I need? If not, how long will I have without medications and how can I make the most of that time?
The best thing I can do as a problem that Trump hopes Justice Barrett will help solve is keep going. I can keep working, FaceTiming loved ones and not lose hope. Because that is the only true answer I have for how to live as a problem, to maintain the hope that one day you won’t be seen as one. That you will be seen as “worth the trouble” and that your life will matter simply because it exists. I have hope that is the case, that one day I will no longer present a problem to those around me, but until then, I am basking in thankfulness that I have found so many at Stanford who don’t see me as one at all.
Contact Jen Ehrlich at jene91 ‘at’ stanford.edu.