Tiana Miller is a stand-up comic who was diagnosed with multiple sclerosis when she was 20. It took her another 2 years to qualify for Medicare because of disability, an exercise she describes as a full-time job in itself. During that time, lacking any insurance, she charged all of her treatments to a credit card, “thousands and thousands of dollars” worth. Her story is movingly told on the podcast Spent, with Lindsay Goldwert.
Tiana had the foresight and organization to save each receipt, and was later able to recoup much of the reimbursement, but points out, “I’ve worked full-time since I was 12. It’s not like I’m sucking off the system or anything.” She describes getting scammed several times, because of her disability status: companies offer to pay under the table and then just don’t pay at all. After a while she got wise to these ploys: “Why should I get hired in a chandelier store—I have intense tremors!”
Because Tiana is young and looks healthy, she gets a lot of judgment when she pulls out her food stamp card. There is terrible and unkind stigma in the US for people who are on public assistance of any sort. But of course the difficulty with MS is that the symptoms come and it go in the early stages, which can make it impossible to hold down a job, even for the most willing. For a while Tiana was self-employed, but that, too, fell apart. “I had to fire myself. I missed too much work.” A tough decision, for sure, but business is business. She has basically no money, and her disability payments are barely enough to cover the copays on her medication. She says, “You’re sick as hell, but you have to go back to the welfare office to fight….They don’t see you as a human being; you’re a number.”
She describes breaking her hand and going to a hospital, where she was instructed to take a ticket from a ticket machine, indicating the body part that was injured. So it was that Tiana became Hand #124. She went to sit with the other Hands, peering around to try to see what the other Hands’ numbers were. Even with all her fighting with the system and her fitful attempts to work, she still has a drawerful of bills she can’t pay. “I just stand over that drawer and cry,” she says. Problems with healthcare are a notorious problem in the United States.
Unlike all other advanced democracies, healthcare in the United States—still after the passage of the Affordable Care Act—is neither universal nor free. That’s a decision. Other decisions drive up the cost of housing, drive down average wages, and trap people in prison.
Pundits and political scientists offer lots of theories for these decisions. They slice and dice the electorate, rehash resentments and make a stew of leftover allegiances, but the real reasons are deeper. They lie in a failure to see. Public health starts with an ability to see.
This political season has brought increased focus to the plight of Americans like Tiana, as well as willful blindness about them. Let’s hope that those who can see will win out.