My older brother Sean has cerebral palsy. He also listens to bebop and enjoys teaching our nephew Oliver about the virtues of counting from one to ten in the voice of The Count and was angered when the Bruins fired Claude Julien. He makes a pot of coffee each morning when he wakes up, reads his news feed, and gets to work on research for essays he’s writing about pivotal battles of the Civil War. My older brother Sean, like anyone else, has interests and opinions and lives a rich life, and he has never defined himself by his disability. But America always has.
The 1990 Americans with Disabilities Act was meant to ensure employers could not levy unjustified discrimination against an employee or a candidate for employment based on their disability status. And yet nearly 30 years later, working-age adults with disabilities in America face unemployment rates as high as 65 percent.
Many of these unemployed and underemployed disabled adults are forced to rely on meager social security payments to carve out a life, and because they’re not receiving benefits from an employer, they’re reliant on Medicare or Medicaid when they require healthcare.
Medicare and Medicaid—both true single-payer healthcare systems and two of only a few great outcomes from Lyndon B. Johnson’s otherwise fraught time in the white house—represent, on a fundamental level, everything conservative republicans hate. To our rat-faced speaker of the house and that racist doomsday prepper of a senator from Kentucky—which is to say, to the republican party’s chief “thought leaders”—Medicare and Medicaid, and those who use them, are drains on the system.
If you require government assistance to pay your healthcare costs, there’s no way you can be a productive member of American society; if you’re not a productive member of American society, you don’t deserve to be a member of American society at all. And if you’re not a member of the Great Society, well, you might as well just be dead.
I spent the weekend after the election at my father’s house in southern New Hampshire. My family is from Massachusetts, my father is a journalist, and Sean is among the millions of disabled adults in America who is unemployed (or, “unproductive” in conservative speak) and therefore relies on both social security and Medicare. None of us voted for Donald Trump.
The results of the election left the three of us punch-drunk and angry for many reasons, but mostly because we knew Trump’s victory meant the likely repeal and replacement of the Affordable Care Act. And we knew, if only instinctually, that whatever alternative plan conservatives were cooking up would be a shell of what came before.
Barack Obama’s healthcare bill was far from perfect, but it had in it provisions that strengthened both Medicare and Medicaid. Sean’s disorder requires that he visit a physical therapist periodically. During those visits, Sean engages in strength training and stretching exercises that help bolster the atrophied muscles in his right arm and leg and lend pliability—even if only temporarily—to his inflexible tendons. These visits to the physical therapist are paid for by Medicare.
The implementation of Obamacare was important to our family because it admitted something America has struggled to admit for a long time: it admitted that my brother is a full citizen, deserving of the same protections as someone born with muscles and tendons more capable of Making America Great.
Sean and I went for a drive that weekend. Up the coastline from Hampton through hyper-affluent Rye and into Portsmouth. It’s a drive we’ve made countless times, and it’s always a bit of an odd drive, a mixture of us both gawking at the gilded age mansions that dot the coast while simultaneously acknowledging, even if silently, that the class of people who occupy those mansions probably wish people like my brother—“drains on the system” and on their incomes come tax time—didn’t exist. It felt even odder on that day.
We didn’t speak much, or at least I don’t remember exactly what we spoke about, but I could sense Sean was anxious. America had been waging war against his existence since the moment his existence began—we both knew the election of a bigot to the nation’s highest office would only make that war more brutal. It would just be a matter of time.
Our instincts were correct, but it didn’t take a PhD in sociology to conclude that a man who, while campaigning for the fucking presidency, viciously mocked a reporter with a disability might see Sean as little more than an expense to trim. And while it might feel momentarily good to say things like “Donald Trump is not my president,” the reality is that the actions of this administration, whether you accept the administration or not, will have demonstrably negative effects on real human lives.
We know roughly what we’re up against now—the American Health Care Act is a Republican proposal that seeks to end Medicaid as we know it by rolling back Obamacare-era Medicaid expansion. Instead of the matching program that’s currently in place—the federal government gives states a percentage of every dollar they spend on Medicaid beneficiaries—AHCA would transform the program into a system of fixed, per-capita caps. According to the Center on Budget and Policy Priorities, AHCA would shift $370 billion in Medicaid costs to states. Preliminary analysis predicts this could result in 4-6 million Medicaid beneficiaries losing their coverage. And because 10 million people on Medicare are reliant on funding from Medicaid to cover long-term home health and stays in nursing homes, the Republican plan effectively seeks to debilitate Medicare as we know it, too.
The AHCA also wants to repeal Medicare tax increases. By repealing Medicare tax increases—via tax cuts for the wealthiest Americans, (the provision would grant these tax cuts to single Americans making more than $200,000 annually, and families making more than $250,000 annually)—Republicans are in essence manufacturing another crisis. According to Stacy Sanders, the Federal Policy Director of the Medicare Rights Center in Washington, D.C., the passage of AHCA—which would guarantee the richest 10 percent of Americans get the tax breaks they’re all praying for—would threaten to make Medicare insolvent by 2024.
So while Medicare might not be under attack in the immediate, AHCA dooms it to a slow death. “For people on Medicare right now,” Sanders said, “it’s more about anxiety for the future.”
What this administration and its conservative lackeys are doing, then, is digging a shallow grave for Medicare recipients and asking them to look at it for a few years before kicking them in and burying them alive.
AHCA “brings the reckoning for Medicare closer,” says Jonathan Gruber, an architect of Massachusetts’s wildly popular and successful “Romneycare” and America’s embattled but mostly, so far, net-positive Obamacare. Gruber believes AHCA has potential to wreak havoc on the entitlements that currently protect our most vulnerable citizens.
And if Medicare becomes insolvent, Republicans will finally have the ammunition they’ve been searching for for 50 years to shoot healthcare entitlements—entitlements that ensure the poorest and the sickest and the most disadvantaged among us get the care they need—in the back of the head. It’s as disgusting as it sounds. And for my family and millions like us, these aren’t just lines on a spreadsheet. This is real life.
I spoke with my brother soon after the AHCA plan was unveiled, and we talked about what it might mean for his long-term health care.
He’s anxious. Of course he is.
Sean’s already unsure how he’s supposed to cover the costs of the dental work he needs—Medicare doesn’t cover most dental work, and the monthly checks he gets from social security barely cover cost-of-living expenses—and if he’s ever left stranded without Medicare, he’s unsure how he’ll be able to afford even a yearly wellness visit. And god forbid he has to visit an emergency room or get a ride in an ambulance. Without Medicare, he’ll simply be out of luck.
Sean and I are close, and Sean and I are honest with each other. To offer him some lame placation like, “Everything will be okay, man,” seemed as disingenuous and futile as saying, “Donald Trump is not our president.” Because the truth is, Donald Trump is our fucking president, and everything might not be okay. So I said nothing.
We were silent for a moment, and my brother sat with his anxiety—his anger. I sat with my anger, too.
The conversation finally shifted toward the Bruins, and then toward the Red Sox game we’re attending together at Fenway in May. It shifted toward things we love, things we look forward to, things we can control.