Yeah, OK, so it’s true that the squatter currently occupying the White House doesn’t go around saying the same ugly stuff about disabled folks that he says about other people who aren’t white, male, hetero, Christian citizens of the almighty U.S. of A., like him. He hasn’t publicly called disabled people rapists or murderers or anything like that. Even he’s not that stupid.
But it doesn’t matter. On that cold and dark November night when I watched a red infection spread gradually and ominously across the electoral map, I knew disabled folks were among those who would soon be in deep doo-doo. It wasn’t because Donald Trump mocked disabled New York Times reporter Serge Kovaleski by breaking out his best over-the-top spaz routine, à la vintage Jerry Lewis. Hell, I wish the squatter’s contempt for us was always that obvious.
Nor did it have anything to do with the multiple accessibility complaints lodged against the squatter’s many properties, and the hostility with which he responded. In one case in 2001, two wheelchair users alleged that the wheelchair lift at the Trump International Hotel was always locked and the employee who was dispatched to unlock it didn’t know how to operate the lift. After years of legal maneuvering by Trump, the case was finally settled in 2009. Trump also had to reach a settlement with the U.S. Department of Justice in 2011 after an inspection of Trump’s Taj Mahal found numerous Americans with Disabilities Act architectural violations.
Even without all this, plain old logic told me that disabled folks would also be targets of the oncoming assault. The squatter fires indiscriminately at everyone who doesn’t blend into his utopian vision of America of glorious yore, when guys like him were in charge of everything and everyone else knew their subservient place. That puts us squarely in his line of fire.
That’s how Trump sees us. As people with problems.
If Trump ever took two minutes out of his life to ponder the situation of disabled Americans, which is highly unlikely, he would no doubt conclude that we are sad charity cases. When he defended himself against criticism for mocking Kovaleski, he said, “I don’t mock people that have problems.”
That’s how Trump sees us. As people with problems.
With Trump in power, then-Speaker of the House Paul Ryan and Senate Majority Leader Mitch McConnell were free to pursue the agendas of their wildest dreams. There was no one standing in their way. Any scheme relegating disabled people to the underclass of charity cases that they could manage to land on the squatter’s desk, he would gladly sign.
McConnell and Ryan wasted no time. Like the sharks that they are, they smelled delicious blood in the water. Within months of convening, the House narrowly passed a bill to repeal the Affordable Care Act, which was laughably entitled the American Health Care Act. The squatter sat poised with pen in hand, his trigger finger itching like a poison ivy rash.
The repeal attempt riled up a lot of disabled folks for a lot of reasons. First, the new act would have rolled back the ACA’s prohibition on insurers refusing coverage or charging higher premiums to people with pre-existing conditions. “Pre-existing condition” is another term for disability. I was once turned down for health insurance because I was born with a neuromuscular condition called spinal muscular atrophy. But otherwise, for sixty-plus years, I’ve been healthy as hell. I’ve spent maybe about a total of two weeks of my life in a hospital. I’ve had one minor surgery. I still have my appendix and tonsils. I’ve never even had a cavity. I’m what’s referred to in the business as a good insurance risk.
But I was refused coverage anyway. That’s how a lot of disabled folks got branded with the scarlet letter U, for “Uninsurable.”
Shortly after the 2016 election, Elena Hung, an immigration attorney who lives in Maryland near Washington, D.C., helped form a group called the Little Lobbyists. Its goal is to ensure that “all children with complex medical needs and disabilities will have access to the health care, education, and community inclusion they need to survive and thrive.” The Little Lobbyists’ website says, “We seek to educate legislators about our community by showing up in-person with our children (and their trachs, ventilators, oxygen tanks, feeding tubes, wheelchairs, and more) so they can see first-hand who is impacted by laws and programs” including the ACA.
Elena Hung and her daughter, Xiomara.
Hung’s four-year old daughter, Xiomara, was born, Hung says, with “ten pre-existing conditions. Xiomara’s disabilities include chronic illnesses, which means she will need medical care for the rest of her life.”
Xiomara uses a wheelchair, breathes with assistance from a ventilator, and takes in nutrition via a feeding tube. She spent the first five months of her life in the neonatal intensive care unit. As Hung sees it, “The harm of ACA repeal has already occurred. Every single time there was a possibility that the ACA would be repealed, it caused great fear, anxiety, and worry to my family and families like mine. The weight of the uncertainty of our family’s future cannot be understated.”
Because of the ACA, Xiomara’s pre-existing conditions are covered by the private insurance plan in which the family is enrolled through Hung’s husband’s job. “But if anything were to change and we needed new insurance coverage,” Hung says, “Xiomara could be uninsurable. Uninsurable means that she would not get the life-saving care that she needs, we’d be in financial ruin, and it would just be a matter of time before her unnecessary death.”
The ACA also prohibits insurers from placing caps on what they will spend to cover any individual. That’s another way disabled folks became uninsurable. Their cumulative medical bills were higher than what their insurance companies were willing to pay, so they were deemed a threat to the profit margins and dropped.
This ACA provision is also of vital importance to Hung’s family, she says, because Xiomara’s medical bills surpassed $1 million before she even came home from the hospital.
Apparently, the assault on the ACA wasn’t cruel and nasty enough for McConnell and Ryan, because their repeal efforts included an unprecedented slashing of Medicaid. For the first time, the amount of Medicaid money the federal government pays to states annually would have been capped.
Since the inception of Medi-caid, spending has been open-ended. The federal government has always split the annual cost of providing Medicaid services with each state government, no matter what that cost may be. Ryan previously tried and failed to subtly gut Medicaid in this way. The AARP estimated that this change would have slashed Medicaid spending between $2 trillion to $3.8 trillion over twenty years.
Medicaid is Xiomara’s secondary insurance. Would she have been squeezed out? Or would she have been used as an excuse to squeeze out other people with less dramatic needs? With Medicaid funds suddenly limited, governors and state legislatures have to make, you know, “tough choices.”
When the legislature tries to taketh away and faileth, watch out for the judiciary. It just might succeedeth.
But fortunately, as we all know, the squatter never got his chance to bleed us with his pen. Resistance was fierce. The Little Lobbyist families took their kids to Washington, D.C., and told their stories to legislators, staffers, the media, anyone who would listen. Video of disabled people being arrested in protest of repeal efforts went viral. No repeal bill made it to Trump’s desk.
Ah, but as the saying goes, when the legislature tries to taketh away and faileth, watch out for the judiciary. It just might succeedeth. In December, U.S. District Court Judge Reed O’Connor in Fort Worth, Texas, struck down the entire ACA as unconstitutional, including the provisions that prevent insurance companies from rejecting or dropping people at will.
The judge allowed the law to remain in place while the decision works its way through higher courts, probably eventually onto the docket of the U.S. Supreme Court. But this new threat hurls the Little Lobbyist families, and millions of other Americans, into another vortex of dread.
What all this has reaffirmed for me is that whatever happens, it’s more important than ever for us to be loud. That’s the only tried and true way to stave off the squatter and his thugs. Screw that saying about the meek. The point of the whole assault is to make all of us outliers who intrude upon the squatter’s homogeneous paradise meek. Meek is just how he wants us to be. So that means we have to be the opposite, right?
Mike Ervin's column "Smart Ass Cripple" is a regular feature of The Progressive.