The news of the horrific attack on the teen with mental disabilities in Chicago is almost too horrific to contemplate: four teens kidnapped the 18-year-old, tied him up, and tortured him for hours—and broadcast the beating live on Facebook.
The races of the kidnappers and their victim have been foremost in the media: the four teens charged are black, their victim is white. The perpetrators are on camera screaming anti-white and anti-Trump invective while beating the victim, stomping and slashing his head. Conservatives like Newt Gingrich and Glenn Beck are calling the attack racially motivated—and Beck, with no evidence, placed the responsibility for the attack on the Black Lives Matter movement.
This crime was undoubtedly a hate crime. But what kind, exactly? That it immediately went to a viral hashtag, #BLMkidnapping, shows the inflammability of our current political situation, smoke and fire that ends up obscuring what I call the current climate of “stealth violence” against people, especially children, with disabilities.
As a parent of a cognitively disabled half-Asian teen who can be easily mistaken for white, my immediate reaction to the news was that it cut to the heart of my daily fear for my son’s safety; people with disabilities face a 2.5 times greater chance of being a victim of crime than that of a non-disabled person, according to the Bureau of Justice Statistics. They are often specifically preyed upon because of their vulnerability.
People with physical and mental disabilities continue to suffer marginalization; probably never more so than now, after a chaotic campaign season where a Presidential candidate openly mocked a New York Times reporter for a physical disability, yet went on to win the nomination and the presidency. But this prejudice is not limited to a certain party; who can forget candidate/Governor Bill Clinton’s personal appearance at the execution of Ricky Ray Rector? Rector was a murderer for sure, but someone with such severe cognitive disabilities that he asked to save his pie from his pre-execution meal “for later.”
And if we’re going to talk about race and the disabled, we need to talk about health care providers. Partly because we live in New York City, and partly because careers working with the disabled tend to be among the lowest-paying, the majority of people who work with my son, from his Medicaid Service Coordinator to his teachers to the aides who work and help care for him daily, are people of color. And yet, their quiet heroism goes unnoticed, or worse, they are abused and injured just for doing their job. In Florida, Charles Kinsey, a black aide to a teen with autism, was shot while trying to protect his client from police who thought his client’s toy truck was a gun. Our son’s aide, who is African-American, was threatened with police action for opening our son’s bag to get out his subway pass, and a bystander accused him of stealing.
Because we live far from family, and because our son’s needs are vast and complex, we are grateful for this caregiving team that has come together, all dedicated to nurturing my son and keeping him safe—many of whom go above and beyond their duty, and all of them undercompensated.
I will also always be grateful to former president Ronald Reagan for signing into law the Katie Beckett Medicaid waiver, which allows parents the resources to care for their children at home, instead of in an institutional setting, or, even worse, going without care at all. (It also saves the government money.) For us, this has included things like help with his complex medical care, therapies done in the home, his diapers, as well respite time—such services also allow us to care for our son without burning out from the stress.
And yet it’s kids like mine who—powerless, voiceless, moneyless—are often sacrificed by politicians eager to show their enmity to “entitlement programs.” The bureaucracy of applying for services—the endless evaluations, the records, the ever-changing procedures—takes up much of my parental time (hardly an easy service to “mooch” off of), but I’m ever-aware that having a flexible job, speaking English, and having a college education puts me at a huge advantage. After months of paperwork, phone calls, attending mandatory meetings, even tweeting at agencies to get them to pay attention, during one last home visit, the visiting social worker expressed admiration to my husband that I actually saw this to the finish.
“Most people would have dropped out long ago,” she remarked. Applying for services shouldn’t have to be a Hunger Games-type situation. But according to an article in Rolling Stone, the waiting list to get on Medicaid in New York is 12,000 people deep; in states like Texas, Florida, Ohio, the wait can be decades.
And our worries are hardly over. Not only are these kinds of services under constant assault; given how little thought is given to people with disabilities now, what support services will there be, if any, when my son turns 21 and no longer qualifies as a child? In the absence of becoming a multimillionaire, will we be facing state-run institutions? Or any help at all?
Reagan’s name is invoked with awe by conservatives, as is his push for small government. Yet it shows how far we have strayed from national ideals to see how even Reagan’s signature act that indeed “cut the red tape,” and that let a three-year-old girl on a ventilator come home, is no longer inviolable. In fact, three days after Katie Beckett herself died in the same Midwestern hospital where she made history, Illinois Representative Sara Feigenholtz filed an amendment that would effectively gut her state’s version of the Katie Beckett Waiver—while increasing costs threefold, as making a point about fiscal austerity seems to be more valuable than children’s actual lives and actual cost savings. But this egregiousness did not make the news, and no pundits appeared on TV, wide-eyed with concern for the victims.
Was racial hatred a factor in the Chicago incident? Probably, yes. Was disability? Definitely so. It was a violent crime, and the perpetrators need to be commensurately punished. But we also must keep in mind things like the current conservative push to make cuts in Medicaid and Medicare, that—just because they are not easily hashtagged or shareable on Facebook—are no less a hate crime. This is stealth violence committed against people with disabilities, and we need to start caring.
Marie Myung-Ok Lee is a novelist and essayist who teaches at Columbia and shares a hometown with Bob Dylan. Find her on Facebook and Twitter.