Although most people, policy makers and media, are not talking about people with disabilities, we’re acutely aware of the disparate ways that both the right and the left are fine with policies that will clearly lead to our premature deaths, along with the millions of seniors who depend on Medicaid to supplement Medicare.
On the national scene, the American Health Care Act (an oxymoron if ever there was one) threatens coverage of the care we need to survive, be as healthy as possible, and live in our own homes, not nursing homes. As Bruce Darling, CEO of the Center for Disability Rights, wrote in an op-ed entitled Disabled New Yorkers will lose their independence, suffer and die:
Medicaid pays for a wide range of services and supports for disabled individuals and seniors:
- The community habilitation worker who takes developmentally disabled individuals to the grocery store;
- The attendant that supports an elderly woman staying in her home;
- The custom wheelchair and speech-board — like those used by Stephen Hawking — that makes college and employment possible for a young woman with muscular dystrophy;
- The ventilator used by the young man who became a quadriplegic on the football field.
Scores of disability activists protested the bill and closed down the U.S. Capitol rotunda yesterday, with 54 arrested by police, including Not Dead Yet’s Anita Cameron. It took this loud and strong action to get at least some attention paid to the mass devastation inherent in AHCA. Here are some examples of press taking notice:
- Washington Post: The Latest: Police arrest 54 during Capitol protest
- Roll Call: Disabled Protest Closes Rotunda
- AP/CNBC: moderate Dent to vote no on health bill
On the other side, we have physician assisted suicide bills moving forward in Hawaii, Maine and Nevada, with similar bills introduced in about a dozen other states. If any readers don’t think assisted suicide is relevant to disabled people, John Kelly sums it up nicely in his op-ed this week in the Santa Fe New Mexican concerning the NM assisted suicide bill SB 252:
Millions of people now face the prospect of losing health insurance if Congress repeals the Affordable Care Act. That will mean even less choice. SB 252 would have put depressed people with a serious health condition or disability at risk. . . .
We now have 25 years of reports from Oregon and Washington, which show that pain (which includes fear of pain) is the sixth-cited of seven “end-of-life concerns.” Oregon physicians report giving lethal drugs mainly due to psychosocial distress about disability, including dependence on other people (“losing autonomy,” 91 percent), grief over lost abilities (90 percent), loss of the respect of others (“loss of dignity,” 77 percent), needing help with incontinence (“losing control of bodily functions,” 47 percent) and believing that suicide would leave loved ones better off (“burden on family, friends/caregivers,” 42 percent).
What we disabled people see in legalizing assisted suicide is that some people receive suicide prevention, while others get suicide assistance, based on value judgments and prejudice. Instead, let’s make sure that people have the choice and support to live — and die — comfortably, at home, with pain controlled and dignity intact.
The New Mexico assisted suicide bill was defeated in a bipartisan vote that hopefully demonstrates a welcome insight on the issues.
Still, it feels like people with disabilities are stuck in a room between walls on the right and the left, closing in on us.