The State of California maintains five institutional facilities for people with severe developmental disabilities who “cannot care for themselves.” Institutionalising people with disabilities is a subject of controversy; many disability rights advocates would like to unilaterally abolish institutions, while others would like to see a drastic reduction in the overall number of institutionalisations.
The Supreme Court supports this view; in 1999, it ruled in the Olmstead v. L.C. case that:
...states are required to place persons with mental disabilities in community settings rather than in institutions when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.
One under-touted accomplishment of the Obama administration has been an aggressive enforcement of Olmstead; the DoJ has been ferocious about getting people with disabilities out of institutions and pushing states to abide by the Olmstead decision. They’re pushing for community-based care and a trend away from miring people in institutions when they can live in community settings, which include group homes, assisted living and private residences with aides and personal assistants.
Most people aren’t aware of this, because as I referenced last week, the media rarely covers disability unless there’s a sex angle to be found. This is a source of extreme frustration, because disability is a critical social issue; we’re talking about approximately 20 percent of the population, which means that some of you reading right now are disabled, or have friends and family who are.
And more of you may be generally topically interested even if disability doesn't directly affect you.
The lack of media coverage on disability means that many people aren’t familiar with the issues that disability rights activists are lobbying on -- and have been for decades, in the case of institutions.
We protest. Kind of a lot, actually. Like, National ADAPT is marching on Washington RIGHT NOW, which you probably did not know. (Photo by Flickr user j-No, Creative Commons license.)
Several months ago, California Watch broke a nasty story on California’s five state-run institutions. In a probe involving extensive research into records at these facilities, advocates and news agencies found a routine history of institutional abuse, covered up by sloppy investigating tactics and slipshod enforcement:
Of the hundreds of abuse cases reported at the centers since 2006, California Watch could find just two cases where the department made an arrest.
This is a blatant and horrific human rights violation. Institutional abuse is distressingly common, as are systemic problems that ensure it continues unchecked; nepotism, conflicts of interest, and failure to communicate are common. Law enforcement agencies may be satisfied with internal investigations because they’re overloaded with work and don’t know how to handle criminal cases involving victims who have severe developmental disabilities.
The patient population at developmental centers dropped by 12 percent from 2008 to 2010, state records show, but reports of abuse have increased 43 percent during those three years. Unexplained injuries jumped 8 percent in the same period.
So far, I’ve only spotted one major media outlet picking up this story. I’ve noticed a few reprints tucked away on back pages. Meanwhile, California Watch has continued investigating and following the situation; their investigation actually resulted in a proposal to mandate more comprehensive reporting on injuries and deaths in institutions.
This is not considered major news, not even in California, where it should be critically important news, because these abuses are happening in our state, to people who have been entrusted to the “care” of the state. And California is not the only place where this kind of abuse happens; the New York Times, for example, ran a series that got limited attention on similar kinds of abuses in New York's institutions.
Institutionalisation is the subject of nightmares for some people with disabilities, and for their families. People with disabilities that might result in institutionalisation now or later in life know that this could be them. They could be the ones covered in unexplained bruises, subject to frequent “falls” and mysterious cuts,” sexually assaulted, left to molder in their own urine and feces.
Or killed; by neglect, by beating, by smothering, by overmedication. There’s a reason so many of us fight institutionalisation hard, taking the matter to court if necessary to defend our right to live in the community.
Family members are aware that if they are no longer able to provide care, or if support for an aide or assistant is withdrawn, they could be the ones reading a small scattering of media reports about the mysterious, unresolved, and quiet death of a loved one. Advocates working in solidarity with disabled people know that cases like this are all too common and unremarked, that people die on an alarmingly frequent basis and little to no discussion is provoked.
Meanwhile, the media scrambles to cover anything involving sex, whether it's people with disabilities hiring sex workers, people with disabilities going on dates, or people with disabilities indicating that they like to have sex. (Sexual assault of people with disabilities is, of course, not covered, even though we are statistically at a much higher risk of sexual assault than nondisabled people.)
Other things we do that the media usually doesn't cover: Dance. (Photo by Flickr user tuija, Creative Commons license.)
When I say that I find it “disingenuous" of nondisabled journalists to suddenly pretend to start caring about disability issues when a sex-related disability topic comes up, this is what I think of. I think of the Google Alert that sends reports on the abuse of people with disabilities to my inbox -- would you like to hear about a woman with development disabilities who was killed to cover up a rape? Perhaps another woman with developmental disabilities who was gang raped and videotaped?
Maybe you’d prefer the story of the woman who force-fed bleach to her autistic son? The mother who fed her child peanuts, knowing he had a severe allergy? The special education teacher who punched children, teased them, and grabbed them by the back of the neck to move them? The “carer“ who savagely beat a great-grandmother? The operator of “care homes“ who turned off the water for a week at one of them?
I can keep going.
The same people who suddenly care a whole lot about disability when it involves a reality television show are nowhere to be seen the rest of the time, and I can’t help but be just a teensy bit bitter about that.
It’s not that I think nondisabled journalists shouldn’t cover disability, or that it’s impossible to cover disability if you haven’t personally experienced it; just the contrary. I want to see more coverage of disability in the media.
It’s that this callous exploitation of a sexy angle for reader impressions is gross, and usually doesn't result in any kind of meaningful change.