Photo: Black and white photo of people with disabilities neglected in a large, mostly empty room inside Willowbrook State School.
As adults with disabilities, we face inadequate, underfunded, and often outright abusive and coercive systems when we need help with housing, employment, medical needs, or just about anything else under the sun. Our doctors discriminate against us by deeming our lives not worth saving or treating with the same quality of care as non-disabled people. Our teachers abuse us in the name of behavioral modification and classroom control. We rarely have the right to choose who provides our daily services when we need help with household chores, taking care of ourselves, or getting from one place to another. If those staff abuse us -- and statistically, they will, financially, emotionally, physically, and sexually -- we are rarely believed if we tell. We have no power to change the circumstances.
We are murdered -- in hate crimes by strangers, by acquaintances, by our own families and often by our own parents. Those who kill us usually get away with it because society thinks of our deaths as mercy killings instead of callous, brazen murders. Our existence is criminalized -- how we move, communicate, breath become targets for police violence. Ezell Ford had psychiatric disabilities. Mohammed Usman Chaudhry was autistic. We languish in jails and prisons, denied equal access to necessary services, imprisoned because the system was designed to fail us. Combine a failing social services system with a failing criminal (in)justice system, and yes, you will find autistic people and people with psychiatric disabilities throughout our prisons.
Our parents and families are told our whole lives that once we turn eighteen, it's time to get a guardianship. It's time to start looking for group homes or residential facilities so we will cease to be "burdens" on our families until we stop breathing. Because we are perceived as perpetual "children" trapped in adult bodies, for whom the "burden of care" should no longer rest on the families who already had to "suffer" through eighteen years of dealing with us.
In other cases, even when our families do love us and believe that everything they do is genuinely in our best interest, they are told that the best way to help us, the only thing that can possibly benefit us, is to place us in institutions. This is where Christine Montross's op-ed dives from an important discussion on our failed services systems to a horrifically dangerous diatribe.
If you believe Christine Montross, the solution to our current crisis is to build new asylums. To create a modern asylum, better known today perhaps as simply an "institution," in which to place everyone with high support needs. Everyone with psychiatric disabilities, everyone autistic. She claims her asylums will be nothing like One Flew Over the Cuckoo's Nest. She claims her asylums will be full of supportive strategies to meet the sensory, emotional, and educational needs of their occupants.
But at the end of the day, even the least overtly abusive institution is still an institution. The solution to the problem of thousands upon thousands of us incarcerated in prisons without services is not to build different types of prisons. A therapeutic prison is still a prison. An institution where residents are not sent because they have been convicted of a crime is still a prison.
When you live in an institution, you lose the right to control even the smallest aspects of your day to day life. You have no choice over when you wake up or go to sleep. You have no choice over what activities you get to participate in. You are not allowed to leave without written permission and staff following you every step of the way. You are not allowed to decide who is allowed to visit you, when, or for how long. You are not allowed to decide which staff provide you with your services and supports. You are not allowed to decide if you get to work or where you can work. You are not allowed to decide how you will look, what clothes you will wear, what food you will eat, or what your own space will look like. You are not allowed to decide what medications or therapies are right for you, or which are not. You are not allowed to make your own decisions about dating, romance, or sexuality. If you are queer or trans, you will most likely be denied the right to even express who you are.
When you are in an institution, you lose all right to any choice.
And yes, institutions still exist. They exist under the guise of group homes, and therapeutic boarding schools, and specialized residential facilities, and correctional facilities, and locked psychiatric wards, and nursing homes, and provider-owned and managed farmsteads and ranches, and clusters of group homes, and gated communities, and isolated "campuses." What all of these disingenuous and not so-well-disguised types of institutions have in common is their shared propensity for coercion, abuse, and control of the people living in them.
De-institutionalization, the movement away from large-scale, publicly run institutions for people with disabilities, is not over. The only correct direction is forward -- toward greater autonomy, recognition of individual agency, support for self-determination, and increased funding for better and more community-based services and supports. The scientific literature is robust; community living is the best possible option. Why? Because it means that we have a chance to assert our right to exist in the same communities as non-disabled people. It means that we have a chance to reclaim control of our own lives, build networks of choice with one another, and forge alliances against the kinds of abuse that proliferate behind the closed doors of institutional settings.
Which brings me to this: The State of New Jersey is proposing a new plan for how they fund services. Their plan would require anyone providing housing services or supports to respect the rights of disabled people to control our own lives and decisions. Their plan would prohibit providers from warehousing disabled people in segregated group homes or any other kind of facility where we supposedly "belong" simply because we are disabled.
But there is a massive wave of providers fighting back, trying to prevent even one state from attempting to recognize what we have fought so long and hard for -- the right to dignity. Inclusion. Choice. Autonomy. New Jersey is letting the public send comments. We have until February 26 to make a difference for our community in New Jersey.
Will you tell New Jersey that we matter? That segregation is not the answer? That we needed choice yesterday?
Blog about it. Email the New Jersey folks. (ASAN wrote a helpful script that you can use and modify.) Tell the folks you know who care. Let's show them just how vocal our community can be.
No modern asylums, whether as brick-and-mortar large institutions, or disturbingly leafy green "campuses" for "those with special needs." We do not need more segregation. We demand recognition of our existence!
Done. Thank you for the post and the link to sample text!ReplyDelete
Segregation is not a solution.ReplyDelete
Hi I've just been blogging about this in the UK too - wisegrannie.WordPress.com - where we're campaigning for change at JusticeforLB on FacebookReplyDelete
My mom's a psychiatrist and my sister and I are autistic. I'm passing college, but my sister not only isn't, but doesn't want to.ReplyDelete
So Mommy stuck her in a Florida institution.
Holy shit, my mother's a lot more dangerous than I thought.
That is truly awful! If there's anything I or my network could do to help, please let us know. My email is Lydia@autistichoya.com, and phone is (202) 618-0187, which you can text or call. I might know folks in your area (if it's different) and in Florida.Delete
Please, in whatever you can, reach out to free your sister from this completely robbery of agency. Stay strong.Delete
If abuse can occur in any setting, creating regulations based on physical characteristics is not the answer. NJ is simply doing provider self-assessments- that is like asking the barber if you need a haircut! Increased accountability, transparency, and active leadership of self-advocates is needed. Waiver participants need to be surveyed- not just providers - and it can't be assumed that just because people live at home abuse isn't occurring! Please don't automatically assume a provider-owned farmsteads are institutional, they are the preferred home to many autistics. Watch this video of Down Home Ranch: http://youtu.be/Hp5ajV1RLBw Ranchers have a variety of paid jobs, are in romantic relationships, can choose to live by themselves or with others, can choose their schedules, help their neighbors (because rural folk actually do that!), have control of their finances, have control over where they vacation and where they hang out in Austin- they are not forcefully segregated, certainly not living in an institutional setting, and have more freedom, control and opportunities than a lot of others I help find housing and supports... Please focus advocacy efforts on QUALITY, enforcing Person-Centered Plans, and ACCOUNTABILITY to waiver participants. The state should not automatically be able to say they are 100% 'Home and Community Based' or integrated because the statistics on a spreadsheet say they are! Please don't promote regulations to limit the already meager housing options based on physical characteristics ;/ All policy should be based on the lived experiences EXPRESSED BY individuals with disabilities not just their providers!ReplyDelete