To the Editor
Unpublished Letter to the Editor of the New York Times Regarding Op-Ed "The Modern Asylum"
To the Editor
Oh look a video.
Transcript, though captioned (fairly) accurately:
This is an address to parents and people who care for and assist autistic people.
I have been feeling *more* autistic lately, if that makes sense – just using echoes more, realizing scripts more, thinking about things I do. I mean, I flapped at a cat for five minutes the other day.
To other Autistic people…
I stim more, I am more open… and I that’s because I follow so many people on Tumblr and talk on Facebook a lot with people.
Being around other Autistic people is important.
Being around other Autistic people lets you know you can do things with them and also on your own, when situations permit. It gives you almost an internal permission to let go. When I started the k-pagination blog, I was like “Will only write activism posts and reblog activism posts. Serious stuff.” And now it’s just… I need the joy of being Autistic. I will write posts that might seem a bit silly. I will start tagging with the echoes I always had in my head and never used.
Being around other Autistic people is important.
If you’re a parent or caregiver, reading this, let your autistic kids and adults (if you have legal guardianship or something), be around other Autistic people. Don’t isolate them from neurodivergence. That in of itself can be as harmful as a physical seclusion room.
This is not my usual, long and flowing eloquent and bit detached activism. This is an autistic person asking for people to respect lived experiences. I was like your child.
I climbed trees, I ran around shrieking and screaming all the time, and even if I did now, it wouldn’t make me less than. I did a lot of things in those alarmist documentaries. I am worthy of dignity and autonomy. So are your kids and relatives, whether nonspeaking or speaking or need aides and what level of supports they need.
And other Autistic people are the ones who taught me self advocacy and activism. It was just a label before I met Autistic people I talk to and call friends and acquaintances and respect. Though psychiatrists and psychologists can be useful, other Autistic people taught me what autism means, not them.
And to Autistic people watching this, you have the right to be around other Autistic people and talk and share your experiences, and have validation.
Adapted from Facebook.
Summary [tw mental institutions at link]: UPenn bioethicists are proposing for the return of a patient-controlled mental asylum that would help keep the mentally ill out of prisons and with a place to stay so they are not homeless.
In 1977, Judi Chamberlin, a former mental patient, wrote, “The whole experience of mental hospitalization promotes weakness and dependency. Not only are the lives of the patients controlled, but the patients are constantly told that such control is for their own good, which they are unable to see because of their mental illness. Patients become unable to trust their own judgment, become indecisive, overly submissive to authority, frightened of the outside world. The antitherapeutic nature of mental hospitalization has long been recognized.”
We need community supports. It has been known by mental patients who founded their own liberation movements and their own support groups. It was legally ruled as such for states in 1999 in Olmstead v. L.C., which mandated that states must provide community integration supports before institutions.
State-run or not, we should not be in institutions.
If the problem is that we are going into prisons and into the streets, then there are not enough community supports in place.
The principle of “charity” that said it would be more humane to house us in institutions to get us off the street is what caused the original burst of institutions. What makes anyone think this would be different?
The article says “He envisions asylums built in a campuslike environment with varying degrees of security. They would be “patient-centered and collaborative,” and “modeled on the principles of the recovery movement, which emphasizes patient autonomy to the extent that that’s possible.”
The first problem is that “varying degrees of security” – no one would be free of the institution, to come and go as they please. “Security” translates to “they only leave and go places when we tell them to.” Additionally, the “patient autonomy to the extent that that’s possible” part essentially leaves that in control of the “professionals” – the extent to which patients can make decisions becomes largely dominated by the professionals.
The second problem is places have already tried that and it failed because the staff ended up mostly controlling it, even if it started out perfectly “come and go as you please” (see: Fountain House). The division between those seen as “sick” and “needing help” and the “normal” and “helpers” tends to get very wide very quickly. It is also kind of a slippery slope thing where you can start a place with the best of intentions and it all goes wrong, and then more institutions will happen and we’ll be back in the 1940s, 50s, 60s, 70s before you know it.
Judi Chamberlin also wrote: “A tremendous gulf exists between patients and staff in mental institutions. Patients are seen as sick, untrustworthy, and needing constant supervision. Staff members are seen as competent, knowledgeable natural leaders.”
This is still largely the case with stigma against mental illness and disability. The stigma is too pervasive for that to even begin to work – with any level of “staff member.”
No amount of mental institutions will help the mentally ill in the long run. These places damage people’s self-worth. They create a sense that the person cannot return to the outside world, that the person is broken. No matter how altruistic the intentions, they do not work. At best, they trap people for significant periods of time in places with little to no freedom. At worst, they degrade into physical abuse, malnutrition, overcrowding, and injury. Best or worst, they depersonalize, dehumanize, and remove control from people.