I say most of the pieces of this fairly often, but I am going to say this again, and try to be deliberate about what all I say: We behave as if some disabled people’s primary disability-related need is to be controlled.
This includes:
* people with intellectual disabilities (actual or ascribed)
* autistic people
* people with mental illness (actual or ascribed)
* children
* multiply marginalized disabled people
As Ruti Regan has pointed out, congregate settings designed for people with physical disabilities tend to be designed to meet actual needs such as assistance with toileting and bathing. The loss of control in those settings stems from the fact that you cannot mass produce care without institutional control. You cannot provide 92 people with 3 meals a day that meet certain kinds of dietary requirements including physically feeding a significant number of them, and enable them to choose what and when and where they eat, and who helps them eat. You cannot provide 92 people with bathing and toileting and dressing assistance on a daily basis, and enable them to decide when they get up, when and how often they bathe, and so on, without significant resources and a very strong leadership committed to self-determination.
The other two large traditional institutional systems designed specifically to contain disabled people are explicitly preoccupied with control. With building people out of raw materials, training them to behave in certain ways or meet certain prerequisites for freedom, protecting inmates from the broader community, each other, and themselves, protecting the community from inmates, obtaining compliance, etc.
When we move needed services from large congregate settings to smaller congregate settings or offer them in a person’s own home, it is possible to increase self-determination, because loss of self-determination was a byproduct, not the actual point. When we move control-based “services” from large congregate settings to smaller congregate settings or to people’s own homes, they are still control-based. This is why people subjected to these kinds of services have been talking about “institutions of one” and similar concepts for decades.
The independent living movement (ILM), whose leadership as a whole (with exceptions) has not seen a real need to engage with different forms of institutionalization, to investigate the differences between the nursing facility (NF), developmental disability (DD), and psychiatric (psych) systems, much less the myriad other American forms of institutionalization. And so they are missing this, the critiques that members of the self-advocacy and psych survivor and neurodiversity and mental health consumer movements have been making.
This is partly, I think, due to prejudice. As Eric Warwick has pointed out, we activists and advocates are all theorizing. All of us. We are all thinking about ways to make the better place, and we all have ideas about why things are problems and why certain ideas would do a better job of fixing them than others. But not all of us are theorizing in ways that disabled people socialized by neurotypical norms recognize as theorizing.
I recently heard a self-advocate answer the question, “If you could change one thing about the world to make it better for people with disabilities, what would it be?” The man spoke briefly about violence (the number one answer from other panelists had to do with real employment). As he ended, he said that violence “gets on my nerves.”
The audience, almost all of it crips (disabled people socialized through the ILM), laughed. But that’s theory, as expressed by someone who has been provided limited access to the linguistic tools educated people use for theory. To flesh the theory out and make it apparent to the audience would have taken follow up questions like “How would that make things better?” but the theory is there.
For as long as we have records of what self-advocates from the self-advocacy movement have been talking about, they have been talking about control, about who decides how they live their lives, and it is impossible that that wasn’t a primary concern of those leaders and theorists we don’t have good records for, those who ended up in numbered graves in overgrown, forgotten cemeteries on the grounds of state institutions.
For as long as the neurodiversity movement has existed, we have been talking about control. The movements of people who want access to or freedom from psych services have also spent a great deal of time talking about control.
Crips often use geography as a proxy for control. If your housing unit is similar to others close to yours, and most of the people in those housing units are abled…. If you travel on the same public transportation as abled people, attend the same classrooms, work at the same jobsites….
This makes it harder to see distributed or scattered-site agency-based institutionalization in which an organization contracted to meet the legitimate needs of physically disabled people encounters the same problems of trying to mass-produce care: for instance, in a society in which most people get up, get showered, get dressed, eat breakfast and head out the door in the same block of time, workers trying to get enough hours to bring home a living wage and administrators trying to schedule them have an interest in forcing people into patterns they may not have an interest in keeping, and that mat make it harder for them to maintain an integrated lifestyle.
But it also completely erases the fact that proximity is not integration and that control is now increasingly individualized. People come into a child’s home to teach their parents how to control them; teachers encourage a student’s classmates to control them; people are encouraged to call 911 for “wellness checks” on neurodivergent people, and so on.And these are regarded as supportive services, similar to helping a person get out of bed and have breakfast.
One of the fundamental differences between the DD system and the psych system is that once you are plugged into the DD system there is really no way out. Deinstitutionalization meant applying the technologies of control in new settings. Psych deinstitutionalization meant abandoning large numbers of people to fend for themselves. So when the President wants to reopen the asylums (the original draft of this post was written in 2019), that’s a bad thing. Of course it is. We need community-based services rooted in self-determination; we need housing; we need employment and benefits assistance; etc. We need the services people need.
But it is also frustrating to see so many people in the ILM who routinely advocate for the forcible institutionalization of disabled people (never themselves: their minds are fine!) in “home and community-based settings” suddenly acting as if this is an unprecedented attack on the whole community. It’s not an attack on the whole community; it’s an attack on specific groups of us. And it’s not unprecedented: we have been coping with these attacks from our “leaders” for as long as I can remember.
What can we do to improve the reach of the people who have been doing this work? (I don’t mean me. I have an audience. I mean the people whose names most of us don’t know.) They exist and they deserve to be heard. And what can we do to decrease the authority of those who have, however unknowingly, been promoting the institutionalization of segments of our community?
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