Stop calling institutions “schools.”
There is a debate happening in the Washington State Legislature right now over whether to close two state run institutions, MOSTLY housing adults with developmental disabilities.
To be clear, I am firmly on the side of CLOSING all institutions. I stand with self advocates who have survived institutions (the walls) AND institutionalization that happens in community settings that operate as the medical model of care out in the open. It is also scary as a parent to a disabled child to realize that institutions could be a fate we have to physically, mentally, emotionally, and financially gird against.
But I am frustrated with both opponents and proponents of institutions.
Proponents because they show the most care about people with disabilities when state employee’s who live in their districts cry foul about having to find a different job or relocate to where the disabled person lives (JOBS are prioritized over impacted people). They also refuse to acknowledge the inherent ableism and racism in keeping humans locked inside “campuses” largely resembling prisons.
I get frustrated with opponents of closing institutions because they keep claiming that the total cost of care is cheaper in the community. It isn’t, especially when you factor in the unseen/devalued/unpaid care family members, (mainly mothers) pay to keep their child safely in their homes. Mothers are still expected to give up their careers, personal lives and their livelihoods to care for their child. They’re openly derided among service providers as “lazy” for wanting their adult child to have things to do during the day and live a full life.
For adults who live in the community, there’s so little programming offered and most everyone reports boredom, isolation, and loneliness. It doesn’t help that many of the same people who want to close institutions also OPPOSE expanded day services for adults living in the community. This disconnect has gone unacknowledged and has formed a very cogent basis for the opposition.
The only alternatives offered to families when the parent dies or becomes unavailable to care for their adult child is to spend hundreds of thousands of dollars per year in supported living or institutional care, where it seems everyone but the care providers make a living wage. This reality is never acknowledged, erases the enormity of women’s contributions to the disability community, is offensive, and morphs into anti-parent rhetoric that reveals disdain for the very families who are offered almost NO community care for the entirety of their disabled child’s life. Mothers still largely survive fathers, and I know too many who are in their 70s still trying to care for their son’s and daughters at home with almost no help.
Not that I care about offering the public a “good deal” when it comes to caring for disabled people. I pay taxes to ensure a qualify of life for people who cannot work. I do not want to subsidize their or their family’s misery and isolation.
I have also been unsuccessful in getting advocates to care about the invisible grooming of institutionalization that happens starting with “birth to 3 intervention services.” We can close institutions all day long and eliminate congregate settings, but the hearts and minds of non disabled people are the real battleground. This issue deserves a deep dive into the assumptions underpinning our service systems, and while we’ve started, we’ve only scratched the surface.
The community care supports are woefully understaffed and undertrained. We have to admit this or we seem clueless and out of touch. Caregiver turnover reaches 50% a year. There needs to be a major anti-ableist overhaul in our community based services and supports requiring relevant and responsive training for caregivers (specifically co-regulation and low demand care support versus interventionist and de-escelation after a person is already struggling) and intensive administrative accountability shifts to require ALL supported living providers to properly serve ALL people who need supported living, (not just the ones they cherry pick to serve). I want outcry and accountability when community based service providers fall short. We can’t be taken seriously unless we’re willing to hold community based support providers accountable as well. And the case for institutions remains because supported living providers reject people with high support needs, especially behavioral support needs, and community based caregivers, which also turn over very frequently, are not trained to support people with high support needs.
And as always, the compensation needs to be attractive enough to attract and retain quality care professionals.
I digress.
These institutions are euphemistically referred to as “schools,” a term likely borrowed from Indian Boarding Schools which non impacted people NOW largely agree were an atrocity. In the early 1900’s, when these institutions were first opened, “mentally deficient” people were remitted to these “schools.” What did it take to be mentally deficient? Read The Ugly Laws And how do these institutions treat people when fewer people in the community have eyes on them? It’s not good. People who have been institutionalized and survived widely report they were happy to leave. Proponents never acknowledge these stories and routinely discount survivor’s experiences. You lose me when you do that.
Let us not wait 100 years to decide that these institutions are what can properly be concluded now as odious for people with developmental disabilities. Policy makers know this is true because they abstain from calling them by what they actually are. These institutions aren’t schools in anything but name, as they were statutorily changed in the late 1980s to reflect that fact. (“The term "residential schools" was changed to "residential habilitation centers" by 1988”) Institution “centers” exist to surveil and incarcerate humans for the crime of being born disabled. (“I often notice (usually non-disabled) folks in policy work talking about the crisis of mass incarceration impacting folks with psychosocial disabilities/mental illnesses. After noting disproportionate representation, they’ll insist that because prisons aren’t the right place, we need to build psychiatric treatment facilities – completely missing the connection: institu- tionalisation is incarceration. Psychiatric institutions and prisons exist for surveillance and control, and engender the same violence.” Lydia X. Z. Brown p. 188)
People deserve to live in the community alongside their non-disabled neighbors, and they also deserve properly trained, anti-ableist, anti-racist care providers who are well compensated. These tandem goals don’t have to be in opposition to one another.
