Sometime in the next few years, a new institution will open in Delaware. Despite the New York Times and Boston Globe‘s pearl-clutching angst about the supposed devastating social impact of deinstitutionalization and lack of desire to consider newer, better, cleaner asylums. This institution, like many similar ones cropping up mostly unnoticed outside disabled activism in the past several years, claims to be an “intentional community of choice” offering people with disabilities more options for housing with supports in place that they might need.
That rhetoric is extremely misleading at best, and outright dangerous at worst. It completely twists the meaning of the word “choice” beyond all recognition, to an extent that should make any English teacher cringe in shame.
Over the past several years, I’ve been working on policy advocacy around a set of federal regulations known as the Medicaid Home and Community-Based Services Rule. This is better known as HCBS or the “community rule” for short. The point of the community rule is to establish specific rules about what kinds of living situations are institutions, or so institutional they’re basically the same thing), and what kinds are not, so that only the housing and residential services that aren’t institutions can get HCBS funding.
In looking to identify patterns of institutions that claim to be community based and focused on choice while actually being restrictive, coercive, and institutional, I noticed a disturbing trend among autism parents. These folks, and other non-disabled family members of developmentally disabled adults are pushing advocacy and fundraising for whole villages, gated communities, campuses, farms, and ranches as medium to large scale housing schemes for autistic and other disabled adults. These parents claim that their children (who are often actually adults) would actually want to live in a group setting with other disabled adults receiving a high level of support in home, and that to insist that everyone can live independently in their own apartment or house is actually denying their children the right to choice.
The most recent installment in this saga is a new institution to be funded by the Ford Foundation, which along with its grantee, Homes for Life Foundation, praises this project as a wonderful opportunity offering a real choice for disabled adults and an alternative to the “restrictive” interpretations of the famed Olmstead v. L.C. community integration mandate from 1999. The document outlining the new project even quotes autistic activist and artist Judy Endow describing the importance of being among other autistic people in an attempt to show support for segregated settings. It notes the devastatingly high numbers of developmentally disabled and other disabled people who are locked up in jails and prisons. And it discusses in depth the idea of many disabled people wanting to live around other disabled people, and how that should not be stigmatized or removed as an option.
Here are the real issues though: These types of projects take the meaning of “choice” and “autonomy” and upend them. Of course, many disabled people would want to choose to live in a group with mainly or entirely other disabled people, perhaps even on a farm or ranch. Of course, many disabled people might need or want to receive in-home supports to manage daily life. Of course, disabled people should have the ability to make meaningful choices about where we want and choose to live. Of course, disabled people should not be dumped into supposedly “integrated” apartments without the supports we need and want, or warehoused in jails and prisons when we fail to get by without the supports we need and want.
But when disabled people seek to create intentional community, centered around shared disabled experiences, mutual support, interdependence, and group living, we need to be in control of our own lives and in control of the supports we are receiving. These projects, almost entirely funded by non-disabled family members and foundations representing those folks, do not proposed creating villages, intentional communities, gated communities, campuses, etc. where the disabled residents would actually control their living situations. They accept at face value the reality that some disabled people would prefer a group living situation, and assume that so long as that is provided, everything would work out.
For a group living situation to be meaningfully chosen and to actually respect autonomy, choice, and dignity, the disabled people living there have to have the ability to opt in and to opt out at any time. They have to have control over which staff are hired and fired, as well as over which services and supports they individually receive or decline. They must have the legally and meaningfully recognized ability to change their minds. They must have control over how many roommates and housemates they have, and who those people are. They must have control over the entire vision and direction of the community at all times. Most importantly, they have to have the ability to decide whether, and when, to leave, if they choose to do so.
This project through Homes for Life instead horrifyingly takes a prominent autistic activist’s words and uses them to try to claim that this group living situation – an institution, no doubt – is actually an intentional community. The reality is that it’s intentional, but via design meant to assuage ableist fears of non-disabled family members of disabled people – not via design meant to create a loving and conscious community led by and for disabled people.
In my work on the HCBS community rule, I investigated several such campuses. I found that even if they are not directly physically abusive, they still end up isolating disabled residents by making them reliant on staff to do everything, stigmatizing them by bringing them “into the community” only in groups that are obviously from the disability-specific residence, and not enabling individual residents to make meaningful choices about either their everyday lives or the arc of their lives on the larger scale. There is a huge difference between disabled people choosing to associate and live alongside other disabled people. Pressuring disabled people to live in disability-specific, segregated, and isolating environments with little to no control over any aspect of our lives.
The “intentional community” here is cringe-worthy not only because it promotes a particularly insidious kind of institution (the kind that looks nicer and sounds better – something that Mel Baggs has famously written about in hir blog), but because it’s part of Ford Foundation’s long history of trying to fund social justice movements into more conservative and regressive directions. Several decades ago, Ford Foundation was a major funder of Bruno Bettelheim’s infamous work on the refrigerator mother theory of autism. Bettelheim claimed that autism was caused by cold, emotionally distant mothers whose children recoiled and withdrew from their lack of affection. I would have hoped they might have learned and done better, but now they’ve decided to accept the reasoning that creepy, institutional villages masquerading as “choice” are worthy of funding and support.
It’s also rather upsetting to see the Homes for Life Foundation/Ford Foundation document play into the same tired tropes used for decades to attack the autistic rights, neurodiversity, self-advocacy, and independent living movements. Notably, none of the authors are autistic. While the document coyly uses a quote from Judy Endow to support its aims, its non-autistic authors also preemptively dismiss any potential complaints by actually disabled people as the whims of only those “‘self advocates’ who are often articulate, quite independent and may have college or even advanced degrees.” They question whether someone who seems articulate or has a college degree can count as disabled
As many of us will tell you, criticism of large-scale disability-specific residences designed by non-disabled people is not only the province of disabled people who can write articles or go to college. It’s also rooted in the historical self-advocacy movement pioneered by such luminaries as Bernard Carabello who survived 18 years in Willowbrook. That self-advocacy movement continues to be led primarily by and for people with intellectual disabilities, who can perfectly well speak for themselves even and maybe especially when non-disabled people refuse to listen. For those of us who went to college (whether or not we also have intellectual disabilities) and write articles, I can assure you that those traits don’t automatically come with other skills or abilities – that’s why we’re still disabled. It’s true that no one of us can actually speak for every other disabled person, but, we can point out the importance of listening to disabled people, and listening to our words in context, when thinking about whose perspectives are most important in funding disability-related housing initiatives.
Today, the Ford Foundation has decided to support a project that claims to be offering choice for disabled people without involving any actual disabled people in crafting its proposal. And not only that, but a project where one of the document authors is known for advocating for electroshock therapy on autistic children to make them more “compliant.” This is even more profoundly disappointing after a statement last year from Ford Foundation’s president Darren Walker on the importance of addressing disability discrimination in their civil rights portfolio – including by recognizing that the foundation has zero people with apparent disabilities on its board of directors.
The Ford Foundation could do far better than another institution and a report written about us without us. They might start, for instance, by funding the ground-breaking work at the Bazelon Center for Mental Health Law in challenging institutionalization of people with mental disabilities, and the impact of mass incarceration and the school-to-prison pipeline on students with disabilities. They might grant money to groups like HEARD, which has long fought for Deaf and disabled incarcerated and returned individuals, or they might grant money to disabled folks doing work on the ground in local communities, who are often not organized into 501(c)(3) nonprofit organizations, but who are working to create actually intentional communities chosen and controlled by the people who intend to live in them. The trend of funding something “innovative” by supporting institutions and listening to non-disabled people over us should be long since buried in the past.