Wolfensberger at the Door

CN: abuse, rape, and ugly history

Tell me a joke please, Cal.

Sure.

A man with an intellectual disability is awakened by the doorbell at 11 am.

He stumbles out of bed, pulls on his Superman bathrobe, and shuffles to the front door, his paraplegic boyfriend wheeling behind him.

He opens the door.

A man is standing there. He takes in the scene and says sternly, “You should eat breakfast by 7, that outfit is not appropriate for an adult, and an abled professional girlfriend could do so much more for your social standing.”

The man with the intellectual disability slams the door shut, slams home the bolt, and shrieks, “The Wolfensberger is at the door!”

Uhhh… now explain the joke please, Cal.

Sure.

Bengt Nirje (yes, I am totally that person who answers questions like “What are you doing today?” with “So, right after World War II…”) is generally regarded as one of the founding figures in self advocacy. Of course it was already happening, but Nirje did stuff like convening a group of people who used services for people with I/DD, asking them what they wanted, and reporting on their answers to professionals. Professionals began to formally support self-advocacy (and also to co-opt it, which is a whole other debacle) and the movement formalized and developed an international structure in the 1970’s. Nirje matters; but it also matters that a white European educated abled professional man gets credit for what people with I/DD were already doing, and in some cases getting killed for. We don’t know their names; they are buried in unmarked graves. And it matters that the demands of the 1960’s are the same as the demands of the 2020’s.

So Wolf Wolfensberger (1934-2011) was a colleague of Nirje’s. And he did a lot of his most important work at a time when things for people with I/DD were pretty horrific. (See Geraldo Rivera’s 1971 Willowbrook exposé, which unfortunately I have not been able to find in captioned form. See also Roland Johnson’s memoir Lost in a Desert World.) There was also reason to hope. (See the 1976 short film People First, also not to my knowledge available captioned, and Johnson’s “Who’s in Control?” keynote, available uncaptioned and in text form in an appendix to the memoir.) The ’70’s were the decade that got a right to public education for disabled American kids — and sure, that education tended to suck for many, but freeing parents from 24/7 responsibility for their disabled kids meant massively reduced pressures on working-class parents to institutionalized their disabled kids. (That’s one of the key differences between Judy Heumann, growing up in a sheltered and relatively privileged home and getting a teaching certificate, and who became the face of the Section 504 protests, and Bernard Carabello, whose mother could not both raise him and feed her other kids, and who became the face of the Willowbrook protests.) He worked in the field (he was involved in the fight to get people out of Beatrice State Home — and I recommend the Project II chapter of Shoultz and Williams, We Can Speak For Ourselves.) Wolfensberger was also a theorist.

Let me be super clear that I regard Wolfensberger as a major ally given the context he was working in — but his legacy has been used abusively. Therefore in the 21st century I am not a fan, though if I time traveled back 40 years I would be.

Wolfensberger’s first big thing was normalisation. Disabled people should have access to the same patterns of life as abled people. Similar housing, similar education, similar bedtimes, similar meals, similar patterns of homemaking or going out to work, etc. Not Willowbrook, Pennhurst, Beatrice, Fernald, Forest Haven, etc.

At Willowbrook, people who could not feed themselves were allotted 3 minutes per meal for staff to pour a gruel down their throats. They were too short staffed for more. People’s teeth rotted out of their heads because they never chewed, and several a month died of choking or aspiration pneumonia. Hell fucking yes, normalisation was a step forward.

The problem (this insight comes from Rabbi Ruti Regan) was that while services for physically disabled people were to a significant extent organized around actual needs that people wanted met and so transition from large institutional settings to the community could be accompanied by significant gains in self-determination, services for people with I/DD tended to center on containment, control, and cost-effectiveness. (You know those “autism farms” so many people love? They have roots in institutional farm colonies where “feebleminded” people were forced to labor for no pay to reduce the tax burden on ableds for locking people up. Been there, done that, learned nothing apparently.) So normalisation became a justification for coercing people into ways of life that worked for other people. (See the struggle over subminimum wage, where people are forced into the “dignity” of a 30 hour work week at possibly pennies per hour doing menial tasks.) For instance I have known incontinent wheelchair users with I/DD who were forbidden to have linoleum floors for easier mobility/cleaning because urine soaked carpet they couldn’t independently travel across was more normal. We see it today in denying kids educations unless they are “table ready” at 5. (If Joey needs to move to learn, fucking let him move.) We see it today in guided access to AAC, in supportive adults being used as “reinforcers” kids have to earn access to by behaving as if they were not inadequately supported, in the “I understand what you are telling me what you need, but I won’t give it to you until you use the talker,” in ABA and Positive Behavior Supports and PECS and Communication Temptations, and so on and so on. All of these things are rooted in society’s eugenic war on the “feebleminded” (which included such categories as poor people, women who had been raped, racialized people, etc.). There is a reason “my mind is fine” ablism is so deeply entrenched in physical disability culture. (See Crip Camp, or my “Critic of the Dawn.”) It’s that in distinguishing themselves from us, physically disabled people improve their position at our expense.

Well, Wolfensberger’s next big thing was social role valorisation. And again, in historical context, a major accomplishment. It’s an analysis of how people who are devalued, or at risk of devaluation, also face further devaluation based on the social roles they are forced into, and it offers specific tactical ideas for how to address that.

For instance, some schools have programs where all (and only) the kids in segregated ed are trained to do janitorial work and given daily assignments like cleaning the cafeteria after everyone eats. This is talked about as “transition planning”: after graduation/aging out many of those young adults are placed in janitorial work. There are multiple things wrong with this. None of those is “kids should not be expected to clean up.” There are schools where everyone cleans. And janitorial work is perfectly honorable work which some people like doing. But we tend — at least in my area of the world — to devalue janitorial work and those who do it, and there is something wrong with shunting some kids toward open possibility and others toward one option (whatever it is) based on marginalized status. (This too has roots in the menace of the feebleminded era: boys who grew up in state schools were often sent to the farm colonies and girls were placed in domestic roles or cleaning nursing homes once they reached adulthood. Segregation by sex was both due to gender roles of the era and the fact that controlling fertility was a big part of the whole endeavour.) There is also something wrong with teaching a relatively-privileged group that a relatively-marginalized group is there to clean up their mess.

Let’s be blunt: most of us engage in some form of role play. Sheryl Grossman, who used to coordinate some joint work with a couple of American disability groups, is a very small woman, who shops in the children’s apparel section. She dresses very formally to avoid being dismissed as childlike. When she is on Capitol Hill, she is scrupulously professional. I go the opposite way: we have professional lobbyists. When I go to DC to lobby I wear the same worn clothes I always wear. I am open about how I travel. My approach — and it often works to get me into offices that ordinarily turn away non-constituents — is “I come from a poor and struggling community. I’m not from your state, but I’m who could make time and scrape together the cash to spend 24 hours on a bus or train to come here.” Neither of us is being dishonest — these things are accurate representations of who we are (Sheryl is vastly more socially appropriate than I am). But they are also roles. Wolfensberger’s point is that it is important to give socially devalued people access to socially valued roles, as a way to challenge the devaluation.

And of course the coercive nature of all of this stuff twisted it. A lot of the abled support for person-first language (PFL) comes from trying to separate the person from the role of disabled identity whether they want to he separated or not. Disabled supporters of PFL — who include some of the most devalued people in our society — are using a specific tactical insight to challenge their devaluation. Abled people who insist on PFL (as opposed to respecting community norms and individual preference) and physically disabled people who refuse to accept self-advocates who want PFL are reinforcing that devaluation in a subtle way. Disabled people are discouraged (or prevented) from having marginalized friends and support people. Blue’s Clues t-shirts and Mickey Mouse lunchboxes are banned because they will encourage abled people to treat people with I/DD like children. (Whose wardrobe gets policed outside of work settings? Whose friendships require permission? Children’s. And we can argue about the appropriateness of that (seriously during a pandemic kids are getting in trouble for wearing hoodies in Zoom classes and WTF?!), but the ridiculousness of mandating that we treat people like X so they don’t get treated like X never seems to occur to the people doing the mandating — because the real goal is control.)

So. Again.

A man with an intellectual disability is awakened by the doorbell at 11 am.

He stumbles out of bed, pulls on his Superman bathrobe, and shuffles to the front door, his paraplegic boyfriend wheeling behind him.

He opens the door.

A man is standing there. He takes in the scene and says sternly, “You should eat breakfast by 7, that outfit is not appropriate for an adult, and an abled professional girlfriend could do so much more for your social standing.”

The man with the intellectual disability slams the door shut, slams home the bolt, and shrieks, “The Wolfensberger is at the door!”

For extra credit…

Go read Ursula LeGuin’s The Ones Who Walk Away From Omelas again and ask yourself why the most moral option in that story is disengagement, and nobody ever, ever, ever fights for that kid.

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