DSM Etiquette

I met Floyd in the summer of 1987, in my first institution, when I was 20. He was a social worker; he worked in the day program my unit was assigned to. I don’t usually get on too well with social workers, but I will always remember Floyd, who had a powerful influence on who I became.

Floyd taught a class whose actual name is lost to me, but I always thought of it as “DSM Etiquette.” He just cycled through the DSM-III, hitting the diagnoses you were likely to encounter in that place, over and over (there was a lot of turnover on that unit), telling us about them.

I’ve been in other classes that could be described similarly — I had already taken Abnormal Psych in college and later I would attend other trainings — but I’ve never seen anyone else do what Floyd did. And that’s a loss, because what Floyd did was amazing.

He wasn’t teaching us “insight” into our own official diagnoses. He was teaching us insight into how to get along together.

The example I remember most clearly was paranoid schizophrenia. Now, I’m not going to offer a deficit framing of paranoid schizophrenia here. You can find those all over the place. I’m going to tell you what Floyd told us.

If all you know about someone is that the nursing staff says they have paranoid schizophrenia, Floyd told us — the rules around confidentiality back then were different — then here’s what you know about them: they get told they are wrong an awful lot. Everybody is always telling them that things they see, or things they hear, aren’t real, or that things they are certain of aren’t true.

He asked those of us without the label to imagine what that might be like. What if, every time you talked about your dad, or your job, or something that you had experienced, everyone wanted to try to get you to agree that really you were wrong. He isn’t really your dad, you don’t really do that kind of work, this thing you remember with perfect clarity never really happened.

It would get old really fast.

It would interfere with the way you felt, the way you got along with the people around you, whether you felt supported or as if there was nobody whom you could count on.

He asked us to trust him that, if we were concerned that someone hear that we thought certain things were delusions or hallucinations, that was already covered. Institution staff were already telling people they were wrong. Families were telling them. Strangers were telling them. They heard it plenty. So we could let it go.

He wasn’t counseling us to lie, he stressed. If we were asked a direct question, like “Do you see that dragon?” or “Do you believe that the FBI is looking for me?” we should offer a direct answer. But if we weren’t asked, we could just opt not to talk about the dragon or the FBI. There are plenty of other things to talk about. It would be less stressful for the person with the label; it would promote a more comfortable community. And we might make friends.

Over the years I have known a number of people who believed things I did not believe — the sorts of things the Abnormal Psych instructors called “delusions.” I knew people who witnessed things I did not even when we were together — the sorts of things the Abnormal Psych instructors called “hallucinations.” I did not believe that the woman who sang to me on bad days had truly been impregnated with the Second Coming of the Son of God. I did not see the attackers the man we called “Shadow” fought off before they got down the hall to the rest of us in the first days that we knew him. I did not believe that a gas station attendant I knew was secretly doing advanced theoretical physics for the CIA, or that the reason no doctor ever found the implants another friend’s parents had arranged to have surgically placed in them was that those same parents had paid off every doctor in the city. But I also never pointed that out to people.

It is equally possible that others did not believe things I said: for awhile I had a paranoid schizophrenia diagnosis as a result of my belief that my father worked for the federal government (the payroll office agreed with me, by the way, but apparently that was just too paradigmatic a delusion for anyone to check). They never said.

We talked about other things, things about which we had a number of shared beliefs.

There are times when it is important to speak your truth as loudly and clearly as you can. And there are times to shut up and not start arguments.

I thought about Floyd the time I tried to watch the movie Conspiracy Theory, in which Mel Gibson is dismissed as he tells people preposterous things (some of which turn out to be true), and dissolved into flashbacks. I thought about him when I watched Population 436, in which Jeremy Sisto visits a small town to investigate a census anomaly and discovers that the locals share a ridiculous (but possibly true) belief. In both cases the main character is treated as both wrong and ill; in one case the audience tends to agree with the protagonist.

The reality is that we all believe things that are not true. We all have beliefs that do not serve us well. So even if we are right (which we aren’t always) about who has which false beliefs, that doesn’t mean they are fundamentally different from us. And when we start trying to coerce people into agreeing with the majority about things like what their lives are like, we stop treating them with the respect that is owed to people just because they are people.

Other people have viewpoints and perspectives. They may be different from ours. They may be so different from ours that they are incomprehensible. They may contain factual errors — in fact, they certainly contain factual errors, because everyone is mistaken about some things. This does not mean they don’t come from somewhere. It does not make them nonsensical, or unworthy of taking seriously, because people and their understandings of the world are worth taking seriously.

And because when you are not taken seriously on a regular enough basis, harm is done to you. When you are presumed incompetent, when you are treated as the inferior of the person or people you are contending with, once, you can laugh it off. Twice, you can laugh it off. But it erodes something in you, a little bit each time, until that thing is diminished.

That was Floyd’s genius, as I see it. In a place where diagnostic labels, and even the mere status of patient, encouraged our diminishment from persons to something less, in the face of the human tendency to try to reestablish personhood by distinguishing ourselves from the allegedly lesser beings with whom we have been lumped, he encouraged us not to see past the labels to each other’s humanity, but to use the labels themselves, which were often all we knew about newcomers besides their given names, as jumping-off points for empathy, as starting points for relationships.

Anyway. That was Floyd. I think of him at least weekly, all these decades later, with gratitude.

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.

Smart Again

I have been thinking about something the young self-advocate Bobby Lucas says.

When he talks about winning his fight to be fully included in the regular classroom, he talks about being “smart again.”

It’s really tempting to take that as “I feel stupid when they make me go to the resource room and do work that doesn’t challenge me, and now I don’t feel that way.” Or even “When I am in the resource rooom they treat me like I’m stupid but in the regular classroom they treat me like I am smart.” I’ve no doubt both things are true; Bobby is hardly the first person to make those observations.

But — and let me openly acknowledge that I haven’t spent enough time sorting through Bobby’s theoretical work (that is, the things he says and does to explore and deepen the way he he understands the world to work, and to conmunicate that understanding to others — and as Eric Warwick has pointed out, everyone who takes volitional action in the world theorizes) to have any confidence whether this is what he intends — what if we take him literally?

What if, in the regular classroom, Bobby is smart, and in the resource room he is not?

Because here’s the thing: how intelligent or how stupid you function as is to a significant extent about how well or poorly you are supported.

“What kind of supports do they need? What do we need to come up with? What is the plan that needs to be done? You know, figure it out. Don’t just sit there on the problem. Find the solution!”

– Bryon Murray, self-advocate

Let’s talk about the section of Emma Van der Klift’s and Norman Kunc’s book Being Realistic isn’t Realistic that addresses ability and opportunity as two necessary components of performance.

“It is widely seen as self-evident in our Western Culture that ability leads to opportunity,” Emma and Norm tell us. “If you’re good at something, the reasoning goes, then those skills, talents, and abilities will certainly foster opportunity. We rarely question this belief. When it comes to disability, fostering ability in both schools and human services has traditionally focused on teaching life skills as a prerequisite for entering the “regular” community. This approach fits with an equally unquestioned belief that improving a disabled person’s ability is the best way to improve their quality of life and increase the likelihood of later opportunities. But is this necessarily so?

They conclude, after brief reflection upon the evidence, that it is not.

“Opportunity is determined by social convention, not ability. That is, opportunity is not afforded to those who are most able but to those our society deems worthy of that opportunity.”

Let me push that a little farther: ability is fluid within limits (I will never duplicate the achievements of the great mathematician Srinivasa Ramanujan no matter what, but there is a range of performances in mathematics I am capable of, from the hopeless inability I displayed in 10th grade geometry to the real skill I honed in logic, model theory, and set theory classes. Just dont ask me to study calculus. I have adopted the position that what happens under the curve, stays under the curve), and those limits are largely determined by opportunity.

We have the formula backwards.

Look, we all know that disabled people live in a world in which access — or the power to use things to achieve desired ends — is inequitably offered. Much as we tend to reserve the word “access” to refer to power that is often denied disabled people the power to use things because those things are designed to require abilities that not everyone has, any marginalized status comes with barriers to access. If you want to take your group to DC to lobby your Senators, for instance, some people do not have access to that trip because the medical equipment they need can’t go, or because because they can’t afford to take a personal care attendant or direct support worker, or because they can’t pay their own way,or because they can’t get time off or childcare, or because safe interstate travel requires documents, or because ….

We all know that the services we offer people depend on the kind of people we think they are, including what abilities they. That’s why all the testing. That’s (part of) why it matters whether you say the R word or “learning disability” or “intellectual disability.” That’s why the National Council on Severe Abli- sorry, Autism (NCSA), is working so hard to establish that there is such a thing as severe autism, which neurodiversity advocates both pretend does not exist and spend way too much time talking about, and which requires by its nature the suspension of rights-based protections. It’s why IEPs are basically annual mandatory meetings in which children are portrayed as incompetent.

If you are living in Oregon and working for part-time minimum wage, and your partner is working 4 jobs, and you are barely making ends meet for your 5 kids, and your youngest keeps getting kicked out of daycare because she seems to have ADHD, and you don’t have documented status or health care, and you have to keep a close watch on your eldest because he can’t be trusted not to talk back to a cop while Black yet … we will never know what kind of DC lobbyist you could have been.

But for those of us who need services and supports, what we do or don’t get determines what we can do. And therefore they play an important causative role in what we actually do. And then what we actually do is used to determine what kind of people we are, including what abilities they have.

In other words, this formula is backwards, too.

Echoing my own experience, a self-advocate, Bryon Murray, has reported, “You know, when I travel, I hear a question: ‘what happened to people with the really bad behaviour? What happened to people who hurt themselves or hurt others?’ Supports! If you take the Bryon that you see today, 11 years ago I’d be slamming my head towards the wall. I’d be biting people because I feel trapped. I’d be running away. Run. Don’t understand. Don’t understand what traumatic brain injury does. Don’t understand disabilities. Not accepting it, denying it. Then when I got my supports, this is who I am. You know what? Instead of asking that stupid question, ‘What happened to people with behaviour?’ – okay, what kind of supports do they need? What do we need to come up with? What is the plan that needs to be done? You know, figure it out. Don’t just sit there on the problem. Find the solution!”

Social psychology offers us the insight of the fundamental attribution error: we tend, as a species, to overestimate the role of a person’s innate nature, and to underestimate the role of situational factors, when explaining their observed behavior. In the resource room, Bobby Lucas’s vocabulary differs from his abled classmates’ because of his Down Syndrome, not because his educators make sure to use smaller, simpler words around him than his classmates hear because they do not believe he is capable of more. Bryon Murray and I smashed our heads into walls because we were inherently self-injurious, not because we were forced into situations where we could not cope. Black Lives Matter activists are in the streets because they don’t bother with “more appropriate” methods, not because 400 years of “more appropriate” methods has still not ended in a real reckoning with what it means to be Black in a white supremacist society. Fundamental attribution error.

Interestingly, if you show an audience a video of a police interrogation shot at an angle where the suspect’s face and the back of the cop’s head, they are more likely to attribute any confession to consciousness of guilt; if you show the exact same interrogation with the angle adjusted so you see the cop’s face and the back of the suspect’s head are shown, the confession is more likely to be attributed to coercion. We attribute significance to whatever we are paying attention to rather than identifying what is significant and paying attention to that. If you went to school to become a special ed teacher or work in human services, there’s a good chance you’d be better at your job if you had taken a class in misdirection from a stage magician.

So when people say, “you are nothing like my child!” (or “my student!” or “my client!” or “my individual!” (blergh)) as an effort to shut down discussions of how to improve their child’s (or whoever’s) circumstances, they are often pointing out that the advocate’s circumstances are nothing like their child’s circumstances. Which was the point.

So back to Bobby Lucas.

Yes, he is included enough — he is getting good enough services and supports in the regular classroom — that he actually functions, and is seen as, smarter than when he was in the resource room — and can trade on that later in his educational career to further fine-tune services and supports, and advocate for more opportunity. That’s not just about physical presence (Emma and Norm have more on that); resentfully dumping a disabled kid in the regular classroom and letting them flounder isn’t inclusion. It’s about the fit of services and supports.

The NCSA crowd has a point to this extent: their loved ones aren’t getting quality services and supports in the community. But instead of calling for better services and supports, they want to pull all community services and supports on the theory that the failure to benefit adequately from community services and supports is inherent in their loved ones, not a sign that their loved ones are being shortchanged. Fundamental attribution error.

The BIPOC and not-cis-male community sees a failure of services and supports too, because the needs of white cisgender boys and men — even marginalized white cisgender boys and men — are different, in a society that consistently privileges white cisgender boys and meds, from the needs of people socialized in a world that does not privilege them in those ways. But those are the services they get (at best; often it is services customized a bit to the heavily-groomed preferences of parents of inadequately supported white cisgender boys and men, designed to meet the needs of professionals who believe they are entitled to control disabled lives while decorating their curriculum vitae with sciencey-sounding accomplishments).

Let me repeat the words of my teachers and friends: “[O]pportunity is not afforded to those who are most able but to those our society deems worthy of that opportunity.” And that has tremendous consequences for who gets to “be smart.”

Congratulations, Bobby Lucas, on your win. May it be followed by a tsunami of wins for other students who want, and deserve, the opportunity to be as smart as you are. And may you continue to use the opportunities you have been afforded, and the support of your loved ones, in your work as a self-advocate to make the world better for others.

Introduction

I was 15, and he was 2.

The rector at the church recommended me to the family as a babysitter who liked atypical kids. His mom picked me up with him in a carseat in the back. He seemed atypically quiet.

The information about him trickled out as she glanced nervously over at me.

He was autistic. He didn’t speak.

When I was 12 and 13 I had “apprenticed” at a nursery school. An almost nonspeaking autistic boy and I had sat under tables for a few months. Every so often I had commented on the world around us. Eventually he had started commenting back. The adults seemed surprised, but it made sense to me. In a busy classroom the only one who had time to be still enough to build a relationship was the superfluous “apprentice.”

So I shrugged.

He had an intellectual disability. I still thought that meant “slow.” I had sat for babies. If he was a bigger baby (he disabused me of that notion within an hour), I could handle it.

I nodded.

At the house there was more. She told me his bedtime but warned he wouldn’t sleep for me. He still nursed to sleep.

And then: “He has seizures. Do you think you can handle that?”

I pointed out that she was obviously quite thorough. I was sure she would tell me what I needed to know. And she did. I learned about absence seizures; he had several an hour.

I had never seen a parent so anxious as her husband shepherded her out the door. I was young; I did not understand it yet.

It was the same as any other babysitting job, really. We played. I fed him. Within the parameters of what his parents had said was okay, I followed his lead. Sure, we paused for seizures. But every child is an individual.

Within the year I would sit for an older child who could become violent when overwhelmed. We would spend some time relationship building before I would try things like taking him to a public pool alone. He’d melt down sometimes in public. It wouldn’t always be easy, but we would manage.

The 2-year-old, on the other hand? Well within my comfort zone.

At bedtime I took him upstairs. He was a big wiggly kid and he didn’t seem eager to have his diaper changed, so I changed him on the floor so we could relax and play as I did it and not worry about falling. Once his pyjamas were on, I tried soothing him on the bed but his mom was right: he was having none of it. We went back down.

The tail end was a bit rough. He was very tired and he cried and pawed at my chest. I tried to comfort him, but I could not satisfy him.

When his mom came back she looked at me through tears as I handed over her red-faced, tear-streaked son. I felt terrible. She asked me to wait as she put him down. I chatted awkwardly with his dad.

When she came back she asked me if I was sure about my rates. I shrugged. My material needs were met; this was pocket money for luxuries. Many of the families I sat for didn’t have a lot of spare cash. Tips were fine, but not necessary.

She seemed so upset.

Finally she told me that I was the first teen babysitter she had ever used. Usually it was special ed grad students at ten to twenty times my prices. And this was the first time she had come home to find him in a clean diaper and pyjamas. The grad students said changing him was too hard.

That, I think, was my baptism into the realities of disability service provision.

I spent a lot of time with that boy from then until I graduated high school. I loved him, and his mother was nurturing to me too. The mothers in the park would stare at us, so I played with him an extra lot in hopes he wouldn’t notice. I stayed with him while his mother gave birth to his sibling. I miss the family, even now.

Maybe my life would have turned out different if I had been sophisticated enough to know that it was hard to support him. As it was, that lesson still hasn’t sunk in.

I’m still a big believer in amateur support workers. When the prejudices aren’t formally educated in, they aren’t as forceful.

Disabled People in the Mist

The gorillas in the zoo are not free.

Regular circumstances and ways of life

In the better zoos, their enclosures are designed to simulate key features of free environments and prompt them to behave in ways that are similar to the ways free gorillas behave.

But the gorillas are not free.

It’s freedom theatre.

We do that in home and community-based services, too.

We comply with the principle of normalisation — disabled people’s patterns of life should be “as close as possible to the … regular circumstances and ways of life in their communities.”

You live in the same neighborhoods as other people, in the same kind of housing, furnished similarly, in similar household sizes. You get up at the same time as your neighbours, dress similarly, and spend your days doing similar things, with similar kinds of people.

Home and community-based settings are now often designed to simulate what are seen as key features of community living. Just like gorilla enclosures.

One reason many people want minimum wage requirements to be waived for some disabled people is that sheltered workshops provide daily respite services to families of adults with disabilities in a way that looks, superficially, like a regular way of life.

I once read a memo on creating home-like living environments for group home residents.

It contained detailed guidance on how to decorate the living room.

If you walk through a group home living room and the next door neighbor’s living room, they might look the same.

There’s a difference.

The neighbor decorated their own living room.

That may not matter to you as you tour where others live, but if a social worker gave someone else a budget for redecorating your living room and a memo on how to do it, you might have a thing or two to say.

Yes, when you had people getting their suppers at 5 and being sent to bed at 7, people living in dorms in cottages on institutional grounds, people left naked in huge filthy dayrooms and only offered clothes for family visits, slop poured rapidly down the throats of people who needed assistance to eat, normalisation was a step forward. The surface features of many disabled lives were so appalling that shifting to better surfaces was critically urgent.

But what was under the surface mattered too.

It’s also apparently better for gorillas to have zookeepers hide food in the enclosure so they will engage in foraging-like activity rather than have all the food dumped in a pile in the open.

Still doesn’t mean that gorillas in zoos are free.

Also? It’s not 1964 any more.

The National Council on Disability has defined “institution” as “a facility of four or more people who did not choose to live together.” Four seems arbitrary.

ADAPT and the National Council on Independent Living (NCIL) have been pushing to pass the Disability Integration Act (DIA), which, while it places some valuable limits on how they are run, explicitly permits something NCD regards as an institution, namely four-person group homes.

In any event, although large-scale congregation is a significant part of how people have been institutionalized, it is not the main problem with institutions.

Segregation, restriction, and loss of freedom are.

“I can make my bed or not.” – Peter Park

People First of Canada has defined “institution” this way: “any place in which people who have been labelled as having an intellectual disability are isolated, segregated, and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise control over their lives and their day to day decisions. An institution is not defined merely by its size.”

I’ve defined an institution as a place where the people providing the supports are in control.

Ivan Smith says it more simply and clearly institutionalisation is “administrative control over people’s lives.”

Peter Park, cofounder of People First of Canada , once said, “What was that day [when I moved into my own apartment] like? That was wonderful. I had a key to my front door. I — that was — I, uh — if there were — I don’t know — I just wanted to celebrate with everybody and their neighbor, that, ‘Okay, I’m free! I have my freedom! I can do what I want. I can get up, I can sleep in if I want to, get up when I want to, make my bed or not when I want to.’ Things like that, everyday things, that everybody does. So I felt marvelous, wonderful, fantastic!”

Note that the everyday thing is not making the bed or not making the bed. It’s choosing whether to make the bed.

If we focus on the duvet rather than the choice, we err.

It’s not created by the shape of a building

I worked in a program once that was big on “empowering people through choice,” and I began to document what that looked like.

“Alice was woken at 6:45. She was offered a choice between a red shirt and a green shirt and she chose red. She was offered a choice between cereal with milk and cereal without milk and she chose cereal with milk. Alice did not want to go to the day hab, but she was reminded that no staff are present during the day. Alice was offered a choice between putting on her jacket before the bus came or when the bus came and she chose to put it on when the bus came. She got into an argument with her roommate, whom she says she hates. She was given a choice of taking her lunch out of the refrigerator before the bus came or when the bus came and she chose before ….”

That’s the illusion of choice. It looks good, as long as you don’t look too close, or if you believe certain people are unsuited to freedom. But it’s not a life to aspire to.

I was singled out for my excellence in documenting my program’s commitment to empowerment through choice. But that’s not empowerment through choice.

In another program, where I did a relief shift, I was warned, ‘Don’t turn your back on Martha. But don’t worry, we’ve hidden all the knives.

Wait — what?!!

Martha was a pleasant middle-aged woman, and when I asked her, ‘Hey, I hear you’re upset. Do you want to talk about it?” she explained the issue.

Change of shift in her group home from evenings to nights was at 11:00 p.m., and bedtime was 10:45, to facilitate a smooth and uninterrupted handover. Martha wanted it changed to 11:00 so she could see the end of her TV shows. Management wasn’t budging.

We talked protest tactics for a bit, and she went back to whatever it was she had to do that day — and I was struck from that program’s relief worker list.

Roland Johnson used to ask, “Who’s in charge?”

You know who wasn’t in charge? Alice. Martha.

They had choices within the parameters the group home — or the family, or the state — thought were both reasonable and feasible. In other words, there was administrative control over their lives.

Who’s in charge, indeed?

Freedom is not about aesthetics.

Mel Baggs nailed it.

“The problem is not that we just haven’t found the magic formula for the perfect institution yet but these new ones will be wonderful. The problem is that in most of the service system we have barely moved away from what an institution is, at all.

“An institution is not created by the shape of the building. It’s created by who holds the power, and what kind of power they hold.”

Alice had 3 roommates and Martha had 2. NCD would have said Alice but not Martha was in an institution, and ADAPT and NCIL would have only said said they were because of whose names were on the deed or lease. People First of Canada, Ivan, Mel, and I would have said she was, but not for the reasons the other organisations think.

If the zookeepers make the decision that the zoo gorillas will engage in foraging-like behavior similar to what wild gorillas do, that doesn’t mean the zoo gorillas are wild rather than captive.

And if I make you do what your free neighbours do, that doesn’t make you free.

10 Things to Keep in Mind When Writing About Autism, Violence, and Services

ONE

Autistic people are less likely to commit intentional violence than neurotypical people.

Even so, the repetition of autism and violence in the same stories reinforces existing prejudices about autistics and makes people believe we are especially violent. These beliefs are reproduced throughout society, including among people you know. Many people believe autistics are simply an especially more dangerous group than others, and where we have been making progress at convincing others to look at the facts, certain parent and professional groups have successfully claimed that “severely autistic” people, at least, are dangerous.

TWO

Autistic people are more likely to be the targets of intentional violence than neurotypical people. This violence may come from classmates, family members, professionals and the police.

This includes a distressing rate of parents murdering autistic children. The rate is so high that the autistic community has established an annual National Day of Mourning for disabled people killed by family and carers. Rather than blame the aggressors, society tends to blame the targets and suggest that they need to be less autistic in order to avoid violence. When your existence in a family member’s life is regarded as “pre-punishment” for a crime not yet committed against you, the crime begins to seem almost reasonable.

Autistic activists and advocates are thus constantly aware both of the physical dangers inherent in living among neurotypicals and the fact that many neurotypicals regard violence against us as acceptable, if not desirable.

THREE

The level of service provision for autistic children and adults is inadequate. Many in the older generation of autistic activists and advocates grew up without services and many still struggle to exist without them.

We know all too well that a dearth of services is devastating, for us and often those around us. Moreover, autistics are routinely denied access to goods and services available to others, which places an additional burden both on us and on those who pick up the slack.

FOUR

However, the services that are available to autistic people and their families largely focus on control and trying to make autistic people seem less autistic. Or they involve inappropriate “behavioral health” interventions. They may be available only in segregated and/or disability-specific congregate settings.

These services are themselves devastating. The effort at masking autism they demand is partly responsible for the extremely high rates of suicidality and completed suicide in the autistic community, separate from the risk factors that affect both autistics and allistics. There are indications they promote high rates of post-traumatic stress disorders and other mental health issues.

FIVE

One of the consequences of distress in autistics and other people with cognitive and communication-related disabilities is violent or violent-appearing actions related to frustration, trauma, meltdown, and efforts to communicate, and actions intended to harm others (intentional violence) are rarely clearly distinguished from actions which convey distress which can potentially result in inadvertent harm, or even from incontrollable movements relating to dyspraxia, spasms, seizures, etc., which can result in unavoidable harm to others.

The distress caused by coercive services is thus one factor in autistic violence, as are failure to take seriously and learn from the reports of adult autistics with experience being inadvertently “violent” or engaging in violence before they understood the consequences of those acts, and what helped them to address those problems.

The response to this distress tends to be an increase in coercion, up to and including Level III aversives (the most notorious of which is the remote control shock device (still in use at the Judge Rotenberg Center as we await enforcement of a federal ban)), which would be judged as child abuse if parents implemented them themselves.

SIX

One of the consequences of the autism establishment’s relentless socialization on the importance of masking is that parents whose children do not mask effectively are encouraged to see this as a failure and a guarantee of future suffering. Only autistics who approximate typical behavior are seen as capable of having good lives, despite the experience of many adult autistics (but then also, few efforts are made to investigate what autistics who do not mask need to live good lives, and the services these people need are often not provided, too). This contributes to parental distress and a sense that they and their children are doomed, which is a factor in parental violence against autistics.

SEVEN

As part of the traditional services, autistics are encouraged to be docile and compliant and let perceived authority figures, including those they have just met, do what they want. This effectively grooms them for later predators and makes them easier targets of violence, including sexual violence.

EIGHT

When autism, violence and services are linked, there are two ways it is likely to go:

EIGHT-A

The lack of services is seen as a mitigating factor in violence against autistics. This overlooks a number of things.

For one, many of the high-profile cases under discussion involve families who have significantly more services than most, or who turned down services.

For another, many of the families who struggle most with access to services are loving and nurturing.

For a third, intentional violence is a choice. People who feel as if they may commit violence have options. Admittedly, few are very good options, but when the alternative is murder even lousy options like dropping your child at the ER become plausible.

For a fourth, it suggests that having an autistic child is especially burdensome, and the data do not bear that out. There is, for example, a common but false stereotype suggesting that the existence of an autistic child wrecks their parents’ marriages. In fact, autistic children’s families are demographically similar to allistic children’s families. All children involve joys and sorrows, and while the experiences of parents of autistics and neurotypicals are different, parents of autistics who resist the dominant narrative that the only path to happiness is successful mimicry of neurotypicality report similar quality of life to parents of neurotypicals.

EIGHT-B

There is a suggestion that autistics should be controlled better and earlier. This would, in fact, produce some decrease in any behavior that is to be controlled, but it comes at substantial cost down the road. And since mass murder is not caused by autism, it would not address that.

NINE

We know that murder apologism in the form of linking autistic filicide to lack of services increases the filicide rate. We know that moral panics about uncontrolled autistics leads to restrictions on self-determination, integration, civil rights and quality of life. When you promote conversations that link autism, violence and services without considering what you hope to achieve, how best to achieve it, what the risks are, and how best to mitigate them, or if you are unprepared to do the work to balance the benefits and costs of such a conversation, you risk causing harm where you intended to help.

Filicide and other violence against autistic people is one conversation. The services conversation is another. They are both important, but they are separate. Mixed, they can have deadly consequences.

TEN

Autistic people are people. We learn and grow. We love. We experience loneliness. We know joy and despair. We are curious about our world. We can be by turns eager, terrified, and grief-stricken. We don’t always act in ways that neurotypicals and other allistics understand. Our efforts to communicate and socialize are not always understood or welcomed. But we are people. And we are here in the same spaces as everyone else. We see and hear these conversations. We understand them. And they often cause us immense pain, because we see the accretion of prejudice, of fear and hatred, the looming consequences of a public being shaped toward increasing coercion and violence.

That alone is not a reason to not have the conversations. But it is a reason to do it thoughtfully and responsibly.

Do it Anyway

This was to a friend of mine who when I first wrote it, was reaching out to others, talking about how hard things were and getting the message that all that talking about it was “too much.”

Do it anyway.

People may tell you you are “just attention-seeking.” Hell, yes, you are attention-seeking! And thank you for doing it! Saying hi is attention-seeking. Wearing a nice shirt to work is attention-seeking. We humans are a social species. That’s what we do. We want attention because it is part of connection, and we need connection. It’s literally in our genes; it is part of how our species survives from one generation to the next. We don’t all want the same kinds of attention and some of us have learned that attention is unbearably painful, but in some way or others each of us wants to be with people we love, or at least with somebody, and that involves attention.

What people mean is, they don’t like how you are seeking attention and they want you to cut it out. So, okay, ask if there are ways to reach out for connection that will serve you and the people you love better and, if there are, try to learn them and use them to replace the ones you find most problematic. But putting someone down for seeking attention is putting them down for being a mammal and it’s not fair. And people who seek attention in desperate ways are expressing desperate needs, so even if it gets to that, keep going.

Do not let people shame you out of doing the best you can to find ways to connect with other human beings including “attention-seeking behaviour”: do it anyway.

Because, yeah, we’ve talked about travel, we’ve talked about beer, we’ve talked about services, I’ve seen your pride in your home and in the recognition you have earned. And we all know people who get joy from travel or knowledge or or power or hobbies or money or achievement. But whenever I have seen you really light up, the conversation has been about people, one way or another. And whenever I have seen you expressing deep pain over something specific, the conversation has been about people, too. I get that. That’s about how it works for me as well. So keep reaching out. Even when it’s people you love and respect telling you not to, do it anyway.

There will be people who tell you to reach out, but they don’t mean to them. They mean to a professional. They will give you hotline numbers, tell you about medication, suggest counseling. Those things help some people. If you want them, pursue them. But sometimes this kind of “helpful advice” means “stop reaching out to non-professionals. Whatever you do, don’t reach out to me. Your needs are too much.”

Paid relationships, while they have value (who, on a summer day, goes into a 7-11 for a Slurpee and doesn’t value their relationship with the clerk, who would not stand there ensuring they get their cold sweet wish satisfied as an unpaid hobby?), are no substitute for chosen, reciprocal relationships. There is nothing like people who are around you just because they want to be.

Nothing.

So seek professional help if that seems like a good idea, but when it comes to not seeking connection, don’t listen. Do it anyway.

Yeah, you are going to get some well-intentioned but hurtful responses along the lines of “Settle down, things really aren’t that bad.” Discourage them, but as kindly and gently as you can, because not only they but others are watching, and the lesson some of those watchers are getting is, “It’s better not to reach out because I may make things worse.” That is not a lesson you want to teach, however unintentionally; when people reach out it is attention-seeking and we want others to feel okay about reaching back. Do your best to hear that people are uncomfortable, that they don’t know how to respond, that at least some of them are really trying to help and that’s a good thing — and let them know you appreciate that much, if you do and if you can — although also recognise that sometimes others just want you to stop, and then do it anyway.

Some people are going to say things that are helpful. For me, from people not in a position to actually make things better, which most of the time is everybody, what helps is along the lines of “Yeah, that sucks, I wish things were different.” Flag what is helpful to you. That is a big part of how people learn to do scary things they are afraid to mess up: they see it done more skillfully than they know how to do, they learn that it is more skillful, and they dare to imitate it.

So scary stuff not only has to be done, but sometimes it has to be done in front of audiences. Some people desperately want to say something helpful but they are afraid of making things worse, so they let you dangle, which makes things worse. Showing them — as kindly and gently as you can — is part of building the community you need and others need and the next generation will need, so even though it is hard, do it anyway.

People will sometimes tell you about self-help and self-care. If you’ve asked, or if it’s someone close to you, this can be an act of kindness. Otherwise, it’s usually a way of reminding you that your problems are your problems to solve. And that is not untrue. Nobody else has to be there for you. But if you want to live in a world of connection, where people reach out and reach back, if you want to strengthen that part of the culture that says we are responsible to and for each other, for yourself, for the people you love, for the people coming up after you — and from what I know of you, I believe you do — this is part of how you move slowly and almost imperceptibly toward that. I know you know this; you are a patient and generous teacher. So do it anyway.

Because you are a teacher. You are an activist, an organizer, an advocate and a community-builder. I’ve watched you do all these things and do them beautifully. Reach out, make connections, and do in in public so those who don’t have your skills or your bravery or your experience can see how to do it, too. I know you get told a lot that other people are better at things than you, and it is true that everyone you meet will be better than you at something. But when it comes to the stuff that really excites me, you are amazing. No college degree or car, no dancing lessons or polished resume, would make you a better or more beautiful person, and part of your beauty is expressed in your willingness to reach out to others, to ask for and give help. Whatever anyone says to you, do it anyway.

There will be behaviourists — maybe, because you are disabled, highly trained professionals, but certainly those who have incorporated the behaviourists’ methods into their everyday relationships — who will figure out what you love and hold it hostage until you behave the way they want. They will tell themselves, and you, and anyone who will listen, that this is for your own good. I know you know better. It’s control. It’s abuse.

Anyone has the right to not go out of their way for you; nobody has the right to use that fact to control you. You never have to accept abuse. Never. People will tell you you should. People can be f***heads. That said, it can be hard to keep reaching out in the face of having been abused, but please, do it anyway.

There will be times when people convey that whatever you are having a hard time with really isn’t that upsetting. It wouldn’t upset them, they think (sometimes they are right, sometimes they are clueless, and sometimes they are lying). Or others have gone through, and seemed to handle, worse (so what? It’s not a contest. And they may not have been coping. They may just not have been reaching out).

But there is no objective scale for what upsets us. I’ve watched people absolutely thrive in situations I could never handle, I’ve coped with things that almost everyone thinks are intolerable and completely lost it in situations nobody else seems to mind, and I’ve watched people crumble in situations that gave me joy. It’s not anyone else’s place to judge the worthiness of your pain or tell you when it isn’t okay to reach out to others about it. Let them have their say — you can’t stop them — but ignore them and do it anyway.

When there are people who could help, a lot of them won’t. Some that you think could help really can’t, in ways that may not be obvious. If you love someone, try to understand who they really are, what they really can and can’t do, the ways that what they can’t do are inextricably linked to the best things about them, and try not to get angry that they aren’t who they aren’t, because that’s not love. But some people are making choices. They have a right to do that, as much as it hurts.

Not asking for help is a failing of mine. As long as I don’t ask for what I need, I can pretend that if I did ask, I would get it. And there are days that I need that fantasy. But I also need what I am not asking for, and if nobody knows, I definitely can’t have it. So take a deep breath, risk the fantasy, and do it anyway.

You’re going to hurt people and they’re going to hurt you back. There is really no way to be around other people without it being a bruising experience for everyone some of the time. That’s in the nature of fallible humanity. Hurting someone by accident or in some other ways is not the same as being an abuser. Being hurt is not the same as being abused. (But you also don’t owe it to anyone to stick around for pain you don’t want, even if it is not caused by abuse. They don’t have to deserve to be left for you to deserve to be able to leave.)

Listen to this stuff and ask yourself if it’s true. It is certainly possible to cross the line and hurt someone, and I know you don’t want to do that. And anyone else has the right to say, “I don’t want to be around you” over anything at all. But that doesn’t mean that who you are is not okay. So respect what other people want and need in their own lives. Ask for what you need, but don’t demand from someone what they won’t freely give. Social media is amazing for this because it relieves people from individual responsibility; you can say what you have to say and other people can choose to take a break from hearing it. But no matter how much people are telling you that good manners or health or the rules of a civilised society require you to stop trying to connect with other people, do it anyway.

Also, some people really don’t want to hear this stuff. Some people need not to. Be thoughtful about that. When you learn that about someone, don’t make them hear it. But don’t let other people’s general discomfort stop you, either. Some people will try to police you: they’ll tell you you are inappropriate or even toxic, that you have to stop so they can have healthy boundaries, that you are a bully.

People are going to tell you to be more grateful and remind you of the good things in life. As hard as it is to be told to be grateful when you are in pain, there’s a kernel of truth to it. Good things happen, and noticing and acknowledging them does help. The ability to be in the presence of people who matter to me, to joke around with them, to be a part of something meaningful, to do work I value — these are real gifts and I treasure them. Express your gratitude as best you can, because the people who give you these gifts should get reached back to. But don’t try to force gratitude. Pain counts, too, and if it is not visible people cannot connect with you in those moments. So when you want or need to express your pain, even though people will point out that pain is not (or in their opinion should not be) all there is, do it anyway.

There are going to be days when you want to walk away from it all and take a break from other people. And that is okay, if you are doing it for you. There are going to be days when you want to give the people you love a break from the discomfort of being around you. And that is okay, too, as long as it’s temporary and really based in an assessment of their needs. It’s the overall shape of things that counts. If you stop reaching out altogether, other people stop reaching back. If you stop being honest, you lose that ability to connect. And that kind of cut-all-ties withdrawal that seems in the moment to make sense does not work long-term. So know yourself. Sometimes when you don’t want to reach out, let yourself off the hook. Sometimes, do it anyway.

It is only by showing up and reaching out, by opening yourself up to the possibility of real pain, that you lay the groundwork for connection-based joy. And you never know when those moments are going to come. You may be freezing your ass off in some park somewhere when someone you deeply respect takes one of your suggestions seriously. You may be in someone’s office when they ask you to do something that is easy for you and hard for them. Someone may tell you they trust you to do a job that you know is important. You may be in an ER QR someone stuck you in because you couldn’t cope in the last place they had you, even with your eyes shut, trying to control the rising panic and not bolt because you know you need not to, when the person with you (note that oppportunity for gratitude) sucks you into a ridiculous discussion about someone’s duct-taped, disintegrating wheelchair tyre and you find yourself laughing. You may be in a parking lot with friends listening to someone’s hilarious story of trying to figure out the worst pack of boxer shorts he ever encountered. You may be in a place where you are supposed to have your game face on, trying like hell not to laugh at a private joke with the person next to you. You may be in a hotel lobby learning you don’t have a room when someone you admire shows up, supports you, and goes with you for a burger, a beer, and an epic conversation. If you reach out, you get hurt a lot. But if you don’t reach out, you don’t get those joys, so do it anyway.

Some people are going to get overwhelmed by you and walk away, and that’s going to hurt so much. It hurts to be given up on. Especially when it is someone you really, really love. And I know enough about how people with your disability get treated to bet you have experience with that pain. When you have something that really matters to you, there is incredible risk. You can lose it. It can be weaponised against you. For some of us, that is a never-ending experience. The only relationships of mine that ever last involve a whole lot of distance and non-contact; people like me sometimes, but nobody likes me for very long, and that is almost unbearable knowkedge to live with. You learn to hide and hoard what matters to you. I’ve certainly learned to act as if I barely notice the people I want to know, and not to trust signs that they may want to know me, too. You can do that with a lot of things. But love doesn’t work like that. There’s no way to do it right, to give or receive it, without risk. Without unbelievable risk. You have to force yourself to take the risk. There is no way not to get hurt.

Love is a contact sport, played without protective gear. So as terrifying as it is to try over and over to connect with those whom, right now, today, you love and who love you back, and those whom you might love or be loved by, do it anyway.

And there are going to be times when you fuck it all up and you just want to hide. It is hard to be human. Do it anyway.

Here’s the thing. At any given moment there are reasons not to reach out. And sometimes those reasons will be enough and that is okay. I’m not going to tell you when or or how often to whom or how to keep reaching out. Those are personal decisions and different people should make different ones. I’m just saying, there are always reasons not to, and other people will remind you of them, because you reaching out is uncomfortable for most people. They may want to fix it but be unable to. They may want to help but not know how. They may not want to know what you are going through — and some legitimately need to not know about it. They may feel pressured to do something they don’t want to do. It may offend their sense of propriety. They may be subtle; they may be direct. You are going to get hurt worse. DO IT ANYWAY. As much as you need to, and sometimes just because you can.

Because the cost of not doing it is higher.

I know you know this. I know what a soul-destroying price I paid for extended and total denial of human connection, and I know the one you paid was steeper and younger. But I also know you are hearing from people who are well-meaning but haven’t thought through what they are asking of you, and I wanted you to to hear from someone who has.

Your best move in the moment is not always your best move. Because it is never just the one moment. Moments lead to other moments lead to still other moments. They mean something. A life emerges. It means something. It means a lot.

I am sorry things are so hard right now. You deserve better. I wish I knew a way to help, but I don’t. I hope the unsolicited advice hasn’t made things worse. I wish you were happier, but I am glad you are telling us how things are. I hope they get better soon, but until they do, thank you for reaching out and telling us.

And thank you for being you.

The First Tendrils of Communication

For Mel Baggs and Phil Smith, who knew, and know, communion with the wild places better than I can imagine.

Do you remember how you learned to communicate? If you communicate pretty typically, odds are it wasn’t perfect, but it included something like: you reached out socially, and people reached back.

You looked at them; they gazed adoringly back at you.

You smiled; they smiled back and waved. “Hi, Baby! Hi! Oh, what a beautiful face!”

You laughed; they reveled in your chortles and giggles and were silly in the hope that you would laugh again.

You cried; they held you and comforted you and tried to figure out what was making you miserable.

You called out at night; they pulled themselves out of exhausted slumber, scooped you up, and blearily cuddled and fed you.

You made a sound or a gesture, an approximation of standard meaning — or they convinced themselves of that, anyway — they pounced on that and talked back to you. “That’s right! Ma-ma! You know who your mama is! Can you say it again?”

They celebrated your efforts to engage, amplified them, reflected them, and worked to understand them.

The first tendrils of what would eventually grow to be a robust, redundant, and resilient communication system peeked out of you, questing for the sun of human connection and they, who reveled in what developed, with consummate faith in the richness of the soil those tendrils came from, watered and fertilized them; and between you, the communication system bloomed and blossomed into a strong and supple living thing.

You were human: the development of an adaptive and functional communication system was a drive. Once you knew how to communicate with people close by, those who knew you best, you gradually became better and better at communicating with others.

Through communication, you developed — to a greater or lesser degree — the ability to connect with others. And because you were human that, too, was a drive. It probably has been thwarted to at least some extent, just as there are people among whom you feel unheard, or who make you feel unable to understand. But also, you know you can.

Or maybe it wasn’t so easy or so joyous. Maybe the soil was too thin, or the rain too sparse, or the sunlight too filtered. Maybe those who should have nurtured you did not, for reasons within or beyond their control. Maybe the communication system grew slowly. Maybe it bore the signs of hard growth. But again, if you communicate pretty typically, then probably, between whatever you did have and human instinct, those hardy tendrils, doggedly found a way. Communication, connection, after all, is a human drive, and you were, you are, human.

And sure, there are times when you feel lonely, and times when you struggle to express what you want to say, when the living thing between you and others seems battered and bedraggled, beset by drought, but the fundamental ability to engage in human give-and-take is there, waiting, like a cactus, for the rare and precious rain.

But now imagine if your reaching-out is misunderstood or unnoticed, if it is ignored or even discouraged. Imagine if, instead of being showered, or at least drizzled, with nutrients, it is sprayed with pesticide, or even torn out at the roots. Imagine if someone else, like a landscaper who has been educated by those who cultivate formal gardens, decides how you should communucate, and then enforces that decision, stamping out whatever errant shoots creep out of you, and which she sees as weeds. Imagine if your communication system, instead of growing in fertile ground, is constructed in a lab and forcibly buried in you in place of what was already growing but fervently opposed. Imagine if your efforts to communicate and connect — because it is all one thing — elicit not excited reciprocity but measurement, evaluation, strict weeding, and control.

I’m not saying text-based AAC is better than grid-based. I’m not saying any kind of chunk of a communication system is better than any other kind of chunk. I’m not saying to push for that instead of this. I’m saying that a communication system must be one that takes root in the ground where it will live, and that allows for the fullest expression possible of what the ground already contains.

As much as I completely understand the terror a parent feels when they look into the future and cannot imagine what communication is going to look like, as much as I completely understand the hope that a professional seems to offer, who has with a system for forcing the approximation of that which the parent has come to expect natural growth to look like, it’s the wrong choice.

A fear-and-control-based approach to human connection is wrong. You can’t make connection that way. It has to be organic. And yes, there is a time to prune, a time to tell your child not to comment on other people’s bodies, a time to coach your teen in the art of the handshake rather than the hug, a time to mark the trails that those who are welcomed in will follow, but the more tender the shoots of the communication system, the riskier that pruning is.

I am saying when you plan in advance how someone else will communicate, you plan what they will communicate, and then it ceases to be communication. When you enforce a particular way of communication and relentlessly prune anything that does not meet your standards, then what should have become, perhaps, a powerful redwood is trained into a bonsai instead; and a bonsai, however artistically presented, cannot do the work of a tree that has grown as its own nature commanded it. What should have been, perhaps, sorrel, harassed by the controlling landscaper because it is not the violets she wishes it to be, will have leaves so damaged that they cannot absorb the sunshine of connection. And when the landscaper beams at the parents and proclaims, “Nothing worthwhile would have grown here without my efforts, so celebrate this withered stem I have coaxed from earth that was once overrun by weeds!” it is cause for grief, not gratitude.

You may have wanted tulips, and by all means, bury a bulb or two and see what comes up in the Spring, but if the absence of tulips is all that you can think about, you may miss the sweetness of honeysuckle.

I Will Celebrate ADA30

The ADA represents a shining promise: that never again will someone’s disability be used as an excuse to deny them full participation in their communities. As such, it is a piece of the bigger promise: of a society in which who we are is never weaponised against us.

But the ADA represents a hollow promise. It was never meant for all of us. It was always intended to protect some disabled more than others, and still other disabled not at all. And the independent living movement, which plays an enormous role in cross-disability agenda setting, has focused on the kind of “one and done” accessibility that is coded into the ADA Accessibility Guidelines (ADAAG) (and even then only some people’s “one and done” needs are addressed) rather than the ongoing work of negotiating the fluctuating and complex access needs of individuals, groups, and communities.

The question, then, for those of us disenfranchised within the disability community in one or more ways, as we approach ADA30, is what to do about the discrepancy between that shining promise and the tawdry refusal to take it seriously on the part of much of our leadership.

Do we continue to call on them, after decades of betrayal, to finally live up to their stated values? Or do we accept that decades of treating some community members as people who do not deserve full participation in our society is an expression of their real values, and refuse to cooperate further with them?

I do not ordinarily participate in the ADA commemorative events. I am trans, queer, and autistic. I have a low IQ score. I come from a family with an intergenerational history of substance abuse. I have been nonspeaking much of my adult life, and am partially speaking now. I am a SIBber and a psych survivor. I am under no impression that the ADA was meant for me, and if I ever had been, I have sat through enough lectures from framers to have been disabused of that heady notion. When I fought alongside the white crips who were horrified that passage of HR 620 in the last Congress might mean that they had to wait a few months for access, they did not turn around and agree that I should not have to wait for decades. I did not expect them to. They took their victory and continued to see me and my subcommunity and other subcommunities as undeserving of what is nonnegotiable for them. It was still the right thing for me to do, to fight the attack on what we have built; the right thing for them to do would have been to finally agree that what is nonnegotiable for them cannot be unimaginable for us.

I can acknowledge the effort the Eds and Judys and Justins and Evans put in; I can acknowledge their substantial achievements; I can admire and even love them as people. But I cannot ignore the relative privilege that permitted them the opportunities they used so well, and I cannot overlook that a movement they had so much influence over excluded so many from making any contribution, erased so many who did make a contribution, and continues to do so.

I believe in the promise of the ADA. I believe in the promise of justice for all marginalized groups. I believe we can get there. But I also believe it will take not just hard work and commitment, but revolutionary change within our movement (I will not presume to suggest I know what other movements need to do). So I will not mark ADA30 by celebrating the glorious history of white wheelchair users. We celebrate that glorious history every day, and too few of us peek behind the curtain.

I will, instead, celebrate the movement that Brad Lomax tried to build, the one that Bernard Carabello devoted his career to, the one Lois Curtis should have inspired, the one that incorporated Roland Johnson’s insights, the one that took seriously Mel Baggs’ ethical efforts. I will celebrate a movement in which I am neither more nor less human than the next person on the line, in which residents of no one institutional system take priority while residents of others languish, abandoned to their fates, and that therefore has the moral force to demand that the larger society remake itself in a similar way. I will celebrate ADA30 by celebrating the shining promise of a just future, and the dream of a movement that can deliver that promise to us — and then I will return to the tawdry reality and continue to try to build toward the dream by creating the movement that the Brads and Bernards and Loises and Rolands and Mels of today are working toward. And I will hope that the excellence of these activists and advocates will overcome the mediocrity of the movement they are inheriting. I have met some of these activists and advocates. There is reason to hope.

I hope that, however you choose to celebrate ADA30, it is a good celebration and that it nourishes you as you recommit to the long struggle toward a just world.

Why We Need to Get People Out of Congregate Care

There is a highly successful program called Money Follows the Person, which helps transition people from large institutions to home and community-based settings. The multiyear authorization expired and Congress is only trickling money into it to barely keep it going but the data show the value of getting people out of big facilities and back into small community-based facilities (which are still congregate and not enough) or their own homes.

Living in a congregate (grouped) setting is a rough life at the best of times, even with skilled, caring staff doing their best, because the realities of mass-produced care force restrictions on personal liberties, self-determination, community integratiom, and so on. And at worst, we get truly horrific outcomes, rife with abuse and neglect.

Lois Curtis, for instance, who went to the Supreme Court for us as the lead plaintiff in the Olmstead case 21 years ago, has talked about what winning her case and getting out has meant to her.

The memoir of disability rights leader Roland Johnson, who grew up in the infamous Pennhurst, is also powerful.

There’s a film about some Canadians’ efforts to free themselves from congregate settings, called Hope Is Not a Plan, that I strongly recommend.

I have done time long-term in the psych system and short-term in the nursing facility system, and I’ve worked in the DD system. I’ve got experience with poorly- and well-funded programs, with programs that had nakedly abusive staff and ones with great staff. Some parts of these systems are absolutely better than others, and none of it is good.

And it gets worse. In late 2018, 11 children died in an adenovirus outbreak at a nursing home in Wanaque, NJ because of the kind of lousy infection controls that we see over and over in these facilities.

And then came COVID-19 . And the carnage has been staggering.

It has been overwhelming in nursing facilities.

It has been overwhelming in psych facilities.

It has been overwhelming in the developmental disability system.

It has struck our elders, our disabled adults, and our children with disabilities.

Nor has it struck evenhandedly. The preexisting effects of structural racism means that people in nursing homes with primarily Black and Latinx residents are substantially more at risk than those in nursing homes with primarily white residents.

This isn’t just about disability-specific congregate settings, either. We’re seeing that prisons, jails, detention facilities, and college dorms can be impossible places to be safe in a pandemic, too.

So how do disabled people end up in congregate settings? If they need long-term services and supports (LTSS), there is something called “the institutional bias,” a set of structures that mean a lot more people end up in large facilities than would if it were truly up to them. In particular, state Medicaid programs have to pay for institutional care for recipients with a certain level of support, but don’t have to offer those same supports in the community. So some people get home and community-based services (HCBS) through a waiver. Most don’t.

And we have been fighting this one a long, long time, folks. Katie Beckett came home in 1981 at the age of 3 after President Reagan created a waiver for her; and because she had that waiver, she had a good life.

For short-termers, there is a hospital to rehab (often the same facilities LTSS residents are in) track. I have been hospitalized recently, and I was strongly pressured to enter one. After this story came out tying 44% of Illinois COVID-19 deaths to nursing facilities (I am in Illinois), I was confronted by administrators from Northwestern Memorial Hospital accusing me of being “hurtful” to suggest it wasn’t “perfectly safe” for me to enter one. A Rush Medical Center employee insisted the data isn’t in yet on whether the facilities pose risks. People don’t even have the information, much less the material resources, to protect themselves.

And I overheard patients — mostly older Black patients whose families were on the phone every single day talked into shoddy facilities with active infections. In one case the facility had recently been in the news for running out of disinfectant. I have no doubt the front-line staff were desperately trying to protect everyone. But the impact of the realities we are addressing overpowers those good intentions.

You know what happens to some of the folks who get placed in these facilities because “there’s no-one to stay with you at home”? What happened to Senator Elizabeth Warren’s brother. (Spoiler alert: he’s dead.)

How many lives could we save, how many lives could we improve, how many opportunities could we offer, how many communities could we strengthen, if we did what we know we can do — and can do not just for some of disabled people, but for every single one (nobody is “too disabled” to live successfully in the community so long as they have adequate supports)? A lot. I don’t have an exact number, but a damned lot.

We could raise kids like the ones at Wanaque, and like Roland Johnson, at home. We could give them lives so much closer to what Katie Beckett had. We could give the Lois Curtises the kind of life that let her become a successful artist. We could let elders age with people they know and trust love. We could protect people after health crises and let them die at home.

And we can do this. We can do this. We can establish a right to home and community-based services for everyone who has an entitlement to institutional care. We can build the accessible, affordable, integrated housing. We can train and pay personal care attendants and direct support professionals well, both people who do it professionally and people who do it for family members. We can abolish guardianship and agency control in favor of options like supported decision-making and microboards. We can fund the kind of community mental health services that people want and need. We can learn more about promoting self-determination, and put what we learn into practice. We can improve protections for people at risk of going in, and permanently reauthorize Money Follows the Person to help those who are already in and want to get out. For families who want to stay together, we can support that, and we can offer adequate help for those who want to strike out on their own. We can do it all, if only we solidify the national will to do it.

We can say “No more Wanaques” and not plunge ourselves into a situation thousands of times worse within a year and a half. We can say “Every child deserves to grow up in a family” and mean it this time. We can keep our elders, surrounded by support, in the communities that matter to them. We can change everything for disabled people who have signigicant support needs. We can finally learn the lessons of Willowbrook and Pennhurst — that these facilities have a life cycle and no matter what your intentions they are still congregate institutional settings with all that entails — and we can move on to something better.

We can’t undo the ravages of COVID-19 that we have already permitted to be visited on those in congregate care, but we can do better for the survivors and for those coming after them.

And we must. We must. Because these are our people.

p.s. If you want to contact your Senators and Representatives in Washington, D.C., and let them know how important this is to you, here is a good place to start. Scroll down.