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.

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.

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.