Here is a tweet from @Open_Future. It says “There’s no such thing as a bad support staff person. There are broken systems and services.”

Your knee-jerk reaction is almost certainly “Well, that’s not true!” You can think of bad DSP’s. (I know I can.) Or at least you can ask yourself whether anything is stopping horrible people from getting those jobs. (Answer: no.) But please, DON’T LET YOURSELF GO THERE. There is a lot to learn from what you have just read but you have to engage with it.

This is an unnuanced statement, sure. It is a tweet. Granting that, let’s engage with the reframing that @Open_Future is giving here.

Here is a short video about what the discipline of social psychology is. The fundamental insight of social psychology is that much of our behavior is determined by our social contexts. That’s why structural ablism needs to be studied and addresssed: the bad thing is in the very joists and beams of our society and it affects is all.

Here is a short video about the Milgram Experiment, a famous experiment which predates the Judge Rotenberg Center but also explains a lot about how it works (and why there are cameras everywhere – hint: it is not to prevent abuse but to ensure that it happens). The Milgram Experiment tells us a lot about why perfectly ordinary people will do horrible things when told to.

(I’m not using Zimbardo’s Stanford Prison Experiment here although I know that is the next move you can expect. I think there are unresolved problems with it.)

Now, start thinking about some of the serious thinkers on the subject of adequate support for people with disabilities. I have been fortunate enough to know some and to study others. I have listened to people like Roland Johnson and Julia Bascom, Deej Savarese and Finn Gardner, James Meadours and Mel Baggs.  And I have struggled with this myself.

Almost every innovation we can come up with to increase self-determination can get turned back and used as an instrument of control. What is the answer to that? “Bad staff”? Or is the answer that there is something in the system we are not contending with? I would argue that the latter is a far more powerful force.

Back in 1975, in Fundamental Principles of Disability, Paul Hunt read this into the record, from a statement prepared by the Union of the Physically Impaired Against Segregation (UPIAS):

... Disabled people are therefore an oppressed group in society. It follows from this analysis that having low incomes, for example, is only one aspect of our oppression. It is a consequence of our isolation and segregation, in every area of life, such as education, work, mobility, housing, etc. Poverty is one symptom of our oppression, but it is not the cause. For us as disabled people it is absolutely vital that we get this question of the cause of disability quite straight, because on the answer depends the crucial matter of where we direct our main energies in the struggle for change. We shall clearly get nowhere if our efforts are chiefly directed not at the cause of our oppression, but instead at one of the symptoms.

To the extent that the problem is systemic, it matters. So long as we are trying to root out “bad apples” when the real problem is the barrel, we will never she the problem. We must attack the roots of the problem, not the branches. I’m sure there are plenty more metaphoric clichés I could find, but they are clichés for a reason.

So let me start with a quick question: cui bono? That’s a Latin question; it means “Who benefits?” And the reason people like many of us know it in Latin, when we know very little Latin to start with, is that it is such an important question that people trained in the Western educational system are still quoting people who asked it thousands of years ago, in Latin.

Who benefits from everybody thinking the problem is bad staff people?

Well, for one, everybody who benefits from us not overhauling the system to make it work better. That is, all the people who design programs that don’t actually work and can say “I gave them a great program, but there are bad staff people, so what can you do?” Also all the people who have high level positions. All the higher-ups at Bellwether and Devereux and so on. And all the people in the independent living movement who want to say “We have a great model for people at risk of institutionalization and we don’t need to change it, because it is not our fault at all that it isn’t working for the majority of those people.” People benefit when they want to be the ones in control without having to take responsibility for it. The group home managers, the family members, the school districts, the staff unions (AFSCME/SEIU). A lot of people benefit.

And if the issue is that the problem is systemic, then we also need to ask, who pays? Who is harmed? The people caught up in the service systems, or at risk of being caught up. People in developmental centers, people in ICF’s, group homes/CILA homes, people in special education, people on HCBS waiting lists, consumers with I/DD at CILs, people in sheltered workshops, and so on. People beset by what Lucy Gwin called “PLODs” — persons living off disability.

Let’s look at applied behavior analysis, as a concrete example. The people who do it insist that every critique of ABA we make is really an anecdotal report of abuse by one of the few bad ABA practitioners, in the bad old days, but the field has moved on mostly, and besides, every field has a few bad actors. They feel for survivors, really they do, but they don’t have to listen to them. Cui bono? ABA practitioners. Who is harmed? Their victims.

What if our answer to that is, “There’s no such thing as a bad BCBA/RBT. There are broken systems and services”?

Does that change how we approach things? Yes. It means we are not trying to reform ABA so as to maximise best practices, as I keep getting urged to do. It means we are trying to end it.

ABA is a form of non-congregate institutionalisation. And institutionalisation is an inherently harmful system. There are “good workers” in institutional settings, people who try to mitigate the brutality of them. And the work they are trying to do is not unimportant. I am grateful they exist. But at the same time you cannot function as a good person in the context of a structurally harmful setting so it is not enough to be a “good worker.”  We could have 100% good people trying to do their best within the system and we would still produce horrible results.

A discussion of the core features of institutionalisation and why congregation is not one of them is beyond this rant. We can talk about this later. Let’s talk about congregation/segregation institutionalization on the continuum from group homes to developmental centers.

I get asked a lot, incredulously, whether I really mean that people with disabilities should not be in institutional settings. This is not a real question. It’s rhetorical. Of course people with disabilities belong in institutional settings! They can’t be self-determining! Have you met them? (Yes, I have. I am one, and I have supported others. I am one of those people who tried to be a good worker in an evil system. And I am proud of a lot of what I did, and still it was not and never could have been enough.)

You are probably thinking that is old news. Everybody gets asked that. What’s not old news, though, is who is asking. I don’t talk much to people outside the movement. They don’t interest me. I get asked this by ADAPTers, by independent living specialists at CILs, by NCIL employees, by movement bigshots. Of course, they don’t mean disabled people like them. They mean disabled people like — well, not me, but I mean, you know. Here is an old, old attempt I made to grapple with this problem. Nothing has changed.

I’m not going to name people in public, but I will say that I get a lot of “Who said what?” when i name them in private conversation. And then they get blamed by the people who benefit most from the systems within which they operate. I have been told that a black woman who is well-known in the disability justice movement and who has formidable strengths “probably has an intellectual disability” and that is why she says and does certain things. (First, there is no reason to suspect she does, and second, even if she does, that wouldn’t explain what she said.) I have been told that a man who had at the time been employed by his CIL for almost 3 decades and has acquired quite a track record “hasn’t been here long enough for us to train him” and that’s why he says and does certain things. I get a lot of low- and mid-level staff identified as “the problem.” On the rare occasions that members of the upper echelons are identified as the problem, it is always people who are kind of not respected and have no real power anyway.

Are these bad people? I don’t think so. Are they untrained and unskilled, and do disabilities nobody suspects they have except when they do things people want to disavow prevent them from becoming trained and skilled? I don’t think so. Are they participating in and shaped by deeply flawed systems? I think that is it. But the response to raising these concerns is never to address the system.

When we take a systemic problem and treat it as a collection of individual problems, we move the problem out of reach and ensure that it cannot be fixed.

@Open_Future’s statement is probably not literally 100% true. But the vast majority of people working in the field could be supported to promote the kind of self-deternination that everybody with significant support needs deserves and most are not getting. And we who participate in activism and advocacy, and those who participate in service provision (which damn well includes CILs), need to stop being complacent about this and saying “We are doing our jobs, but the support workers suck” and start looking to the root causes of why they are doing such bad jobs in so many cases and how we can fix the system — exactly as Paul Hunt and the other members of UPIAS told us to, nearly 45 years ago.

Okay, rant over. For now.