A Credo for Support: Respecting Autonomy in a Society of Interdependence and Care

Do Not try to modify my behaviour.

Be still & listen. What you define as inappropriate

may be my attempt to communicate with you in the only way I can.

Do Not see me as your client. I am your fellow citizen.

See me as your neighbour. Remember, none of us can be self-sufficient.

Do Not try to control me. I have a right to my power as a person. What you call non-compliance or manipulation may actually be the only way I can exert some control over my life.

Do Not work on me. Work with me.

Source: A Credo for Support

Via: Autism and Behaviorism – Alfie Kohn

This credo is a beautiful recipe for respecting autonomy in a framework of interdependence and care. I’m going to share it with the educators and caregivers that work with our family.

The late Herb Lovett used to say that there are only two problems with “special education” in America: It’s not special and it sure as hell isn’t education. The field continues to be marinated in behaviorist assumptions and practices despite the fact that numerous resources for teachers, therapists, and parents offer alternatives to behavior control. These alternatives are based on a commitment to care and to understand. By “care,” I mean that our relationship with the child is what matters most. He or she is not a passive object to be manipulated but a subject, a center of experience, a person with agency, with needs and rights. And by “understand,” I mean that we have an obligation to look beneath the behavior, in part by imaginatively trying to adopt that person’s point of view, attempting to understand the whys rather than just tabulating the frequency of the whats. As Norm Kunc and Emma Van der Klift urged us in their Credo for Support: “Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can….[or] the only way I can exert some control over my life….Do not work on me. Work with me.”

Source: Autism and Behaviorism – Alfie Kohn

Previously,

Behaviorism: Measuring the Surface, Badly

Behaviorism only looks at observable behavior which can be measured. It doesn’t take into account thoughts, genetics, anxiety, trauma, health, or emotions because those things cannot be measured.

Source: Not an Autism Mom’s Thoughts on ABA: Part One » NeuroClastic

Ultimately behaviorism provides a simplistic lens that can’t see beyond itself.

Why is the doctrine of behaviorism still being used, at all?

How can ABA be the gold-standard for autism when it ignores everything we know about autism?

Source: Behaviorism is Dead. How Do We Tell The (Autism) Parents? » NeuroClastic

Assuming for the sake of argument that ABA is effective at changing people’s behavior, it either does so via changing their underlying thought structures or values (“deep change”), or it does not (“superficial change”). If ABA is “successful” by way of deep change, then ABA violates autonomy insofar as it coercively closes off certain paths of identity formation. If ABA is “successful” by way of superficial change, then ABA violates autonomy by coercively modifying children’s patterns of behavior to be misaligned with their preferences, passions, and pursuits. Such superficial change is a pervasive form of interference that compromises children’s present and future autonomy.

Source: Project MUSE – Ethical Concerns with Applied Behavior Analysis for Autism Spectrum “Disorder”

Plenty of policies and programs limit our ability to do right by children. But perhaps the most restrictive virtual straitjacket that educators face is behaviorism – a psychological theory that would have us focus exclusively on what can be seen and measured, that ignores or dismisses inner experience and reduces wholes to parts. It also suggests that everything people do can be explained as a quest for reinforcement – and, by implication, that we can control others by rewarding them selectively.

Allow me, then, to propose this rule of thumb: The value of any book, article, or presentation intended for teachers (or parents) is inversely related to the number of times the word “behavior” appears in it. The more our attention is fixed on the surface, the more we slight students’ underlying motives, values, and needs.

It’s been decades since academic psychology took seriously the orthodox behaviorism of John B. Watson and B.F. Skinner, which by now has shrunk to a cult-like clan of “behavior analysts.” But, alas, its reductionist influence lives on – in classroom (and schoolwide) management programs like PBIS and Class Dojo, in scripted curricula and the reduction of children’s learning to “data,” in grades and rubrics, in “competency”- and “proficiency”-based approaches to instruction, in standardized assessments, in reading incentives and merit pay for teachers.

But the enduring lesson for educators isn’t just that “positive reinforcement” turns out to be anything but positive. It also concerns the conceptual dead-end of behaviorism more generally. Every day, and with every child, we need to keep in mind that behaviors are just the protruding tip of the proverbial iceberg. What matters more than “What?” or “How much?” is “How come?”

Source: It’s Not About Behavior – Alfie Kohn

The underpinnings of that ideology include: a focus only on observable behaviors that can be quantified, a reduction of wholes to parts, the assumption that everything people do can be explained as a quest for reinforcement, and the creation of methods for selectively reinforcing whichever behaviors are preferred by the person with the power. Behaviorists ignore, or actively dismiss, subjective experience – the perceptions, needs, values, and complex motives of the human beings who engage in behaviors.

The late Herb Lovett used to say that there are only two problems with “special education” in America: It’s not special and it sure as hell isn’t education. The field continues to be marinated in behaviorist assumptions and practices despite the fact that numerous resources for teachers, therapists, and parents offer alternatives to behavior control. These alternatives are based on a commitment to care and to understand. By “care,” I mean that our relationship with the child is what matters most. He or she is not a passive object to be manipulated but a subject, a center of experience, a person with agency, with needs and rights. And by “understand,” I mean that we have an obligation to look beneath the behavior, in part by imaginatively trying to adopt that person’s point of view, attempting to understand the whys rather than just tabulating the frequency of the whats. As Norm Kunc and Emma Van der Klift urged us in their Credo for Support: “Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can….[or] the only way I can exert some control over my life….Do not work on me. Work with me.”

It is nothing short of stunning to learn just how widely and intensely ABA is loathed by autistic adults who are able to describe their experience with it.

Source: Autism and Behaviorism – Alfie Kohn

PBIS.org focuses only on surface behavior, what one can observe. Whether this is due to lack of understanding of the complexity or an intentional omission is unknown. The focus on surface behavior, without seeming to understand or be concerned about the complexity, or even the simple dichotomy of volitional versus autonomic (stress response) and the use of outdated, compliance based, animal based behaviorism (which has no record of long term benefits) continues to fail our country’s students.

The documents on PBIS.org imply that all behavior is willful. There is no acknowledgement in the PBIS.org literature that behaviors can be stress responses (fight-flight-freeze responses). This is a profound omission that does great harm to children whose brains and bodies have highly sensitive neuroceptionof danger. To be punished for a stress response is harmful and traumatic.

The second concern about teaching replacement behaviors goes back to the lack of distinction between willful behaviors and stress behaviors. Teaching replacement behaviors is not possible for stress responses since they are automatic responses that occur beneath the level of conscious thought.

Source: The problem with behaviorism – Alliance Against Seclusion and Restraint

Behaviorism and ABA are superficial, misguided, and abusive. That the folks most able to feel the wrongness of behaviorism are the ones most subjected to it is immensely cruel.

If we were not threatening to the social order in some way, there would not be therapies designed to control how we move our bodies and communicate.

Source: THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

Previously,

“Care is an organizational structure needed to keep our nation running.” “Care work makes all other work possible.”

Care is an organizational structure needed to keep our nation running. It’s, by definition, infrastructure.

Source: Molly Doris-Pierce on Twitter

Putting care—not just care work, but care—at the center of our economy, our politics, is to orient ourselves around our interdependence.

Source: The Year That Broke Care Work | The New Republic

care work makes all other work possible

Source: Care for All Agenda

I added those quotes to my Just Sayin’ collection in a new section on care.

I love how the Biden administration is centering care and pushing for HCBS (Home and Community Based Services) funding, especially after an administration that centered cruelty and left the HCBS system on the brink of collapse.

President Trump and Sen. McConnell’s relief bills contained no funding for HCBS, leaving the system on the brink of collapse. The most recent relief bill, the American Rescue Plan, contains $12 billion for HCBS, and advocates weren’t even certain the money would be in there until late in the process. Historically, home care and disability services in general simply haven’t been a priority, under Democrats and Republicans. Under President Joe Biden, that appears to have changed, as $400 billion is more than any of the advocates I spoke to had hoped for or expected.

Source: Biden Plan Would Allow People Needing Care to Stay at Home – The American Prospect

Deinstitutionalization and HCBS services are the biggest priorities of the neurodiversity and disability rights movements. That $400 billion is desperately needed.

Interdependence and care are good framing and good centering. Design is tested at the edges, where care is most needed. This $400 billion is a very welcome recognition of all that. Cheers to all the advocates and policy workers who got us to where this is even a possibility.

I’ve been rabbitholing, lately, on eugenics, particularly on what I call the cradle-to-grave eugenics of our current systems, contrasting that with the bioarchaeology of compassion and care. During my journey, this line jumped out to me as a disabled and neurodivergent parent of disabled and neurodivergent kids:

“[O]ur system punishes you for not practicing eugenics by not providing a social safety net.”

By not providing care.

When care is not infrastructure, when we are not oriented around our interdependence, we generate ableism and eugenics.

But if you’re killing an entire person to get rid of a non-communicable health condition, maybe think on why you’d feel the need for that. Is it for the good of the child? Is it for the greater good? How do you define that? Maybe it’s because our current system places greater value on a certain type of person? Maybe it’s because our system punishes you for not practicing eugenics by not providing a social safety net.

Source: Neoliberal Eugenics 1: Selective Abortion – Leslie’s Blog

What will future archaeologists of our care make of us? Let’s unlearn the individualism myths and politics of resentment engrained in us, center care, and celebrate our interdependence.

The notion of disability in our society is underscored by a bizarre conception of “independence”.

It is time to celebrate our interdependence!

Source: The Myth of Independence: How The Social Model of Disability Exposes Society’s Double Standards » NeuroClastic

We are dying for you to widen your lens.

Republicans have balked at the idea that infrastructure encompasses caregiving. “We’re up against a gender and racial bias that this work is not worth as much as the rubber, steel and auto work of the past century,” Mary Kay Henry, president of SEIU, told The Washington Post. “The key job right now is we have to in the public imagination and in the congressional debate widen the lens, so that people understand that investment in caregiving is an investment in infrastructure.”

Source: Biden Plan Would Allow People Needing Care to Stay at Home – The American Prospect

Previously: