Disability Justice as a Complex Adaptive System (DJCAS)-Part 2

My  First Glimmerings of System Understanding

Because the clinic organized its support around childhood and brain development, I gradually came to see systems through those lenses.  Both the Brain and Childhood Development were viewed as too complex to understand by the medical community at the time, but there was a cottage industry in models of development in both. Mostly the models were for understanding some part of those parallel processes. Then the model would generalized to be a basis for understanding all of the development.

I grew up in Midland, Michigan, the home of Dow Chemical, and I understood the limitations of general theories based on abstract concepts. But, the concepts in these models were still useful as analogies.  I just didn’t sort them into true and not true, but tried to juggle them all without dropping any. My hope was that I would eventually see further into these parallel processes if I chose this tactic.

This led me to try to understand the overall and developmental arcs of both the brain and human development. Neuropsychology became a bridge for me in trying to merge them.

Neuropsychology (the study of brain activity and development through assessment of a battery of standard skill and task performances) had been developing since the early part of the 20th century because of case studies of individuals with specific brain injuries in the 19th century onward. In the west, neuropsychology remained a research tool based in universities and teaching hospitals until fairly recently. But in the Soviet Union, neuropsychology was an active, clinical investigative tool starting in the 1920s. Two early bright lights in this were Alexander Luria and Lev Vygotsky. Both saw development of brain and cognitive skills as happening through active effort by the person, using the social and practical affordances in the environment. I didn’t see it at the time, but this was a basic way of saying that brain and personal development were a dynamic complex adaptive system, a process of change and adaptation that continued throughout life. Also, though I didn’t realize it then, I would follow a path of understanding complex adaptive systems and disability justice to the present day.

A friend of mine, a student of urban planning, pointed me toward the next rhizome of my search by loaning me a book, Notes on the Synthesis of Form. This was my first real introduction to system thinking, and it led to my exposure to the thought network that was called General Systems Theory.  Also, Alexander’s focus on design seemed to mesh well with my growing interest in how development of brain and person could be facilitated through engagement. Finally, the book also primed me for the dead end that was standard systems theory if my focus was real life individual development.

There was a large body of ideas about how systems worked, including Systems Dynamics, a way of modeling complex systems that used a stock (bathtub) and flow (water tap) mathematics to be able to predict changes in a whole system. I thought that such modeling would work well for machine-like systems, but not the complex open system that was human development. But I didn’t have something better to replace this framework, so I began to play with models as a way of seeing more clearly the implications of system interactions. There has been a steady growth of apps that can model these dynamics over the decades and I still play with free ones to get a sense of how a system is put together.

But coming to grips with the realities of complex adaptive systems and their evil twins, wicked problems, has required that I deepen my appreciation of the impact of future uncertainty and scarce resources on the flow of these systems, including The System (my term for the large socio-technical CAS in which we all act), and how this flow affects our change strategies.

Parallel to this process of conceptual deepening, i was also entering a new phase of my career in Disability Justice-a full time job as an advocate at Disability Rights Michigan (at that time, Michigan P&A). My experiences as an advocate (the complexity of individual and small group advocacy and the depth of the learning available from an organization that dealt with every level and every dimension of disability justice support in Michigan) would give me a much deeper understanding of the difference between the system as imagined or designed and the system as I engaged it in my work. The deepening of my engagement was a fairly steady result of my effort to understand my lived experience and that of all the other people with disabilities I got to know over the decades.

Disability Justice as a Complex Adaptive System (DJCAS)-1

Part 1: My Initial Steps on the Path to an Understanding of the DJCAS

“Our minds are finite, and yet even in these circumstances of finitude we are surrounded by the possibilities that are infinite, and the purpose of life is to grasp as much as we can out of that infinitude…the limitless variations of choice, the possibility of novel and untried combinations, the happy turns of experiment, the endless horizons opening out.…

And nothing is easier to lose than this element of novelty. It is the living principle in thought, which keeps all alive.”
(Whitehead, 1934-1947/1954, p. 160)

I returned to the US in December 1970 from 21 months in Vietnam without any meaningful purpose. Over my first year back, I gradually developed moderate PTSD, and experienced the “blossoming” of a moral wound that currently , while less emotional, still impacts my life experience, now in my 75th year.

I tried singing in a bar band that was good musically but bad as a business (more performance art than enterprise). When it crashed and burned after 6 months, the keyboard player found a medical clinic where we could volunteer, and my journey toward a deeper understanding of disability justice began. I am still expanding and deepening that understanding of DJCAS.

The clinic was run by a retired family practice doctor, and employed a PT and an OT. The focus was helping parents of children with brain injuries (whether genetic, chromosomal, TBI, neurodegenerative, etc.) support those children in their homes and communities. They were all parents who had not followed the universal advice, “put them in an institution and forget them”, that was the only support available in the early 1970s. This experience was the first of many that told me how The System overdetermines the segregation of real support to a system that it can control and use for its own purposes (political, financial, etc.).

And I mean institutionalization was the ONLY support alternative. There were none of the currently available supports. Parents watched their social relationships disappear over time as friends abandoned them to their struggles. Doctors largely held them in contempt (and said so) for having the nerve not to institutionalize, and often refused to provide healthcare at all.

A common first goal for the families was to build a minimal alternate support system so that the parents could, say, go on a date without having to fear the medical harm of their child. That meant a well-trained babysitter. No typical babysitter would take the job because of fear and disability stigma about managing tasks like suction or seizures. Home nurses were incredibly expensive and no health insurance covered their use as a babysitter. Our first jobs were to be trained to do basic care tasks and crisis intervention for families to put their personal relationships back on a more normal track. The support tasks involved were not difficult to do. When I realized this, it was my first introduction to the almost universal cultural devaluing of people with disabilities and their families, with The System of non-existing supports being a vehicle for achieving this.

In the early 1970s, there was the beginnings of a movement to deinstitutionalize people with (what today) are labeled as having intellectual and developmental disabilities (IDD) or cognitive disabilities. The clinic began to receive contacts from families whose children had been returned home from institutions without explanation. Some investigation showed that these returns were in the institution’s interest, not the family’s. One group included children that the institution thought might die, forcing a report with cause of death from an official investigation. Since there was growing scrutiny of these institutions, they thought it prudent to send them home to die. Another group were individuals whose behavior (and the medieval responses by the institutions to that behavior) were prone to evidence of abuse like bruises or broken bones which would be obvious to inspectors.

So, my growing understanding of the appalling place of people with severe disabilities and their families in The System’s social order of the US began. It took me decades to arrive at my current understanding, and I participated in practices that I would view now as abhorrent (the use of shock or confining approaches to force behavior change), but I was beginning to see the truth and the truth expanded over time as it does when you pay attention to the reality of indivudal human experience.

The second dimension of disability justice that I began to understand was how real support is a more ecological than the medical procedural approach that was the practice of medicine at the time. The support logic of the family support clinic ran like this:

Parents of children with severe brain injuries can’t see what their children are trying to do because the children don’t look like the developing children they have been exposed to in their social communities (i.e., they were institutionalized and never  a part of the ongoing local social community)

While support for the families was certainly focused on the child’s developmental acquisition of skill and capacity, the parents also had to learn how to see what their child was trying to do and facilitate it in real time.

This kind of perception can’t be educationally taught. It is only absorbed by real-time engagement in the task, supporting the child in the moment to succeed in skill and understanding expansion, and simultaneously building a deeper understanding of the child’s efforts.

Thus, the parents were learning to see their child as an active agent, trying to develop like all children do.

This dimension is a very deep idea that applied well beyond the clinic’s borders, the clinic’s mission, and the times in which I worked there. But, I only slowly became aware of the astounding potential impact of this “clinical” insight.

Second Order Advocacy (SOA)

We use First Order Advocacy (FOA) to destabilize and disrupt a weak process of the SOF related to disability education legal requirements with which the SOF must comply in order to legitimately use funding (and many other resources like staff, equipment, marketing, etc.). The SOF needs to effectively support these strong processes to reproduce itself successfully. Successful reproduction of the strong processes is necessary to assure the benefits of being part of the SOF, whatever they might be.

The legal requirements of special education are not the only type of weak processes the SOF must accommodate. The resources that the SOF might use to counter a legal disruption are not the same kind of resources the SOF would need to counter a disruption not based in special education law or Section 504.

Remember that the SOF countering a disruption doesn’t somehow restore the resources lost in doing so. There is no simple way to put the resources back into their “best” use in support of strong processes of reproduction. If the conflict (or conflicts) continues for a long time, there will be a more or less permanent redistribution of the available resources that were used.

For example, in the early years of special education advocacy, SOF tried first to negotiate with advocates using bureaucratic methods such as obfuscation, then hired attorneys for specific disruptions, then had a permanent legal presence through retainers, and now mostly hire counsel that have specific special education law expertise, as well as maintaining the retained resources. Each of these steps makes the resources involved unavailable for other purposes. They become the price of doing business and allowing some level of accommodation with the unavoidable presence and actions of advocates.

Once committed to the accommodation of a particular stakeholder, the resources are no longer “fungible”. The SOF will have much greater difficulty shifting significant parts of the resources to any other purpose, even if there is a real need by the strong processes of the SOF to do so.

Second Order Advocacy (SOA) takes these realities into account. Effective advocacy becomes premised on the idea that all stakeholder relationships that are part of a weak process accommodation with the SOF are potential sites of disruption.

Next Post: The Basic Practice of SOA

A Strategic Approach to Advocacy Success

We tend to value our success changing The System in tactical terms:

  • Creating this specific improvement in support; this specific elimination of discrimination, bullying, limits; this change in public policy or practice.
  • Enabling a move into a better or more expansive “adjacent possibility”, unavailable before this specific advocacy success.
  • Bringing with it increased funding, skill enhancement, recognition, and an expansion of our current reach.

But, underneath our judgment of immediate value lies a deeper and far more extensive meaning, that we would call a strategy if we understood what a strategy is.

We don’t understand. We think a strategy is a clever engagement with the System of Focus (SOF) to force them to accommodate us. It isn’t.

A Strategy is a scaffold for engaging our environment with effective decisions over time, when:

  • The future is unpredictable. If the future was predictable, we wouldn’t need a strategy. We could just make an operational plan like a logic model and success would roll out like a boulder falling off a cliff to the ground.
  • We don’t have enough resources. If we had infinite resources, we could just keep plugging away, through trial-and-error, until we succeeded.

The traditional view in the military is that strategy is embraced through ends, ways, and means, the “dimensions” of strategy implementation.

So, what should the underlying strategy in our disability community advocacy that allows us to decide on our ends, ways, and means, and be effective advocates?

I propose that we should embrace a two-pronged strategy:

  • We should continue to work to make The System on which we all depend, better at supporting our needs, and providing more ways we can control the supports that the system provides.
  • We should also begin building an alternative system based on our local, collaborative ability to supplement what The System locally provides, to make a base for supports that we control democratically and through the synergy of our various skills, abilities, and experiences. In other words, we band together to make up for the shortfalls of The System, and to provide support no governmental or private system would consider worth pursuing.

This strategy recognizes our current dependence on The System, and the complexity of reducing our dependence on it. It also says that we, as mutually supported and respected friends, families, and allies, can and should create what we want right now. This is true, even though the process of creating that alternative will be long and complex. Only through our mutual determination to take each step together will it be possible for us to realize what we should have had available to us all along.

(P8): Using The System

A buffet of many food choices in a restaurant.
A Buffet of Many Choices

If we must continue to use The System while we try to build supports that we can effectively control and scale, we will need to understand how The System operates, and what we might do to make the best use of it.

The first reality that we must accept is, “The purpose of a System is what it does”.

It isn’t:

  • The stated Mission of the System
  • The Strategic Plan of the System
  • The stated Policies of the System.

Does this characterization seem harsh to you?

For example, I have watched the changes in the Social Security system around SSI disability supports since the early days of the system. Starting in 1981, there has been an incremental alteration of the original purpose of the program (to provide basic income and health care access), to one that reduces real-time eligibility and bureaucratizes due process to the point that it has become a system for denying eligibility to the greatest extent possible without triggering too much bad publicity and political backlash.

My experience is not unique. Everyone who became an advocate in the early days has recognized the same overall deterioration in the purpose of SSI.

Because the purpose of a System is what it does, not what it says.

And our use of The System to support our community must reflect that reality.

The System is always corrupt (maybe disrupting is a better word). Not because the people in it are necessarily committing financial crime. The System is corrupt because, over time, its original purpose degrades, and the uses to which The System is put gradually become as diverse as the local needs of all its stakeholders, including us as members of the disability community. Such complexification of the original mission is a normal response of aging in any CAS, including each of us. If no one tries to alter this trend, you get a trajectory that tracks the following phases:

  1. Narrowing and self-centering of mission (Bureaucratic Narcissism)
  2. Mission and Self-Interest become Indistinguishable (Functional Psychopathy)
  3. Use of System assets for personal gratification (Frank Exploitation)
  4. Networked misappropriation (Gang Exploitation)
  5. RICO activities ( Corrupt Insurgency)

AND, at the same time:

The system is always different from what it was just before now. Novelty, broadly understood, is constantly changing The System. Novelty includes all our efforts to make The System work more effectively for us. All CAS create micro-diversity as part of their evolution. The people in the system are only dimly aware of this, which means the behavior of the system is often surprising. It is the micro diversity which give The System its resilience, but this micro diversity triggers in any bureaucracy a futile effort to eliminate that diversity. It is the inability of the system to eliminate this diversity or its production that provides us with a landscape in which we can become better at using The System.

We have two main methods for getting better at Using The System. One is scanning and learning (Fishing for Tools), and the other is Crowd-Sourcing our search for solutions.

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(P8): Making FutureStrategy Real-Two

A diagram with two triangles pointing from the left and right sides at a circle. The circle is red and contains text, Expand Our Freedom, the left and right triangles are yellow-orange, and contain text, respectively, Change the System on the left, and Bild our Systems on the right. There is a photo behind each triangle. Behind the left an image of a cross community protest related to disability rights. Behind the right a poster of mutual aid around the pandemic.
Our Complementary Strategies

Even though our strategy of iteratively improving the legal framework of disability rights has certainly expanded our life choices, over time it has become less and less effective in making new improvements. The System has gotten better at undermining our advocacy and using its System Logic to marginalize our gains.

We need a way to move forward that doesn’t require us to allow our gains to be degraded by the logic of the System.

At the same time we will continue to need the System as a source of funding and expertise, because of the complexity of our needs. Few of us can simply drop our relationship with the System entirely.

But we do not need to view the System as The (only) Solution. Instead, we must learn to view the System as a tool, and begin to make our own systems to augment, replace, and finesse what we need from the System. We must build what we need together and use it to orchestrate a more effective strategy for achieving our freedom. The systems that we build will be:

  • Local
  • Intersectional
  • Collaborative
  • Community-focused
  • Self-funding

They will be based on social justice models, rather than civil rights entitlements. That doesn’t mean that we don’t use civil rights laws to advocate. Again, we view civil rights laws as tools, not solutions.

Our systems will build from the bottom up, not from the top down.

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The Burghers of Calais

Rodin Statue of the Burghers in sackcloth and with ropes around their nects going to meetheir deaths to save their city.
Burghers of Calais

The Burghers of Calais is a statue by Rodin, pictured above, and a story of commitment by actual politicians to the lives and future of those they represented. This commitment brings up some interesting questions about the future of US political elites after the current election.

Around the time that Britain became a hotspot for the Black Plague, King Edward was fighting in the early part of the Hundred Years’ War. Edward was conducting a siege of the French City of Calais that had lasted almost a year. Needless to say, the citizens of Calais were suffering from starvation and disease.

Edward (being a nasty piece of work) demanded that the Burghers (the most prominent citizens) come to him dressed in rags, with nooses around their necks, carrying the keys to the city, ready to be beheaded. Edward said he would spare Calais destruction once the city was open, but would kill the Burghers.

Six of the Burghers met Edward’s demands in order to save their city. At the last moment, Edward pardoned them for reasons that are obscure (many stories have emerged as to how this might have happened).

My question to you as you participate in the 2020 election, no matter who you vote for, or how you vote, is:

What current officeholders or candidates for this election do you think would be willing to give up their lives for those they represent?

Rodin, The Burghers of Calais

The story behind the sculpture

(P7): Using the Dispositions of Your Targets

A pink frog-like human brain ready to leap.
Leapin’ Neurons, Batman!

Your target also has dispositions (policies, incentives and disincentives, cultural ableism, political pressures, economic concerns, etc.) that you can use to anticipate where advocacy might be needed, and where an advocacy ecosystem framework might be more useful than simply responding to an oppressive action.

You can think of these dispositions and system drives like thirst or hunger in us. You can also think of these dispositions as implicit biases which provide “answers” to “questions” that the system gets from its environment, including your advocacy “questions”.  They are all flows of ongoing perceiving and acting to deal with the unavoidable in the target environment.

As advocates, we also have dispositions, both as drives and biases, and we too act continuously in the same way that our targets do. You can use your target’s dispositions to enhance your advocacy, and you can use your own dispositions through reflection and dialogue to expand your vision of the possibilities of advocacy, as well as expanding your skills. Most importantly, you can use reflection on your experience and practice of advocacy to move along the 3 phases of becoming a capable advocate:

  • Beginning: Creating a base reference system of rules and techniques in your brain to recognize repeatable patterns and methods of advocacy.
  • Adeptness: Understanding when to break the reference system’s rules and tweak the techniques in order to solve difficult or unusual advocacy challenges.
  • Mastering: Being able to respond to the entirely unique aspects that a particular situation requires for a successful advocacy outcome.

Your brain can “jump” to new levels of capability through the experience and training you gain over time.  And you can collaborate with other advocates to expand the scope and impact of your advocacy. The process of reaching mastery of advocacy is a process of building pattern-recognition and reflection competence as an integrated internal complex adaptive system.

Your target’s dispositions are roughly similar across time, and once you have had significant interaction with the target, you can begin to see these dispositions as the structure of the system, and you can anticipate them as roughly standard responses to your advocacy.

We can think of target dispositions as constraints within which the target operates. They are like the weak link processes that the target has with agencies and local context processes. While advocates might have difficulty destabilizing a disposition (as advocates, we often don’t have the ability to do this), we can always threaten the relationship that the target has built up with some specific dispositional trend or force-say a millage election.

Person-Centered Planning and Social Justice

By Norm DeLisle: For Entire Post, Go Here…

A few years ago, I created a short presentation as part of a grant to train LTSS Supports Coordinators in the Why and How of PCP. My presentation was part of the Why. I did the presentation is a Microsoft Tool called Sway, so I could see how the tool worked. Sway is a way of rapidly creating online presentations that is easier than PowerPoint.

I decided recently to redo the presentation using a Social Justice Framework instead of the more step-by-step version I did back then. Here it is, and I’d be interested in your view of the results…

We are here, Get used to it.

A Social Justice Response to Disability-Based Oppression

I estimate that more human beings are enduring agony today than ever before; the number could be greater than the sum of sufferers throughout history. I speak of starvation and epidemic; war and terrorism; deprivation, exploitation, and physical torture. I repeat the word agony; I am not talking about “hard times”. 
-Stafford Beer

All forms of oppression deny, distort, degrade or disrupt the exercise of agency by individuals, families, human communities (however they are defined by gender, sexual orientation, or any other characteristic of identity), race, ethnicity,or nationality. Because all these examples of targets for oppression have members who have disabilities, the oppression of the disabled embodies the deep richness of the meaning of intersectionality and its possibilities for real empowerment.

For most dimensions of identity, social justice progresses through large-scale activism, focused on community-level protest and policy advocacy. Successful activism creates “affordances”, tools in the environment that can be used by members of the community to resolve or correct some form of oppression. For People With Disabilities (PWD), while such activism is a core part of our progress in Social Justice, the level of oppression embedded in the infrastructure of every society in our world is so ubiquitous, that community level social justice progress is not enough. Each PWD needs a very local and granular set of affordances to experience and pursue the same freedom that other communities can explore through the modern advocacy of valued social justice outcomes.

(P7): Enabling and Managing the Ecosystem of Advocacy/Targets

 An abstract view of how Community-Based Organizations participate and drive delivery system reform, as an example of an advocacy ecosystem. See link below image for text
Text Description of Image

Although we tend to focus on the advocacy task at hand, our work to support the personal agency and full life of individuals with disabilities does not occur in isolation. As advocates, we are a part of a larger complex adaptive system (CAS) that includes support and funding systems, policy and legislative systems, and communities of people with Lived Experience from the many communities of people with disabilities. Our focus on the current task assumes the ongoing operation of the larger ecosystem as a context for all our advocacy work. We make use of affordances (agencies, laws, rules, funding, expertise, etc.) that act within the larger advocacy context as ongoing processes which we can influence to achieve valued outcomes.

In the larger processes of this ecosystem, all subsystems change and adjust over time through advocacy activities (and many other activities as well). Our goals as advocates are to:

•Build our relationships with other parts of the ecosystem in order to carry on advocacy and the other kinds of communication necessary to maintain these relationships.

•Evaluate and adapt our advocacy planning and actions based on a constant debriefing of the impact of our actions and an equally constant monitoring of the ongoing changes in the rest of the ecosystem, that both enable and disrupt our advocacy strategy.

•Facilitating a more effective advocacy/target ecosystem, in the sense that it becomes easier over time to advance valued outcomes.

•Introduce New Values and Novel Expectations into the interacting parts of the ecosystem. Successful introduction triggers a cycle called Autocatalytic Mutualism which drives changes in the ecosystem. Effective advocacy is always creative in this sense.

This part of the project will explore why we need to keep the entire advocacy ecosystem in mind while we work toward our valued outcomes. We are a part of this ecosystem and never stand outside of it, though our focus shifts as our work and the context of our work evolve.

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