Disability Justice as a Complex Adaptive System (DJCAS)-5

Part 5: The Possibility Space of Disability Justice and Advocacy in the DJCAS

I have focused on individual and small group advocacy, but the entirety of The System of supports , in all it’s political, financial, social, and personal dimensions is the possibility space for our disability justice work. Our advocacy can change what is already realized in the possibility space, as well as introducing novelty into that possibility space.

The details of this macro-CAS should not be the drivers of that advocacy work. Instead, we need to recognize our journey to Disability Justice as an exploration of possibilities that are not preset. This is a very different process from a sequence of operational advocacy plans that start and stop with success or failure. I’ll try to illustrate this critical difference below.

Most advocacy work uses operational planning as a framework for change. Logic Models are a specimen example of how this type of planning rolls out. The model uses chains of causal links to show how we get from here to there. The models often contain intermediate endpoints to clarify the flow from here to there. The final outcomes are the result of the links being implemented in order, and must be measurable to qualify as real outcomes.

There is nothing wrong with such models, but their competent use assumes that the advocacy plan arises from a true strategy, of which the logic model is a component. Unfortunately, Strategic Planning in modern organizational work (including advocacy work) has come to mean a great big logic model and a disconnected isolated analysis of forces acting on the organization (often called a SWOT analysis). While I will post later about how real strategy is distinct from operational planning, I need to first distinguish the space in which disability justice strategy operates from the closed systems of operational plans which should be, as it were, local manifestations of our strategy.

In future posts, I’ll use different perspectives as a way of pointing toward the concept of a disability justice possibility space, as opposed to causal link models:

First, though, I’d like to talk about the differences between a space of causal link plans, and a space of possibilities.

I would describe a logic model or any other operational plan based on mapping causal links into the future, as a closed system, regardless of the intentions of the creators. Causal chains linked to outcomes don’t really admit of other possibilities (and generally discourage them as distractions or loss of focus), except, of course, for failure to reach outcomes. This is also the ordinary way we view the fulfilling of intentions (the realization of the intention being the final outcome). The idea of a “bucket list” is a pure example of the limitations of this kind of thinking.

One way of seeing the problem with this simple take on the fulfilling of intention is to look at the successes and failures of the philosophy of action in recent years. In Dynamics in Action: Intentional Behavior as a Complex System, Alicia Juarrero argues that traditional framework for action theory is just such a logic model of causal links, and that it has never been up to the task of representing human intention or the way that actual human beings realize their actual intentions.

Dr. Juarrero sees conceiving of an intention as creating a possibility space for its realization. This kind of possibility space is a complex adaptive system (CAS), where the dynamic of realizing it creates alternate possibilities at each step of the process, and thus choices for the person in continuing to realize any intention. As an intention arising in a networked community of intentions, the CAS of the possibility space can potentiate a huge space of alternate next steps. In much the same way that the realization of a personal intention can produce events that cloud or interfere with the realization, so a large possibility space (say one arising out of the many intentions of the disability community and its allies) can generate, for example, counter-intentions by providing energy within the CAS that can be seized upon by opponents of our community.

There is no optimal causal path to the realization of an intention, whether personal or community. Instead there are the unique, path dependent, sets of choices in pursuit of the intention. Or in the case of disability justice, the pursuit of our dream.

Here is a simple story about how the same intention can result in very different paths to realization. Imagine two six-month old infants, maybe fraternal twins with the same parents and the same rough environment, but different genetics. Each infant has their own playroom. The parents decide to get each an identical ball that makes sounds, flashes lights, and moves. They place the ball the same distance from each infant, trigger the lights, motion, and sounds, and watch how each infant goes to get the ball.

One child is impulsive and has boundless energy, and charges off as fast as possible to get the ball, stopping to reorient to the ball and correct the path of realizing the intention. The other is careful and precise, checking almost constantly to make sure of the path. Both finally reach the ball, grasp it, and play with it.

In the causal links view of intention, each deviation by either infant from the most efficient approach to the ball is an error, a mistake, a waste of resources. Behaviorism, for example, would use its ontologically based “logic model” assumptions to try to program the infants to not make these “errors”. In fact, something like this reasoning is the basis of most of our attitudes toward the realization of intention, whether we buy the ontology of behaviorism or not.

The question I would like to raise is, “What else is happening to the child’s development as it takes it’s child-specific approach to realizing its intention?”. It is those differences that constitute the possibility space for each child and, writ large, the differences in the possibility spaces of each of us as we work our way through the realization of all of our intentions, including the ones we cherish for the realization of disability justice.

I’ll close with some ideas from Kurt Vonnegut that he offered to a high school student:

“Practice Becoming.

Practice any art, music, singing, dancing, acting, drawing, painting, sculpting, poetry, fiction, essays, reportage, no matter how well or badly, not to get money and fame, but to experience becoming, to find out what’s inside you, to make your soul grow.

Seriously! I mean starting right now, do art and do it for the rest of your lives. Draw a funny or nice picture of Ms. Lockwood, and give it to her. Dance home after school, and sing in the shower and on and on.”

To me, this is the most important purpose of Disability Justice and our pursuit of it. The realization of possibility, not just intentions, but the fuller possibility that lies in the choices of each and every one of us for our lives. While intention might be a tool to facilitate this purpose, it is a tool, not an end in itself. Becoming is the end in itself.

Disability Justice as a Complex Adaptive System (DJCAS)-4

Part 4: The Clash of Design and Actual Engagement in Advocacy

Although we use the System As Designed (SAD) (irony intended) as a context for our advocacy, anyone who advocates quickly understands that the relationship between SAD and System As Engaged (SAE) is, shall we say, dysfunctional. It is always important to remember that the conflict between SAD and SAE is built into the way we plan and implement all designed systems, not just those that obviously impinge on the lives and possibilities of the disability community.

The experience of reality is different for a person working from outside the SAE than it is for a person working on the inside of the SAE , not unlike the difference between your experience of your self and the experience of another person of your self. Inside the SAE for example, student rights to an FAPE are a set of constraints that are part of a large universe of constraints, including scarce funding and the competition between special education funding and all other financial aspects of the school district, political competition and conflict over everything of value in the district, the impact of personal relationships on decisions, labor agreements, local electoral politics, national views of education as a political football-and so on.

From outside the SAE, The SAD guides the presumption of value for that same universe of meaning I described above. And these two perspectives on that universe of value are very, very different. The biggest upshot of this unavoidable reality is that any conflict over an issue of advocacy has many threads that branch out from the apparent issue into the respective perspectives of the advocate and the district insider. These perspectives are not aligned to one another. They can be made mutually coherent for resolving the advocacy issue by negotiation, but the terms of the negotiation are still very different for the two parties. For the SAE, put somewhat simply, negotiation is about the distribution of resources that the SAE sees as “theirs”, both as “owned” and as demanding allocation for the common good of the SAE, and are a part of a universe of negotiations about those resources extending well beyond the specific advocacy issue or policy. For the advocate, the negotiation is about assuring the allocation of resources sufficient to produce a FAPE and the effective continuation of the  values in the disability educational rights framework.

Engagement between advocate and insider can produce better mutual understanding and make negotiation easier, but it can’t erase the pain points of the differences in perspective. This is generally true wherever SAD and SAE engage, regardless of the system (rehabilitation, healthcare, employment, community living, etc.). It is also true of for-profit corporations. The differences in perspective can be tweaked but not fundementally changed.

As I mentioned earlier, the meta-drivers of the dynamic decisions in any CAS are:

  • The unavoidable uncertainty of the future, and the necessity for hedging against the unpredictable
  • The universal scarcity of resources (not just money, but every kind of resource)

It is the different views of the value of the various resources and the level of risk that is assigned to uncertainties that maintains the conflict between advocate and insider. These constraints operate well beyond the kind of advocacy for disability justice I have discussed so far. I’ll carry along and expand this notion as I discuss more sophisticated and system-like forms of advocacy and social justice change.

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

An Example of Dark Triad Corruption of the Authenticity of An Important Support Mission


Below, I will give an extended overview of some aspects in the evolution of the SSI (Supplemental Security Income) program since 1974 (when it was first implemented) as an example of how the purpose of a support system becomes corrupted over time.

I was working for Michigan Protection and Advocacy Service as the SSI program rolled out in its first years, and saw first-hand just how deep the corruption of the eligibility determination process became. It has only worsened since.

SSI eligibility determination has embraced a purpose of denying eligibility unless there is a political downside. Given the vulnerability of recipients of SSI, this is tantamount to condemning a large number of people with severe disabilities to additional medical problems, debility, and death.

The Supplemental Security Income System


Wikipedia has a decent review of the history and thinking that went into the SSI program, but the article is bloodless. It doesn’t reflect the efforts of the SSI system and advocates in their mutual struggle to (on the one hand) reduce the number of claimants or make it so difficult to get or be on SSI that the claimant despairs and leaves the program, and (on the other) to correct failings of the system, expand eligibility, and due process protections.

  • During the early part of the Reagan administration, large numbers of people who were currently eligible for SSI were tossed off the program. In Michigan this amounted to 50-60 thousand individuals.  Marsha Katz (the most knowledgeable expert in Michigan at the time) and other advocates created a curriculum which several hundred advocates embraced to more effectively respond to this wholesale attack on the lives of people with severe disabilities. With capable representation in the fair hearing, many people were able to become eligible for benefits again. The cases I had were all individuals with developmental disabilities, whose disability was clear. I think we all became convinced by our experience in these hearings that there was no due process review that resulted in the huge number of denials, but a simple arrogant process of tossing as many people under the bus as the administration could.
  • The Statute that defines the purpose and goals of the SSI program is more or less clear about eligibility for the benefit. I may not agree with the definition of eligibility, but it is clear. The procedural framework that is used in initial disability determination and first-reconsideration for disability determination is not the statutory standard. It is a hodge-podge of procedural barriers designed to produce automatic triggers for denial. The result is that roughly twice as many people are denied eligibility as would be the case if the statutory standard was used. This is not simply bureaucratic obfuscation. It has real world consequences. The number of denials begins to result in appeals that create waiting lists as long as 2 years for a hearing that might actually look at eligibility under the statute. There is also an empty and deliberately useless process called an in-office reconsideration step that uses up time but seldom results in a change in the initial eligibility determination result. SSA whines that it needs more money to solve this waiting list “resources” problem when it could easily free up an enormous number of resources by making its initial eligibility standard reflect the statute. It won’t do this. The administrative structure is deliberately framed to deny the maximum politically safe number of people with severe disabilities it can.
  • There are a huge number of procedures that are “gotchas” (they seemed to have multiplied during the pandemic) in the decades of the program’s development. It is impossible to mention them all. They are designed to require a level and sophistication of response from people on SSI (who have very severe disabilities, and whose income is WELL below the poverty level) that makes it certain a large number of appeals will simply not be made, and another recipient will “bite the dust”. The one that has been used with the most venomous intent is the overpayment reimbursement requirement. While repayment of overpayments is abstractly reasonable, I would ask you if the following scenario is reasonable (this response is especially spiteful and shows the contempt that SSI has for its recipients)? A person on SSI has a small, part time job whose income is paid out every two weeks. The person dutifully reports the income to SSA each time it is received. Because it is possible for more than two paychecks to be given in a single month, the person may go over a threshold in one month while not actually ever being over the threshold for the year. In SSA ‘s reality this is an overpayment, and SSA must terrorize the recipient with threats to recoup their lost riches. Now, I still wouldn’t think it was fair to cost the person a month of their Medicaid or a month of financial eligibility, but at least that would be transparent. Instead, SSA doesn’t take any responsibility for notifying the person that this situation exists in anything you or I would see as a realistic time frame. There was an extreme example recently, in which SSA demanded the repayment of 2 cents from 15 years ago. SSA never has any responsibility to be transparent, and they exist in a timeless universe where 15 years is the same as no time at all. Advocates have struggled against such procedural evil across decades, but the fight is a loser. The reality is that the SSI bureaucracy pays their employees an enormous amount of money specifically to come up with gotchas. These employees don’t have to struggle because of poverty or lack of health insurance. In the truest sense of the concept, such policies live off the backs of people with severe disabilities, and can’t even claim they are doing this for the “good” of the person with the disability. Instead, their purpose is to implement more and more complex ways of forcing people off benefits without causing political pain to their superiors.

I hope I’ve given the flavor of this ongoing effort to reduce or slow the growth of the number of SSI recipients without creating political problems. In my view, this is corruption in every sense of that word.

Other examples of programs that started out with good intentions and ended up with bad:

  • The Spend Down Program under Medicaid
  • SSDI waiting periods for financial support and health insurance
  • Mental Health Severity Thresholds and the way they are gamed
  • And many, many more examples.

Ask an advocate you know for examples from their own experience. They are endless. Corruption is part and parcel of every support system in government as it evolves over time. This corruption is a form of sabotage, the ongoing, step-by-step, corroding of the purpose of the system.

Sabotage exists as a ubiquitous form of corruption in every aspect of the American experience. While I think most people are well aware of financial corruption as a basis of policy in governmental systems, there are less obvious and more common forms. I’m going to do a series of posts on this invisible sabotage of life possibilities next.

Some Resources

Supplemental Security Income Advocacy
Stuck in Time: SSI Desperately Needs Updating
Social Security: Know Your Rights

Next: The Long-Entangled Insurgency: Part One


The Corruption of System Purpose

As many people have noted, the purpose of a complex adaptive system is what it does (its dynamic process of evolution), not what it says it does (its marketing). Over time, what a system does changes in many ways.

All support and rights systems have two missions:

  • Why the system was created (usually called The Mission).
  • Survival (keeping the “doors open”, if that metaphor still means something during a pandemic).

The evolution of the system over the near-term tracks the evolving relationship between these two forces:

  • In the early part of that evolution, especially in small nonprofits, there is a hard learning curve about why you have to pay attention to money when you become part of the organization because of that attractive advocacy mission. The “shock of funding realities” causes the system to be shy of making financial mistakes and gradually erodes the place of The Mission as the foremost force in system evolution.
  • Ways of buffering the system begin to be developed, largely driven by this anxiety about resources. Resources, that might have been used for mission-critical activities, are used (or invested) in protection of the system from dissolution. For a benign example, the creation of a reserve, to deal with the reality of slow funders and grant based support, is a common way to buffer the system.
  • Because it is the managers of the system who are anxious about being blamed for financial failures, keeping the doors open gradually replaces The Mission as the field within which managers create their plans and cognitive/emotional priorities.
  • Along with this dominance of focus on resources, there is inevitably some external cycle of funding gain and loss which creates pressure to have ongoing administrative controls to preserve funds by reducing the cost of The Mission. The usual rubric for this is “efficiency”. Thus, the expansion of administrative/managerial control over the priorities of The Mission gradually leads to expanding the scope and detail of administrative actions as a proportion of the total activities of the system. In other words, bureaucracy expands over time, and is justified by the highest priority of being “efficient”.  This is interesting moral choice since bureaucracy keeps expanding and costing more as this process evolves. In and of itself, bureaucracy contributes nothing to the direct fulfillment of The Mission. The justification for this expansion is always the protection of The Mission as the outward marketing face of the system’s self- protection.
  • It is important to note that the resources used to preserve the system are taken directly from funds that could have been used for The Mission. This process of removing resources from direct support of The Mission to preservation of the system is an example of the  classic “moral hazard” found as part of economic activity. In this case, the risk taken by the managers is to The Mission. As time goes on, all governance aspects of the system face this moral hazard. Though not universal, it is common for the management and governance processes of the system to stop thinking about the Mission and assume that their decisions are automatically supportive of The Mission.
  • I call this process corrupting. This is not simple criminal or moral corruption, like bribery or embezzlement. The corrupting force is in the head of every person who makes decisions about the use of resources, which is everyone, including employees. How far the corruption evolves is unique to the system dynamic over time, and is fractal.
  • Fractal simply means that all decisions regardless of level in the system support or impede the corruption. Notably, this includes decisions made for political gain.
  • There need not be a high level of corruption for this evolution to profoundly affect the system. My observation of small nonprofits over the last half-century, suggests to me that a level of 5% in corrupt transactions means that all transactions in the system are tainted, even though the 95% are not corrupt, or not done by people who are behaving corruptly. Typically, if both explicit and implicit bureaucracy are included, the minimum of such corruption can be estimated at 15%.
  • Note that there is no simple, easy solution to this corruption process. Instead, reflection on the impact of financial bureaucratization on The Mission must be embraced as the highest priority for governance and management. It almost never is. Even when it is embraced, bureaucracy is tuned to prevent meaningful impact by such reform.

The reality of corruption of Purpose has powerful lessons for the practice of advocacy, as I suspect most readers already know. But there is another layer to this corruption that evolves in large systems of support for people with disabilities and we need to understand how it evolves to truly understand the implications for our advocacy in the face of such corruption.

Next Time: The Dark Triad of System Evolution

(P8): Ice-Fishing for Tools

placing tip-ups in ice fishing using a sounder to test for depth and placing the bait about 1 foot above the weeds attached to the tip-up.
Placing Tip-Ups for Maximum Serendipity

Because The System is a CAS, and the building of Our System is the building of a CAS, there is no simple procedure for finding and using tools to take from The System what we can and create what we need in Our System. While all efforts to find useful information are doomed by the sheer amount of it, You can reduce the effect of that firehose by a combination of focus and allowance for serendipity.

Ice-Fishing is a decent metaphor that combines the concepts of focused and serendipitous search. You do not cause the fish to bite, you use their natural behavior to entice a bite. The “focus” part is the area you choose in which to fish, and the serendipity is the placing of a variety of locations for tip-ups covering areas that are not part of your immediate focus. When a tip-up is triggered, you check it to see if you got a fish.

Searching for what is useful to your individual path to personal autonomy and choice is very similar to ice-fishing. Your mental framework for what that path should be will orient you to the tip-ups that might be of value to you.

I will describe how I approach this, but the path you want will reflect your own evolving growth and experiences, and you will need to evolve a scaffolding that truly reflects you and those important to you.

There are some heuristics that you can use making decisions about that to include in your search scaffolding:

  • You need a diversity of search scaffolds, so that your choices, as a group, won’t reflect a bias that systematically prevents you from accessing useful information
  • You should actively add small numbers of new search algorithms as you run across them and eliminate ones that don’t show use to you in a reasonable time. I use a few months as a rough metric for assessing usefulness
  • Accept that a large percentage of what you review will not be of use.
  • Calibrate your judgement of what is useful to some self-chosen framework, like the headline, and have another layer of review that lets you quickly review the possible usefulness.
  • Trust your intuition about what might be useful.

The value of your scaffold depends on the linkages in the information universe you search. You will always miss items of great importance and must depend on the larger network you are sampling to find that which is of use to you.

Here is a sample of the tools I use for my scaffolding. There is nothing special about these tools. I evolved my current scaffold step by step over a period of years, and the evolution continues:

  • Feedly: This is an RSS reader. Though deprecated by many, RSS remains the simplest way I can sample many item summaries with little effort. At one point, I had 300 sources. Now, I have about 120.
  • Medium: I use the tools of following and item recommendations, and I mute or delete sources every day, so that there is an evolving focus. The Medium universe is constantly evolving, and the same must be true of your scaffold for scanning the possibilities.
  • Paper.li: This app allows for the creation of papers with themes that are published periodically. I have chosen a variety of papers with themes that I find useful. My regular scan includes the headline and a short description.
  • Social Media: I review Facebook, Linkedin, Instagram, etc. and the scaffolding for this review includes both my personal and policy models. Since these two models have significant overlap, I get a lot of surprises, and the surprises often show me a profitable path or paths for expanding my search resources.
  • WordPress: I follow WordPress blogs that produce useful items for review.

Because, in systems theory terms, we are all “path-dependent”, every building of a personal scaffold will be unique. Strong efforts to reduce this uniqueness may have the unintended consequence of creating a systematic barrier to that which would be of use to you.

Creative Commons Attribution 4.0 International License

(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