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

Introduction

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

History:

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

Evolving Toward the Abyss: How We Blunder into Inauthentic Purpose

I’ve discussed why well-intentioned systems begin to embrace a financially/politically driven purpose rather than the value-driven purpose of The Mission. I think it is helpful to understand how such an embrace creeps up on a system and changes every aspect of its evolution.

In an earlier post, I gave a short overview of the kinds of changes that take place in the first few years after support and advocacy systems are formed. Below is a more nuanced and much expanded version of the long term:

Phase One:

Initially, Board, managers and staff are recruited from a community that already has a purpose related to The Mission.
Keeping the door open seems tedious and unrewarding, and is often thought to be unconnected to The Mission, or even destructive of it (irony abounds in this evolutionary process).
Financial disaster, Board and Staff turnover, small time embezzlement, and other results of not having adequate financial controls produce relentless anxiety in managers and board, who are, after all, legally/politically responsible.
They shift their priorities to financial or political incentives that seem to offer more stability.
The system settles into a pattern where most time and resources at the managerial and board level is focused on money and marketing.

Phase Two:

The focus on money and marketing often produces real growth in available resources of all kinds. Salaries increase, reputation in the larger community (whatever that community might be) becomes noticeably improved, the ability to recruit Board members with enough standing that they can help with keeping the doors open, and operational improvements in managing funding, become part of the ongoing evolution of the system.
New staff join the organization because of a combination of commitment to the Mission and the perks of effective financial/political sophistication. These twin motivations shift to favor perks over time.
Managers shift their priorities to accommodate the stability and comfort of effective financial/political sophistication, and The Mission gradually becomes more abstract in managerial/governance work (losing its depth, becoming a meme).
Managerial initiatives become targeted to “efficiency” using the ridiculous assumption that you can do the same thing for less money if you just punish people enough. This results in everyone gaming the constraints (eventually including those who came up with the indicators that are now being gamed). In effect, the constraints no longer focus on the Mission, but on various indicators of control (control/power is not Mission-Critical except for managers who no longer think much about The Mission), wealth, and reputation (again, not Mission-critical).
People who are part of the system begin to appropriate its resources for themselves because there are more resources and the efforts to produce efficiency result in the actual Mission-Critical Tasks having less and less meaning or connection with the indicators. They become viewed as part of the exploitable system.
This cannibalization of The Mission begins to produce more and more behavior that is either clearly exploitation or of such poor quality that the people whose lives depend on The Mission increasingly call out the system.
The system responds, not with changes in its operations, but more sophisticated marketing.
The overall result of Phase Two is to make the system more and more brittle (i.e., unable to robustly change in response to crisis). The system response to crisis instead becomes various methods of avoidance, like public relations and lawyers.

Phase Three:

At some point, as the twin forces of increasing resources and dwindling connection between resource use and The Mission become generally obvious, the system will begin to attract Board Members, Managers, and Staff who are willing to use the functional versions of the Dark Triad model to enhance their control and rewards without having to pay any attention to The Mission, if they think they can get away with it. This includes the possibilities of direct exploitation of those who are supposed to benefit from The Mission, as in sexual or financial predation.
It is at this point that I view the system as a zombie. The system has become a gangster syndicate even if no violence is involved, and the vast majority of people in the system aren’t participants in Dark Triad behavior. The zombie system is much harder to break down than the Mission-Critical one ever was. For example, look at city corruption and ask yourself if the kickback amounts go down when the city has a financial decline.
Any stress that effectively threatens the rewards or power that benefit system members will cause its collapse. After all, if you remove money, reputation, and power, there will be nothing left of the system, its Mission having faded into oblivion a long time ago.

These phases are not some script or program. Rather, they are a scaffold to help you grasp why good missions eventually disappear. The reality is that any human organized system (start-up, corporation, public agency, non-profit, soviet style bureaucracy, western public bureaucracy) that values money, reputation, and/or power will follow the contours of this evolution, though the details will change, and the kind of functional Dark Triad tactics that are successful will differ. This does not mean that we can’t do anything to preserve The Mission. It means that we can’t count on system evolution to protect that Mission. (Later, I’ll post on mission-supportive actions.)

See the Wikipedia article on Zugzwang for more insight into the drivers of this kind of malignant evolution.

Next: An Example about Dark Triad Corruption of the Authenticity of The Mission

How the Dark Triad Corrupts Support and Advocacy Systems

The dark triad of Machiavellianism, Psychopathy, and Narcissism arise in complex adaptive systems (and our specimen support and advocacy organizations) as threads of meaning in the evolution of the system. They are not separate paths, but can express themselves varyingly, and perhaps are best seen as a coherent interactive bundle of meaning that shifts in impact with change in the context.

They can be consciously fostered by leadership and governance ideologies, or can operate as system attractors without seeming to have any coherent conscious awareness.

I will use a meme as a placeholder for the meaning of each thread:

Machiavellianism: The meme is “gaslighting”. This thread is the use of strategic deceit to secure advantage for the system.
Psychopathy: The meme is “hyperrational self-interest”. This thread is the ignoring (to the point of obliviousness) of the consequences for people, animals, plants, and artifacts of actions to achieve system advantage.
Narcissism: The meme is “arrogant self-interest”. This thread sees the meaning of the contextual incentives narrowly in terms of the system’s advantage.

As you can see, these threads are deeply connected to one another. While there may be value in parsing the distinctions between them for the diagnosis of personality disorders, it makes more sense here to view them as available interactive heuristics that the support and advocacy organizations (or any complex adaptive system) may use to privilege system advantage over The Mission. This use of these tools is a dramatic step in the corruption of any organization and often entirely unnoticed until its impact is deeply embedded in the dynamic of the system. In effect, the system being considered no longer has a meaningful Mission.

I tend to imagine systems drifting (purposely or otherwise) into the realm of dark triad decision-making as zombies. In fact, the mythos of zombies in the arts and media is vivified (if that is the word) by corruption as its core characteristic. Instead of brains, the single-minded driver of such organizations is system advantage.

This overview needs to be fleshed out (those zombie tropes just keep surfacing) through a specimen example of the path followed in the Dark Triad evolution of the system, and system examples of how the Dark Triad corrodes the ability of a system to authentically pursue its Mission.

Next: Evolving toward the Abyss: How We Blunder into Inauthentic Purpose

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

Part 8: Making FutureStrategy Real-One

The Tacoma Narrows Bridge wildly rocking just before collapse in black and white photo — Rock and Roll is Here to Stay…

Summary of the Current Situation:

Until recently, the strategy of the disability community has been one of incremental improvements in civil rights law, and local initiatives to improve some aspect of daily and community life. This strategy has resulted in substantial policy and legal changes over the course of our lives. But I believe that we are now getting less improvement for our efforts from this strategy than we were, and that the changing conditions of global culture and economy are moving this approach to organizing our community’s future to a declining path.

Some of the changes that make our current community strategy less fruitful:

The global reaction to civil rights initiatives of all kinds has been to slow their impact and undermine the resource commitment needed to make the advances effective.
The global connection of diverse communities of people with disabilities has made the white nonprofit model of disability civil rights advocacy a real barrier to progress.
Advocacy organizations have two missions. One is the purpose for which they were created, and the second is to keep the doors open. There has been a gradual shift to focusing on keeping the doors open by advocacy organization management and boards, though there are many small organizational initiatives to refocus on original purpose. In the same way that politicians have increasingly focused on getting money as their job and modifying their ideologies to match the most effective ways of getting that money from their constituencies, so too has there been a gradual shift in the organizational base of the pursuit of personal autonomy and freedom of choice in our community.
Our current approach envisions the creation of disability freedom as
- Creating models of effective and meaningful policy and law
- Getting these models embedded into policy, practice, and law
- Using the System to implement and enforce these policies and laws.
But the System is far less open to effective implementation and enforcement than it has been since the early years of our civil rights movement (true for all devalued community rights initiatives). The System’s logic for implementation and enforcement is to minimize the impact of successful rights initiatives both in terms of their values and the resources committed to them. This means that our successes have less and less actual impact by themselves. In effect, the imposition of System logic gradually guts our successes.

Our community needs a different strategy to confront these realities.

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(P7): Advocacy and Negotiation

•Students with Disabilities: An Advocate’s Guide

•What disability advocates do

•What is Structured Negotiation & Tips from Lainey Feingold

All advocacy occurs in what might be described as negotiation possibility space. Each advocacy effort is an ongoing “conversation” with a target about the division of some resources.

These resources can be based on a rights schema but usually involve actual negotiation over other kinds of resources, including money, power, target control over infrastructure and decisions, and just about any other trait the target might have that impinges on the access by the person, family, or community being represented.

The target ordinarily views the negotiation as a contest over the division of resources-money, staff time, staff tasks and obligations, and so on. While targets have some commitment to the rights of the person, they view rights as negotiable precisely because rights involve the division of resources in a process of negotiation, not as inalienable rights of the person.

It is important for advocates to remember that the right to autonomy and free choice is not what is being negotiated. It is the resources that are necessary to make autonomy and free choice real. It is easy to forget this fundamental truth in a tense long negotiation over resources. Also, over time, it is easy to develop habits of thought and action that focus on the resources being negotiated and not the autonomy and freedom that is the only justification for the advocacy.

When people negotiate over resources, they will suffer some loss even if the negotiation is viewed as successful. This is the nature of negotiation between parties who each have some power. This is another reason why negotiation should not be viewed as the same as the right to autonomy and freedom.

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(P7): The Map is Never the Territory

A map of native tribal territories from the time before Europeans came to North America. — Tribal Map

The Map is Not the Territory-Alfred Korzybski
The Treachery of Images: On the Limits of Systems Maps
Less Wrong Wiki: The Map is Not the Territory
Mistaking the map for the territory
(Our) Fight Against the Fallacy of Misplaced Concreteness
The Map is Never Neutral
Obliquity

No matter how hard we try to make it so.

No matter how many times we convince ourselves.

No matter how hard we wish.

The map is never the territory.

We use our ability to abstract as a way of making a map of some territory. We use the map to get some insight into, say, the target of our advocacy work. Once we have the insight, we are supposed to put that insight back into the territory. But we often stop before putting it back. Instead, we treat the insight as though it were the truth of the territory. We confuse the useful map for reality, and we make decisions based on our now false sense of reality.

Example:

We can use the base metaphor as our example. I am old enough to remember when I had to use an actual book of maps to find my way around for the many advocacy activities I di at Michigan Protection and Advocacy Service. I might have 3 separate advocacy meetings across six counties in the Thumb of Michigan in a single day. It was common that I was traveling to a place I’d never been to before. I had to plan my trips to assure I had a decent chance of arriving on time. Poring over the maps was necessary most days.

But it was easy to forget that, especially back then, there were no notices of road conditions, accidents, construction schedules. The map route was not the actual process of traveling in the real world. And that is the difference between the map and the territory. If I did conflate them, I could very well get caught up short in my plan by reality, in a dead end, blocked by an accident, by the change of location of the meeting, and so on.

But a lot of map-territory conflation is not so easily detected or so quickly punished. Confusing the map for the territory is a common kind of misinformation that often goes undetected because believing the map to be the territory allows for political and financial control over the distribution of power, reputation, and wealth. There are no obvious consequences to the belief that the map is the territory (at least not in the short run), This failure of thought becomes habitual, and undermines our ability to see and plan with some level of clarity.

Results:

This fallacy arises from the way we use language, and so is unavoidable. We must question our abstractions, not just use them for real world analysis. By not questioning, we make strategic errors in our advocacy, and undermine our ability to create valued outcomes. We use planning and the logic of the “logic model” to organize “things” that don’t exist. We assume that people will change according to the way we manipulate them as abstractions (director, asshole, enemy, ally, etc.)

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Meanwhile, There Are Other Turkeys Dropping from the Sky

Making Choices in An Ocean of Uncertainty (Part 2)

Any genuine surprise triggers the same response from us:

Deny that it is a surprise by continuing to do what you normally do.
Tweak what you normally do to see if that helps.
If you become desperate enough, do something new.
When something new actually helps (what helps, incidentally, will be as novel as the surprise), it will outcompete what you normally do.

You would think that we would learn to skip the early responses and get to creating and using a novel approach, but we don’t. For humans, that seems to be because we have a lot invested in what we normally do (a lot invested in our past), and actually trying to do something as novel as the unexpected surprise warrants, seems to mean we’ll somehow lose our investment.

We are only gradually absorbing the basic and long term impact of the contagion right now; and, we are significantly behind in absorbing that. Our pandemic-specific numbers are always out of date when we see them, and we are still making choices based on obsolete and inaccurate data.

This problem of always being too slow to respond in regard to the impact of the pandemic applies to everything else that has changed in the last five months, and all that hasn’t. Other turkeys are falling from the skies and, as demanding as the virus is in terms of our immediate choices, we need to find a space for those others that are on their way down or being pushed to the edge of the helicopter door almost ready to drop into the complex adaptive system that is our common wicked problem:

The Confluence of Disasters: Just because we have a pandemic doesn’t mean that we somehow get relief from other disasters. Even if our altered behavior and self-isolation reduce some of the impact in those other dangerous events, we still can expect tornadoes, hurricanes, flooding, fires, and a host of more local and personal disasters. But, because of the pandemic, our ability to respond to these will be reduced and disorganized, much like our early responses to the pandemic.
Medical Ableism: Triage systems that explicitly see people with disabilities as disposable and less than human have publically surfaced recently and are being effectively countered through advocacy. But, all of us in the disability community know that this more obvious strain of ableist eugenics bubbles below the surface in many parts of our lives, nowhere more clearly than in medicine. There will be a great deal of implicit and occasionally explicit euthanasia of members of our community in the course of this pandemic because it seems obvious to the healthcare system and insurers that younger, or healthier, or less obviously disabled people deserve life more than we do.
The Financial Psychopathy of Our Social Lives: For the last half-century, there has been a deliberate global effort to convince us that the only important lever for every decision we make, from the most to the least important, is to ask how it affects our wealth, reputation, and power. After all, our worth as a human being is clearly no more than these social and financial indices of our status, right? So embedded is this framework in our ongoing social and cultural communication, that even when our decisions will result in the emotional destruction and death of those we claim to hold dear, we can’t stop ourselves from sacrificing them to gain some meaningless additional increment.
Political Incompetence: The reduction of everything human to wealth, power, and reputation, has the unavoidable consequence of making our political elites and our political system generally incapable of anything more than a short-term pursuit of “victory” in some current short-lived meme war, whatever might be surfacing at this particular moment. This deep lack of governing competence leads to a surprising common assumption under the surface differences in political ideologies. We actually have a political culture that believes that any reality can be entirely changed by merely making an effective political argument, stated over and over again. This is the modern form of the belief in magic; the political meme as a superstitious chant to appease or defeat some always temporary ideological god or demon. Nowhere has this been more obvious than in the governance approach of our political elites to the Covid-19 virus.
Social Reconfiguration: Don’t kid yourself. Our political, social, and financial elites will continue to organize and appropriate more wealth, power, and reputation for themselves. They are simply incapable of thinking about the world in any other way. Opportunities for the rest of us lie outside our explicit and implicit support for that compulsive and unending search of theirs.

We need to look to ourselves, not our elites, for our future.

In the next, and last, part of this series, I’ll try to see some current possibilities for our community that will help start the long and difficult process of “distancing” us from those who see us as worthless and treat us as disposable.

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Pandemic As A Fractal Disaster

Making Choices in an Ocean of Uncertainty (Part 1)

The pandemic resulting from the spread of a novel virus, Covid-19, has pointed out many of the failures of not thinking, planning, or acting with an awareness of large systems and how they dynamically change over time. These failures occur every day in every system of support for people with disabilities, and they occur throughout the larger global complex adaptive system (CAS) that is our world. But we don’t normally see the failures except as small drops of irony. That is, we don’t see the ocean of uncertainty that is the reality of living out our lives in a Complex, Adaptive, System.

I don’t believe that any event in my life (over 7 decades) has shoved our collective face into these realities the way this virus has.

And in less than 3 months.

Much of this “in your face” quality of the pandemic is due to our “connected” world if connected is the right descriptor for experiences that can’t be avoided except in a sensory deprivation chamber, in a deep valley, underground, in Antarctica, with a face mask.

Pandemics always end, but while they are going on, they act like slow motion volcano eruptions, raining down ash on the just and unjust, rich and poor, and every other distinction we make among ourselves about our personal and social worth. Social, financial, and political choices that are usually buried or disguised become obvious. In the disability community, devaluing and destructive choices and matters of life and death become far more obvious and less hidden behind the walls of institutions and programs.

“Everything we do before a pandemic will seem alarmist. Everything we do after a pandemic will seem inadequate. This is the dilemma we face, but it should not stop us from doing what we can to prepare. We need to reach out to everyone with words that inform, but not inflame. We need to encourage everyone to prepare, but not panic.” — Michael O. Leavitt, 2007 From Telliamed Revisited

The dilemma that Leavitt describes is certainly a real one, but it is also a dilemma not just because of the impact of a pandemic, but also because those who have taken on the authority for telling us about an appropriate response have long-standing, deeply political, and financial reasons to pretend that they are in control of the pandemic and that their simple, mechanical (maybe these days data-driven), operational policies will win the day. Messaging to communities that have always believed that every problem can be solved through an operational plan, a bigger version of replacing a leaky faucet through a DIY video, makes it easier to massage away the cramps that result from economic, social, and political failure and those pesky long term consequences when they inevitably occur.

The “message is the massage”, as it were.

Pandemics have lots of explicit characteristics that make them difficult to manage using the mechanical, operational planning, and contingency planning that passes for prevention and safety these days:

The dynamic process of a pandemic emerges from the relationship between people. Each and every contact has the capacity to spread the virus, but there is also no guarantee that the contact will, and in the immediacy of the contact, no way to tell what happened. There is no way to calculate the probability that any single contact will result in the spread, except over group and population averages that are nowhere near granular enough to track the actual dynamics of the pandemic. Your “track” of a pandemic is always well behind the reality because bugs are faster than we are and have a much longer track record of undoing our best plans for safety than we do for stopping them. This means that the evolution of the pandemic is, among other things, Fractal (everywhere at every level) and inherently uncertain.
You can’t negotiate with a virus. You can’t intimidate a virus. A virus is like a tiny Terminator. That means that none of the standard political memes and longstanding manipulation techniques available for everyday use will actually permit social, political, and financial elites to manage pandemics the way they manage everything else of importance to them.
Our society ordinarily uses the concept of Risk Management to deal with failure and disaster. Because the dynamic of a pandemic is a CAS, its actual path of destruction will remain uncertain until the current pandemic is over. Real Uncertainty is very, very different from calculable risk. In an uncertain ocean of possibility, every published Risk is wrong and is being used for some additional purpose besides authentically managing the actual pandemic.
As Italy has discovered in Lombardy, being supremely confident of your individual and community’s economic strength, high health status, and social superiority doesn’t stop the corpses from decomposing in their homes, or the stereotyped social worth calculus of global medicine from throwing whole communities under the train.
So, in the rollup to the pandemic maximum (number of people affected, the peak of the Bell-Shaped Curve), all the numbers you are being told daily are underestimates (obviously). But it seems to me that most of the time people make decisions about their behavior on the numbers with which they are presented. How many people have been diagnosed today, and should I go to the store and buy food, or drop my child off at daycare one more day, or get drunk at the bar with my friends one more time? Our decisions are almost never made using an actual appreciation of the potential impact. Instead, we are conditioned to make choices that don’t match reality by the very efforts to educate us about what and how we should choose.
Although this should be obvious, it isn’t the lethality of Covid-9 that is the greatest threat. Although this virus is somewhere around 20 times as lethal as the annual flu, it doesn’t come close to our ancestral pandemics. The problem is that our healthcare system is designed around the industrial notion of Just-In-Time supply, treatment, and disposition. If everyone who got the virus had the mild version, we would be able to manage the number pretty much no matter how many there were. But 15-20% of those who become ill (some estimates are as high as 40% for risk of complications) need more than basic illness care. We are all in real trouble if that population shows up in the emergency room on the same day. If the critical care system collapses, it won’t just be people with Covid-19 complications who will die. People with other conditions that ordinarily would have gotten competent treatment aren’t going to get it.

This is why the strategy for managing the pandemic is to first contain, then mitigate the results, as in #flattenthecurve. The goal is to avoid completely overwhelming the healthcare system, under the motto, “Flatten the Curve”; it is not an attempt to prevent death, which can’t be done, but to spread it out so that system failure doesn’t dramatically increase the number who die.

#flatten the curve is a genuine strategy. It is a framework for making decisions about the two things we can never control:

The unpredictable future;
The eternal scarcity of resources.

#flattenthecurve creates a space of possibilities where we can build and implement operational plans that are consistent with this strategy. Many such plans are being rolled out now. Because the pandemic is fractal, the operational plans resulting from the strategy have to be fractal as well. At every level, there are things we can do to support the strategy. We don’t necessarily need to wait to be told what to do, as long as what we do in our own lives and with those about whom we care is driven by the constraints of the #flattenthecurve possibility space.

If we avoid the collapse of healthcare, we will not only minimize death in the short term, but we will create a timeframe for the longer term that allows for better choices.

Because, like all strategies, #flattenthecurve isn’t a complete answer to a pandemic (there is no complete answer to a novel pandemic).

If we minimize the total number of people who actually get the virus this time around, we leave open the possibility, in fact, the inevitability, of an annual/multi-year cycle of recurrence, much like the annual flu season. But we also will have time for a genuinely effective vaccine, drugs that interfere with the ability for the virus to enter lung cells and cause damage, improved access to (hopefully) more sophisticated and cheaper ventilator systems, and a much deeper experience of acute and long term clinical care for the fallout from the virus.

If everyone on the planet had gotten the virus in one bell-shaped curve, we might have 140 million dead, and be treating the long term effects for many years. And there would be no resources for the mitigation and management possibilities mentioned above.

A well-chosen strategy doesn’t eliminate the reason for its necessity. Rather, it enables you to manage the current and future states of the original trigger for the common good.

We have lost touch with the idea that we should think about the long term together, instead of simply maximizing our individual gratification in the short term. I hope this pandemic proves to be a tonic for our social foresight about our common threats.

Because, as bad as this virus will be, there are far worse novelties that could arise, and we don’t have any idea which one will surface next.

Working together to build real safety and flexible response must be the lesson we take from this evolving experience that we all share, and we need to use this experience to dramatically improve how we manage our uncertain future.