Meanwhile, There Are Other Turkeys Dropping from the Sky

Poster saying As God is My Witness,I thought Turkeys Could Fly-Arthur Carlson

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 Our pandemic-specific numbers are always out of date when we see them, and we are still making choices based on obsolete and inaccurate data.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

A clipart image of a woman running with her hair on fire, tormented by various demands that she can't respond to effectively. They include email, Re:Re:Re:, 90, 17,Hey! Nobody told me that, How was I supposed to know that, Who has it?, and a polycom talking nonsense.

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.

(P5): Local Community Use of the Recovery Model for CAS Change

A diagram of a Community-Based Recovery Model. The core of the diagram is a red oval labeled Individuals and Families; The Connected  Yellow Ovals include Home: Permanent Housing; Health: Recovery, Health, and Wellness;  Purpose: Employment and Education; and Community: Social Inclusion.

Although Recovery is a model first developed for people with lived experience of mental illness, and although the word Recovery seems to point to the idea of cure as a solution to disability, as the model has developed, it is an excellent framework for small mutual support social groups to use person-centered planning to forge individual paths to personal autonomy and freedom of choice.

Recovery allows a person with the support of others who understand their lived experience of disability to manage those parts of life that interfere with that individual path. It doesn’t matter whether the interference is from a so-called “symptom” or a so-called “social determinant”. The process of finding a way to reduce or eliminate the constraint is the same.

The resources in the slide are only the tip of the iceberg in making use of the Recovery Model. The Guiding Principles of Recovery also clearly show the connection to the driving and organizing power of Person-Centered Planning:

Recovery:

  • emerges from hope
  • is person-driven
  • occurs via many pathways
  • is holistic
  • is supported by peers and allies
  • is supported through relationship and social networks
  • is culturally based and influenced
  • is supported by addressing trauma
  • involves individual, family, and community strengths and responsibility
  • is based on respect

This model is also useful for thinking about how to organize locally to produce a change in the CAS that enable or destabilize our personal and group advocacy efforts. The Recovery model should be a core of organizing locally regardless of the kind of lived experience that triggers an embrace of this model. It is also a key to building organized change through the collaboration of different disability communities (including the Substance Use Disorder community). With a common person-centered model of how we achieve together, we can be more effective advocates.

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(P4): Record-Keeping

An ancient written text not in English

Record-keeping is the great unsung heuristic of effective advocates. It is unsung because it seems tedious and time-consuming and seldom drives change by itself.

In the bad old days, record-keeping was incredibly tedious. For example, imagine what it took to transcribe a recording of a meeting before digital frameworks were available to support such tasks.

For example:

  • Using a live transcribe app on a phone to record a meeting and generate a correctable text.
  • Spoken note recording.
  • Composite resource documents so that related information can be reviewed in one place or document by a simple email invitation.
  • Notification when emails are read and by who.
  • Easy encryption.
  • Easy sharing of info and events in an advocacy network through apps like Slack.
  • Social Media as an adjunct to advocacy work.

It is also far easier to collaborate and organize around advocacy information, initiatives, and events through separate personal, support groups, targets, and public venues.

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(P5): Disruptive Innovation

Large ADAPT protest at the National Capitol with many participants with disabilities

Disruptive Innovation is a framework for replacing an existing part of a complex adaptive system with one that is:

  • Much less expensive or resource demanding
  • Easier to access and use
  • Easier to support, repair, and replace
  • Flexible in opening up adjacent possibilities for change

Imagine an MRI machine that only cost $50,000, instead of millions, and that could do a scan for $10.

Such disruption is not limited to products or technologies. It is a very useful concept for reimagining community living, social support, collaboration, mutual support, and other social “technologies” that are important to our disability community.

But disruptive innovation is not easy to do. You will need an understanding of where disruptive innovation starts and how it evolves.  Evolution is the right framework for thinking about successful disruption.

As an example of both the possibilities and difficulties of disruption, imagine the ways that real trust between people makes everything they do more effective and less expensive in both time and resources. Then imagine how easy it is to lose trust in our current context. What kind of context would support trust and make its continuation and expansion more resilient?

(P5): Mutual Support

Stylized diagram of people of different colors in huddle as metaphor of collaboration.
Huddle for Support

Mutual Support is the way we operationalize the values of personalism. It is the way we get the values of personalism to emerge in our communities. As opportunities arise, we support one another. We also organize ongoing mutual support around longer-term supports for specific targets (say various kinds of recovery support, food support, caregiving support). We organize local projects to build an alternate infrastructure and experiment with ways of building local alternatives to the dominant system structure.

Most of all, we use mutual support to get better at, and more comfortable with,  rapid change, and rapid response to change.

Mutual support isn’t about building permanent alternatives to replace the dominant system infrastructure. It is about getting better at short term support creation, and being more circumspect about committing resources to permanent solutions. The reason for this approach is because the dominant system will always be changing as it gradually and/or suddenly degrades.

Mutual Support builds values, and organizations that emerge from such support must be viewed as temporary. If we try to make them permanent, we will build in the flaws of the current infrastructure at the same time. Any time you integrate your new vision of support into the dominant CAS, the system imposes its logic and values on your novelty. Your change becomes part of, and subject to, the aging of the CAS.

(P5): Personalism

A woodcut of The Dorothy Day House of Hospitality complete with ramp.
Notice the Ramp in the Woodcut

As a value system, Personalism has arisen repeatedly over the millennia (probably the last 6,000 years at any rate) because large scale social organizations like states, and now corporations, eventually impose personal belittlement as an expected standard of behavior in social systems. Belittlement here is a general term for both social level stereotyping and devaluing and personal interactions that stereotype and devalue (like bullying).

Personalism, whether religiously based or not, focuses on the enlargement of life and its possibilities for each individual, and the social network of which they are a part. It is an excellent guide to what we might do right now for ourselves and those in our immediate vicinity.

You can see personalist values in the practices of disability accommodation, inclusion, and support methods like person-centered planning. But the values of personalism can and should affect every social interaction.

Personalism is viewed by the larger world as impossible, mostly because it can’t be created by laws, effectively funded by a government, or function as a profit center. Belittlement also can’t be eliminated by fiat, by punishment, or by shaming(?). The values of personalism can only emerge from a community that practices personalist social interaction.

Personalism is often embraced by people after an epiphany in which they see its value in their own and others lives. While such an epiphany can alter personal social behavior for a lifetime, this change doesn’t automatically translate into a common reduction or elimination of belittlement in larger social systems. These larger systems have power dynamics which reproduce belittlement at high frequency all the time.

Put bluntly, the values of large scale social systems and many local social systems are psychopathic and view humaneness only as an unfortunate necessity of power to prevent revolt and nothing more. But in our response to the degradation of human support the disability community is now facing, regardless of how we expand our resistance, the creation of a community that supports the enlargement of life and personal possibility has to be at the core of our counterstroke.

I think we should view personalism as our common experimental framework for building the basis of our future. It provides us with a framework of values for judging the long term usefulness of our various efforts to build community.

(P4): Preparing the Counterstroke

A picture of the Trinity Atomic Explosion, very early after initiation of the explosion when it was still a complex bubble.

Success in preparing a counterstroke requires a great deal:

  • Giving up the notion that you can restore what was.
  • The carving out of some space that is hidden to create the counterstroke. Why it is “hidden” doesn’t matter. It can be (and often is) that the insurgent simply doesn’t believe that you are capable of preparing a counterstroke.
  • Creating a genuinely new and disruptive complex system for your counterstroke. As an ongoing real-world example, women are on the ascendance everywhere in the world, regardless of political disagreements across communities of women, because they are coherently creating something new together. Men, on the other hand, are on the decline, because they are trying to defend what they have. All else being equal, creating something new will outlast and eventually replace the current reality, no matter how much effort, even successful effort, is put into the defense.
  • Never allowing fear to trigger a premature counterstroke.
  • Waiting for the maximum feasible disintegration of the insurgent before launching the counterstroke.

Note how foundational patience is in the success of all this.

(P4): Phases in a Strategic Defense

A diagram of phase states and changes. For illustrative purposes only.

  • You have to know what you stand for, not just what you stand against.
    Laurie Halse Anderson
  • The worst thing that can happen to a good cause is, not to be skillfully attacked, but to be ineptly defended.
    Frédéric Bastiat
  • The best defense against sarcasm is to take it literally.
    Vijay Fafat

Because the Strategic Defense is only “chosen” with partial knowledge of its implications, the choice can always be thought of as involving great uncertainty. It is usually only “chosen” because there is no real choice.

There are three phases in a successful Strategic Defense:

1. Blunting the surprise, the invasion, overwhelming force, or whatever constitutes the initial assault.

2. Preparing the counterstroke.

3. Delivering the counterstroke.