The Basic Pattern of Disability Rights Advocacy

There are as many ways to advocate for rights as there are systems, contexts that are oppressive, and creative advocates to invent disruptive engagement with those oppressors. Understanding advocacy as a tactical and operational tool of social justice transformation requires experience and practical knowledge of the concrete realities of the System Of Focus (SOF). To use advocacy to extend the impact of social justice transformation, we need to also extend our understanding of advocacy as a scaffold for making our Strategy facilitate that transformation.

Virtually all approaches to first order advocacy follow this abstract script:

  • Disrupt the ordinary way of business of the System of Focus (SOF) by challenging some part of its typical behavior or some relationship it has with the outside world.
  • Threaten to cause a bigger and less controlled change in the SOF if the advocacy demands aren’t met.
  • The SOF chooses to make a smaller adaptation to avoid a bigger, uncontrolled one.

Active advocacy is (thus) a negotiation process, no matter how the process proceeds. But, while advocates are focused on an individual or community outcome, the SOF is focused on the externally forced (re)distribution of resources that they believe they have the right to control as they wish.

This standard pattern of rights advocacy is reimagining the distribution of the tools of life-it is a political struggle. This is as true of a struggle over an Individual Education Program, as it is over a presidential campaign.

But, as an advocate, it is important to remember that this pattern is not just a negotiation over the distribution of resources. That might be true for the SOF, but it isn’t for the person or community whose life possibilities could be expanded by successful advocacy. Buying in to the SOF view of the purpose in the negotiation, is a slippery slope toward the financialization and politicization of advocacy as a social justice tool. It turns social justice advocacy into a  zombie.

Before going into the more sophisticated advocacy patterns available to disability advocates in our 21st century future, it is important to ground ourselves more deeply in the underlying dynamic reality of First Order Advocacy (FOA).

Next Post: What the SOF Is and How We Engage It

Expanding Disability Rights Through Advocacy

In the last half-century, the disability community has gone from a fragmented, cure-focused, disconnected aggregation of individuals isolated in their families or in institutions to an identity-aware, active, present, and organized advocacy movement.

The kind of advocacy that led to this blossoming of our community can be thought of as driven by the same model that black civil rights, feminism, and other identity-based rights movements have used:

    • The passage of legislation that mandates certain rights.
    • The development of procedures to define rights and due process when those rights are violated.
    • The use of legislative solutions to the trade-offs and detailed reification of those rights.

Essentially, rights, in this model, are only those which can be legislated and bureaucratized. This process of rights expansion is driven by presence, protest, policy proposals.

The successes of our common effort are real, but not complete. Both the larger world and the requirements of future success with advocacy have changed and will continue to change. The ongoing resistance to our advocacy over the last half-century has gradually muted our impact. We must face up to these realities if we expect to further our project of social justice and personal empowerment.

The core of a new approach to advocacy for our community requires an understanding of the advocacy environment as a Complex Adaptive System (CAS) , and not as a machine that we change as we would a car engine.
Seeing the constraints on our community as processes in a CAS is not a new technique of advocacy, though it does offer us a new way to view how we change The System.

There is a basic pattern that we have used to pursue rights, and in my next post, I’ll go over that pattern as a prelude to a version for advocacy in a complex adaptive system.

A Strategic Approach to Advocacy Success

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

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

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

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

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

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

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

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

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

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

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

(P8): 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.

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(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): The System as Tool

An absurdly complex swiss army knife with scores of tools.
Swiss Army Godzilla

We mostly view government (The System) as a repository of solutions to problems we can’t solve ourselves. I don’t know if this was ever true, but it certainly isn’t true now, especially in the lives of our community of people with disabilities. The capacity of government to take responsibility for solving any problem is undermined by pressure to reduce expenditures, frank corruption, incompetence, and a virtually universal refusal to ever take responsibility for anything that goes wrong. This “Not Me” attitude occurs both in disaster, and more recently, as a general marketing framework. “Don’t expect much from us”. Government’s response is randomly useful and randomly destructive,.

So, when we act as though the government has as its purpose the solving of our life problems, and we suffer disappointment when it doesn’t, we are perpetuating a species of victimhood for ourselves from which we can’t exit. We can only feel more deeply victimized and helpless.

We need to stop looking at The System as a Solution to our problems in living as people with disabilities. It will never be that. At the same time, there is an enormous amount of resources tied up (embedded) in The System, even if an ever-increasing amount of those resources are used in monitoring, administration, and political purposes that have nothing to do with support. The mission of support, the supposed purpose, gradually becomes more and more to deny support, investing in administrative complexity to make support increasingly difficult to access. Everything about The System is double-edged, and we can’t ever be sure what edge we will get when we try to use it the way it is supposed to work.

While we can’t depend on The System, we can’t simply ignore it either. We must make use of The System or forgo the resources. Frankly, we currently have no way of taking the resources in The System and making them directly available, nor are we likely to anytime soon.

As we think they were intended.

To deal with this reality, we must adopt a dual approach that will seem unnatural:

  • We must get better at extracting support from The System as it is, not as we wish it would be. This will require us to be far more strategic in our interactions with the System, and we will have to understand that The System will continue to deteriorate even as our advocacy creates some local real improvements in how it works. Local improvement, but System-wide slow breakdown is the trend for the foreseeable future.
  • In addition to extracting support from The System, we will need to disassociate resources from The System that we can use for building an alternative that I have called Our System. For example, we might advocate to move resources from parts of The System that are moribund or useless to ones where there is a better chance of being able to use them to create Our System.

This is an abstract overview of how the three motifs must be woven to expand our control over our lives and our freedom of choice.

Next Time: Using the System as a Tool

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(P8): The Three Motifs

A stable three cord knot made of fiber light colored rope.
Weaving Motifs

FutureStrategy has three motifs, like the three cords in the image, but functioning as flows rather than things. The three flows arise out of the model from the last slide.

Using The System as a Tool

Our Community will continue to depend on The System for a long time, even as we build an alternative. The sheer amount of social resources embedded in The System makes it impossible to seriously consider going “off the grid”. But we can begin to reduce our dependence on The System by viewing it as a Tool that we use to support our personal and social lives rather than as The Solution, a perspective that makes us instant victims when The System fails to support us.

Advocating with The System for Valued Change

We can advocate with The System to trigger valued change, as I described earlier in this series. Advocacy requires us to perturb The System (whatever it is), making it choose between embracing the valued change that drives our advocacy or be forced to uncontrollably change by the pressure from The System’s environment. Our goal in expanding our advocacy is to perturb more deeply and comprehensively.

Building Our Systems of Support

We can build Our System to make up for the failure of The System, as we do now when we have no choice. We can build Our System as a local, stable, small-scale alternative to The System, so that between The System and Our System, we have better dynamic supports that allow us to explore life’s possibility and expand the scope of our free choice.

Although I outlined the three motifs as separate, it doesn’t take much effort to realize that they are intertwined as we play them out in our lives and communities. At the same time, each of the motifs requires its own ways and means to become effective. For example, if we were to take our success in building Our System and turn it over to The System, our work would soon be transformed into just another version of The System.

This reality doesn’t mean that we don’t look to improve our success by observing how each of the motifs is evolving, asking ourselves how success in one can support success in the others.

I’ve included the opensource narrative creation tool Twine because weaving multiple strategies is more like creating a complex story than it is like building a ”Strategic Plan”.

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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

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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