Part 3 Cont’d: Examples of Epiphanies

Tile showing a man moving from earth into the celestial spheres
Medieval Tile:  Moving from Earth to the Celestial Spheres

In my last post I tried to frame what I brought to the experience of social injustice gained from the communities in which I was raised. But the actual experience of social injustice and the experience of trying to prevent or resist it are far more powerful ways to develop the meaning of social justice and the motivation to pursue it as a calling.

All people who work in social justice go through such epiphanies that expand and deepen their commitment to, and understanding of, a calling to social justice. And every single one of those people has an entirely unique path. Some elements of mine (not special, just illustrative of how pursuing a path brings on epiphanies related to that path):

  • Personal Disability Experience: A core of any social justice calling is your own experience of stigma and oppression. I was well aware before adolescence that my thinking and mood weren’t normal, but because they were predictable I was able to imitate others and do an adequate job of passing. When I became a teenager, my first serious depression occurred along with massive social anxiety, and I understood that I was seriously disabled. At the same time, a friend of mine, who I knew was a person with a developmental disability was carted off to Lapeer Hospital. When I asked why I was told that his family didn’t think he would be able to handle junior and senior high school. I took this to mean that I too could be institutionalized if adults decided I couldn’t handle school emotionally. I hid a great deal in order to avoid institutionalization. I ran into this friend at the Michigan Arc 50th Anniversary  Conference, and he was living in his own apartment and instantly recognized me. I had a notion that he had been crushed by a system of oppression, but he had found a way to live the life he wished. A very good lesson indeed.
  • Murder at a Fiesta: When I was 15 I worked in a Catholic youth group project with migrant family crop workers in northern Bay County. Our job was to support young children (under the age of 6 or with a disability) in schoolwork. One reason was that migrant families had to come up north before school ended and not leave until after school started. Another reason was to keep young kids out of the fields and the sun.At the fiesta in early July to celebrate the end of one kind of crop work, two young men had an argument with several others. One pulled out a revolver and fired it, missing those arguing and hitting a young man in the heart 30 feet away, killing him.
  • Television of Beatings of civil rights protesters: Like many others, I was shocked by the abuse of civil rights protesters  in the mid-60’s. It was visual proof of what civil rights activists had said was the case. This vision of oppression was cemented by the killing of 3 civil rights workers.
  • Military Experience: I witnessed a large amount of racially based discrimination during both my training and combat experiences. I also tried to do something about what I saw, but was barely able to dent it. But, I saw organized efforts by black soldiers to resist that were much more effective.
  • Fred Hampton: A couple of days after I came home from Vietnam (mid-December, 1969), I read an article about the police raid that killed Fred Hampton in Chicago. There was a small black and white picture of his bed, clearly and deeply stained with his blood. I can still remember that picture though the details of the raid have faded.
  • PWD and Family Support Experiences: In the early 70’s I worked with people who had very significant brain injuries from a wide range of causes. Their families had kept them out of state institutions, and there were no supports for either the families or the person with the disability. The most important lesson I learned in this work was that persons with severe disabilities continued to develop and work for their own development largely unsupported by their environment. This was mostly due to our inability to see their actions as attempts to engage with their world and learn about it like the rest of us. I had to learn (as did the families) a deeper way of seeing so that I could support their efforts to become more. There was a real struggle involved in this learning, but it became easier and easier over time. Now I see this drive to have a larger life in everyone.
  • Advocacy experience: There are far too many lessons from my work as  an advocate at Michigan Protection and Advocacy to narrate them here. Perhaps the most important for my current work and my understanding of social justice was the realization over time and through experience that the most important drivers of oppression and devaluing are habits of thought and work, and that most people (just like me) can come to a deeper understanding of the need for and power of self-determination and choice.
  • Seeing the disability rights movement catch fire and grow: Once I understood that everyone in the disability community was struggling to become more, I could see it everywhere. Social networks (most especially including peer groups and peer work) are now taking that struggle out of the realm of the solitary activist and making it more and more a struggle through mutual support and mutual learning.

I am able to see our common work to expand the possibilities of our community far more as a force or a flow now than I could when I was younger. Even as our community faces renewed efforts to eliminate us from the social stage, we have become far more capable of asserting our right to be as we are, and to pursue our personal and community growth as we see fit. The struggle is far from over, but we are far better prepared to embrace it. My epiphanies may have less impact on me as individual events than they did when I was younger. But now they are occurring all the time, expanding and deepening my appreciation of the gift that is the struggle for social justice.

I am going to take a short break from posts about change strategy to finish work on a couple of ideas.

Next Post: The Disconnect in HCBS Advocacy

 

Pt. 3 Continued: More About Epiphanies

Lake of the Clouds at Dawn
Lake of the Clouds at Dawn
(This post kept getting longer and longer, so I decided to break it into 2)

My commitment to social justice as a set of values and a calling grew slowly over the first 3 decades of my life. I think the path I followed would be recognized as similar by many people, and I believe my experience illustrates the characteristics of personal change through epiphanies. Because I know my own path well, I’ll use it to illustrate the value of supporting epiphanies as part of a larger change strategy (bottom-up strategies).

Because epiphanies re-frame meaning for the individual (regardless of how many people share a particular experience),  they always remain individual in their impact. We are used to thinking about the meaning of events as impacting all participants i the same way. Of course, events don’t do this. Each person experiences an event in a way particular to their personal history and current state of being.  However, whatever the individual character of the re-framing, it affects the general system of meaning for the person sometimes for their entire life. It is this long term impact that lends strategic impact to epiphanies, though not at all like top-down victories discussed in earlier posts.

My parents came out of the depression and World War II with a commitment to equality that was typically American. They grew up in a working class neighborhood and my father was the first (and for a long time the only) person in that neighborhood who went to college. When he went to work for Dow in Midland, it was as part of professional upper middle class community and my parents found the ready devaluing of working class people offensive since it painted our entire family as inferior. They taught us that this was immoral and unacceptable.

Because of this personal, family base, Catholic social justice history made sense to me and expanded my idea of who should be able to use freedom and justice to forge their lives. The advent of the civil rights era also educated me to oppression I had not perceived before. But more important than education were the actual experiences I had as a person with a disability and as an ally to oppressed groups.

Next Post: Part 3 Cont’d: Examples of Epiphanies

Systems Thinking, Pt. 3: The Other Side of the Change Coin.

flower blossoming gentiana_asclepiadea
Blossoming

In the last post, I talked about top-down advocacy as an effort by advocates to change the form and content of the struggle for rights. Victories by advocates are subject to continuing  struggle as those who benefit from the status quo try to counter or undermine the victory. This cycle may result in expanded rights in the long run, but it requires a change from the innovation needed to create an advocacy victory to defending victories  won.

Bottom-up advocacy is an animal of another kind. It too produces innovation and can expand our understanding of the importance and potential of expanded freedom, but in specific individuals rather than law, rule, or policy.  This bottom-up advocacy is the experience of epiphany.

An epiphany is an experience that reveals a large scale framework of meaning to a specific person. This new framework of meaning doesn’t alter our past experience, but it can alter the meaning of our past and much beyond the apparent scope of the event that triggers the epiphany. An epiphany is often described as a revelation. It demands the reformulation of what we thought was the case. Epiphanies, small and great  and of various kinds, are a normal part of the human developmental experience. Yet, while advocates use the result of epiphanies to mobilize energy and work for top-down advocacy victories, there is a curious lack of organized effort to produce them (except by psychopaths who lead cults). We don’t have to look too far to understand why.

Politicians (very much like cult leaders) often use their speaking and motivational skills to mobilize people generally to support the politician’s personal interests (an election or a specific legal effort). The experience of campaigning to win an election or change a law can be an epiphany, but the change in the person that occurs is not about the election or the change in law. It is about the sense of expanded possibility that results from the experience. There is no guarantee that an event will dramatically expand the sense of possibility for a person. After all, that change in the sense of possibility is occurring in the heart of a single individual, and depends on the uniqueness of their development and personal experience.

I will talk about actual epiphanies in my next post. For that post, I will try to make a distinction between true and false epiphanies by using examples. The distinction has much to do with whether the epiphany reveals to you the expanded possibility for your life from living through another (a person, a political or religious entity, a book, generally some belief system) or changing how you view your possibilities and those of others whose experience of oppression is like yours.

Next Post: Pt. 3 Continued: Some Examples of Epiphanies

 

Advocate’s Guide to System Thinking, P. 2

Painting of River Rapids in Winter

Rapids in Winter

In my last post on Systems Thinking, I tried to point to the reality that any advocacy problem pops up in a flow of circumstance. We single out the problem from the flow because it attracts our attention. But we often fail to see the connection between the problem we experience and the flow that produced it.

When we do notice the flow as part of the problem, we tend to think that we need a top-down solution to it. Examples of top-down solutions are changes in policy, rules, and law that prohibit what we think of as the circumstances that led to the problem. In fact, this description is the typical definition of “systems advocacy” in our community.

Now we all know that changes in policy, rules, and law don’t stop similar problems from popping up. Rather, these changes give us hooks we can use in our advocacy to challenge a particular example of the problem. Which is to say that the changes make our advocacy easier.

Also, we all know that these successful changes trigger a response from the targets of our advocacy to game the new rules, to find loopholes or workarounds that reduce the need for target change. In turn, we respond by challenging this undermining of rights.

The dance of advocacy, as it were.

This dance is the core dynamic of top-down advocacy. As an advocacy tool, it has its strengths and weaknesses. One aspect of it that is unavoidable is the adversarial framework it entails. It seems that it is through challenge and response that change occurs and it is through gaming that targets challenge our successes. We might hope that the target will learn some basic lesson about rights, and I think that individuals within the target system do learn such lessons, but the dance reinforces the idea that argument or some other method of power use is the only way  or the best way to challenge oppression.

It seems to us that, since oppression was constructed through the use of power, we must use power to overcome oppressive flows. And, it is certainly true that those who use power to dominate and exploit others believe this and don’t give up that power willingly. But success in a struggle of power always leaves a residue of those who will not submit to your victory, and will immediately begin to fight against your victory generally through new methods, often ones we have not seen before.

The dance then runs something like this:

  • We challenge oppression. We do so by using innovation in our offense to  challenge our target.
  • The target responds with a defense of the status quo, largely through the use of the power it has already accumulated and secondarily through the inertia of the current flow.
  • We achieve some measure of victory. Almost immediately, the change roles of advocate and target begin to shift.
  • Now, the target is using offense and innovation to undermine and counter our victory.
  • We, in turn, are using defense to protect the victory that often required some real sacrifice on our part.
  • And so on……

In the larger window of history, I think a case can be made for overall positive change in this long dance, but as the modern civil rights movement has discovered in its half century defense of the Civil Rights Act fo 1964, it ain’t easy and you can’t take any victory  for granted ( this idea that the status quo always has an advantage over change is the weakest assumption of any defense-based strategy). There are important differences between offensive and defensive strategies. Just because we are good at offense doesn’t mean we are good at defense. Mostly in fact, if we are good at one, we are bad at the other.Yet, the dance of advocacy requires both sets of skills.

Next Post: Systems Thinking, Pt. 3: The Other Side of the Change Coin.

 

 

Advocate’s Guide to System Thinking, P. 1

Circular diagram of system modeling techniques

Systems Thinking Diagram

In the ordinary run of advocacy, an Event happens which is a violation of the rights of a person to freedom, choice, or the denial of some possibility in their life. We notice the Event and respond to it with an advocacy strategy designed to counter or reverse it.

But, as Gene Bellinger points out, events don’t just appear out of nowhere. They are the result of complex processes, and if we don’t respect the complexity that produced the event, we will trigger unintended results through our apparently obvious advocacy strategy.

This is the core of the difference between systems thinking and standard approaches to identifying and reacting to problems. But systems thinking is abstract and it isn’t taught to us when we are young enough to easily absorb it.  Instead, we are taught to view processes as objects. So the Event is divorced from the flow that produced it. And so is our response to the Event.

Imagine that you own an old house in the country. You have a “Michigan basement”. Rain tends to flood the basement. Because flooding doesn’t happen all the time, you don’t necessarily feel driven to do something permanent about it, but it is annoying. You have to do something about it.

Some options:

  • You can just wait for the basement to drain on its own
  • You can bail it out with a bucket whenever it occurs
  • You can put in a sump pump
  • You can dig a deep hole in the basement so that the flooding has less impact on most of the basement
  • You can remodel the basement so that it is sealed and no longer floods
  • You can support drought in your community so that flooding happens less often
  • You can put a huge dome over your property so less rain ends up in your yard and your basement
  • You can hire someone to do any or several of these things for you

See how advocacy is like solving any problem? The majority of options in any problem-solving effort are similar regardless of the problem:

  • You can ignore the problem
  • You can try a minimalist solution
  • You can try to prevent repetition
  • You can try to interfere with the process that leads up to the problem so it doesn’t happen to you
  • You can try to alter the entire system that makes this problem possible in the first place

Your choice has consequences aside from the effect of the solution on the problem. It has costs in your time and money, maintenance of the solution, solution failure, unintended consequences, and so on.

A solution is a choice, not just a choice from a menu but a choice embracing all the consequences of that choice whether you know them or not. Like most any problem-solving effort, advocacy is a commitment to a future that is uncertain. It is, in other words, a strategic choice, whether we treat it that way or not.

Let’s remember the definition of a strategy:

A Strategy is a framework for dealing with future uncertainty and scarce resources.

There is no privileged choice in the menu above. There is only the choice that fits your circumstances.  Systems thinking is a way of managing how you assess any advocacy choice and how well it might fit your circumstances.

Next Post: Advocate’s Guide to System Thinking, P. 2

 

 

The Forever Fountain

Terry Gillespie and Jamaican Musicians
Terry Gillespie and Some Jamaican Friends

Let’s take some time to overview the development and evolution of modern music  as an example of a long and very fruitful system development:

  • The invention of radio and recording allowed many separate culturally embedded musical threads to be experienced by musicians and children/teenagers.
  • Musicians became comfortable meshing snippets of different traditions and children/teenagers became comfortable listening to same.
  • Incredibly cheap and universally wide-spread music distribution through radio allowed the emergence of rock and roll and Elvis Presley as a national cultural institution
  • The Beatles took this institution globally
  • The dramatic drop in the cost of creating and producing high-quality music lead to an explosion of, and reintegration of, a boatload of musical styles (second level integration).

Try to think of what could replace this existing worldwide system of musical experience. It would be like trying to replace a community’s primary language.

So… A cultural dynamic of immense scope and power is playing out in your target’s environment. How can you possibly make use of this to impact your target?
Align your change efforts with the natural dynamic of this larger cultural force.

The Forever Fountain: Generative Ecologies

A generative ecology is a network that continues to create novelty over a long period of time in a self-sustaining manner. That’s why I refer to them as “Forever Fountains”. Such an ecology continues to create newness without a director or a controlling force. The entire evolution of life on earth is the most long-standing and productive generative ecology and the one within which all our other Forever Fountains arise.

The popular music ecology is one with which we are all familiar, and it demonstrates the independence of the ecological creation process from changes in technology, musicians, audiences, geography, culture, distribution methods, or anything else that is ordinarily considered important in the production of products, services, supports, events, or whatever.

A generative ecology represents a more or less constantly evolving force in our environment. We can either align our change efforts with that force, or against that force, but we can’t avoid it.

One of the most basic strategic decisions we can make is this one.

At any given time, there are a variety of generative ecologies operating in the change target’s environment. Whether we intend to or not, when we act to change a target, we are aligning and opposing all the relevant generative ecologies that affect the target system (and us as well). Better to decide how we want to integrate those ecologies than to stumble across them as we try to implement our change plan.

One ecology of critical and expanding importance in our change plans is social networking (SN). Because SN is becoming a part of more and more people’s lives across the globe, a SN strategy must be part of most of our change plans. Since the people we affect with our change plan will, in all likelihood, be using SN, we don’t have the option of “excluding” SN from our strategy. It will become part of our strategy whether we like it or not. Again, better to get good at it.

Since SN technology, reach, software, and basic importance in most lives is constantly expanding and changing, we must invest time and energy in understanding and using SN if we expect to competently include it in our change plans.

Next Post: An Advocate’s Guide to System Thinking, Part 1

Creative Commons License
Change Strategy: Making Our Lives Larger by Norm DeLisle is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License

.

Faster

Bird flying so fast, it's wings are blurred

Bird Flying Faster

You are flying a jet fighter in the air enjoying the speed and the view. Suddenly you are attacked by another jet!  You need OODA!

You must make your decisions faster than your target using the OODA loop:

  • Observe
  • Orient
  • Decide
  • Act

Examples:

  • Public Relations war with a large target system
  • Building momentum for change in a community

The OODA loop was developed by a fighter pilot named John Boyd who tried to understand why some pilots always seemed to win their dogfights. He discovered that the good pilots made good decisions faster than the poor pilots. They weren’t faster physically, though. In Boyd’s terms, they cycled through decisions about what to do next faster than the other pilots. They went through the OODA loop faster. This is as true of successful organizations and movements as it is of dogfights.

OBSERVE: Observing the environment of change is more than just perceiving it. It is focused scanning based on the framework that organizes your change initiative. You are not scanning for anything in particular but are trying to note anything that impacts your change effort.

ORIENT: For my purposes a better term would be “interpret”, but OODA Loop rolls off the tongue. We assign meaning to what we scan based on our experience in general, this target in particular, the importance we give to our change effort – in other words, all the meaning we bring to bear on the purpose of our effort.

DECIDE: We make a choice about how we will respond to the meaning we have experienced. This decision is never the result of a careful and patient review of every possibility we might try. We don’t have time for that. It is more like the pattern recognition that drives our behavior when we see that we are about to have an automobile accident. Pattern recognition is developed through experience, successes, and failures, and is a far faster brain process than deliberative conscious decision-making.

ACT: Then, we act to change the dynamic of our advocacy situation. We respond to what we have learned in this cycle of the loop. Then we Observe to see how our action has changed the dynamic. We cycle through OODA again.

The best use of the OODA Loop is to undermine the target’s decision-making process by making your decisions before the target can make theirs. This is referred to as “getting inside” the decision loop of the target. Successfully doing this disrupts target decision-making and dramatically increases anxiety, which further disrupts target decision-making .

My experience with the OODA Loop in advocacy is that people have difficulty accepting the metaphor as valid in the context of advocating for rights. The process of change in disability rights seems to be viewed as linear and deliberative. Part of this is the way that (for example) the civil rights movement flowed out over time. We reflect on that movement as a series of specific marker events, like the Greensboro sit-ins in 1960 or the MLK Mall speech in 1963, minus all the chaos and quick thinking that actually underlies any significant progress in rights.

One of the lessons of the OODA loop is that change dynamics aren’t linear. An example of failing to understand this is the common advocacy approach of filing a complaint and waiting for a response. This is a tactical failure that costs our change efforts energy and impact and reflects a misunderstanding of the effective use of the OODA loop. A better approach is to multiply the ways of questioning the target’s status quo.

In the early 1980’s, ADD was not viewed as a real disability, and arguing for it as a qualifying disability under special education rules was an arduous task. Basically, advocates had to argue that a student with ADD qualified under POHI (Physically or Otherwise Health Impaired), a category used to qualify students who had physical or medical conditions that undermined their ability to benefit from education. Evidence for such qualification was viewed as entirely medical, requiring medical assessments (say neurological or neuropsychological). Because such assessments were not typical education assessments, there was a lot of game playing about whether schools would pay for such assessments, adding further complexity.

Advocates began to use Section 504 instead of special education rules, requiring schools to provide accommodations to individuals with ADD whether the student qualified under special education or not. The Section 504 accommodations strategy had the additional benefits of not allowing the school to use special education funds to pay for the accommodations and much greater simplicity in its use as an advocacy tool. When such an approach was used, districts tended to offer special education far more easily.

Also, disturbing a target through multiple pathways undermines the very common reality that targets get used to a disturbance if you keep using it over and over. They develop automatic ways of responding to that kind of disturbance. If you combine typical disturbances with rare ones, you increase the anxiety in the target about the unknown level of risk they face. Of course, this requires more effort and a more sophisticated response to whatever it is that the target does.

As part of effective use of the OODA Loop, we also need to become more adept at using social media (more in a later post).

We need to use our smallness, flexibility, and speed more effectively.  Instead of bureaucracies having size and implacability as advantages, we need to begin to make those traits disadvantages by enthusiastic use of the OODA Loop.

Next Post: The Forever Fountain

Creative Commons License
Change Strategy: Making Our Lives Larger by Norm DeLisle is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License

Bricolage and Jazz, Oh My!

miles davis, gutarist and drummer

Miles Davis

Bricolage is a French loanword that means the process of improvisation in a human endeavor. The word is derived from the French verb bricoler (“to tinker”), with the English term DIY (“Do-it-yourself”) being the closest equivalent of the contemporary French usage. In both languages, bricolage also denotes any works or products of DIY endeavors.”

One of the myths of modernity is that anything can be accomplished through the mechanical use of some technique. This is reasonably true for complicated systems like building an airplane (though even there, good design requires more than just the steps necessary to build), but it is not true for complex systems such as advocacy in which both advocate and target are evolving during their change relationship. In particular, no matter how well planned a change initiative is, like the proverbial military strategy, it will only last as long as the first response from the target.

To deal with this reality, we have to embrace improvisation. Jazz is improvisation with music, and bricolage is the art of solving problems with whatever happens to be sitting around. You can think of jazz as a collaborative sound art, with bricolage being its craft-like brother from another mother.

In the US, this is often referred to as tinkering and has become a staple of DIY media channels. You have a problem sitting at your feet. Or dumped in your lap. You need to do something about it now with what is immediately available, or you don’t have the time or money to use a prefabricated one.

Tinkering is what we all do when we aren’t happy with the solution we are presented with or forced to use.

  • Personal Modification of the “NEW” software system at work that will “solve all your problems”. This is so common, that it is assumed it will happen when new software is introduced.
  • Continuous Process of Personal Micro Self-Determination Expansion. This is a fancy way of saying that our second by second personal growth/change is more a process of bricolage than it is a procedure. Vygotsky said that we use objects in our environment to mediate our development from one stage of meaning to another. Development as bricolage or tinkering. Probably not jazz.

A change target presents as an opportunity for tinkering. We fiddle with it to understand it and to make more effective change efforts. We also learn from tinkering. There is a whole philosophy of mind called “embodiment” using our ability to tinker and actively frame our “tinkerings” as ways of understanding the world.

Tinker through your interactions with the target. Systems continue to think that they can devise perfect solutions for us (current policy, current practice, status quo), and they go to great lengths to impose those solutions on us, to make us invoke the solutions and live with the limits of the way they were designed. And as advocates we keep twiddling the dials, looking for gaps, trying out change techniques that the designers didn’t think of.

Tinkering is always a valuable thing to do, even when you believe that tinkering will not produce the change you want. Tinkering will teach you about the imposed solution and the system that imposed it, about its strengths and weaknesses, about the things the designers didn’t take into account.

People who must use any solution regularly have been tinkering with it and know a great deal about how it can be subverted. Talk to those people. Work to get them to open up about what they have learned in their quest to make the solution suit their needs.

A Great Book about these issues is The Labyrinths of Information: Challenging the Wisdom of Systems, though it has become much more expensive over the years.

Next Post: Faster

Creative Commons License
Change Strategy: Making Our Lives Larger by Norm DeLisle is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License

Opposites and Complements

contrast of complementary colors, including red-green, purple-yellow, and orange-blue

Opposites and Complements

Over the decades I have been working as an advocate in the disability community, I have been struck by the use we make of opposites:

  • Freedom vs. Protection
  • Inclusion vs. Segregation
  • Support vs. Treatment
  • Choice vs. Best Interest

Of course, we use these opposites tactically, to create a contrast in the mind mostly about the deficits of the default values and actions of the target, and the possibilities of autonomy and self-determination. But we are not thereby using the concepts as absolutes. Rather we are using them more like the Principles of Agile Development, in which the ones on the left of the opposition are valued more than those on the right.

As the original Agile Manifesto said, “That is, while there is value in the items on the right, we value the items on the left more.”

This notion of non-absoluteness is, in the first place, practical. Whatever the immediate use of the contrast in our current change advocacy, there is a huge world beyond us that includes a continuum of variation on those so-called opposites which our immediate advocacy can’t alter.

This notion of opposites also provides an arrow of direction to our advocacy. We move from the right to the left in our change efforts. The opposites provide a guide for our advocacy, a way of judging what exists now (right this moment) and what might exist if we can orchestrate change.

Finally, the opposition (turned into a frame of the actual process of change from right to left) reminds us of where we came from, as well as where we are going, like constantly looking at the scenery on a canoe trip on a river.

The Age of Aquarius has also brought a group of suggestions as to how to frame the relationship of A vs. B that are OK but don’t really constitute a solution.

Choosing “and/or” or “both/and” instead of “vs.” seems to me to create another kind of opposition rather than truly eliminating the implied required choice in vs.

The best framework for thinking about these issues in advocacy that I have found is the ingenious ideas of Scott Kelso and David Engstrom called “The Complementary Nature”. They view the so-called contraries as related in a dynamic process, like our change efforts with a target. Sometimes the complements (opposites) are truly opposed, sometimes they reinforce one another and sometimes they have a complicated mesh of support and opposition very much like advocacy with a target.

During my time at MPAS, I came up with an idea I called “bounded collaboration”. All this meant was that there was a boundary in my advocacy with a target within which I would behave collaboratively. If the actions of the target went beyond the boundary, I would behave adversarially.  I used the idea as a meta advocacy technique to get the target to think more about their choices.

I suspect that thinking about advocacy for change in a target as a dynamic process where we too interact and change would produce other useful ideas to make our advocacy more productive.

For a much shorter if more technical discussion of “The Complementary Nature”, see  COORDINATION DYNAMICS OF THE COMPLEMENTARY NATURE

Next Post: Bricolage and Jazz

 

Review: Rights Come to Mind

Cover of the Book Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness, which includes an image of the ConnectomeCover of the Book, Rights Come to Mind

I am postponing the post I had planned for today because of the publication of a powerful work that I have been personally  waiting for since 1971. The book is a rights-based, medical community narrative and argument to view persons with severe brain injury and alterations of consciousness and communication as human beings. It includes a single very detailed story of recovery that is used to illustrate the revelations of neuroscientific research into such injuries, with narratives of 40 other persons interwoven throughout the book. “Rights”makes an ADA-based argument that persons with altered consciousness because of brain injury must receive rehabilitation (both physical and technological) to restore consciousness and useful methods of communication with family, friends, and their community.

This might seem obvious to people in the disability rights movement, but there has been no more devalued group of people over the course of my adult life than people with consciousness-related brain injury. One need only watch the apparently annual rant by one of the doctors in “Scrubs” (a TV medical comedy!) about how their talents, training and personal value were being wasted treating people with dementia to grasp the ease and depth of the devaluing that occurs.

In the early 70’s, I worked at a small medical clinic that supported families with members who had severe brain injury due to many different causes. While most of the patients were children, there were a number who were older and who had disabilities related to consciousness and communciation (i.e., say from a motorcycle accident). While the support that the clinic gave to these people was not as sophisticated as is currently available, a number of these indiviudals recovered consciousness during the time I knew them. Their reports about what the coma was like covered a variety of experiences from dream-like to being aware of what was going on around the bed, but unable to respond. These experiences taught me that my ableist model of their subjective experience was not accurate and that surface judgements of capability devalued and so eliminated the possibilities for persons who were in comas.

However, my deep epiphaney in regard to people with brain injury, my understanding of the incredible superficiality that pervades our judgement of people with severe disabilities, came when the clinic’s OT went to evalute a 17 year old woman who had suffered a 20 minute cardiac arrest during an appendectomy. She had extensive brain stem injury from this event, and had all the hallmarks of flexion and contracture that results.

This was a few years before the clinical definition of persistent vegetative state became a generally used  label for people with the kind of injury to consciousness/communication that this woman had. In the simultaneously empty and obscure medical venacular of the time, her diagnosis was “akinetic mutism”. This means she couldn’t move and she couldn’t talk.

The parents of the young woman were there to observe and participate in the evaluation. Although they understaood what the medical team had declared as her current and continuing state until she died, they had noted a difference in the way she responded to males and females when they came into the room. They couldn’t describe this difference, and their perceptions of their daughter cognition were dismissed as unimportant wishful thinking.

The OT printed “Blink your right eye” on a card and held it up some inches from her face. She blinked her right eye. Then the OT printed “Blink your left eye” in front of her face, and she blinked her left eye.Thus, at least in my mind, the edifice of social judgement and pity/contempt for people with severe disabilities crumbled for me for the rest of my life, though my understanding of the scope of ableism has continued to expand to this day.

Some quotes from “Rights Come to Mind“:

Families face a pervasive nihilism with practitioners assuming a static notion of brain injury. Despite stunning scientific evidence to the contrary, the prevailing view in the clinic is that all brain injuries are immutable. From this perspective, it is preordained that the injured brain cannot recover and that the humane course is to pursue palliative care, to let nature take its course.

More worrisome have been reports of families urged to turn their loved ones into organ donors before their prognosis is clear.

One key barrier is health care financing and how we pay for rehabilitation.

(T)o date, these patients have been seen as invariably hopeless or worse, outside the human scope of such legislation as the status quo attests. They remain sociologically – if not legally – outside the regulatory protection of the ADA. The neglect and disregard continues, making the sad point that before this population is deemed worthy of disability rights, society needs to acknowledge even more fundamental rights of citizenship.

Although there is a very long way to go in securing the rights of persons with severe injuries of consciousness and communication, this book is the first genuinely public description of what has been developing in the research literature for many years. I am glad that I lived long enough to see this first step taken, and I hope some of you who read this will avail yourself of this remarkable literary experience.