Month: May 2016

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

 

Cover 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.

 

When an advocacy organization deals with the same target over and over, the relationship between the target and the advocacy organization gradually becomes a continuing context for change initiatives and it also becomes an inherent part of every change strategy.

The relationship can vary from simple agreement on where and when to have negotiation meetings to longstanding relationships that include deeper knowledge by both parties of the other, or even friendships that extend outside the advocacy initiative.

The traditional view of the advocacy relationship in the abstract is that the advocate adopts a position on an issue and the target counters that position with one of its own. The advantage of such an approach is that it is straightforward, and the position serves as the focal point for all advocacy effort. The disadvantage is that the position is likely to be a very abstract frame for what would actually have to occur to make the change real. We give up effectiveness in actually creating a solution for clarity of principle.

Advocacy and Engagement can develop a very complex relationship over time. Adversarial relationships often create collaboration and engagement on solutions. Remember that “War makes for strange bedfellows”. Traditional advocacy is usually seen as a purely adversarial process in which we defend a position, as in a court battle over legal and substantive rights. But even in court, some level of cooperation is required to hold the adversarial contest, follow the rules for speaking and arguing, etc. I noticed in my time as an advocate at MPAS, that we often used a strategy I called “bounded collaboration”. Basically, we would cooperate until some line was crossed. At that point we became adversaries.

Traditional advocacy is usually seen as a purely adversarial process in which we defend a position, as in a court battle over legal and substantive rights. But even in court, some level of cooperation is required to hold the adversarial contest, follow the rules for speaking and arguing, etc. I noticed in my time as an advocate at MPAS, that we often used a strategy I called “bounded collaboration”. Basically, we would cooperate until some line was crossed. At that point we became adversaries.

More recently, I have found that simply taking a position as an advocate has become less and less fruitful over the years, and that engagement of the other parties in the stakeholder environment is necessary to move advocacy along. Most policy implementation problems these days, especially in health and community supports, are very complex and contain structural problems that must be resolved before positional advocacy can work at all.  As an example:

Two models of creating affordable and accessible housing have developed (with many variations):

Segregated Housing: All housing units are part of a single building project with a focus on a single community (say, vets, seniors, poor, adults with disabilities), with supports provided in the building by a single provider.

Distributed Housing: Each housing unit is developed and built in the larger community. Supports are provided to the individual or family in that individual unit by a provider hired by the individual or family.

There are specific economic and control reasons why The System (and its subparts) has wanted to create and maintain segregated models of housing:

• In the creation of plans for housing projects, it is much easier to propose a single site, with infrastructure, a single design of individual units, tax credit use, and the scaling of supports through a single provider contract.
• There are economies of scale with a single site for maintenance and repair of individual units and the project as a whole.
• It is much easier to hide and manage the unethical use of project funds in a single site because the number of stakeholders that must be managed to hide unethical use is smaller.
• It is also easier to enforce control over tenants and sanction them for violations, both of formal and informal rules, making it easier to serve the interests of the managers at the expense of the tenants.
• Scapegoating and bullying individual tenants into conformity is much more effective when you tie supports and loss of lease together. Failure to conform can result in loss of housing, a powerful threat.

There are also social/emotional reasons that perpetuate segregated housing and segregated community models:

• Especially in the early phases of recovery, most people prefer to spend their social time with persons who are experiencing struggles similar to their own. The first goal in recovery is usually feeling safe.
• The preservation of the feeling of safety, basically relief from pain whether physical or social, becomes self-perpetuating in the same way that any relief from any pain does. Not ever leaving one’s comfort zone becomes a permanent way of living.
  One accepts the abusive control that project managers exert as the price for feeling safe. One’s life becomes permanently constrained.

So, segregated housing supports segregated communities and vice versa.

One way (one of a huge number of variations) of “complementing” these two opposite models would be to always separate supports from residence, so that individual tenants can’t lose tenancy for choosing a different provider of supports or no provider of supports. Another would be to put limits on the length of time a person can remain in segregated projects, or deliberately create a framework of supports for all transitions. A third would be to make a transition from segregated to distributed housing a standard part of planning supports and skill building from the first day of tenancy in a segregated project. All of these would alter the dynamic of the Segregated Housing vs. Distributed Housing policy issue and the positions associated with these alternatives.

But to effectively change the complexity of such policy alternatives requires a much deeper understanding of the experience of meaning behind the target position. This understanding is only possible through engagement. It carries the risk, as all understanding of others does, that we will appreciate why the target takes a particular position, and this empathy might undermine our commitment to the principles that led to our advocacy position in the first place.

At the end of the day, though, we can’t make a false choice between commitment to our principles and our positions and the deepening of our understanding of our target of change. Empathy is not agreement or sympathy. It is the understanding that comes from seeing the world as our target sees it.

Next Post: Opposites and Complements

 

Maximum Speed Limits in the USA (2000)

Many advocates have noted that forcing a target system to follow the rules that it has created for itself can be a useful tool of negotiation. This is because many of the rules were set up to be used to defend the target against intrusion or critique, and were never intended to be used on a regular basis. When the target is forced to use its own rules without any choice on its part, the system begins to degrade not only in terms of its own stated purpose but also in terms of those things the target values above all. Such loss of control can make a target more creative about how it solves an advocacy disturbance. In fact, the basic advocacy technique of threatening what the target values unless accommodation to the advocacy demand occurs is a simple example of the principle.

I had a special education advocacy experience in the early 80’s that taught me a lot about what could be done by enforcing the rules. I fell into the solution accidentally and as a result of ideas from the families I was representing. I thought I would share it to illustrate how a target deals with a real threat to its inner workings.

I got a call requesting support for special education services dispute from a person who worked in a large special education system and had a daughter receiving services in a different county from where the parent worked. The family had moved to a different county because of the inadequate nature of the specific kind of services the daughter needed. But changes in the program had degraded the supports for the daughter and there was a real danger to her and the other students in the same classroom because of those changes.

The classroom had 6 students with very significant disabilities on the autism spectrum and some other disabilities that made the daily quality of care a huge concern. For example, one student had epilepsy that caused cardiac arrest and required immediate CPR when it occurred (rarely, but possible). Another student had such an inadequate appetite that, absent a well-structured eating program that was rigidly enforced, he would rapidly lose weight, effectively starving despite the availability of food.

Prior to the changes in the program, the class had a teacher deeply committed to students with autism, both by temperament and extensive experience, and two aides who had worked with all these children since they began receiving special educations supports in the local system. Because of the cyclical boom and bust of educational funding in Michigan in the 80’s, there had been a recent spate of layoffs, including the teacher and the two aides in this classroom. They were replaced by a teacher of students with emotional impairments, who had never worked with any student with these levels of disability and medical complications, and two secretaries with no experience as aides in a special education classroom. All 3 had bumped into the positions through the procedures of the local labor contract.

I tried simply asking for a restoration of the staff and got nowhere because the building program staff had no control over the implementation of the labor contract. Although the local building was well aware of the danger to the students, they couldn’t see how they could change the situation as it had evolved.

I met with all the families of students in the classroom, and we settled on a strategy of forcing the system to obey its own rules. I asked each family to create a schedule of what they thought would be an ideal program of supports for their son or daughter in 10-minute increments. They were to include breaks, meals, everything that they thought should be done during the day, and they should also list the right of the parent to drop into the classroom at any time during the school day to monitor whether the current activity was the one listed in the schedule for that time.

Each family would then ask for a new IEPC in writing. When they attended the IEPC, they were to hand the written schedule to the staff and say this was the only supports framework they would accept, and if the school wouldn’t accept it, the family would request a fair hearing. Since the schedule was entirely unacceptable to the school, the assumption was that they would refuse to implement the schedule, and they would hold a hearing for each family, a total of 6 hearings.

I went to the principal of the building, who had been sympathetic to the concerns of the families and frustrated with the lack of responsiveness by the system. I explained the strategy we were going to use and asked him to pass on that strategy to the ISD. I implied that if some solution wasn’t found, all 6 families would be going to their legislators and the press, pointing to the physical and medical danger to their sons and daughters. I also said I thought I could win one or two of the hearings and that the staff would have to put up with the visits to the classroom even if I lost 5 of the hearings. I understood that the current staff had no more control over the labor contract than the local school did. We hoped that all the uncertainty for the district that would result from our strategy would be enough to help the district put some thought into a solution that everyone could live with.

I understood that the current staff had no more control over the labor contract than the local school did. We hoped that all the uncertainty for the district that would result from our strategy would be enough to help the district put some thought into a solution that everyone could live with.

The district did come up with an equitable solution. The EI teacher got medical leave, and secretarial jobs were found for the two aides who had bumped into the class. The original teacher and aides were hired on contract for the rest of the current year and were rehired as full-time staff the following year.

I was astounded and surprised by this solution. I thought that I would be spending months in hearings, followed by continuing struggle and dispute, and the likelihood that at least some of the families would be forced to pull their children out of the classroom or forced to move to another county. The district solution was a very elegant one, that required no additional expense, no public display of the issues, no problems for either the current staff or the former staff.

Though I never asked, my suspicion was that the solution was created through internal negotiation so that the target system (the county special education program) could maintain the existing set of political, financial, social, and educational rules while nonetheless taking care of the problems that the families had raised.

I learned that it is possible to build win-win solutions even when the underlying system reproduction processes are the ones triggering the advocacy effort, and that it is possible for advocates and targets to collaborate, or in this case collude, when the advocacy engages the whole system and does not just argue a legal or a rights-based position.

Next Post: Target Engagement as the Context of Change

 

Intersectionality is a term used by academic communities to talk about and understand how different identities interact in a specific person with their outside world.  Of course, we all have to personally manage our different identities and their intersection by ourselves every second of every day in the real world. This includes our work within organizations and our advocacy. Advocate is as much an identity as family background or sexual orientation.

Identities are roles. When we advocate on behalf of an individual we interact with public roles as they are performed for the target system of our advocacy. Although we commonly treat the roles (and judge them) as though they were real people, they are not. Judging a person by how they behave in a role is an error even if the behavior is bad.

Any target contains roles that work as an interface with the outside and other roles as inside reproducers of the target system. Both sets of roles are performances, but the interface is constituted of public performances and the core roles as facilitators of the system’s reproduction.

The design (whether conscious or not) of any target system tries to keep the internal reproductive roles separate from and insulated by using the public roles as the mode of communication with the outside world. The manager role (including using authority) is first and foremost designed to protect the reproduction of the target, and a core of the manager role is to only interface with the outside world through the system’s public roles, making it very difficult for advocates to expose the processes of system reproduction to public scrutiny and change. This is also the practice that makes managers gradually lose contact with the core purpose of  the system of which they are a part.

Even those who have the responsibility for reproductive roles are insulated from other internal roles by training and experience, reporting systems, politics, and all the other social paraphernalia of system life. We live in a time when these internal roles have become increasingly complex and specialized, and the reality that it is impossible to keep all the specialized roles needed for reproduction inside the target system requires outside contractors from highly specialized systems. The work of these contractors is also insulated from the rest of the internal roles through the specification of the contractual outcomes, and boilerplate that creates contractor liability for exposure of the system’s “secrets”. There is no better realization of this near-universal model than the modern system for making movies.

It is as though the secret societies of past centuries have been replaced by corporate systems which conspire to hide their brand of “self-maintenance” (i.e., world financial domination or whatever other goals a secret system might have) from exposure.

The recent call for transparency and the initiatives to increase it don’t eliminate this systemic secrecy. I think transparency is an effort to deal with the real possibility that too much secret complexity will grind any system to a halt. Insulated secrets are always less subject to evolutionary pressure and natural selection, and always more prone to that species of corruption that comes with controlling resources without outside scrutiny.

Hiding from competitive pressure (of which advocacy is one kind) preserves the core of the system, at the expense of its improvement or adaptation. Such hiding may benefit the people who abide in those hidden roles, but it degrades the system, both functionally and morally.

The basic technique of individual advocacy (threatening the reproduction of the core so that the goals of the individual will become a compromise solution) is based on this kind of understanding of the target system whether that understanding is explicit or implicit. But the companion of this successful form of advocacy is the failure to fundamentally change the reproduction of the target.

In my next post, I’ll give an actual concrete example of advocacy that started out using the basic technique but accidentally ended up changing a small part of the target’s reproductive roles.

Next Post: The Power of Enforcing Rules