I’m sure that everyone reading this has been involved in change efforts for our disability community at various times over years to decades. Like Sisyphus, we push the boulder up the hill and, if we are lucky, it only rolls back down part way.
There is value in viewing this dynamic of “3 steps forward, two steps back”, like crafts people viewed their work on building cathedrals in the middle ages. The cathedral started before they were born, and it continued to be built after they died. They were part of a multi-generational community working to create something permanent and beautiful.
On the other hand, our advocacy for change can and has had profound effects on the day to day lives of ourselves and the other members of our disability community.
We keep at it. We do this because of the bonds we have with the rest of our community, built on our own and others experiences of oppression, discrimination, and our own personal experiences of devaluing. We keep at it because it would be a betrayal not to.
But, we can do better. The systems we are trying to change are called complex adaptive systems, and every time we try to change them, they adjust. We also change when we try to change those advocacy targets.
Is it any wonder that we seem to circle around to the same issues in new guises?
One reason we lose steam in our ongoing change efforts has to do with the realities of running an advocacy organization or group. Trying to keep our eyes on the prize and also keeping the group running or the doors open is tougher on us than we know. That will be the topic for my next post.
Change is a universal phenomenon. But not so much intentional change.
Not that there isn’t a lot of time and effort put into intentionally changing our world. Our effort is immense, complex, relentless, and infuriatingly difficult.
Part of the reason the effort is so infuriating is that we succeed, at least partially. When we do, our success is immediately attacked. Our complex efforts globally to create humanly meaningful and genuinely useful social justice change are assaulted by equally complex forms of obfuscation and dismantling to counter our successes, not unlike the resistance that builds to antibiotics because of the very use of those antibiotics.
This is the definition of our current struggle, and it seems as endless as evolution itself.
To increase our success in this struggle, we have chosen to improve our planning and execution skills, to professionalize our approach to change. The entire ecosystem of social justice change has embraced this framework, from funding sources to specific individual change interventions. Being able to write proposals that specify a complex causal change network, through the use of tools like logic models and similar planning frameworks has become an important organizational skill.
But, there has been a cost to this professionalization, a cost that is subtle.
To put it bluntly, we have contracted the scope of our hopes to fit the requirements of concrete measurable outcomes and other marks of operational planning. Such outcomes are a normal part of operational planning but are not really the point of the change effort. Operational planning is necessary to achieve change, but it is a tool, not the source of the drive for change, or a true guide to change effectiveness.
That source is the dreams and hopes of devalued communities for the fullness that life should offer. The leap from those dreams to an operational plan, without an intermediate step, forces us to degrade our hopes.
By focusing on operational planning as the key of our change effort, we create a gap between those dreams and our actual efforts. That gap has been widening, and as it grows bigger, the changes we actually create become smaller, abstract, and disconnected from the real source of our passion for change.
This blog is about restoring the power of our passion.
You can get an overview of the framework for the posts to come by looking at the slide decks I have built based on this theme. You can view or download a pdf file of the slides and notes at:
In late 1970, about a year after I returned from combat in Vietnam, I had an epiphany about change that was so powerful, it started me on a 45-year journey to understand both the general change of the world and the ways of intentional change. I came to this post-combat world and this epiphany with a deep experiential understanding of social justice from being immersed in Catholic social justice theology.
I started working in a small medical clinic that supported families with children who hadn’t been institutionalized (the standard practice at that time). There were no supports for families that made this choice and choosing to keep their child left them bereft of community. The clinic’s goal was to enable knowledgeable management of the child’s medical and nutritional issues and to build a support plan of activities (PT, OT, sensory, etc.) that would enhance engagement between family members and the child. The point was in part to improve the child’s functions and ability to engage the larger world, and partially to teach family members, friends, and relatives, that this child, no matter the reach of the disability, was working hard to accomplish the same things that every other child struggled to achieve, albeit in a different, more complex way.
From this fortuitous and strikingly powerful foundation, I worked in a crisis intervention program (which I eventually ran), provided substance abuse therapy, worked in a school setting focused on children with severe learning disabilities, became an advocate in Michigan’s Protection and Advocacy Service, staffed a state council on employment rehabilitation services, and most recently, ran a state level rights and community organization called Michigan Disability Rights Coalition. I am currently a consultant to MDRC to maximize the impact of thmission-focusedused activities.
These different work experiences and the struggles of those with whom I worked forced me to come to grips with my own ableism in regard to the many, many communities of people with disabilities, and with my own experience of severe depression, social anxiety, and PTSD. I also learned through change efforts, both successes and failures, the mechanisms of the labyrinthine systems of support that constitute the societal response to the utter devaluing and social confinement of all people with disabilities. Struggling with these systems taught me the reality of change effort, and the myriad implicit ways that such bureaucratic systems undermine their own purposes and the passion and commitment of their employees.
Parallel to my work in this ongoing stew of change, I also tried to find conceptual frameworks that I could use to enhance my understanding and support my change efforts. One part of this process was a notion that each area of human knowledge developed a theory of change along with the development of the field. I began a task, that would take a number of years, to explore these different frameworks of change by reviewing a first year text in the field, and following up with one or more texts that included essays by members of the community. Such multi-author texts always convey information about the academic community’s views on change, even if that theory of change is not a direct topic of the text. My expectation was that, by reviewing a number of fields in this manner, I would discover a residue that would constitute a common framework of change that would have general use.
I was wrong. Instead, I found that there were a number of frameworks that only partially overlapped, and that these frameworks had very different implications for successful change. I had settled on distinguishing ongoing change as the general environment, and intentional change, formulated as advocacy. These various change frameworks had different implications for the use of advocacy as a tool of intentional change.
At the core of this journey was the growth of my understanding of systems theory, a large scale framework that has continued to evolve and split into many threads ( a system of frameworks as it were). My current work focuses on only some of those threads, the ones I believe are most useful to small advocacy organizations and groups. Combined with the ongoing insights I gained in my practical work, I have reached a point where I feel I need to begin to communicate what I have learned. That is the work of this blog.