Living the Question

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"Community of Light "
by Candee Basford
Copywrite 2005

“Mary Beth’s article ‘living the questions’ became the seeds for this website.
My deepest appreciation to Mary Beth for her support, enthusiasm and
compassion.”—Candee Basford

What Happened to Me During Action Learning
A description of the evolving process and some thoughts along the Way. By Mary Beth Pilewski Paul

In March of 2000 I was invited to participate in an "Action Learning Group" with a handful of other mothers from central Ohio. The facilitator, Candee Basford, was another parent who had been involved with a grant funded through the Ohio Develop-mental Disabilities Council called "Removing the Mask." Among other things, this grant was helping small local initiatives make grassroots changes around long-term needs for their children with disabilities. Barb McKenzie, a local "activist" parent, invited me to join this particular group because we all had ongoing concerns about inclusive education and advocacy, especially self-advocacy.

I already knew four of the five other participants; all of us had been in different leadership positions concerning advocacy, education, disability rights, etc., both paid and/or volunteer, in our community. Including the facilitator, five of the seven that made up the entire group have children with Down syndrome. All of us have had at least some success including our children in public schools; most have had their children fully included.

When Barb called me to get together, I was not exactly clear what we were going to be doing. I just knew that I was being invited to get together with some other parents and talk about what was going on with school, about successes and struggles. I also heard "we'll be having something to eat and there will be wine, so get a sitter and plan on a great evening."

My curiosity was piqued. Four of these women I considered the "inclusion goddesses". They seemed to have set the standard (and very, very high ones they seemed to be!) for including their children with disabilities in regular education settings instead of segregated programs. I had felt ambivalent a lot of the time whether or not this was truly possible for my family, given the behavioral challenges my son was presenting at school every day. I made a promise to myself that I would be honest with these women about my huge concerns and doubts and fears. But I also just wanted an interesting evening with good conversation and a chance to gab in a relaxed atmosphere.

What happened at that first evening was simply different and familiar at the same time from any gathering I had been to before. The best part about it was that it was intimate and relaxing. We met in the hotel suite that the facilitator had booked for the evening, since she was from out of town. We were able to light some candles, eat homemade soup and other comfort foods, eat some chocolate, and share a few bottles of wine. No kids, tele-phones, or crises to deal with. No interruptions. From that standpoint alone it was a real getaway.

After we all introduced ourselves and/or brought each other up to date about children, families, and jobs, we began the work of the meeting.

The simple question that we each were asked was "What is the one burning question in your life?" That was pretty quick and to the point. And since we were gathered there around our children's situations, my question was "How do I include my son if he doesn't want to be included?" (My son had not been able to deal with being in second grade at the time- he had been very disruptive. He was still being aggressive in the special education class as well. We were truly at odds about what to do.) As everyone went around and shared their "burning questions", it became clear that there had been no straightforward path for anyone about what to do for their children. I listened most carefully to the woman whose daughter used to have some aggressive and disruptive behaviors when she was younger. This soft-spoken and eloquent mother talked about just taking a year off from trying to do things perfectly; about creatively approaching things; about getting different people on board to help.

The facilitator had excellent listening skills; she never dominated, but knew how to connect people's questions one to another. We too were to listen respectfully and without making judgments. As people spoke, she wrote with words and colorful graphics. This kind of non-verbal response also

provided us with her interpretation of "What I hear you saying is…" She might draw yellow "rays" around a word to connote energy or warmth; a house with a heart around it gave more emphasis to the meaning of home, and so on.

As I stayed true to my promise to myself to be honest with them about my struggles with my son, I felt that people really were listening to me. As I listened to the others, I heard more honesty about the difficulties all of us shared. No one had a monopoly on the "right answers".

We then went around again and shared some possible actions we could take around our questions. We were to come back to the next meeting (about a month later) and share something about our actions. We were also to bring a gift. This was a nice, open-ended thing to do. There were no other instructions about what that meant.

Before the second meeting, my uncle who had mild mental retardation and serious mental health problems had died. I attended the funeral and then wrote an essay about him and his impact on my life. That helped me bridge my past with my present life with my son. This was my "gift" that I brought to the second meeting. Being able to share my reflections with others who were also struggling with life-long questions was quite cathartic for me. Because people were willing to hear me out, I felt like a broken dam with my life pouring out at times.

Over the course of several months, we continued to meet. The food and drink was clearly an important part of the meetings. I loved that it felt like we were involved in parent support and advocacy, but I loved that it was something that I looked forward to instead of dreading. (Other groups that I had been involved with meant mailing lists and fund raisings and programs and committee meeting.) Action Learning was a total group of seven; e-mail and phone calls connected us in between meetings; no dues and no agenda but the gentle constructs of the Action Learning format of question-action-reflection-question-etc.

As our group formed a closeness, we began to tell more stories about our children. Sometimes these were just delicate, fragile vignettes: a triumph of a new skill achieved; the courage to try something a different way; an unex-pected guest who wanted to play with my son. I found that hearing all- the failures and the successes - was extremely important to me.

As time went on, I found myself more apt to call someone from our group for help or feedback when something really tough was happening. I found myself listening a lot more carefully to other people's questions. I found myself listening more carefully to all kinds of questions, not just those around my son.

Because this Action Learning group was funded by the Ohio DD Council, I received invitations to other workshops they were hosting. Connie Lyle O'Brien facilitated our final meeting and gave us wonderful feedback. I found myself at a Self-Advocacy workshop given by John O'Brien, and there I felt a reconnection to old friends from my past. Candee, our Action Learning facilitator, also brought Jo Krippenstapel into my life. Jo has since helped me think through some very difficult aspects of my son's behaviors by connecting me to other specialists who are continuing to help.

Since one of the major parts of Action Learning is asking the questions, something that flowed from our group was simply asking more and more questions that don't necessarily have answers.

In this kind of atmosphere, we found ourselves being gentler with one another. During this time of about four months, some of our group experienced life threatening illnesses, long-term care for extended family, and major life transitions. Seeing the changes in the other members as they dealt with these things was humbling and moving.

But also during this time I seemed to experience a kind of opening up of a dimension that had been closed off to me for many years. I was suddenly meeting people who were asking the same kinds of questions; I was bumping into old acquaintances who were talking about getting together to meet and work on problems in the school district; I was somehow getting connected to more helpful and supportive people than I had met in years. And through it all I tried to listen more carefully to the questions they were asking. I found myself being able to connect more people as well. What has come out of all of this? Well, I felt like I had the energy to get something going with friends who had been asking some of the same questions as our original group. So Barb and I started a second Action Learning group

consisting of more parents who have or had been active in leadership roles around disabilities in our community. We are meeting for the second time tomorrow. We were realizing that we need to support one another but didn't want to go back to the same old programmed meeting format. This has been supported by the "Removing the Mask" grant as well.

I started to read again about disability-related issues, both philosophical and practical. I also subscribed to an on-line list-serve about inclusion. I was asked to consider going to the TASH convention in December, and so I am. I went to a PATH and Creative Facilitation workshop given by the Witherows. There I was able to make more connections, as well as be able to reconnect again to people and events from my past.

Through all of this, my family has had to weather a very difficult new school year for my son. He started at a new school, with just about all new students and staff. He reacted very strongly against these changes that were imposed upon him, with aggressive actions and disruptions such as screaming. People at school were at a loss as to what to do, after attempts to deal with my son the same old way yielded little success.

I felt much more able to ask for help from members of my Action Learning group. Some of the help came in the form of being able to vent safely; some came in the form of "why don't you call so-and-so?" Some came in the form of learning that reframing a problem can yield different solutions. Some help came from thinking about other's stories: if we can weather this, then we can keep our eye on the long term prize: more language, more friends, more being a part of the community; more self-control, more fun; more meaning and a more interesting life.

Because of Action Learning, I asked our school district for more help. This yielded enormous results: our team now has on board someone who understands autism, team facilitation, non-verbal communication strategies, and sensory issues. We are all gaining a better understanding of what might be making my son tick.

But what else has come out of this has been a way to connectedness to many other things in life. Questions to think about concerning our local community; around use of material goods; around inherent value in things; thinking about the meaning of community; watching this format called Action Learning evolve.

Action Learning is actually a tool of sorts, a social construct, used by business and management to help groups work more productively, more effectively, and with more quality. Along the way, some people started applying it to "human service systems" (my interpretation) and among them, Candee is fascinated with the process; we engage in a dialogue around that. Barb offers many ongoing opportunities to continue to think about new ways to approach the old questions. I am astounded at the effect that this has had on my intellectual and spiritual life. My husband and I have found a mutual bridge on which to meet about our difficulties with Peter Ben, and he and I are able to talk much more easily about the "what do we do next." And as we continue to discuss, Peter begins to plan how he can get his university students in education to engage in more reflection, as he, Barb and I form a mini Action Learning trio.

Without wanting to sound trite, I also cannot overstate that Action Learning has felt above all like a Holy Way. First, the format reminded me of church liturgy planning meetings I used to be involved with. This was a chance to read-reflect-share-reflect-discuss and then form consensus. The shared experiences, story-telling, reflection, and gifts brought to mind planned retreats that support conversion and community such as "Christ Renews His Parish" and "Renew". The form of small, grass-roots groups working mutually to support one another brings to mind "base communities" which first began in Central America as an outcome of Liberation Theology. It is Church that is decentralized but supportive of small households gathering regularly to eat, pray, and play together apart from Sunday worship.

What Action Learning is not is rigid, top-down (with a leader who teaches or preaches) or absolute. It fosters caring, listening, "wasting some time together", and even silence. It is not how to do things the right way, but rather "how can we think about this problem together?"

Action Learning also goes against the grain of the current cultural values. It is not particularly efficient, since only a few people at a time meet together. It won't make anyone rich quick, since it is more about being than doing, (although the doing follows from being together.) It fosters silence and quiet, not business and a full agenda. It requires interdependence, not independence. It gives us a way to live with the unknown, to stay in the moment.

No matter what one's religious affiliation or spiritual inclination, this kind of work is in line with the commonly held tenets of many faiths that values a time apart for prayer, reflection, meditation, contemplation. It acknowledges a dependence on the Other. In sharing food, there is a way to celebrate and nourish more than our bodies. In telling stories, we begin to write a history together.

In the end, while our children with disabilities may be the reason we came together, we ultimately are people needing each other, finding in each other a helping hand to make a better way for our children. In doing that, we make a better way for ourselves.

December 1, 2000

This article appears in the March/April 2001 issue of TASH Connections. TASH actively promotes the full inclusion and participation of persons with disabilities in all aspects of life. TASH, 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD., 21204.