Putting the pieces together, naming the contradictions: my experiences as a community organizer with Asperger's syndrome
by Martin Chartrand
When I heard the title of this 'zine, No Missing Pieces, it immediately seemed right. Those three words resonated to me in a way that momentarily connected several of the various memories and ideas I'd been considering writing about. Because that sense of being able to put it all together—and the tension and frustration when it doesn't all fit together—has been one defining part of my experience with Asperger's syndrome.
I am going to attempt here to put together many pieces of that experience, particularly those that relate to my work as a community organizer for social justice. I have felt variously that my way of perceiving the world as a person with Asperger's syndrome is why I organize, makes me uniquely suited to be an organizer and makes my work especially challenging. I think all of these are true in different ways. Please understand that this is my experience. Autism and Asperger's are a spectrum, and this is colored by my position on that spectrum, as well as my posession of a fair bit of white, male and classs privilege. Nonetheless, I hope that you may find meaning in some of this...
When I was in elementary school, other kids would say I was “trying to fly” because I was always waving my arms in the air. That's actually a poetic moniker, but it didn't feel that way to me at the time. I didn't want attention for the waving, I just needed the movement to help me process the sensory input of living. There were other things too—for example, the kinds of “play” that most of my classmates enjoyed, such as shooting baskets, felt humiliating to me. Not only is my spatial coordination with objects pretty bad, but embedded in these games and in the interactions whenever groups of kids gathered there was a kind of competitive group dynamic that I felt made no space for who I really was. Even if I tried to participate, I think everyone could tell it wasn't me.
Don't get me wrong, I didn't have it bad. I was mostly treated okay or left alone. There were kids who were both awkward and had dirty, tattered clothes; who really didn't seem to be able to interact the way that was seen as normal. They were constantly being derided, both to their face and behind their back. It was an insult to be mentioned as having spent time with them. For the most part, I saw the writing on the wall and kept a general coldness toward those pariah-like kids. It felt uneasy, but I faked it as well as I could and went through most of childhood with a vague sense that something is wrong—that the world just doesn't fit together, or maybe I just don't quite fit in it.
That sense, that all is not as it should be, that there is some piece missing or out of place, Is a big part of why I do the work I do now. I am an organizer. I strive to bring people together to build relationships of mutual support, confront the injustices in their community and work to change them.
I grew up in a middle-class family and got to experience a diverse world outside school. We went skiing and hiking, travelled to foreign countries, sat in meetings of the local food co-op. My mom knew and explained to me that I had a diagnosis of Asperger's, and she fought for me to have accomodations at school. I am grateful for all of this. From what I could tell, the kids who we treated the worst in elementary school didn't have any of this. If those things helped bolster me, though, they weren't enough to help me transcend my sense of being less-than and speak or act from my heart. When I stood by or nodded agreement while most of my classmates derided a few of us, I was letting the world define who I was.
Perhaps because this acquiescence was very directly familiar to me, it seemed intuitively clear to me as I learned more about modern capitalist society that much of it operates the same way. Speaking from a white/male/class privileged perspective, I see many in my position who comprehend the oppression in the relationships and institutions around us, and to varying degrees play by its rules, underestimating our real ability to create change. Writer Michael Lerner describes this as “surplus powerlessness:”
...our encounters with real powerlessness are often misinterpreted in ways that make us think of ourselves as even more powerless than we really are. This is what I mean by Surplus Powerlessness...It is our Surplus Powerlessness that keeps us from making the changes that we actually could make.
In my childhood experience, I felt this sense of powerlessness as a disconnection from myself, which made it hard to act because I didn't have any confidence in who I was or where I was coming from. This disconnection also made it hard for me to connect with family, adults or peers. For me, this is very tied together with the challenges interacting and building relationships that many researchers associate with Asperger's syndrome and other autism spectrum diagnoses. Writer Temple Grandin (who has autism) suggests that for some autistic folks, this challenge can be related to a feeling of being overwhelmed, unable to put the pieces of our world together. Both concepts make sense to me and feel like descriptions of parts of my experience. It is hard for me to separate one from the other.
In the best moments in my work, I am able to create situations that are transformative both to my challenges connecting with others and to the relation of my community to oppressive social structures. In working collectively with people around me—of various personalities, classes and walks of life—to name and address the causes of injustice, I feel an energy and connection that I for a long time couldn't find. This is because it gets me in situations in which I've been able, sometimes, to put the pieces together enough—of what is happening around me and the world I'm thinking about—to overcome the processes in my brain that hinder me in being present.
When I told one community member who is on the Board of the organization I work with that I have Asperger's syndrome, she was convinced it was an incorrect diagnosis. “I've seen people with Asperger's and that's not you,” she said. “You are able to listen to people.” This may be partly related to the fact that Asperger's is a spectrum and looks different in every case. Other aspects of my personality may counteract the traits of challenged social interaction that this woman, a mother of two who is trained as a counselor, was expecting to see in someone with this diagnosis. However, I believe some of it may be due to the context in which I came to know her. My therapist recently said to me that in her experience working with children diagnosed with Asperger's, these young people can learn to interact in a way that is seen by others as polite and attentive, but it has to be learned intentionally, like any other skill. This may relate to why I find I can function and sometimes thrive in the relational work of community organizing.
In my adult life I have been able to interact publicly with little difficulty and some grace. However, I find that in closer relationships it can feel arduous to keep up the level of interaction that is expected. For example, when one of my partners of several years talks to me around the house, I often respond in ways that to him feel cold or uncaring. In fact, I care deeply about him and love hearing what is on his mind. I also know that I can express my interest through a combination of eye contact, tone of voice and responses that show I am engaged. It is just that if I am focused on something else—perhaps doing dishes, or listening to a song or changing clothes after returning from work—it can be stressful for me to quickly pivot my focus from that activity to the activity of listening. The more stress or fatigue I am feeling from other factors, the harder it is. Sometimes it takes a few minutes for my brain to fully adjust to the kind of interaction that I am in. If I know I will soon be having a conversation and prepare myself for it, that can make it easier. It has been helpful for my partner and I to know that I have Asperger's syndrome and be able to talk about this and how it affects our interactions.
In community organizing, building relationships and trust is not just expected to happen. It is a discipline. I know that when I am at work, my overarching purpose is building trust and connection with the low-income people, members of faith communities, clergy, union workers, local farmers and others I am organizing with. This is clearest in the practice of “individual meetings” or “1-1 meetings,” which one writer on community organizing defines as “intentional conversations about one's own life as it relates to public life.” Many people may have similar kinds of conversations as part of day-to-day life. What I find unique and compelling about the way I have learned to practice these meetings as an organizer, however, is the “intentional” aspect. I have taken in and, in turn, presented several times a training on 1-1 meetings. It includes a slide show of how to do this well—eye contact, responses and questions that show you are listening and draw out the person you are meeting with and, importantly, putting aside any other things occupying your mind and focusing entirely on hearing the person.
I tend to orient myself to my situation by figuring out what it is I am doing and how it relates to my larger purpose. If my brain doesn't have adequate content to put in these two slots, I will probably be distracted and preoccupied. Whether I am relaxing and reading, spending time with my partner or sitting in a staff meeting at work, I have to deliberately decide to do it. When I sit down for a 1-1, I know exactly what I am doing and several ways it fits my larger purpose. For example, if it is a member of a local congregation (much of the organizing I have been doing recently is connecting faith communities to action for social justice), what I am doing is sharing a bit of my life and why I do the work I do, asking for and listening to their life story, what is important to them about their faith and congregational life, what concerns them that they would like to see changed, how these issues have impacted their life and what their thoughts and feelings are around working together with members of other congregations and the broader community to take public action on shared concerns. My purpose is to build trust and connection and learn about the person. It is what will enable me to later invite their participation in organizing in a way that is appropriate to their interests. It is one step in the process of building a more interconnected, mutually understanding society, which is a necessary part of social change. Being able to contextualize it this way in my brain is critical to my ability to be present and engage in a lucid dance amongst the emotions, stories and ideas the person is sharing.
I find this practice very fulfilling and enjoyable. At times, listening to a person can help me to re-connect the immediate details of my life with a sense of the “big picture.” About a month ago, I met with a woman who had come to a couple events related to our organizing effort and was interested to be more involved. It was the morning after a weekend, during which I had been busy visiting my grandmother, preparing food for a BBQ being hosted by a friend I didn't want to disappoint, mowing the lawn and going in to work to catch up on a backlogue of work. I was stressed out that I hadn't done some reflection that my therapist and I had planned for me to do that week, or taken enough time to myself to be able to relate adequately. These stresses added up, contributing to my feeling that my life and work generally is unsustainable and there is no clear solution. I did my best to set this aside as I entered the coffee shop for my 1-1. Because I'd practiced this many times, it worked. The woman I met with talked about a moment at a workshop when she had realized how many of the people around her shared the common experience of not being valued for who they are, whether it was in being hungry, homeless, in her case, having to leave an abusive relationship. She talked about how this set in motion a process of recognizing her own privilege and assumptions about others, and re-focusing on addressing not only the immediate examples of oppression, but also the deeper dynamic causing them, and doing this in a way that balances relationship-building and action. Hearing this, I started to once again feel passion for the work I do, and understand intuitively how all the things I do to take care of myself and have a good home and social life fit in with being an effective guide and companion through the personal and political process of social change. I then began to see the concerns of that morning as challenges that come with trying to fill a complex and important role the best I can, not as intractable problems. In this way, I was able to recognize the pieces of my experience that are missing or don't seem to fit as real contradictions in the world I live in that I am engaged in a process of addressing, however imperfectly.
This experience might not be possible for everyone. I am fortunate to have had support and opportunities to learn how my brain works and how to use it for work that is fulfilling to me. Two factors in particular were critical for me: 1) the congitive practices I've learned, in part through my work and in part with support from friends, family and therapy, which helped me to overcome stress/anxiety, and 2) the way my work puts me in relationships with others to fit together our experiences of oppression and injustice and collectively imagine and strive toward a world without these contradictions, a world with no missing pieces.
That morning was only one step in a long process, full of moments that do not come together as satifyingly. Community organizing happens in the world that is, and I have to do it as the person I am. My work requires coordinating closely with other people in the midst of real pressures of time and resources, on endeavors that it is difficult to know the effectiveness of. Like any work, organizing doesn't always go as planned. In my experience, since organizing is focused on building relationships, it requires me to be open to changing focus suddenly, to putting a lot of energy into things that may not work and to changing plans when I feel absolutely sure my original plan was best. This can be challenging and frustrating for someone like me whose way of processing the world is to try to fit all of the pieces together.
The ways of thinking and feeling that I associate with my Asperger's syndrome include both unique gifts I can bring to my work and deficits that can intensify to some common dangers that social change organizers face.
One attribute in particular contains both gifts and dangers—the focus on complete information and step-by-step problem solving that Temple Grandin calls “bottom-up thinking.” Dr. Grandin describes an autistic researcher who was praised by peers because she was able to think outside of the usual assumptions of her field and costruct unique studies. Grandin posits that this researcher “found it easier to free herself from the preconceptions inherent in top-down thinking because she was able to see the details dispassionately and in isolation,” and goes on to describe her own research process, which also consists of looking at huge amounts of details before ascribing any broader theme to tie them together. This “bottom-up” process describes my predominant way of thinking since childhood. It can be an asset in my work in the same way it is for the researcher Grandin describes. For example, the full-time staff at my organization often get together a week or so before we meet with our Board of Directors to discuss what questions to ask. Our Executive Director will often list several broad themes that he sees as the central things we need to address in the meeting. I will often question these, not because I necessarily think they are wrong, but because I haven't gone through the process of thinking through all of what has been going on in the organization and the personal circumstances that will be influencing how each Board member comes to the meeting. I will often push to step back, sometimes resulting in us thinking of a new way to approach the meeting. However, as Grandin goes on to say, “this process can be extremely time-consuming.” In a grassroots organization trying to do a lot with limited staff time, that's a big problem. For several years I've been primarily responsible for the bookkeeping of our organization. Because this has been on top of my responsibilities in the actual organizing work, I often fall behind on entering our income and expenses into our bookeeping software. Our Executive Director and Treasurer regularly ask “could you just tell me roughly where we're at financially?”, meaning how many months could we keep operating at usual level with the money we have in the bank and promised, give or take a few thousand dollars. I always evade the question unless I've had time to look at all the details, which rarely occurs.
There are two ways to address this problem—to develop shortcuts or to rein in my commitments to keep them within my capacity to do in the way my brain prefers. I am in the process of doing both. I have begun training someone else to do our bookkeeping (this is possible only because our organization is doing well enough to hire a part-time office manager—I am not sure what the solution would be with fewer resources). However, I have also begun teaching my brain to make educated guesses and do imperfect work, then let go of it. Part of me doesn't want to let go. Since I was in elementary school, my default has been to do slow and painstakingly thorough work. Because my mother recognized this as a trait of Asperger's syndrome and advocated for accomodations, I was given no time limit on tests and generous extensions on assignments. This gave me the opportunity to develop my intellectual abilities, but I now recognize the need to overcome my reliance on thoroughness as the quality that sets me apart and gives my work its value. Instead of always getting the details right, I am practicing being attuned to my needs and the circumstances at a particular moment, and doing what is appropriate to that moment.
The circumstances surrounding work for social change urgently demand an ability to let myself not get it exactly right. I recently read an article in a 'zine by activist psychologist Kristi Kenney that puts it this way, quoting writer Rebecca Solnit to describe a more sustainable way of evaluating our efforts at social change:
If we demand perfection then nothing will ever happen, no-one will ever do anything because they are waiting to be perfect or all-knowing—isn't this what so often keeps people from being activists-a fear that they don't know enough or aren't good enough somehow? Let's put down that too often wielded stick and rummage through the toolbox: “Activism..is not only a toolbox to change things but a home in which to take up residence and live according to your beliefs—even if it is a temporary and local place, this paradise of participating, this vale where souls get made” (Solnit, 2004, p. 87)
Another danger is the tendency to stay so busy with the work that I ignore my own needs. For a while, this feels good—as long as I am working, I have the certainty I crave about what I am doing and why. I know there is more than enough work that needs to be done and that I am chipping away at it. As long as I tell myself this, I am not facing the uncertainty of whether I am chipping in an effective or sustainable way. “Work that needs to be done” is a phrase loaded with assumptions. To be a balanced person requires more than dogged perseverance. It requires making hard decisions, like not meeting with a community leader, even if I know it could really cement our relationship and help my organizing effort, because I need to have more time to myself this week. It requires doing things that I may not be able to categorize as easily in my mind, like taking time to reflect and write down my thoughts even when I don't feel I can think anything of value. If I don't make those hard decisions and take that time, I tend to slowly become resentful of the people around me. I resent the people I work with for having expectations of me, or for somehow staying upbeat even though they also face overwhelming challenges. I resent my friends who aren't as busy. I resent myself for allowing this to happen.
Though staying busy and building up resentment is a particularly alluring trap for me because of my brain's craving for completeness, closure and defined activities, I have read and heard anecdotal acounts from other organizers and social change activists that describe the same process. One of my co-workers has shared with me that she often notices herself saying “yes” to too many responsibilities and to accept only perfect work from herself out of a fear of disappointing people. She sees this resulting in her not having time to take care of her own needs, and in turn becoming less able to tolerate annoyances that would “normally” not get to her. Activist P.B Floyd writes in an article on how to avoid “burnout” while working for social change that “there is an unspoken assumption that 'serious' activism involves a large degree of personal martyrdom—that serious activists must give up their individual life so they can devote their lives to the cause.”
Part of my aim in writing about the ways in which my organizing work creates situations in which I can find a sense of wholeness and connection has been to create conversation around the ways that working for social change can enrich, rather that take away from, one's life. This is one conversation Floyd suggests as an antidote to the assumption of martyrdom. However, no matter how clarifying and empowering my work can be, I still need time to myself and time to focus on the other relationships and activities through which I find fulfillment. In fact, it may be when I am feeling best about my work that the danger of entering this cycle of resentment is strongest. This is because the satisfaction and certainty I feel from the work creates an incentive for me to spend more time on it and less on other areas of my life that feel less certain. When work becomes frustrating, as it inevitably does, I begin to notice how much I've been neglecting my other needs. The same co-worker I discuss above describes this as an addictive process. In order to avoiding operating addictively, I practice focusing less on clearly successful moments finding equanimity through ways of thinking about my work that are more constant, whether or not I put in excessive amounts of time. Floyd suggests a similar approach later in his article:
People who look for certainty that their work will make a difference WILL be disappointed and will burn out and leave the activist scene....I don't think our main emphasis should be to celebrate successee, because the flip side of that is failure. Rather, we need to figure out ways to memorialize the long-term historical process with which we are engaged and affirm the need to keep on keeping on.
And, as Floyd also acknowledges, “keeping on” means taking care of other personal needs and desires outside the work: “...social change isn't above my own life, it is part of my life—one of my goals, not a more important goal than any other.”
In order to teach myself to maintain that kind of balance and big-picture perspective on my work, I think connection to my feelings is critical. I find this is rarely discussed. However, other activists and people with autism have recognized this need. In one article in her 'zine on Activism & Self-Care, Kristi Kenney describes her own emotional disconnection and suggests it is a common problem among people working for social change:
It seems to me that we are not really engaged in emotional responsiveness on the issues we are working on. It is hard for me to feel in the ways which naturally come to me because it would require me to cry, laugh, yell, etc. at times that are not socially appropriate. Activists, like the dominant culture, often intellectualize problems and therefore separate from the direct experience of the emotions that these issues bring up...If we are out of touch with our emotions and do not respond to the world, each other, or ourselves with emotional intelligence, then we are disconnected.
Temple Grandin also mentions crying as a critical skill for people on the autistic spectrum to learn in order to function in public life:
How do you [manage your emotions]? By learning to cry. And how do you do that? By giving yourself permission (and, if you are in a position to give someone else permission, do that too)...If you want to keep a job, you have to learn how to turn anger into frustration.
I have come to the conclusion that being connected to my own feelings is especially important for me as a person with Asperger's who is working for social change. As Kenney says, working for social change originates in feelings and experiences like those I describe in the beginning of this article. It is about dealing with real pain from real problems in the world. It is about following our hearts, feeling the joy this brings, and challenging and supporting others to do the same. If I don't practice expressing these feelings, I become disconnected. This is when I am likely to work excessive hours, to become bitter.
I realized a few months ago that I've only cried a few times since childhood. It is something deeper than a conscious fear of being socially inappropriate—I just automatically suppress that part of myself. And it certainly has resulted in my emotions coming out in ways that cause further distress for myself and those around me—yelling expletives and throwing things at work, hitting myself after arguments with my partner. But with the realization, I am taking Grandin's suggestion. I am learning to cry.
Contributor Bio: Martin Chartrand lives in Bangor, ME, where since 2007 he has pursued his two major callings: organizing for social justice and being a singer-songwriter and noise performer. He likes music, climbing mountains and spicy food. He can be contacted at email@example.com. You can hear Martin’s music at www.soundcloud.com/martinguychartrand.
Lerner, Michael, Surplus Powerlessness: The Psychodynamics of Everyday Life and the Psychology of Individual and Social Transformation (New York: Humanity Books, 1999) p. 3, quoted in Kenney, Kristi, “The Psychology of Social Change; or, why doesn't this seem to be working?” in Counterbalance: Thoughts on Activism and Self-Care, ed. Kristi Kenney (self-published, 2007)
Grandin, Temple & Richard Panek, The Autistic Brain: Thinking Across the Spectrum (New York: Houghton Mifflin Harcourt, 2013) pp. 83-87
Linthicum, Robert C., Building a People of Power: Equipping Churches to Transform Their Communities (World Vision, 2006) p. 117, available at http://www.piconetwork.org/tools-resources/document/0010.pdf
There are many different approaches and ways of thinking about community organizing, some of which don't match my description here. Much of my thinking is shaped by the approaches of the PICO National Network (www.piconetwork.org), which I have coordinated with for the past couple years.
Grandin & Panek (2013), pp. 120-125
Ibid, p. 124
It is important that I have come to an internal resolution to work on this. When bosses, teachers, co-workers and friends have told or even suggested over the years that I learn to do quicker work, I have not responded well. If I'd had to meet tight time limits at school, I might have become irretrievably discouraged. On the other hand, it is possible that a loving and creative mentor could have helped me address the drawbacks of “bottom-up thinking” more directly earlier in life, but given the realities of most schools, I think my parents' and teachers' decision to give me accomodations was probably a good one.
Kenney, Kristi, “The Psychology of Social Change; or, why doesn't this seem to be working?” in Counterbalance: Thoughts on Activism and Self-Care, ed. Kristi Kenney (self-published, 2007), quoting Solnit, Rebecca, Hope in the Dark: Untold Histories, Wild Possibilities (New York: Nation Books), 2004
Floyd, P.B., “Questions About Burnout & Aging in the Activist Scene,” in Counterbalance: Thoughts on Activism and Self-Care, ed. Kristi Kenney (self-published, 2007)
Kenney, Kristi, “Looking to Those Who Have Been Here Before: Miriam Greenspan, Joanna Macy & Sarah Conn” in in Counterbalance: Thoughts on Activism and Self-Care, ed. Kristi Kenney (self-published, 2007)
Grandin & Panek (2013), p. 194