Enabled and Disabled in Community: Sharing Life’s Physical Challenges

Wikis > Enabled and Disabled in Community: Sharing Life's Physical Challenges

Long-term community member Daniel Bartsch has suffered deteriorating use of his legs during his tenure at Magic Community in Stanford, California. While the diagnosis of his condition has been unclear, he is now relying on a wheelchair to get around. We present here a transcription of a discussion at Magic about the challenges and opportunities of fully integrating a differently abled member.

Magic is an intentional community founded to demonstrate how people can apply the methods and principles of ecology to better care for ourselves, each other, and the earth. Human attempts to dominate nature and each other are increasingly damaging. Like people in many other intentional communities, we at Magic are determined to live “with” rather than “over.” Our degree of success will be measured in the quality of our own lives and the quality of our contributions to others.

When I came to Magic in 1981 the community was only a few years old. David was 35. I was 31. The four other Magicians were twenty-somethings. They’d all gone to Stanford and to Ivy League schools, but they were skeptical of the Establishment. They were idealistic, enthusiastic, affectionate, and ambitious. You might call them hippie/yuppie hybrids. I was a college dropout working as a machinist. I loved to learn but I hated school. In some ways I felt I was in over my head with these people. But I liked them and they liked me, and we shared basic values. So we gave it a whirl. Between my thirtieth and fortieth birthdays, I lost some everyday abilities that most people take for granted — like walking and standing, and enduring small changes in temperature. In the process, I’ve become less worthy in terms of the values often acknowledged in our wider society. At the same time, I’ve become more worthy in ways fundamental to the values underpinning Magic.

To share how we Magicians are adapting to my changing condition, I’ve pieced together bits of several conversations. My story raises issues common to all human relationships, and to all individual lives: How much shall we give to or ask from each other? To what extent do we find satisfaction in separateness, and to what extent do we find it in unity?

Daniel: What do you recall about my arrival at Magic, Jeffrey?

Jeffrey: Jeffrey: You’d been volunteering on the tree projects, and you’d taken care of the garden when the rest of us went away one weekend. I thought you were really sincere, and knew what you wanted. I also thought you’d had some experience in the world, and knew how to work.

Daniel: Did you worry that I wasn’t on a fast track like the rest of you?

Jeffrey: I felt great about it. I was trying to get off the fast track. You remember I was working to stop Diablo Canyon (a nuclear power plant). I had no desire to “succeed” in the ways of most Stanford alumni.

I think all of us sensed a “class” issue — that you weren’t in line for the same deal in society that the rest of us were, that you didn’t have the same choices. People don’t like to talk about pecking order, but you see it everywhere. I admired you for your idealism. I thought you were gutsy to hang onto it into your thirties, despite the hassles you endured in the corporate environment and the rest of the larger society. I think all of us wanted to build our friendships around sharing ourselves, rather than forming alliances that enabled us to become more powerful and dominant. But I don’t remember your saying anything about health problems.

Daniel: I knew I had “weak feet”; I’d been flat on my back a couple of times during my twenties, unable to walk because of foot pain. I had no idea what that meant. I always thought that if I were careful, and exercised to become stronger, then I’d be all right. My mom and dad and older sister are all tall and skinny like me (I’m 6’5″ and 165 pounds). We’d always been a pretty healthy family. When I joined Magic, I’d never heard of Marfan’s syndrome, an inherited degenerative disease of the connective tissue that often affects really lanky people. Then doctors started asking me about it. Even now my diagnosis is uncertain. They say I’m “marginal” Marfan’s.

David: When you first collapsed and weren’t able to walk, I thought, “After he gets well, I hope he’ll be more careful. Everybody here needs to stay in good shape if we’re going to succeed in such a wildly idealistic venture.”

I’d been through the multiple sclerosis scare with Corinne during the prior seven years. I’d thought a lot about “blues” lines — “Nobody knows you when you’re down and out.” I realized that I wanted to be a reliable friend, but I was so ambitious. Jeffrey’s right about wanting to build friendships on shared values. But I’d had a lot of experience in getting — and very little in giving.

Jeffrey: None of us understood the differences you brought to our group. We were convinced that with some combination of care and exercise you were going to be able to “get better.” We were children of privilege. None of us had any experience with persistent disability. I thought of my own eyesight, correctable to 20/20 with lenses, as a terrible “flaw.”

Daniel: I tried a thousand things: jogging in sand, hatha yoga, swimming, massage, weight lifting, different diets, special shoes of every description, electrical stimulation, drugs, crutches, half-leg braces, full-leg bracesÉ.

In spite of everything I did, each time I tried to walk the pain just grew until I became exhausted fighting it and got sick. Then I’d be in bed for a few days or weeks before I started the cycle again. I finally gave up in 1990 after I caught pneumonia and spent five days in the hospital, near death. The wheelchair seemed like such a stigma, but I’d run out of alternatives.

Kristi: When I lived at Magic, I couldn’t figure you out. You had all these strange ideas about your feet. You did everything in your own way — rolling around the kitchen in an oversized office chair, wiring work boots with electric heaters. I didn’t know what was “just” in your head — crazy maybe — and what was “real.”

On top of it all, I was dealing with my own life issues. Being taken away from my mom before I was even old enough to go to school. Then moving out from my husband and into Magic. Knowing I didn’t want to be a research scientist for the rest of my life, but wondering what else to do….

David: I admired you for your inventiveness, but I was wary that you might just be running down blind alleys. So often I felt that you were a “law unto yourself” with your fixes and accommodations.

I saw you working your heart out for Magic, and really giving to the rest of us, even though we had more than you in many ways. I really admired your heart. I remember telling several people that by your actions you had redefined the word “gentleman” for me.

But your style of taking care of yourself and your belongings was different from any of the rest of us. And then there were things like handwriting and spelling — I mean I’d been told since childhood how important those skills were.

Daniel: Yeah, I remember being a preschooler with my dad screaming at me about how math was everything, and unless I was good at math, I was doomed. The poor guy had a pretty hard time growing up as a tenement kid. My older sister and I took a lot of abuse. For most of my life I hated math, spelling, grammar, anything rigid and ordered that reminded me of my dad’s “lessons.”

David: About 1985 I was feeling that there was a lot more to you than met the eye. When I taught at Armstrong, a school for kids with learning disabilities, I saw others who reminded me of you. Some of them were really bright, but often they had really forced handwriting and ordered their thoughts in ways I found unusual. Some were insightful and smart in certain respects, but they were missing other skills I’d always associated with intelligence.

Daniel: I’m uncomfortable with the term “learning disability.” I think my situation is more a reflection of my experience than some short circuit in my brain. I was really intimidated by my dad, and felt panic, hysteria, depression in the face of his belittling. I think I’ve shaped much of my life to this point around some of those early experiences. Only since Dad’s death two years ago have the rest of the family members started working through this stuff.

David: Well, whatever the nature of our differences, I became afraid that you were going to be an impediment to my living well. Again and again I reminded myself that we shared a common view of the human condition and a common vision. Consciously I wanted to be your partner. Subconsciously I was scared that I was giving up too many other things I wanted.

Jeffrey: You were a catalyst for change at Magic, Daniel. You were always pushing for us to live our ideals. We had a meeting to discuss what to do with my paycheck, and you, Erica, David, and I agreed that we wanted to be communal — income sharing.

David: I was elated when we did that. I’d dreamed for years of “being in the same boat” with people who wanted to combine the strengths of science and loving. We were actually doing it, after all those years of talking and searching!

But I’ll admit that I felt pretty dejected a few years later, when Erica and Jeffrey and everyone else but you and I had left. (Jeffrey returned five years later.) You were increasingly preoccupied with pain, and I was having a lot less fun.

Daniel: We talked about folding up and going in search of an established community. I’m glad we hung together. I think Magic is a unique experiment, a worthwhile bit of diversity in the communities movement.

David: In my heart I wanted to stay communal and live the principles we shared; but in my gut, I still felt afraid. I used to put it in terms of “not serving as effectively as I might”; but I suspected then, and still do now, that I was just trying to rationalize cutting and running.

In 1989 when I met the “perfect woman” at that Stanford conference, I was shaken. I imagined the life she and I might lead together, and doubted my commitment to you, to Magic, to community, to simple livingÉ.

Robin: This was about when I appeared at Magic. I volunteered on Planting for the Second Hundred Years (a Magic project to reforest grazed lands) while I was still at Stanford. You and David seemed a lot different from anyone I’d ever known. You were serious about living your values. I dropped out of school and you offered a month of temporary housing while I sorted out my life. That was six years ago!

When you and I talked, sometimes I felt that you wanted me to credit you in ways I didn’t think you deserved.

I saw you wanting to be valued in Magic, which was visible to the world mostly in terms of David’s public service activities. I don’t blame you if you feel weird around him. Lots of people do! He’s really smart and fit and principled, and says things that ruffle people.

Daniel: I’ve gone from biking, walking, and standing to sitting in my wheelchair or lying in bed during the time you’ve been here. Accepting that wheelchair was one of the hardest things I’ve ever done.

Remember when you took a spin in it to the California Avenue shopping district and came back shaking your head?

Robin: The word “invalid” is right on. People “invalidate” someone who is obviously limited. I was amazed at how different I felt in that wheelchair; I wanted to scream at everyone, “I’m just doing this to see how it feels. I can walk. I can run. I’m OK.”

Daniel: Yeah, I can get beyond the initial blocks with people sometimes, but almost every relationship begins with my having to disprove someone’s stereotype. When I’m at my best, I think of this as an opportunity to serve. Sometimes, though, it gets old. Robin: What I first liked about Magic was you and David, so different in many ways, but really taking care of each other and doing public service work I respected. I saw all that you were doing behind the scenes. I said to myself, “You didn’t have to be anything more for me to value you.” But, then I took over a lot of your work, and I felt resentful sometimes.

When I was growing up, our maid, Margarita, cleaned the house. I was studying to be an engineer, not to clean a bathroom or process salvaged food donated by the local grocery. We are still so tied to money values!

Daniel: When my dad was dying a year ago and I went home to help my mother care for him, I realized how much I had to offer, even with all of my limits.

David: I used to watch people shun you, and felt angry. Now I look inward and ask, “How am I still afraid of Daniel?” You’re a challenge and an asset for me. I love you dearly, but I’m only just beginning to learn how.

Bruce: I’m a relative newcomer to Magic. I never knew you as a walking, biking person. I find your symptoms and diagnosis vague and difficult to understand. I have some appreciation for all you’ve done in the past to make Magic, but I know that only secondhand. You were on medical leave for most of the year before I came and you’ve been searching for ways to serve without worsening your condition since then. So I have a pretty skewed picture. I enjoy our time together, and I’m looking forward to knowing you better. But I confess, I hesitate to make a long-term commitment to you. Daniel: Have I been difficult for you in any ways?

Bruce: As house manager, I sometimes wonder how hard to push on you to live up to the standards everyone else maintains. I think about what David was saying earlier about “style.” Daniel: I’m learning to live differently from the way I did in the past. I want to be able to do more than I’m doing now. Sometimes I’ll hurry and cut corners. I guess it’s a way of asking for help without saying anything, leaving loose ends for others to handle. I can do a bit more. Learning to value being as I am, rather than striving to be as I used to be or think I should be, is pretty tough.

Bruce: I’m sometimes a corner-cutter, too. I keep hearing these “Faster! Faster!” voices in my head. But somebody is left with my cut corners, and besides I think “Slower. Slower,” may be a better life.

Daniel: You face a different set of choices.

Bruce: Maybe, but at root we both need to figure out how to be satisfied, and either of us can choose to listen to “Faster, Faster” to the point where we feel we’re not enough.

Robin: I often wonder what you actually can do, Daniel. Sometimes I feel that you’re just stuck in your own way, and it has nothing to do with your feet. Then I think about how I might feel in your position, and wonder what right I have to second-guess you. What can I really know about how you feel, anyway?

David: That’s a tough part for me, too. I want to trust you to know what you can and cannot do. Then I think, “Are you just pandering, David? Are you actually getting in the way of his successful adaptation?” We’re such a small community that getting perspective is difficult.

Daniel: Having a recognized health condition with a name, I’m less likely to be accused of malingering. Marfan’s is a strange complex of symptoms, and my case is more than just Marfan’s. Fortunately at Magic we live closely. As I evidence integrity, you and others come to trust me.

Joan: You manage to do a fair amount here. You just need to be accommodated. I appreciate how much of the kitchen duty you take, and I think you’re almost a therapist to a lot of visitors, and even to the rest of us Magicians.

Daniel: I’m glad that people here can do the things I can’t, and that I’m able to contribute as I do. Usually I’m really glad to be here with all of you.

I feel I benefit so much. For example, going out is next to impossible for me much of the time. The classes and workshops at Magic bring the world to my door. Last year we served more than a thousand guest dinners. More than a hundred people from a dozen different countries came to visit. All of us together generate this scene. Any individual would have a hard time doing it alone.

Bruce: You asked me about ways you’ve been challenging for me. I feel you present me with some tough choices. I have an opportunity to tutor at Stanford next quarter. But you’ve asked for some help with your writing. My parents, grandparents, and friends will understand and approve tutoring at Stanford. I’d feel more “on track” with my peers in graduate programs and conventional jobs. As I listen to others’ voices in my head, I make their questions my own. Explaining what you and I do would be difficult.< p> David: That’s the heart of the matter for me. The “Daniel payout” is in becoming more loving. The other payouts are in terms of wealth, power, and status, which most of us Magicians have been encouraged and carefully prepared to seek since early childhood. What do we value? Really? To what extent do we show it with our lives? David: People who think about becoming part of Magic sometimes ask me about your contribution. I explain that you qualify for a pension and health benefits as a result of your prior work experience. They worry about your being a financial burden, even though you’ve been a net financial contributor to the community every year since you’ve been here.

Jeffrey: Even if you weren’t, I want to feel that we can take care of some people here. About half of us in this country are too young, or too old, or too something to care for ourselves. I want Magic to carry its fair share, and I much prefer the idea of directly caring for people in the community to paying someone else to take care of people we don’t know.

Daniel: People who feel burdened by me almost always feel burdened by the rest of you. I often feel a little sad for those who have so much, yet seem so needy. I like the way we’re able to flush out feelings of dissatisfaction, resentment, blame, just in the course of living and working together.

Robin: Sometimes when I’m in over my head with my own responsibilities, I’ll feel put upon by a request from you. You live so much of your life in your own particular ways. I have difficulty bridging from my way to yours.

Daniel: I avoid asking for unnecessary help. I think that showing self-reliance is a way for me to build your confidence in me. I just built a six- by two-foot planter box and hoisted it into place outside my window, and surprised even myself! But hardly a day goes by when the rest of you don’t offer me assistance; and most of the time, you respond pretty cheerfully to my requests. I appreciate that a lot!

David: Thanks in large part to you, I’m coming to understand that every person arrives here with some mix of ability and disability, and that mix is constantly changing. If we think that each day, each hour, with each person, must be tit for tat, we’ll live in perpetual fear that we’ll fail to uphold our side of the bargain and be shunted aside. This is the consciousness of the commercial exchange economy. I live in community to shed it.

Daniel: A serious disability may require more resources than something more benign. I want to think that I will be able to choose a path supportive of the community, if I become a drain. People often discourage me from even talking about this, but I’d rather live less long — with the knowledge that I contributed to the success of a community that gave generously to the world — than suck the community dry for a few extra years of my own.

Jeffrey: I returned to Magic after a five-year hiatus. You were no obstacle to me, Daniel. I think you’ve been great. You’ve always done whatever you were able. I remember back in the early days when we needed to raise some cash fast to pay off a loan on our house. You went straight out and got a job the next day. I’m grateful that you put up with the rest of us.

Bruce: I agree. Every day I think about how people in my circumstances step on people in your position. From you I’m learning that a big part of what makes disability so frightening is the treatment it elicits from others. And I realize that this is true at all levels of society. The subgenius feels inferior to — and dominated by — the genius. The All-American takes a back seat to the Olympian. What do we gain by all this competitive feeling? I want to live differently.

Daniel: I meditate on being calm with those who are afraid around me. I think that they are reminded of their own vulnerability, that they are confused and uneasy about withdrawing from me. Everybody wants to imagine that they’ll still be loved, even after losing their power. But too often we build relationships to share power. If one of us can’t deliver, “poof” goes the relationship.

Hilary: Daniel, you inspire me. You’re so good about looking for ways to grow, doing your best, and coping with the result. You seem really adept at being as you are at any moment, and accepting it. Sure you have your moods; but overall, you seem really good at making the best of your circumstances. Seeing you continue to adapt to your changing condition is a powerful lesson.

Joan: Sometimes everybody else here is so engaged in operating the household and the Magic programs. But not you, Daniel. I’ve watched you introduce visitors and new arrivals to Magic. You seem almost infinitely patient. Like any good teacher, you have a knack for seeing the steps to understanding, and laying them out so a person can take them one at a time.

Daniel: Some of these new people come initially for a specific project or program. I usually wait for them to indicate a broader interest in Magic before I engage them. A surprising number want to console me. Once they understand that I can enjoy my days, many are quick to offer help or engage me in other ways. Over time, I get a sense of who wants to share what with me.

Robin: You’re so positive, Daniel. That’s one of your biggest gifts to me. I’ve been spoiledÉready to be grumpy at the slightest provocation. Seeing you laughing with all your wires and equipment and your wheelchair, I often think, “If you can laugh, I can laugh.”

Daniel: I can laugh, but sometimes I dread that my condition will worsen. How long will I be able to forestall further decline? How long and how well will I live? I don’t know, but I like the feeling that I am part of a community that stands for what I care most about. I think of all the disabled people who struggle to live “independently” whether they are recognized as disabled or not, and I wish they were able to live more as I do.

So there you have a few slices of Magic. We’re up against all the familiar stuff. We’re learning that we’re disabled mostly by ourselves, and mostly enabled by each other. We’re actively seeking to expand our circle of collaborators. Write us. Call us. If we get on, we’ll find a way to be face-to-face.

About the Author

Daniel Bartsch grew up in Ohio and California with one older and two younger sisters. He relished exploring the out-of-doors alone and with friends, and enjoyed learning practical skills from an engineer father and a homemaker mother. Sensitized to ecological issues by a favorite teacher while still in grade school, he dreamed utopian dreams from an early age. In his twenties he bounced between college and “straight” jobs, and life as a free-wheeling vagabond artisan. Since 1980 he has been making Magic. His current interests include singing, drawing, herbology, and propagation of perennial edible plants.