Doubt #15, silver gelatin print, ©1994 Misha Gordin
Misha Gordin's work can be found at


Acting for Others,
Acting for Myself

Michael Perreault


The recent Nike advertisement that described disabled people as "drooling, misshapen husks," set me to thinking about what happens when the need for political action comes into conflict with my own need for emotional balance.

The Nike insult became a hot topic on an online discussion group I belong to. One guy in the group, I'll call him Hank, came up with a lot of demands for action. When it became obvious that not everyone was going to respond in precisely the way he'd dictated, Hank reacted in a way that a lot of us found downright abusive. I realized, then, that I was absorbing all of his "stuff," and feeling very bad about myself as a result. When I feel like that I've learned I can't stay in that place emotionally. I understood where Hank was coming from, I even agreed about the issue, but it's not a fight that I would choose to join on his terms.

Part of my strong reaction emerges from a lifetime of having people tell me precisely how I'm supposed to be disabled, or how I'm not supposed to be gay. After enduring a lot of bad experiences, I've finally learned that I have to decide these things for myself, that I can no longer internalize other people's values as my own. I can't do it somebody else's way. I can't not limp the way some people would like. I can't always summon the energy to do things that people think I ought to do. I have to disengage from what others think I ought to do and focus on what I can do. It's the only way I have something to offer.

Like it or not, there's a direct connection between the details of my personal life and how I engage, or decline to engage, politically. I'm a child of the 1960s. I saw plenty of antiwar and civil rights stuff. I took part in some demonstrations, but I was never an activist. I got to see people beaten up; I saw a man's face ground into the pavement with a burning cigarette still in his mouth. I decided that that was not my way of doing things, but I felt guilty about it. I felt I should be doing more, paying back to society. And I realized that that feeling was coming from my own place of inadequacy. I noticed that a number of my activist friends who set out to save the world were incapable of having intimate personal relationships. It seemed as if they hoped that by fixing the outside world they could repair their own interior world.

I need to work in the opposite direction, from the inside out. The consciousness-raising group I participated in during the 1970s taught me that simply being an out gay man, a man who made love to another man, well, that was a revolutionary act in itself. That's when I realized, too, that only actions I take on my own behalf can be the seeds of a larger activism, whatever form that might take. For me it's a continuing process. I don't disrespect those who are out there on the front lines, but I realize they're doing it for their own reasons.


Thinking about those friends of mine who were good at activism but miserable at human relations, I guess I'd have to admit that in the interest of social progress some people might have to sacrifice their personal lives, but in order to achieve both I suspect you need to be an extraordinarily gifted person. That kind of selflessness annihilates me. Unless I take care of my own needs I cease to function. When that happens I not only fail myself but I let down the people I've committed to helping. If I feel guilty because I can't join the front lines, my inability may make me even guiltier, but it does not produce the ability to change my actions. It's a self-sustaining cycle. I've learned that finding myself caught in that loop means there's something wrong with my thinking process, because I don't believe I was meant to be miserable! To be an effective activist I think you need, at some level, to be energized by what you're doing, not depleted by it.

Today, I'm more concerned with finding ways to fulfill myself. My involvement as a performer with AXIS Dance Company energized me because I felt that what I had to offer was what AXIS wanted. The same was true of the Able-Together benefit I worked on, but in both cases I had to respect my own physical limits, and I learned that I need to respect emotional and psychological disability limits as well. I'm convinced that those limits are very different for someone who's been disabled from birth or early childhood, like me, than for someone who becomes disabled after his personality has been formed. I feel like I have no separation between who I am and my disability, whereas I think someone with a later-onset disabling condition knows a sense of loss. Because they know what they've lost they can more easily separate the self from the loss, and can locate a place of power within themselves.

The conflict between recognizing the need for reform and the (sometimes) inability to press for it results in a difficult irony: Many of those who are most disabled and would most benefit from social change are often (not always) those least able to fight for change. That makes it tough for disabled people to cooperate on action for change.

Many years
when ADAPT staged protests here in San Francisco, people were getting out of their wheelchairs and crawling on to cable cars at the Powell Street turnaround, a big tourist spot. The image was spectacular. I participated in some of that and ended up going to a rally in Union Square.

Doubt #8, silver gelatin print, ©1994 Misha Gordin

My model of a protest rally was formed from things that went on in the '60—raucous, dangerous times. Contrast that with what I saw in Union Square, where people with mikes and bullhorns were trying to get chants and songs going among a group of people, many of whom looked as if they'd been disabled their entire lives. Nobody had a voice. People had no power coming out of their mouths, literally. I, too, felt a lack of voice that day. Today, I think that we do have more of a voice, partially as a result of rallies like the one I attended.

More recently I've been associated with many disabled people, through AXIS and Abe-Together, who are functioning at very high levels in their professions. That fact alone can only contribute more force and power to the so-called Disability Movement. By excelling personally, we move the movement forward. Simply by being in the world we make progress. In that way, for all of its inadequacies, the ADA has helped.

Today there's more likelihood of someone in a wheelchair getting into a restaurant, for example. I talked with a friend from AXIS about this just a couple of days ago. In the past she could easily have been denied access to that restaurant, period. That's no longer the case. Now of course, you might need to decide if you want to insist on a comfortable table in a good location instead of being relegated to a spot near the kitchen door. Sometimes when all you want is a pleasant evening out, such things aren't worth the hassle. We have to choose our battles.

One thing we got from demonstrations and the ADA was the chance to focus on our lives more successfully. If we get to be seen more, if we get better educations and fuller employment, if people are forced to deal with us as more ordinary parts of the general population, then we'll impact the lives of nondisabled people significantly and things will change even more. Ultimately, the Movement, Crip Liberation, whatever you want to call it, is about liberating individuals, so we need to continue bringing to fruition the worthwhile things in our lives, all of the things, personally and professionally, that have to do with our autonomy. That's where our power comes from.


Although it just doesn't work for me to be on the front lines right now, I need to emphasize that my position is not about negating the need for activism. That kind of action is necessary. I'd be the first to admit that without it we would not have the ADA, for example, which has become a platform where we can stand to achieve more and better results. But I also believe that there's more than one way to contribute. If some of us can stuff envelopes, say, or make a financial contribution, well, that's not where the glory is, but we might then be able to maintain your own lives and avoid the feelings of self-destruction I mentioned when I began writing this.

I think that the validity of different actions is something that Hank refused to admit. His position made me feel like I was being told what I had to give. There was no sense of caring and support coming from his direction. He was an ideologue. I can't function under those circumstances. My experience with someone like that is they have no intention of listening. Instead of getting angry, I simply needed to get out of there, to flee the scene! I wish I could have been angry.

I wish I could have been angry as a child. My childhood experience was: You should have this surgery, it will make you walk normally. You should have this physical therapy, it will make you feel better. I absorbed all of that as evidence that I'm NOT normal, that I'm wanting, that I'm something that needs fixing, and nothing more. My mother would say, "When you walk, put your left hand in your pocket, you'll walk straighter." I didn't have enough sense of self to reply that I needed to have that hand free for balance. All of this reinforced the idea that I was the defective one. So when I hear someone like Hank, what I hear is, "You're not good enough." Now, finally, I have enough of a sense of self to say, "Yes I am good enough. Fuck you." When I was a kid I always felt that I didn't measure up to my able-bodied older brother. Well, now I can look back and I'm able to say, "You know what? He didn't measure up as my older brother. I'm disappointed in him.

There are so many half-buried things in my life that made me feel embarrassed and ashamed, that gave me that "not good enough" feeling. At the end of my first year at college in 1967, I didn't want to go home, I wanted to stay in Milwaukee because I was just in the process of coming out. The only last-minute job I could get was as a door-to-door salesman, selling potholders and dish towels, all that kind of bullshit, for an organization called Disabled Products. In effect, I was selling my own disability. That was the part that made me embarrassed. But it was the first job I got on my own, so that part made me proud.

The job involved walking all day long, and climbing people's front steps, and having customers react to my disability. One woman said to me "You don't look retarded." Another woman refused to talk to me until she saw me walk away from the door. Then she called me back. She was crying. She said, "Oh, I'm sorry. If I'd known you were like that I would have bought something. Here's a quarter." Somehow I made it through the summer and managed, just, to support myself for the first time. Talk about mixed messages.

Back in my hometown I had a friend who was six years older. I'd met him in orthopedic school. Dennis was significantly disabled with CP. He could walk, but he looked like a windmill that was about to fly apart. Dogs would attack him because they thought that he was attacking them! He wanted to have a job, he wanted to be self-sufficient, but he never got the encouragement or experience to know how to do that. After my summer-job "triumph," in my self-righteous way I said, "Dennis, I did it. You can do it, too." In the course of trying to help him, I talked to my brother, who got him an interview with his company. My brother let me know from the start that his reputation was on the line, that Dennis had better show up.

Well, guess what? Dennis didn't show up. He couldn't face what was ahead of him. He said "yes" all the time because he knew that's what people wanted to hear and also because that's what he wanted to say. But, I realize now, he had no sense of self that was sufficient to make him feel he could accomplish anything. How could he, after all? He had been denied a full education and his parents had never encouraged him to make a place for himself in the world, because they didn't believe he could.

Well, here's the part I'm most deeply ashamed of: I had a conversation with Dennis in my car, telling him how disappointed I was at his failure to show. My brother had stuck his neck out, I had stuck my neck out, I had supported myself that summer, he should be able to do it, too. Should, should, should. And what I did to my friend that afternoon made him cry.

Dennis cried in front of me. I was a significant factor in making him feel annihilated. I hate myself for having done that to Dennis, but I'm glad I can recognize now what I did. I did it to him because it was done to me and that's all I knew how to do. I wasn't offering my friend Dennis a damn thing but my judgment.

Now I know that I have a responsibility to fulfill my own potential, not someone else's idea of what that might be. I have the right to not put myself out on the front line, if I so choose, and the right not to feel guilty about it. If what we're all working for is a worthy goal, destroying ourselves in order to reach it can't be the right strategy.

© 2001 Michael Perreault


Michael Perreault last appeared in BENT when he was interviewed about his participation in AXIS Dance Company. At that time he observed, "Stepping into my own gayness and disability has convinced me that survival, tolerance and acceptance are not enough. My life is a performance that I want celebrated. I look to our being celebrated."


BENT: A Journal of CripGay Voices/January 2001