Doubt #15, silver gelatin print, ©1994 Misha
Misha Gordin's work can be found at http://bsimple.com/index.htm.
Acting for Myself
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.
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.
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.
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.
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
My model of a protest rally was
formed from things that went on in the '60raucous, 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.
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
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
it just doesn't work for me to be on the front
lines right now,
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.
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
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
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
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.
know that I have a responsibility to fulfill my own
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
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."