isn't a straight shot and it doesn't
always mean freedom. I've tried all my life to escape both to and from things
that I feel but cannot see.
I spent the first few months of my life in
an incubator without the comfort of human touch. I was born three months before
I was due, weighing two pounds and twelve ounces.
The upside: medical technology saved my
The downside: my retinas were damaged from
receiving too much oxygen. I became legally blind. At the time, the doctors
suspected hydrocephalus, but they didn't diagnose it until it almost killed me
in my sophomore year of college.
many years on a mission to cancel out
my disability by frantically stacking up achievements, hoping that someday I
would find that final, magic accomplishment which would absolve me of the sin
of being disabled.
Loneliness and longing for fulfillment
have been the constant threads in my life, motivating countless escape
I guess I thought that if I were
successful enough, I'd escape from the "less than" feeling that quivers in my
guts. I've felt that my disability is a debt to others that I could never be
powerful enough to repay -- that no matter how good I am, I will always need
others to do things for me that I cannot do for myself.
No matter what I did, I collided with that
hard fact. I couldn't seem to accept it and carry on without shame. Then one
day, riding the bus, I met a fellow with a disability who was proud. He was
comfortable with himself and his disability. Disability pride -- wasn't that an
oxymoron? I had to find out, so I got involved in the independent living
movement he told me about.
Participating in the Center for Disability
Leadership program brought me up to speed and launched me into the disability
rights movement. My life and my thinking were liberated. I got connected with
powerful, wonderful people who were also disabled. These disability warriors
taught me a new way to live that frees me from my past.
When I was
four years old, I remember boarding a
blue van in the dark of early morning to travel to a school for handicapped
children. Lucky for me, I had a fierce desire to attend kindergarten with my
childhood buddy, Parry. My parents advocated for me to have that opportunity. I
shudder to think what my life wouldn't be if I had been relegated to the land
of low expectations.
early that being different is painful.
I became a master at hiding my disability. I did not avail myself of some
visual aids because they drew attention to my differentness. I went to
extraordinary lengths to be the same as everyone else. I could never fully pull
it off. Sometimes I wasn't included in daily activities because I was
different, but, ultimately, I chose to withdraw to avoid the feelings of
awkwardness and shame that rose up inside me.
Recess and gym class made me want to
disappear and die. I couldn't see the jump rope or the soccer ball. If I
played, I heard whispers and laughter, or the thick silence that goes along
with an exchange of looks between kids. I can see color well, so I "see" by
guessing what things are by shape, color and sound. I don't see faces unless
they're at kissing distance. So I couldn't see those looks but I knew what they
were saying. I began to hate my body, then physical activity, and finally
I remember boys telling me
they liked me, then laughing at me when I believed them. I learned to be syrupy
sweet so that people would like me. To win friends, I anticipated the needs of
others and ignored my own. If I were nice enough, someone might like me, love
me, protect me. Just now I am beginning to realize how much this "coping skill"
has cost me and others.
temporary relief by escaping. Food,
music, alcohol, and geographical cures worked for a little while. Food still
soothes me in the empty places and music is an expressive friend; alcohol cut
the edge and evened the playing field -- until I crashed and burned. My
geographical cures gave me hope that life would be better somewhere else.
But none of these things can protect me or
give me the comfort and freedom I crave. I need people in my life who love me
and accept me.
Eighteen months ago, before I learned
about the disability rights movement, I did not want to be associated with
anything, or anybody, that had to do with disability. I would not align myself
with the losing team or the stereotypes I tried so hard to defy. Today my
friends in the movement are teaching me how to accept my disability and carry
myself with pride.
I am finding out that the ways I've
learned to protect myself actually separate me from other people. Trying to
appear non-disabled is a lot of work and it keeps me ashamed and alone. I've
been disabled all my life, yet I have little idea of how to trust and include
others in my life -- let alone ask for help when I need it.
paradox in all this is that my efforts
to "overcome" my disability have made me "too capable to be disabled" and still
unable to pass for non-disabled. I can't win if I don't fit
Today I strive to accept and honor who and
what I am. I have friends who teach me how to live my life instead of defending
it. I escape the chains that bind me by living a 12-step program, participating
in weekly therapy sessions, and building relationships with my fellow patriots
in the disability rights movement as we make social change.
In working to free our people, I free