Today I participated in my
seventeenth Empire State Games for the Physically Challenged, and because I am
now twenty- one years old, it was my last competition as an athlete. For those
of you who do not know, this event, affectionately called the ESGs, is a series
of athletic competitions for people of all levels with all types of physical
disabilities. They include wheelchair races, walker races, and wheelchair
basketball games. What makes it unique is that one need not be a trained or
competitive adaptive athlete to take part; for many of us, it’s just about fun.
But the important part is we are given the chance to compete, with people of similar physical abilities, a rarity for
many of us, especially those who attend a mainstream school. The Games are
about us, people with disabilities, who have both the right to win and the
right to lose.
While the outcomes of the competitions
do not matter at all, there is something beautiful in having the chance to lose
in addition to the chance to win. It means we have been included in an
authentic competition, rather than relegated to a contest where we either
cannot play due to our disabilities or are given the stock patronizing speech
that "everyone is a winner". Too often, when it comes to recreational
activities for people with disabilities, this speech is given as if we need to
be protected from the ordinary possibility of losing a race. Winning and losing
is part of life, as a person with a disability can clearly understand, based on
the societal obstacles presented to us on a daily basis. It helps us learn, to
celebrate when we win, and, if we are taught correctly, to celebrate even when
others win. So no, it doesn't matter if you win or you lose, but it sure feels
good to have the chance to do either. When both options exist, it means you
truly competed.
However, in the years that have
passed since I ran my first race at the age of five, I have learned a lot of
things far beyond the context of the competition. The races and their outcomes
are but a small, small part of the sweet lessons I learned here. To look
around, is to see people of so many different varieties, coming together,
united by the disability experience. Here, we have shed the stereotype that
being a member of this group must mean the end of the world. Be here for a
minute, and it is extraordinarily clear that it is not the end of the world,
but instead, an opportunity to experience a part of it that so many other
people will never know or appreciate.
It is here that I have some of my
earliest memories of being at peace with my body. I relished in the strange joy
of seeing other people whose long, spindly fingers were always tensed, as if
all the energy of the universe were constantly pulsing through them. Other
people whose thumbs were tucked snugly between their middle and ring fingers.
Other people whose legs shot out into spastic excitement when seeing a friend,
or whose inner emotions were a secret only for a few moments, before being
given away by an unruly arm or foot. I remember as a small child being so
excited to see that other people "like me" were out there, and to be
in a place where our quirks were something ordinary, or even something of which
we could be proud. I still get that feeling sixteen years later. I am "OK”
this way. The thousands of TV shows, magazines, plays, books, and posters that
are yet to feature a person that looks like me cannot steal the value of who
and what I am. My story is visible here, and the world, so often allowed to
make it invisible, must look. The thing is, if they really look, they will not
at all see what they have been taught to expect. They will not see people who
want medals for existing, or people who can only see grief in that which they
have been dealt. They will see people, whose circumstances are perhaps
extraordinary to some, doing ordinary things. Being happy. Being proud. Being
who they are, both in spite of, and because of, a disabled body marked by
“otherness” in the eyes of society. That is what I learned in seventeen years
of taking part, and I hope other people will continue to learn the same. As I
crossed the finish line for the last time, my five-year-old self and every self
along the way was alive in me again. When I looked out at the crowd today and
saw hundreds of younger children, who hobbled with my familiar gait in tiny
walkers and butterfly braces, my heart was warm. I was inspired. But not for the
usual reasons. Not because I wanted to call them “inspirational” for doing what
other kids have the chance to do by default. Not because a kid on a walker
running a race is brave, or because I found the nearby clown accosting us with
stickers to be very funny. But because I was smiling back at my younger self,
telling them, and telling the child I once was, that they were going to be
okay. That it was okay. That living disabled would never be easy, but that it
could be good. That the vessels that carry their spirits are not broken, and
that they should always be proud.
Next year, in “my retirement” from
the Games, I hope to volunteer with the rest of my “geriatric” friends who have
aged out, and happily give the magic to other kids, while we cackle about the
steady decline of our aching joints and our hamstrings that probably resemble
stretched out rubber bands, a dark comedy show all our own. But more than that
I look forward to seeing the next generation find out who they are, laugh at
the absurdities of the crowded track, scan the price tent for ironies like a
Twister Board, and make a skit character of the seemingly legless stuffed bear
with a cone on its head at the mini golf course. I look forward to seeing them
grow into smart, funny, witty, and proud people, unafraid to be sculpted by
life, in spite of and because of
their disabilities.
To find out more about the Empire State Games for the Physically Challenged (Victory Challenge), see the following link:
www.nassaucountypcgames.com
Below is an essay I wrote in 11th grade, inspired by watching my shadow along the track. It still speaks to me today.
Below is an essay I wrote in 11th grade, inspired by watching my shadow along the track. It still speaks to me today.
"Even my shadow is different. The small outline of my figure
perches on the silhouette of my six-wheeled ride, moving in a slow, crooked,
asymmetrical dance. Moving through life this way is indescribably natural. With
one slightly twisted hand resting on a well-loved joystick, I navigate my
vessel from my own vantage point, somewhere below the world’s eyes and above
its sneakers. This is my perspective, a window through which the colors of a
vibrant culture glimmer. At times it is difficult for others to see the light
that shines through my window everyday, difficult for them to understand what
satisfaction could lie in an existence that is on the surface marked by the
things society calls abnormal. I see these things as just ordinary, because for
me, quite simply, that is what they are.
I am so much more than my disability. I am deep in my
thoughts and rich in my desires, so many of which are shared, so many of which
draw me into the essence of what it is to be human. But the elements of me that
venture past “normal” matter and they always will. I love the soft buzz and
click of my twenty-four volt battery; on a busy street where the sounds of
creation converge, I know that I fit, that the rhythm inside of me is strong
and rare and worthy.
It is when I watch my shadow, untamed and free along the
sunlit earth that I am most aware of beauty. With a variety that places us in
the company of butterflies, we are brilliant and glorious and essential to each
other. It is the light shared between us that allows our shadows to dance."