In the first few minutes that a spinal cord injury is brought into an ER, one of the first tests they inflict upon them to gauge muscle control and response is to insert a finger anally to test sphincter response. When you’re in the spinal unit as I was when I was 16 you wear a gown open at the back and have a blue sheet under you a catheter inserted and if you mess yourself, no when you mess yourself they simply robotically change you, the sheets and the blue sheet in short the second thing to cut away from you in the ER after your clothes is your dignity.
When My friend mark and his wife were told their child was born with down syndrome 25 years ago, they were told if he lives to 2 he might make it to 5 if he makes 5 he might make 10 if he makes ten he might make early adult hood but he will never be educated and he will never have a job never love never marry or ever leave home. They were offered the chance to sign on the dotted line and start again, like he never happened because to the mainstream medical community it is easier to throw away the mentally and physically challenged at a early age into governmental warehousing so they can be trained from toddler years to be compliant to the system than is it to offer ongoing competent care to the patient their family and loved ones.
When I was baby in the first couple of years of the 1960’s, my parents were told one of my seizures would surely cause retardation so just put me away just sign me away to a home for the retarded and get on with your life.
We as a polite society like to think that surely in the 54 years since I came out screaming onto this globe that we have awakened, that we have become enlightened but alas we have simply invented a more polite way to suggest it. It is only through grass roots parent based groups for diagnosis such as Autism or down syndrome or cystic fibrosis or muscular dystrophy and others that any thing gets better.
If we were left to the mainstream doctor knows best system of old, advocacy would be frowned upon and research would be scoffed at and questions would be answered with looks of disgust and you would be still being told “trust me I know what’s best”.
One of the greatest things to come out of this amazing family based system of advocacy, is that we the disabled, our families and loved ones are encouraged to be our own loudest voice for change. We the people, with wheels under our asses crutches under our arms and guide dogs at our sides have become the army of advocates not only for ourselves but for everyone we the people can reach down into the remnants of the doctor knows best system and lift up with us to the light.
We have expos like the abilities expo that I recently led a symposium at, that comes to the New Jersey-New York area each year to show us the latest the best and the most innovative to make our lives better. We gather around computer screens all over the world asking and answering our own questions and in many cases the latest break throughs in the treatment of what made us different comes from our own efforts.
Out of this movement comes greatness, from time to time some greatness comes like the voices of the Paul Caunes screaming with an intellect and a passion that the abused disabled of British Columbia will not quietly into the goodnight like quite little gimps. Others come in the form of the Margi Tripani’s of the advocacy groups CIDNY, whom without there would be no AMERICANS WITH DISABILITIES ACT. Sometimes it is as simple a solution as the beautiful Kareemah batts, who refuse to let anyone fall short of their best self by showing them that if she an amputee can achieve sporting heights that surpass most able bodied then for the rest of us not even the sky can ever be the limit.
Tonight in a conversation with a great aussie artist I know, we started discussing daredevil stunts and words like insane were bandied about by able bodied folk when a picture of a bicycle poised to go down an alpine ski jump was posted. I took the side of “wow what an adrenalin high” my friends took the side of “must have a death wish” and terms like “I know where your coming from” and ” I know how you feel” were used. I know these lovely friends meant no put down or ill will, they were being kind and compassionate but I’m sorry unless they were probed to test sphincter strength and left to crap on a sheet or told the phantom leg pains were normal even though your leg was no longer there or have almost been thrown away by your parents at birth you will never know where were coming from and you will never know how we feel. I hope to whatever god you believe in you stay that way, because I care about you and wouldn’t wish the qualifying for this private club on anyone.
You see when whether or not it was your fault natures or a road side bomb in Iraq that paid for your lifetime membership for our members only club once you have been through hell and came out the other side and have grabbed what passes for quality of life with both hands you don’t ever again let go you never give up and you never accept someone else’s definition of sane safe or normal ever again. If wheels Fotheringham wants to roll down a 120ft alpine ski jump at 50 miles an hour and do a triple summersault in his wheelchair and land it or I want to climb North Americas tallest rock face with only my upper body that’s my choice because you see when he was born with spina bifida his chance to ever feel your kind of normal was taken from him at birth so every day he steps out of yesterdays definition into today redefines normal for today and then leaps into tomorrow that’s what he does to feel alive because only when you were not ever meant to be will you truly understand why we do what we do whether its ty belnap becoming a champion lifesaver on Australian beaches and beating out so called able bodied competitors even though he is a down’s syndrome adult or wheels landing a triple or me summiting el-Capitan or simple a severely cerebral palsic adult earning a college degree when he was never expected to graduate second grade we choose how we live we choose how we feel life and only by setting our own limits can we break free from the archaic oppressive ones forced on us by a society who would rather we not be here. I love all friends gay straight disabled otherwise abled or even yes the so called normal whatever that is and I believe in everyone’s right to live to their best potential all we the disabled community ask is we be left to achieve ours .Namaste