When I was growing up I had a cousin Darryl who was the same age as me, Darryl was born crippled blind and with cerebral palsy. In those days they used to describe his combined disabilities as being”minda” and he was always being put in minda house Adelaide. Minda house was basically a sanatorium where they had locked doors and we were told things like “don’t speak loudly and don’t moves suddenly and don’t upset him” when we would visit.
At the same time Darryl was there a girl who was in the same home called Barbie who was in her 20’s was severely cerebral palsic, but the one thing both Barbie and Darryl had in common was genius IQ. Barbie could do nothing for herself and was unable to speak but her eyes told you underneath she was immensely intelligent.
Barbie died from mistreatment in minda home, but Darryl was released to his parents he went to school he got degrees he started a computer business in the early days of computers and made his fortune. Despite personal wealth still in the eyes of the public he was a “minda”
Daryl is still alive and from what I’m told he owns his own home and lives with a guide dog and minda home had a name change a couple of decades ago and they call the condition cerebral palsy and people are treated as humans are they not?
Daryl was born in the early 1950’s and except for the name change I’m sorry not much has changed, I am epileptic and I’m still treated like don’t make a sudden noise or ill seize or when I’m at the Rockwall club someone bends over and says “oh poor dear are you waiting for someone what a pity you can’t climb” and whenever someone is confrontational or pushes or shoves me when I’m out they always assume broken body broken mind.
When the mayor of new York says”New Yorkers shouldn’t be out catching cabs anyway if they need to go somewhere they should use family or call ambulances so they’re safe” he is elephant stamping the public opinion that once you’re disabled your life ends if you want to work that’s what sheltered workshops are for.
I have a young friend Nadia bon, she has cerebral palsy call her retarded or treat her like she is nothing and you better duck she has hutzpah,she is on the national honors roll and climbs rock walls for fun. Matthew is a friend of mine he is blind and he climbs rock walls he doesn’t need a nurse to do it. I have epilepsy and neurological conditions making walking and standing something of the past as well as PTSD, and well my regular readers know no one puts mia in the corner . No one except nurse who ask “shall I wait for your care giver?” or when I’m in hospital doctors talk to my wife as if I’m mentally deficient and she is the only one who could comprehend big words. Yes many in our community need carers and there is no shame but what the government and the medical community needs to do not to mention the community at large is yes make allowances such as ramps and elevators and bathrooms but start by assuming we are competent and we can deal with our own medical care and let us tell you if it’s not the case.
I can tell you I have rolled away from dozens of doctors and therapists, hospitals and rehab centers never ever to return because they still see me coming in the door and in their minds the words “no loud talk no sudden movements don’t upset them their disabled” roll through their minds. Our chairs might be shinier and lighter and more high tech, but sadly while we have the mike box designs of this world to make the equipment we don’t have a design genius who can rebuild the humans unfortunately and until we do the barbies will still die from neglect. Until attitudes change the Darryl’s will still have their life’s and their talent and their ability to live shortened from the austere ideas from the early 20th century that despite all the objections from those in power still sadly exist.
So to the lady that wrote today that I might be good but boy scouts and churches can help too, sadly boy scouts don’t have a badge for freeing a intelligent human to live their best life and the churches just want you to pray but with friends like Paul Caune of civil rights now British Columbia as the prime example of the greatness being wrongly locked away maam I’ll leave cookies to the scouts and bigotry for the churches and if you don’t mind I’ll keep climbing the rock walls of governmental red tape to improve our lot for the barbies of this world who if the medico’s of the day had only listened could have been a Nadia or a Matthew or a Darryl if their negligence hadn’t cut her life so horribly short.