How times have changed, we hope

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.

4 thoughts on “How times have changed, we hope

  1. I one hundred percent agree with this post. I’m 18 and don’t have a ton of life experience yet, but throughout my entire school career so far I have kept on the high honor roll in school. At times when I go to a doctor (with my mother, my primary caregiver) they still only talk to her like I cannot answer questions about MY body. I also used to go to a summer camp for people with Muscular Dystrophy (my diagnosis) and there was a counselor there who talked to most of the campers there like they were mentally deficient. It was very satisfying to tell him (he asked about my school) that I was on high honors and to see the look on his face.

    • its disgusting that so called intelligent educated professionals still hold these archaic beliefs. stephen hawkins has long been recognised as one of the most intelligent man in the world but without computers he would be non verbal he is in a wheelchair for life yet he when he lectures great minds listen my young friend nadia like me has a neuro disorder which causes spasms when i was sufferring even though i am 54 and she is 16 when she gave me words of wisdom i listened the brain does not use a wheelchair it is just a fact that so many of the most intelligent brains in the uiverse hitch a ride on a disabled body i encourage you get the highest education you can because success is the greatest equalizer when you have phd after your name noone can talk down to you.
      when you make the honors list as a disabled person remember you roll there on the shoulders of giants like stephen hakins and when you arrive you have a duty to reach back and mentor the younger disabled and pull them up with you. stay in touch my friend you are my inspiration.

      • I agree with your comment so much. People never understand the mind of someone like us. Yes, there are those who either cannot communicate how smart they are, or who cannot function well enough, but the vast majority can do a lot more than just take up space!

        Thank you for your advice, I’m going to college next year, hopefully. I can’t wait to get our there and show the world what I can do. I’m hoping to go into a career that has to do with children so I can help out other kids like me who don’t have many friends. I want to show them that they can do anything they desire.

        I just want to say that reading this site is an inspiration to me because I can SEE that anything is possible if I try.

      • I write so that those who cant can have their voce heard so that those without a voice can speak and i realise if ths crap happens to me who am i to selfishly think it’s only happenning to me so when i encounter discrimination and i fight to stop it when the problem is solve it is solved for every single disabled person who may ever cross the pathof the person or corporation that was carrying out so with this in mind one fight at a time on both the australian continent and the US ( and via the internet all over the world now my blog is read in over 150 countries) we level the playing field

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s