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This whole ARK rally has had me tongue tied and given me a bigcase of writer's cramp. Months ago this and the Oprah email is what made me post in the first place and I put so much feeling and heart into it's hard to retell it all over again. But I guess this is par for the course of being a parent and friend - having to try and retell the so-called "do gooders" what the real deal is.
I think of these type of parents who say they are rallying on "behalf" of autistics - please pay close attention to choice of words/semantics these people use as it shows their mindset - much as if they were politicians. Politicians set the rules and standards by which we must live our lives,however politicians do this without any real sense of reality. The politicians who govern special education but whose own child is neurotypical. They dont understand our reality they dont understand the issues we face or wil face in the future.
Look at why parents want to go to this rally... to scream to the nation, "fix my child!" Their reason for going is purely a selfish one. And yet they have the gaul to call autistics who have spoken out against the rally as selfish and "tantrumming". All they are focused on is their own child. So focused are they that they dont see the whole pictrre or the real world. So focused are they about their child that they will even harrass and send hatemail to an autistic person. Most of the parents going dont even make their ownselves aware of autism!! They arent aware of the issues!!! They arent even advocates!! All they want is a cure. We are split on the word cure folks.
Know what Id like to cure?? Id like to cure the ignorance that surrounds autism. Id like to cure the abusers who think ist "ok" to use restraints on our autistic students. Id like to cure the parents who allow the school to use restraints. Id like to cure all the low functioning parents and make them accept their child for who and what they will be. Id like to show them what the message behind organizations like ARK and CAN say to autistics - "you are a financial and emotional burden to us and to society - oh if only you were normal"
How many of these parents even know about the dangers and issues? How many of the ones who cry at night over their "poor pathtetic" child actually cry over the fact that Peter Singer's of the world are fighting to extinguish all with disabilities? Do these parents fight that? No they arent even aware - all they care about is their own selfish need to cure their baby.
If a cure is found all will be right with their world. Well it isnt and it wont be. If all the parents stood up and demanded services and demanded civil and human rights for our loved ones it would be so. But most have their face in their hands unwilling to make a stand for anything other then a cure or research into the latest pill or injection. Those parents actually do me and my son more harm then anything. In their selfish quest for a quick cure they step over everyones basic needs and rights.
Am I the silly one who is working to secure services and education for my son so that he will be an educated and effective autistic? Am I ignorant of autism because I dont work tirelessly to inact funding for a cure? I fight for my son and others to be labled a student. I fight for creative teaching methods. Of course most dont care for this as it means hard work. Damn straight they call me when their child is abused at school but they stay away from me when it comes to educational matters. See they dont want to learn how their autistic child learns - they just want their child to no longer be autistic.
You should be rallying for services, education, advocacy for all, living choices, life skills training. My son and others need those. My son and others need your support with all that hard work. Its so easy to look into a camera and cry about your disabled child. Know why your so scared of the your childs future? Because you havent bothered to secure one for them.
Think it is hard getting services and help for him now?!?! Let me know how your and his life is when he turns 18. No wonder you all want a cure since your childs future clearly must mean to you instiutionalization! Not for my child! I am demanding that he gets the tools and services he needs DESPITE your rally cries of cures. My son will succeed DESPITE medical research and social ignorance. It wont be because of this rally it will have to be despite it and despite you and how you view him.
You see your child as a disabled gene - fine - that is your childs loss and edge and a attaining their best level. But how dare you say autism is a disease and demand that money be taken away from the few services that he has in order to fulfill your need to have autism not be part of your life. You can not have both - RESEARCH and SERVICES. Research is fine but look at what most are crying for - MEDICAL and GENETIC research - personally that scares the hell of me. Why not research into what promotes the most benefitial impact on education and life?
Why couldnt ARK work with autistics instead of bash them and treat them like most of society does? Because they dont care about autism, autistics or the needs and issues. All they care about is what they want.
One day they will see that their cure mantra did more harm to their child medically, educationally and personally then any feature of autism ever could.