A young man named Paul Corby, aged 23, was just denied a spot on a heart transplant list Change.org petition here. It is probably your fault.
If you donate to Autism Speaks, you are helping them kill him. If you support "awareness," the denial is in part your fault. If you are not actively combating the family centered tragedy & despair model of autism that Autism Speaks, Autism Society of America, & the other Big Autism organizations promote, you contributed to this violation of human rights.
I'm sure you are very offended right now. You're hurt & don't understand how I could think that awareness kills. You are genuinely shocked, apparently, that someone was denied life saving medical care because he is Autistic. I'm not. I can't believe you're surprised, honestly. So let's break it down.
As I have said before, awareness creates a sense of urgency and fear. People are plenty aware of autism. They know that we're 1 in 88-and they have been taught to associate that with things like lightning strikes and car accidents. They hear, from our so called advocates, words like national emergency, tsunami, public health crisis, epidemic. They hear our parents tell the media that we are soulless, that their real child was stolen from them, that we are damaged. The biggest organizations "for autism" fundraise with footage of our parents fantasizing about killing us, and they collect with promises to prevent and cure us. Everyone, everyone, is "aware"-this is what autism awareness is.
They are aware that when one of us is killed, the other unfortunates who are subjected to us rush to defend the murderer. They know that the people who claim to love us, those that claim to know us, those that claim to be experts in us call killing us an "act of mercy", no matter how loudly we protest. Then they move on to demand more services, to declare how expensive and how difficult we are, and yet you are surprised?
The public image that you have very likely contributed to is that autism is about our longsuffering families, about financial burden, about people who are so Other as to not even matter in our own stories, to not even get mentioned in stories of our own murders-when our murders are acknowledged by Big Autism at all. Usually ASA, Autism $peaks and the rest are silent on the matter.
So why are you surprised? This is the natural result of the narrative of burden and tragedy. By convincing them through your fundraisers and charities that we are so difficult that fantasizing about killing us is natural, you have convinced them that denying life saving treatment is the thing to do. That doctor may think he is doing the family a favor because of you. This is the awareness you pushed for in action. Thanks to autism awareness, the general public is convinced we do not have lives worth saving.
Blood is on your hands if you support this narrative. If you have donated to Autism Speaks, ASA, or any other rhetoric of tragedy institution, some of the blame right here is yours. If you actually are one of these organizations, you are using your funds and your publicity machine to feed this poisonous attitude to even more people, and that makes you a mass murderer. I hope you're proud of your "awareness".
I have to confess that in the early days of my son getting diagnosed (before he actually had been diagnosed), I really wanted to find something with a puzzle piece to promote Autism "awareness". I bought an AS sweatshirt. I didn't know any better. There were a lot of misconceptions I had. Since my son's diagnosis I have learned so much. That sweatshirt has been thrown out and I'm still annoyed about the money I wasted.
ReplyDeleteI now know about ASAN and a few other good organizations and groups. I'm now more suspicious when i hear an organization mentioned in the media that is not AS. "Is it like AS?", I always wonder. I'm moving to the States soon and will study special education. I wonder how Autism will be represented in my course. I wonder if I will have to argue with my teachers and fellow students or if they'll have a more neurodiverse-friendly attitude. Sorry, I'm just rambling...
Hello, I am glad and thankful for your open mindedness :) ! I also I want to wish you luck with your course and suggest that it is not a good idea to argue with the teacher or peerse . Not that you should not , You CAN argue but there is no point in arguing unless you have something to offer like an e-mail adress or name of someone you think they should talk to to understand the difference between media AND reality :| !.... DUSYA ....
DeleteI love your courage, Kassianne. You keep drumming the message loud and clear. It needs to be said. It needs to be heard. It needs to be understood.
ReplyDeleteThe denial, from what I've read, is criminal. The people doing the denying are people who should "know better". This story needs more, pardon my language, "awareness".
ReplyDeletePeople need to hear and be made to understand that Paul's life is not less valuable than anyone else's.
This is just horrifying.
ReplyDeleteAutism $peaks has a lot to answer for.
This is why Autism Speaks and other such organisations disgust me and why my heart breaks when well-meaning celebrities donate to these organisations.
ReplyDeleteI try to push a different kind of awareness with my blog, my posts, and how I live my life. I believe we need awareness of how much potential autistic people have and how amazing they are. We need awareness of how we learn best and what to do to help us. Not "cures" but understanding and acceptance that people are different.
This freaks me out! I just signed the petition, saying something like "I'm autistic and I'd like to think I could get lifesaving treatment if I ever needed it".
ReplyDeleteThis post is just literally perfect.
ReplyDeleteSpectacular post! Thank you for this!
ReplyDeleteLeah Kelley
I am so grateful that you open your mind and heart to share with me and to teach me. I have an extensive quote collection (>40 pages) to which I have added this one: "Acceptance comes from a place of understanding. Understanding isn’t generated by soundbites and posterchildren. Understanding takes work." ~ Kassiane S."
ReplyDeleteThe Autistic Self Advocacy Network, ASAN, endorses the Autism Society of America, ASA, on their website as an organization worthwhile to donate money to. I don't think ASAN has blood on their hands for promoting donations to ASA.
ReplyDeleteThe medical Center that made this decision, is fully responsible for that decision; no one else. And, it wasn't a decision based on autism alone; as autism was one of several factors mentioned by the medical center.
http://flappinessis.com/2012/02/01/silencing-ourselves-a-plea-for-civility-in-the-asd-community/
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ReplyDeleteBefore I am crucified will everyone on here please listen to what I have to say? I am on the spectrum myself. HelenAutie part of what you said is "You have the option of fighting along side of us. If you do not, however, you are the enemy. This is not in-fighting or sectarianism; be refusing to solidarize yourself with our anger, you have taken the side of the oppressor and we will resume to treat you as such."
ReplyDeleteWhat you said here disturbs me greatly and your hatred of your own mother, Kassiane, disturbs me greatly as well. You are both dealing in absolutes.
I agree with the concept of neurodiversity and autism rights. I am not your enemy because I have the same issue as well which I am working to this day. It is a struggle I am dealing with every single minute of my life.
It is called anger and hatred. Anger and hatred is a poison that will slowly transform you and the way you think and not in a good way. Helenautie your own anger and hatred is making you into the monster you wish to destroy. So is yours Kassiane.
How far are you two willing to go in destroying Autism Speaks and Alison Singer? Yes, they may have done some horrible things and I will not deny this.
In our quest to fight these monsters and boogeymen do we become the very monsters and boogeymen we seek to vanquish?
In our pursuit of others seeing our humanity and our very lives do we lose these things in the process?
In our quest to pursue justice do we lose our very souls?
Everything that Cube Angel said, I totally agree.
ReplyDeleteAlso? Autism Speaks actually does do some good things too. Are they perfect? No. Neither are you, by the way.
And...have you had a chance to do your due diligence and speak with the team of medical professionals treating this child, to see if there are possibly medical issues preventing the transplant? No? I didn't think so.
Being so quick to cry wolf before making sure you know all sides of the story just makes you less credible.
Cube angel, I have every right to hate my mother. Do go back to the April post, please. If you are going to come to a negative assessment about me keeping myself safe, that says far more about you than about me.
ReplyDeleteOh please. Spare me this Liberal Hippie Camus bullshit. I haven't the stomach for it.
ReplyDeleteThe notion that this sort of radical rebellion against the oppressor makes us into oppressors has been the position of relatively privileged 1960s camp liberalism and New Leftism and is massively privilege denying. The notion that I could be oppressive in my hatred unto violence against oppression is positively absurd at present because there is no chance that I could ever take power. And if your notion is that "violence is oppressive", I highly encourage you to disengage from the Smoke Pot Left and see the reality that is oppression and how it works.
Also, I find your second guessing of K's hatred of her mother light-years more disturbing that her hatred of her mother could ever be, especially considering the distinctly not small degree of physical violence that she suffered at her mother's hands. I would be inclined to hang a jury if K were stand trial for murdering her mother and jury wanted to vote "guilty" given the degree of abuse (FYI, she is not standing trial nor will she ever).
Reporting abuse to the authorities is the answer for one whom has been physically abused. Murder is not an acceptable solution to this issue, nor do I think it should be condoned as a potential idea for anyone else in a similar situation, not even as a hypothetical, as I see that as a form of ableism.
ReplyDeleteAnd, I did read the full text of the abuse from the April entry, and it is terrifying and I cannot imagine walking in those shoes, as I as an individual on the spectrum had a parent that likely saved my life decades ago, through unconditional love.
I was in a position to take that love for granted.
I personally could not comprehend the extent of that love, or understand how selfish I was, until I had a child of my own, and understood for the first time in my life, what it meant to truly care about someone more than me.
I'm not sure what country the author is from, but in the United States, if that type of abuse was reported by a child, along with the evidenced injuries, the parent would be looking at a potential conviction, and the child would be placed in the care of someone else, potentially outside of the family, through the court system.
It wasn't like that decades ago, but it is now, at least in the US. And it shows as cases of child abuse have been declining in the US, over the last several decades.
It is often the case though that children love their parents unconditionally even when they are abused, and would fear reporting them over losing whatever love they know.
I was lucky that I could be assured that I had my family as an ally, if no one else other than a pet, at times in my life.
I respectfully disagree with your post K, based on what I see as an objective analysis of the point, without direct reference to your experience, pain, or anger, and a view of my parent as a saint, which likely biases my opinion on the general intention of human beings, as good, whether or not some approved of my existence or not, in my journey in life.
Oh dear, Kate, you really don't understand how it works and that makes me sad.
ReplyDeleteAbuse reporting, it doesn't work when the abusers are a special ed teacher and a school psychologist.
Escaping them, & acknowledging that cutting off entirely, is the healthiest thing for me. And anyone who says otherwise is doing what so many people tell us not to do, they are "judging". And they are sitting in judgement from a place of utter cluelessness.
Not all families are loving. Some parents just couldn't figure out the condom. Some families are loving, but not all,& it's profoundly DISrespectful to try to silence & erase those stories.
(and that's a completely other post).
K, like I said I can't possibly walk in your shoes and judge anything about you on a personal basis.
ReplyDeleteOne of the problems in your post is that you do not acknowledge that you cannot do the same when you generalize the over 2 million people that support those organization's have blood on their hands for Paul Corby's heart transplant issue, as that issue was not an emotional one; it was based on medical criteria, whether one agrees with it or not, which can be over-ruled by another medical opinion based on medical criteria.
My point was a general one, as an alternative to murder, to the unsettling ableist suggestion that murder would have been potentially justified as an answer in your personal issue that was addressed; it is the only reason I furthered the conversation here, as I feel it would be irresponsible to stay silent on that issue; reporting the incident is the only answer for a child that is in danger from abuse wherever it may be coming from.
While the system does not always work, if a special ed teacher or a psychologist was actually physically or emotionally abusing a child, reporting the issue is the solution to the answer, and it does work, when the checks and balances in the system are working properly. If the system failed you or you read that it failed someone else, this is not an indication that the checks and balances in the system does not work in most cases to protect children from abuse from psychologists, special education teachers, or their families.
I definitely agree that escaping abuse was the best thing for you, or anyone else, as that is my point, in reporting abuse. And your story needs to be told; however what I hope you might be able to understand is that there is the potential for emotional abuse toward others, implicating them in a potential death that they are not guilty of, in any way, shape or fashion.
There is the potential for that when you blame what is happening to Paul Corby, on people or organizations that have nothing to do with the medical decision of Penn Cardiology Center, as even a Medical Director from Autism Speaks has publicly disagreed that Autism should be a factor in that medical opinion.
Oh are you finally acknowledging I have shoes???
ReplyDeleteNo?
Ok then go play elsewhere.
Yes, I am admitting you have shoes, and thank you for allowing me to provide another perspective on the issue, from a different pair of shoes.:)
ReplyDeleteI'm undiagnosed on the spectrum, raised in 1960-70's Arkansas, painful experience.
ReplyDeleteJump to 2010, our two year old son is diagnosed by a prominent Seattle specialist as autistic. We were in a room with my wife, son, me and a few professionals. My wife just deflated. She didn't go on to be an abuser, or wrought with negativity, but the straight honest way to say it is she was bummed.
I was elated, or at least some other very positive word. Its hard to put all the contributing reasons for this positive response in a blog comment, but at least some of it has to do with my own preferences in life....I don't like gregarious team sports oriented normals...it was good news hearing my son would be a lot like me (though I'm sure with different interests, he already shows this).
We even had an older aspie boy who is a genius at math come over and we paid him a consultancy fee (he was 7 yrs old and we paid $1).
Over the last 3 years I've been part of special ed groups and invited to a fathers-of-autistics group. Good god all these people are so angry and or so sad.
I've had some life experiences that made me deeply angry, on opposite ends. My early life in Arkansas sucked. Then came years of travel doing odd dangerous jobs, meeting all kinds of people, and I did well. Then in Seattle, at a far-left college, I met up with a culture as horrible as the worst Arkansas hicks. I feel their postmodernism and lust for anarcho-primitivism is a death sentence for autistics.
I've done something actionable with my anger at that culture and wrote a fiction that has a strong and extreme misfit autistic, and the main enemy to be defeated is not some mean kids, but the school curriculum and wider culture. The book is called Autistic Crow Computer.
A far better writer than I has delivered a book that 100 per cent celebrates autistics, and its made even better in my opinion because autistics are a mere component of a wider vision of reality. The book is Existence by David Brin. Simply one of the best books I've ever read, full of the most radical ideas for our future and what may be out in the Universe.
Back to the point of this whole blog thread -we are going to widen, not narrow, we are going to make it into the future, and there we will be.
Endurance is more important than Truth -Bukowski
So team sports is the new agrarian/tribal myth, anarcho-primitivism is the new fascism, and Autism Speaks is the new Eugenics Society.
ReplyDeleteAutistic people have been a huge blessing in my life. Mom works with autistic kids in the public schools and dad was a food aide at a state facility for people with severe autism. My aspie friends are the the ones I most enjoy conversation with: interesting, sincere and enthusiastic. Fun.
Going to school with budding engineers and programmers, we had plenty of aspies among us. One guy in particular found the team-building camaraderie of engineering culture frustrating, but everybody respected and liked him. Appreciation, not charity, led us to befriend and support him.
I know it's not all blessings from the other side. Autistic kids face a more threatening world and those who are supposed to be on their side sometimes respond to atypical behavior with passive aggression or hostility. Meanwhile parents of autistic kids deal with both unique parenting challenges and a message of utter hopelessness from every side.
But these kids and parents were not robbed of a happy childhood and happy parenting experience. Being young is a painful and terrifying experience for everyone while you are actually living it, and raising any child is more pain than gain. (The joy of parenting comes from caring about your children, not yourself.) An austistic child is a bigger challenge, not a completely unexpected one.
Some autistic people do live much shorter, more difficult lives and nothing seems to help them, but even severely autistic people often achieve far greater things than the experts would allow parents to hope for.
I once met a man who came across as a high functioning autistic person. He was from one of those large, quirky, antisocial, Addams Family type families. His mother is an expert on herbalism, etc. Perhaps because of her witchy interests, the mother physicians who assured her that her son would be lucky if he learned to walk, and certainly would never talk or ride a bicycle. She did her own research and came up with a training and diet program.
I don't trust snake oil and wishful thinking, but you don't hear about parents who simply accepted defeat and then had surprisingly successful autistic children. At least we can say autistic people benefit from the support of other people just like anyone else. By itself, that's a reason to stop feeding parents a message of victimhood.
But there's another point people keep missing: Autism is part of a person's identity. You are not the sum of your parent's aspirations, your DNA code, or even your upbringing. There's no consensus about what "you" are, but differences in brain structure, like the differences in some people with autism or cerebral palsy, often correspond to personality differences. Autism is not degenerative so there's no disease to stop, and it's not a change to an original normal brain, so there's no damage to repair. The way your brain was put together in the first place is just part of who you are.
In the olden days several types of people fighting for equality and self-determination today were called "monsters." But the word did not invoke hate and terror as it does today. It meant a Sign from God. Wise people had faith that folks with differences of the body and mind were a blessing to those who could afford to support them.
Today we can support many kinds of people, but faith is scarce, or spread thin, the burden on individuals rather than community. At the very moment when different types of people are finally able to assert their individual worth, we have an opposite pressure to eradicate all the scary differences that make us doubt and wonder.
Wow! I've never been so glad I didn't donate.
ReplyDeleteTruly, I'm just now becoming "aware" of autism, and thankfully, it's because I'm reading about it on blogs written BY autistic people. So far, I have read really uplifting things from them, but also some really horrifying things about some of those organizations, especially Autism Speaks, that make me so glad, and feel so lucky and blessed, that I chose this route to educate myself, rather than the PSA route.
How can they justify not having autistic people on their board? HOW? Their hubris will bring them down, someday. Karma is like that.
I signed the petition, good cause. I too am autistic.
ReplyDelete