Thursday, December 18, 2014

For God's Sake Stop Speaking

"Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our (autistic) loved ones…as Saint Francis did with the leper." Suzanne Wright Speaking At the Vatican

Dear Mrs. Wright,

I don't know you. We will never, ever meet. But I need to insist that you cease insulting my son and the children of millions of families by continually inflicting your frightening opinions of autism, autism families, the Wright brand of mandated policy for autism and your depressive views of what our lives are like on people each time your speak publicly. 

You and your husband have this huge platform and you use it to equate autistic children with people affected by Hansen disease? When I heard that part of your latest unfortunate speech I had a tough time keeping down my dinner. How dare you?  My son is not affected by disease. But you just keep on going there, don't you? For God's sake  stop insulting my son and all his peers.

Apparently you also didn't know that no one uses the word leper and hasn't for years because it defines the person by their health condition. The appropriate term would be a person affected by Hansen disease. So you've managed to insult that entire community as well. (Please note Hansen disease is curable and those affected by Hansen can live with their familes: click here for more information.)

Your insistence that your tragic ideas on how autism should be viewed, managed, and treated be forcibly imposed on every country in the world is frightening in its scope and ambition. The very loud horn of the autism apocalypse you keep blowing at the world is sad because there is so very much good you could do. I cannot grasp this hate filled fear mongering in someone who has a neurodivergent grandchild. I would think you would want to use every means at your disposal to insure the world accepts him and supports and accommodations are made for him to actively participate in every community. I can't help but wonder how he feels about a grandmother who speaks publicly about how difficult his existence is on his mother as you did in your previous unfortunate address to Washington.

 Because I spend a great deal of time with colleagues  like your grandson, I know that presuming a child with limited expressive speech has no understanding of what you are saying is a large mistake. The most important lesson to be learned from the story of Carly Fleischmann is that when she was able to type, she told her parents that she was subjected to years of them berating her while she was right there. She understood everything she saw on every media around her. She went through waves of self loathing because of it. That should have been enough of a wake up call for all of us with autistic children and loved ones. We should respect our loved ones, regardless of degree of visible disability, enough not to speak ill of them.  But you continue to be stuck in the concept of disability as a disease. Rather than fight for the accommodations,  and the furtherance of technologies needed to help make life more accessible for autistic children and adults, you bellow that autism, like the boogie man, is coming for all of us. If your opinion was not being forced upon us and if your comments did not constantly insult autistic people of all ages, I would say, everyone has an opinion. But you and your husband keep using your power and influence to dictate to the rest of the world how autism should be viewed and that puts statements like the vile thing you said in the quote above squarely in my business. It puts my son at risk by implying he is in a condition equal to someone affected by Hansen disease. You don't dictate how my son's disabilties should be viewed or defined. You don't get to mandate how my son's life should be lived. You don't have that right. Having a grandson with my son's neurology doesn't give you the right to insult autistic people either. 

Disability is the world's largest, and most maligned minority. Like so many pioneering parents and grandparents in the Down community, you could have lifted your grandson up. You could have led the way to life changing policies by standing by him and by trying to reach out to prominent autistic professionals in a real way, with respect. You could have joined with the entire autism community and sought points of policy on which everyone agreed. When Autism Speaks decided to try and dictate federal autism policy without regard to autistic advocates,  parents, other autism organizations, in fact anyone but yourselves, I assumed the backlash would make it clear that your personal opinions shouldn't drive an entire nonprofit no matter how much wealth and power you have because your mandating your distaste for what my son and his peers are is unacceptable to me and literally hundreds of other people. Instead, you are now involving the Catholic church and using your massive privilege to inflict the agenda you couldn't mandate in Washington on the world? Wow. 

By the way lighting public spaces blue neither informs nor aids my son or his peers at all. No amount of offensive puzzle pieces sold in too many different ways and shoved in my family's faces because our son is autistic helps either. 

Stop. Just STOP doing this. 

Autism organizations should be dedicated to greatly improving the  lives of Autistic people and by doing so, improving the lives of their families. They should not be dedicated to insulting them and demanding the obliteration of any variance in the genetic code that produces differences. That you see, is a slippery slope because everyone has an opinion on what should not exist. I know. I am a Black woman. And there are quite a few people out there who think I should be remade to conform to white people more. I don't need blonde hair. I need to be accepted for who I am and where discrimination exists, I need it recognized and dealt with. That is justice. That is the standard that should be set for disabled people as well. Comparing autistic loved ones to people affected by Hansen disease is just scary, because the comment stigmatizes those affected by leprosy and implies that autism is akin to leprosy, a chronic bacterial infection.

Your very loud, seizure inducing awareness campaigns are nothing to be applauded. They are actually harmful to autistic children and adults, you know the people you are supposed to be helping with these efforts.Truly helping would mean you doing the right things. Things like sitting down with your board and making some real decisions on how you can include autistic professionals as equal partners in your organization, so you can move forward without constantly insulting most of a community you insist you speak for. Do you have the kindness and ability to shun worldly wealth, power and pride as St. Francis did? It takes that kind of humility and courage to invite self advocacy organizations, disability rights organizations, and include other legitimate autism organizations in any policy making process before dictating policy and agendas to the world. 

It should never be implied in any way that people view their autistic loved ones the same way a Catholic saint viewed a person affected by Hansen disease. Parents and care providers aren't martyrs or saints. They are people whose job is to take care of their children and loved ones. No autistic person should be viewed as a diseased or damaged person. You were busy dragging St. Francis into this. Wow. He would have been horrified. Shame on you. Shame on you.  

For God's sake, stop saying you are speaking for the entire autism community. You do not speak in the name my son or me or my friends and their children. Stop generalizing the misery of people who are unhappy and blame autism (when they need to look in the mirror)on us. Stop gaslighting autistic people and their families with this litany of derision and doom. 

For God's sake, STOP.

14 comments:

  1. I agree with what you are saying. I am the mother of a beautiful sweet and extremely smart girl that is moderately functioning Autistic daughter. She is perfect in every way.
    However, I don't think that you needed to bring race into the picture. That is not what this is about. The only people holding on to racial issues are people who are not White. Most of us are over it. I know there are parts of the country that have some racial issues still. But even some African Americans, which is actually just American, unless you are really from Africa, will tell you that many problems attributed to race are actually due to behavior. Not color, behavior. I am White. Very White. I am actually a minority. This country is one giant melting pot. Fully white people are being phased out. And did you know that there were actually more Irish slaves than African? That's right. Irish slaves were cheaper. My husband is Irish. He does not hold a grudge and cry "abuse". Irish people have gotten over it. They have let the past be the past. We all should. This article or letter is very important and makes excellent points. But race has no place here. It simply is an issue that is self perpetuating. We all just need to move on. If you yourself were held in bondage, I'm sorry. That is horrible. But chances are you weren't. We ALL need to let it go.

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    1. This is Kerima's blog, she can bring here whatever she wants and I am glad she does.
      White people don't have bad racial experiences to forget. We don't have to get over anything. What you say doesn't even make sense.
      If Irish people have moved on, I can safely infer that the color of their skin helped. We, whites, and privileged while white, should shut up and listen, and try to exercise empathy.
      "Behavior" is not different from race to race. We all have human behavior. This is a very racist statement.
      But the most appalling is you telling Kerima she should deny her experiences and "move on". And only people who are physically abused for being black, or enslaved, or beaten have their experiences validated by you?

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    1. This comment has been removed by a blog administrator.

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    2. You are Incorrect. African American, a term coined by Rev. Jesse Jackson, is an identifier of Americans of African origin, rather than Blacks of the diaspora. You are the shrill one not me, nor do I claim to speak for all autism parents, actually, that would be Mrs. Wright. Also this is my blog. So you are blocked for your offensive comments.

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    3. I removed my own initial comment because I should not have to justify my race or what I write on my own blog to anyone. What is more important here is that an aspect of who I am was being used in the article as an example of a trait that regardless of others viewing as less that desirable in their minds it is not anyone's right to mandate foricible modification to. Differences we are born with should not be derided or seen are something needing to be cured. Hansen disease is an illness, and those suffering from it seek a cure. it does not mean that they should be marginalized either. That those groups of people who are marginalized because they are different in any way be not modified to suit the liking of those who hate them as they are. Whether the voice demanding enforced change has wealth and power or not. This post should not be derailed into a discussion of my race, personal assaults on me as the author of an opinion piece in my own blog or any manner of oppression Olympic based commentary. Nor will I allow any further commentary insulting myself, my race, my family or threatening comments to be posted.

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  3. To +AutismMomma, all of what Kerima said. I am white also, but i am not ignorant to what has gone on and what STILL sadly goes on today. I live in the Central Coastal area of California, 3 hours North of LA, and five hours South of San Francisco, and there is blatant racism here too, towards Black and Brown people both. What happened to Irish people pales GREATLY in comparison to what has happened to Kerima, and so many hundreds of thousands of other People Of Color. My advice, AutismMomma, is to read, and do your research and homework before you come onto someone's blog to rheem on my friend, when her story, her experience is real!!

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  4. No one has any right to define another person's experience. Isn't that one of the issues with A$/the Wrights?

    Thank you for this post. Every time A$ issues a statement, or begins a new campaign, I am more terrified because the general public believes in A$ propaganda. I have, and will continue to amplify Autistic voices to counter the hate and fear. Blessings xx ~SC

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  5. Kerima, if I could apologize on behalf of all white people I would. I am honestly baffled by the lack of empathy displayed. The level of cluelessness and denial is dizzying. I'm really sorry. I just wanted you to know that your words are heard, and the truth of them is heard. Thank you for sharing your experiences.

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  6. Beautifully said, Kerima, as always. I couldn't get through all of Ms. Wright's dreadful remarks, despite the fact that I was reading the transcript and not actually watching the video. The nerve of that narcissistic bigot!

    I've already signal boosted this on my tumblr. Alas, I can't do so on facebook anymore since the powers that be shut my account down over their discriminatory names policy — yes, I could prove this is my name, but no, I couldn't do it in a way that wouldn't put me in physical danger. Anyway, I'll do what I can to get the message out on my other accounts (Diaspora, Ello, Google+, and twitter).

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  7. Thanks for giving us chance to express our thought on your blog. Yeah no one has right to speak about famous autistic people or what they did in their life. But still most of people want to know about their life, and yeah I am also one among them and always search a lot about them.

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  8. All Suzanne cares about is STUPID indoctrination, and she doesn't care how! Tell me she's not a radical Commie, tell me!

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    1. Well... Uhhhr... She's not. She's not even particularly 'radical'. Her brand of oppression is all too common.

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  9. Thank you for a very poignant post, Kerima. You've put into words some things I have been unable to verbalise. It is overwhelming, the fight to be heard, even for those of us who are engaging in inclusive research and practice. A great deal of research funding in universities comes from large oppressive organisations such as Autism Speaks. Those of us who dare to dis-align from this mainstream often suffer the consequences. Yet, we must not give up. "Nothing About Us Without Us".

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