Thank you to Kerima Çevik for republishing her newest blog post with us here at Autism Women’s Network. Mrs. Çevik’s original post can be found at The Autism Wars.
“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 with 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 diseased. 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 with Hansen disease. So you’ve managed to insult that entire community as well.
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 making him seem diseased. You don’t dictate 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. 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. Comparing autistic children to people with Hansen disease is just scary.
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 with Hansen disease. Parents and care providers aren’t martyrs or saints. They are people whose job is to take care of their children. 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.
About the Author, Kerima Çevik