Good Morning America aired a show today titled, Controversial Movement: Autistic and Proud, Activists Stop Looking for a Cure and Accept People As They Are. It is important to see. It far outweighs any coverage of Jenny McCarthy you may have seen in recent months. You can watch it here as video or read the brief transcript here. The guest speakers, Kristina Chew and Ari Ne'eman have a blog and a website respectively which also deserve a peek. Kristina is a parent whose great line in the interview is "Acceptance is the beginning of hope." Ari makes a cogent observation that every civil rights movement in history has had detractors and resistance. He is right to think of it on that scale.I find it profoundly coincidental that this aired the same week as Harriet McBryde Johnson's death. She loomed large as an advocate for disability rights protesting Jerry Lewis' telethons because of the discrimination they perpetuated toward those with muscular dystrophy. As a child with severe dystrophy, she believed she didn't have long to live and resented the implication that her only chance of happiness was a cure. Sound familiar? Her book, Too Late to Die Young, while inflammatory and challenging to read, is seminal to the disability rights movement. Society's stereotypes should not get in the way of people living their lives or meeting their potential. What I want for Reid and what Kristina Chew wants for her son is progress toward his greatest potential, not a cure. By the way, that is the very same thing I want for my daughter.
Harriet McBryde Johnson influenced many others including Michael John Carley, Executive Director of GRASP (Global and Regional Asperger Syndrome Partnership). After reading her article, Unspeakable Conversations, wherein she defends her own right to life, he saw the parallels to the autism community and felt compelled to lead the charge at GRASP. His interview on NPR's All Things Considered 2 years ago had virtually the same title as today's Good Morning America piece. What is so "controversial" about wanting acceptance instead of cures?
Years ago, we had an opportunity to talk over dinner with Tony Attwood who was in town for a seminar. It was a thrill to go around a table of 10 and be able to ask him questions. My husband, inspired by his associations in Silicon Valley and a recent article in Wired magazine, asked Mr. Attwood to expound upon the competitive advantages of being on the autism spectrum. How could we, as parents, help harness those in our children (not cure but push to progress)? Mr. Attwood's answer was astounding (then and now) as he took the concept one step further to suggest that the increased incidence of autism could, in his opinion, be an example of natural selection in our species. While I am far more creationist than evolutionist, I hear his point. There is an unmistakable genius in what we diagnose "abnormal."
"I am the Alpha and the Omega," says the Lord God, "who is, and who was, and who is to come, the Almighty." Revelation 1:7-9
Accept one another, just as Christ also accepted us to the glory of God. Romans 15:6-8
I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. Psalm 139:13-15
photo credit: lastcrazyhorn.wordpress.com
"I am the Alpha and the Omega," says the Lord God, "who is, and who was, and who is to come, the Almighty." Revelation 1:7-9
Accept one another, just as Christ also accepted us to the glory of God. Romans 15:6-8
I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. Psalm 139:13-15
I find the subject controversial for, I think, different reasons than these pieces do. It seems like they struggle with the God-given, unique talents that people on the spectrum have... and I'm fine (and applaud) those. For me it's controversial because I think all people should seek to better themselves in every way possible. For example, I just got Lasik, went to continuing education and may have a third surgery on my arm. I also take (natural) supplements/vitamins and eat well. Where does self-betterment, mental progression begin and end? I know you're not suggesting people with autism not seek self-betterment but for me the word "cure" isn't binary but more probably steps toward coping better. Should kids with any condition seek answers (pharmaceutically-based or otherwise)?
ReplyDeleteTo Jim:
ReplyDelete"Anti-cure is not anti-progress"as Ari says in the GMA piece. We--all of us neurodiverse humanity--need healing and hopefully life this side of heaven is about growing in character.
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