“I’m not broke and don’t need fixin’”: Reflections on the Oct. 27th Autism and Advocacy conference
It has been just over a month since the October 27th conference, Autism and Advocacy: A Conference of Witness and Hope. Reading an article in today’s Inside Fordham Online and also Witness, hope, honor, and an elephant for Katie by conference speaker Kassiane Alexandra Sibley took me back to that very day. From the Inside Fordham Online article:
Autism is a disorder that has many unknowns; although it is regarded by the medical community as one of five Pervasive Development Disorders (PDDs), individual manifestations vary. Genetic components and medical treatments have also proven hard to pin down. It often is a challenge for people defined as autistic to deal with society at large, and conversely for that larger world to accept them. How can we, as a society, respond to these persons and their caregivers in a compassionate and respectful way?These were among the issues raised [during the conference, which] addressed different aspects of the developmental disorder and its effect on autistic persons and their families……….More than 200 people, including educators, activists and parents of autistic children, attended three sessions involving clergy, academics and advocates……..
[Conference organizer Jim] Fisher, whose son Charlie is autistic, spoke of the “paradox” of autism, a condition which is often characterized by isolation, but whose affected parties are continually reaching out for a real sense of community. He told a touching story of Charlie gradually learning to master the intricacies of riding a bicycle, culminating with a fall and hospital visit. The rewarding part of that experience, said Fisher, was that the emergency room personnel “did not see him as a child with autism. They said to me, ‘hey, that’s what nine-year-old boys do.’”
Fisher noted the connections between American Catholic Studies and autism advocacy, saying that both are grounded in the value of the dignity of the human person, and in never reducing a person to a condition or part; rather seeking to educate or assist the whole person.
The Inside Fordham Online article includes references to what some of the speakers and parent attendees said at the conference; a full list of conference speakers is available here. This page also contains a growing list of links to my Autism Vox posts about the conference, as well as to other articles about it (include Jim’s reflections, including Kassiane’s “I’m not broke and don’t need fixin’”).
Conference speaker Kassiane Alexandra Sibley’s reflections on the conference are focused on her meeting Mike McCarron, Katie McCarron’s grandfather. Writes Kassiane, simply and powerfully:
So for me, I guess Mr McCarron is the strongest witness to hope I had ever seen. He isn’t hoping for some miracle to bring his Katie back. It’s too late. As I understand it ‘cure’ was never on that side of the family’s agenda, as they were doing education in whichever Carolina. Just hope for justice, and hope for better, safer futures for other autistic people. Through tragedy, he has become a fierce ally. Woah. How many people would crumble? I sure would. Or I’d get angry in the impotent kind of way, or the a little too potent kind of way…but not like this.
Kassiane notes that she wears a pink ribbon every day to remember Katie and also “a tiny elephant charm, one that looks like a baby elephant, silver,” small enough to hand from her medicalert bracelet—small enough always to wear, and to remember.
As I hope to remember the feeling—-the hope—that emanated in the amphitheater that day. If you were at the conference and would like to share a memory, please comment in this post or email me at kristina AT b5media DOT com. I will compile it all into one document or webpage; one collective memory of a very memorable day.
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POSTED IN: Autism Advocacy Conference, Disability Rights, Family, Psychology, Religion, Weblogs
1 opinion for “I’m not broke and don’t need fixin’”: Reflections on the Oct. 27th Autism and Advocacy conference
Mike McCarron
Nov 30, 2006 at 12:05 am
Jim and you were able to gather together a wonderful group of people. I do hope their voices continue to be heard in future years.
Thank you for all of the hard work that went into organizing that event.
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