Reflections on Disability Tribalism

This is what happens when you google yourself. You discover things you wrote or commented on years ago that you have completely forgotten about. I don’t recommend the Self-Google, but at least I am prepared now with an explanation if someone confuses me with a fitness columnist from the Montreal Gazette who has the same name.

I wrote this comment on disability neurotribes in September 2015, after the publication of the book “Neurotribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman. I was commenting on a review in Psychology Today  of “Neurotribes” by Amy Lutz, the parent of a son with severe autism. She took issue with Silberman’s characterizing autism as a “strange gift”, having experienced the most profound and extreme manifestations of the disabling disorder for the segment of the population like her son.

There was a reply to my comment from Silberman, rebuking me partly for commenting on his book without having read it. It’s true, I had not read it although I still plan to read it when I get the time. But good grief! The book is over 500 pages long and it has no immediate application to the everyday experience of my sons. I will read it one day when I am not waiting for the next phone call about Danny’s next trip to the emergency room for seizures or pneumonia. But my point is that disability tribalism can take an ugly turn when it is  applied to demand uniformity of thought and allegiance to beliefs that are based on half-truths and overly broad generalizations.

This is what I wrote in September 2015: 

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Autism Tribes?

Submitted by Jill Barker on September 29, 2015 - 11:21am

One of the most persistent problems in the realm of disability is the impulse to label and classify people to the point where they lose their individuality and we can’t see the trees through the forest. We all do that as a way of making sense of our world, but it stops having any practical value when we impose our generalizations on everyone who has been assigned a particular label.

I haven’t read Steve Silberman’s book on neurodiversity, but I wonder how a group as diverse as people with autism can be called tribal. I have two sons with profound intellectual disabilities and severe cerebral palsy. I have met people with physical disabilities as severe as my sons who communicate and think as well as most people and have formed what you might call tribal bonds with others with similar disabilities. Their allegiance to their own tribe is probably personally satisfying, but it does not give them license to dictate to people like my sons and their families what they are supposed to need and want. This in fact happens when disability self-advocates support the elimination of services and residential housing that they personally abhor, but are needed by people with higher support needs who lack the ability to make decisions for themselves.

I have known families torn apart by the lack of services to help them with a family member with dangerous behaviors or overwhelming medical and personal care needs. Nothing is gained by pretending that these situations don’t exist or that failure to provide for these needs has anything to do with the character and competence of family members.