My cerebral palsy isn't a problem to be cured, says writer Eli Clare

Writer, activist and poet Eli Clare spoke to guest host Christa Couture about the messiness of what it means to be "cured."
Writer, activist and poet Eli Clare is the author of "Brilliant Imperfection." Eli Lehrer, Riva. Eli Clare. 2003, acrylic on panel.

When Eli Clare was a young kid, adults would often ask him: If you could take a pill to get rid of your cerebral palsy, would you take it?

"I want to pause and say, who asks a five year old a question like that?" Clare told Tapestry guest host Christa Couture.

People expected him to say, "Absolutely!" Instead, Clare said, "absolutely not." 

"On an individual level, my cerebral palsy is defined as 'trouble,' both medically and culturally," said Clare, an activist, poet and author of the book, Brilliant Imperfection: Grappling with Cure.

"And yet, I don't have any idea who I'd be without tremoring hands, slurring speech, tight muscles and a rattling walk. So the idea that my cerebral palsy could be cured, in other words taken away as if it never existed, would totally and completely change who I am."

Head shot of Eli Clare standing on beach in front of driftwood. (Samuel Lurie)

The problem of cure

On the surface, being "cured" might seem like a good thing. After all, it saves lives.

But Clare says the concept also makes many things into a medical problem to be solved, often with technology. He points to weight loss surgery and skin lightening creams as examples of how the concept of "cure" goes beyond disability to permeate diverse aspects of society.

Clare adds that the problem — or "trouble" — isn't always connected to how a person feels. Often, it's what society considers abnormal.

"Who gets to define 'trouble?" Clare asked. "For whom and in which contexts?"   

"Many of us have been defined as 'troubled' and 'troubling' in dozens of ways over the last five centuries. In many of those cases, being defined as 'defective' or 'abnormal' has led to violence," he added.

Imagining a better future

When it comes to imagining a better future, Clare has some ideas for what that might look like. It includes seeing the body and mind as interdependent "body-minds," rather than separate entities.

It also includes a belief in what Clare called "the knowledge and skills and strength that are gained through body-minds that are now in this moment considered disabled."

"It's a world where no body-mind is medicalized," Clare added, "where medical technology and medical care is available - good respectful medical care - is available to everyone … where this notion of "trouble" doesn't exist."

Web Extra

Turns out, writer and activist Eli Clare had some questions for Tapestry guest host Christa Couture, who was more than willing to answer them.

Guest host Christa Couture was surprised to find that Eli Clare, also had some questions for her.

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