Paper Title

Celebration and Sadness: Disability Studies with Mother and Daughter

Location

Room 214, West Center

Start Date

April 2016

End Date

April 2016

Keywords

disability, Down syndrome, feminism, feminist disabilities, brain tumor

Abstract

My daughter is a child in so many ways: she can be adorable or infuriating. She loves dance and has difficulty with communication. Down syndrome is one component of many that define her. In the years that I’ve studied intellectual disability, I’ve found that Down syndrome is worth embracing. In a time when tests are moving toward eradicating Down syndrome, I’m asking that we think differently.

My own lived experience is different. For the last six years I’ve had a brain tumor, and in recent months it’s become worse. I’ve been receiving various kinds of medical and surgical intervention, yet as the years progress, the tumor grows. It’s a form of disability, but can it be a site for celebration?

If I could get rid of this tumor, I would. But whether or not this is a medical nightmare--that’s not the whole question here. Having this brain tumor has given me a different way to experience the world around me. Today it would be nearly impossible for me to write the sort of theoretic, academic work that used to feel like it was my responsibility. Now I can let it go. And that’s not something I have to take on as a crisis. In some areas I can choose to understand things differently.

Disabilities, including death, are not simply tragedies—they can be transformative for some of us. There are positives we can take and create. I can’t change my brain tumor, but I can latch onto the possibilities. As Rosemarie Garland-Thomson notes, “Perhaps counterintuitively, rather than dictating a diminished future, disability opens a truly unpredictable, even unimaginable, one.”

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Apr 2nd, 3:30 PM Apr 2nd, 4:45 PM

Celebration and Sadness: Disability Studies with Mother and Daughter

Room 214, West Center

My daughter is a child in so many ways: she can be adorable or infuriating. She loves dance and has difficulty with communication. Down syndrome is one component of many that define her. In the years that I’ve studied intellectual disability, I’ve found that Down syndrome is worth embracing. In a time when tests are moving toward eradicating Down syndrome, I’m asking that we think differently.

My own lived experience is different. For the last six years I’ve had a brain tumor, and in recent months it’s become worse. I’ve been receiving various kinds of medical and surgical intervention, yet as the years progress, the tumor grows. It’s a form of disability, but can it be a site for celebration?

If I could get rid of this tumor, I would. But whether or not this is a medical nightmare--that’s not the whole question here. Having this brain tumor has given me a different way to experience the world around me. Today it would be nearly impossible for me to write the sort of theoretic, academic work that used to feel like it was my responsibility. Now I can let it go. And that’s not something I have to take on as a crisis. In some areas I can choose to understand things differently.

Disabilities, including death, are not simply tragedies—they can be transformative for some of us. There are positives we can take and create. I can’t change my brain tumor, but I can latch onto the possibilities. As Rosemarie Garland-Thomson notes, “Perhaps counterintuitively, rather than dictating a diminished future, disability opens a truly unpredictable, even unimaginable, one.”