Don’t Call Me Inspirational: A Disabled Feminist Talks Back by Harilyn Rousso (2013).

You can tell from the title that Ms. Rousso means business.  Her memoir explains life with speech, uncontrollable right hand, and gait skewed by cerebral palsy. Her life as the only disabled kid around, and her mother’s determination that she be independent led her to feel she could do anything, but she also felt she was at some fault for being different.

“Disability is seen as deficiency rather than difference…” (p. 159), she writes, and this sensibility is what Rousso finds to be the harder struggle—harder than any of the physical and health challenges she encounters as a result of the damage done at birth by the lack of oxygen. She is normal, the rest of us, well….

I am a TAB (temporarily able bodied) person, among my various identity markers.

Anything could change that: a deer darting in front of my car, an ice patch for a sudden fall, or a cancerous cell mutating fast. I dance up ladders, defy gravity while gardening (digging bushes out while root systems want to hold it in), drive daily on highways and Vermont dirt roads. A split second could change everything I know myself to be. Rousso was born with her disabilities; I will acquire mine. I’ve got everything to learn from this author who admits to struggling with shame, anger and frustration with her body and the clueless questions of those with no apparent flaws of their own.

Rousso would like us to come to understand how utterly capable she is. She gets so mad at people for not seeing her intelligence, for denying her access and inclusion.  Rightfully so she asserts that with all the movements for civil rights in the past few decades, the right to access (not assistance) still waits to be recognized. It leaves me wondering what are we afraid of. People in wheelchairs taking over the government? People with a disability having sex? That we’ll catch it?

A ramp to every entrance instead of stairs? (which actually would be accessible for everyone!)

When you look up at a person approaching, what do you notice first?  I sure see a wheelchair or a gait, then I focus on the face, the skin color, the gender, the individual, the clothing, and then I peek again at the gait, the walker or wheelchair. Rousso wouldn’t mind me peeking; she just wants me to see her for all of who she is.  Her collection of essays makes this point quite beautifully. She writes with more compassion than frustration about being an individual with strengths and a few physical differences. She has a great sense of humor, and a sense for detail, so her descriptions of the way she negotiates the world are compelling. She has a loving partner, a great and stimulating career. She’s designed a mentoring program for girls and women with disabilities, she write and paints. Her life is full and creative.

We are so many things—and we are marked and valued for so many qualities we have no control over.  So really, after reading Rousso (and Conley, Winterson, Schwarz and others in previous entries), I find myself wondering again, what is “normal”? And who among us would claim it?