Today, Paulette Leaphart began a 10-week long, shirtless walk from Mississippi to Washington D.C. as a way to bring attention to the shame around women’s bodies and disabled bodies. Leaphart has had a double mastectomy, and she wants to push back against strict definitions and bodily requirements of femininity and beauty, and instead embrace self-definition. She also wants to present an image of breast cancer that is not “a pretty pink story wrapped up in a pretty pink bow”, not white, conventionally feminine, and relentlessly upbeat.
Here is an article about her walk and the documentary about it: (CW: mentions of child abuse) http://www.theestablishment.co/2016/04/30/meet-the-woman-walking-1000-miles-topless-with-double-mastectomy-scars/
When I saw the title of the article, I was worried that it would be ‘inspiration porn’ about how brave she is for having had a double mastectomy, and for being a cancer survivor. And there is some of that, but mostly the article represents the walk as Leaphart’s self-determined activism for her own goals. She wants to encourage other people to celebrate and talk about their scars, and perhaps be less ashamed about their bodies after seeing someone with scars like them. Beyond documenting Leaphart’s walk, the film is collecting other people’s stories about their scars, both visible and invisible. This project seems not to shy away from the painful part of disability and trauma, which is frequently not the case with mainstream narratives around survivors. It is meant to primarily impact disabled people, not be an inspiration.
I recently came across a Radiolab podcast about 2 artists- a biologist turned painter, Anne Adams, and a composer in early 20th century, Maurice Ravel. Both of these people had progressive brain disease that affects language and memory, and as the podcast describes it, one of the first symptoms of the disease for both of them was an intense creativity and desire to make art.
The podcast has an interesting description of their artistic work and the similarities between their art and experiences with progressive aphasia, but it tries to use people with this disease to make broad conclusions about the “mysteries of creativity”. This is a particular kind of objectification that is often applied to disabled people, holding them up as both inspiration and lesson about “human nature” that is useful to others, rather than as whole people with complex lives of their own. The podcast also defines “human-ness” by how complex a task someone can perform- in one part, the narrator says a task like painting is much more “human” than something like pouring water, and implies that Adams became less human as time went on. Obviously, this is problematic.
Besides these critiques, I’ve been thinking about how Adams’ and Ravel’s work relates to disability culture. I’m not sure either of them explicitly identified as disabled, but art that is created by and especially that which reflects disabled people’s perspectives and interpretations of the world are usually included in disability culture. Repetition and detail are both important things for many neurodivergent people, and I think viewing these artists’ work as part of a discrete culture is better than writing it off as merely the results of a neurological condition.
This link includes the podcast, as well as an image of one of Adams’ paintings: http://www.radiolab.org/story/217340-unraveling-bolero/