On Stephen Hawking, Disability, Art, and Representation

This week we were reminded of the importance of storytellers and artists of marginalized identities being centered in representing those identities when, in the wake of Stephen Hawking’s death, a flood of articles and artwork about him were critiqued by disabled artists and activists for their ableism.  From the idea that he was “bound” or “confined” to his wheelchair, to assumptions that his work was unrelated to or ”despite” his disability, to the notion that Hawking’s life was full of suffering, to suggestions that his death was preferable to his disabled life, it was a rough week in news for disability activists like myself.  Few were highlighting Hawking’s disability advocacy, and the focus on his disability as tragic and pitiful rather than an ordinary part of his life or an identity that may have been important to him undercut his work and accomplishments.

Among artists, imagery was created that included an empty wheelchair among stars and even an empty wheelchair with a silhouette of a supposed non-disabled Hawking standing in the distance.  Though Hawking himself was recorded saying he did not believe in an afterlife, artists began imagining him one as an able-bodied person.  These artists are presumably not people with disabilities, though one’s access to education about their own identity can influence how they understand and represent that identity.  Nonetheless, I found myself frustrated with the ways that, even in death, ableism is leveraged to evaluate the quality of disabled lives.

I also found myself questioning how we critique the cartoon of Stephen Hawking walking into the cosmos, “she’s running in heaven” condolences, or the idea that death is better than disability without leaving some disabled people behind.  How do we stop ourselves from implying that disabled people who accept treatment or want cure over an early death or folks in so much physical, mental, or emotional pain they desire relief and/or consider death aren’t activists or are not radical enough?  And still we know that any desire for death, treatment, or cure over disability cannot be removed from the context of an ableist world.  A world that holds ridiculous expectations for what bodyminds are supposed to be able to do and at the same time provides little support for people with disabilities to meet those expectations or achieve our own dreams, goals, and desires.

What I know for sure is that if there is an afterlife non-disabled people don’t get to dictate it for disabled people.  This equates to better off dead narratives and erases disabled people from different conceptualizations of afterlife and the future.  Non-disabled people have had enough power and control over disabled people in this life.  I think that post death will be ours.  And I don’t plan to be running, walking, skipping, leaping, jumping, or doing any other able bodied stuff in my afterlife.  Instead, I imagine a bunch of pressure relieving air mattress clouds.  I’ll lie on them with my fellow dead disabled friends, laughing and singing, free from capitalism and ableism.