Naming Disability as a Space of Possibility

A few days ago, I linked my friend Sherry to an article on spatial abolition and disability justice. I knew a few paragraphs into the article that I would be sending it to Sherry. Given her interest in disability justice and accessibility, it seemed like a match made in heaven. But her response took me by surprise.

“So, so good. Will you be writing a column on this?”

I could easily write an entire series in response to this article. There’s so much to unpack, from disability as a “‘misfitting’ of bodies” to the intersection of access and abolition. But the more I thought about the article, the more I returned to one quote in particular: “Disability is not a lack, but a space of possibility for other ways of being and noticing.”

A few weeks ago, Sherry sent me a video by Hank Green on gene editing. We talked a lot about the possibility of “erasing” SMA. Given the opportunity, would we erase — or cure — our disability? It’s a question I’ve asked myself a lot over the years, and every time my answer changes. It’s not as simple as yes or no.

I know that Sherry wants to write about gene editing, so instead, I’ll focus on the central thesis of the Public Books article: “Rather than focus on the obstacles disabled communities face, [we can cultivate] a sense of generative possibility around how these unique perspectives help us see the world in a different way and emancipate new ways of living together in it, otherwise.”

I’ve written previously about the flexibility and adaptability required to thrive with SMA. It’s not just that we think creatively; for many of us, it’s an entire restructuring of our inner and outer worlds. We grow up with ideas of independence. We are encouraged to become self-sufficient, climbing the ladder of life like those who came before us, clinging to the rungs of milestones such as marriage, child rearing, and retirement.

But we also know that we are apart. It is the perfect example of “misfitting”: Because of SMA, our bodies are literally incapable of what has been deemed normal. We have one foot in the real world and one foot in this space of possibility. We are forced to try new things, to experiment, to completely reimagine what it is to be a person in the 21st century.

If there were a cure for SMA, I would take it. But not without hesitation. The thought of having a normal life in an able-bodied world is equal parts exciting and terrifying — a space of possibility, but also a thing of loss.

Who would I be without SMA? It’s hard to envision, because disability has shaped so much of who I am today. I may not be able to walk, but I do know how to be in community with folks I depend on for basic care. I know what it is to be humbled by the magnitude of my own needs. I know to treat every day like it is my last, because it very well could be. I know that we are all a little broken, and so much of life is learning to heal and be healed.

SMA has forced me to take stock of my life. To name what I want, and more importantly, to hold those wants loosely. I rely on people, and people rely on me, and it takes imagination and courage and more than a little patience to find a middle ground. SMA forces me to think outside the box — to look at what the world has given me and ask, with all gratitude, what else is possible.

If there were a cure for SMA, I would take it. But I think I would mourn the version of me that would die to make room for the new and improved, able-bodied model. I think that once the allure faded, I would long for the expansiveness of disability, the sheer possibility that is “misfitting.” I would miss looking at the life I’ve been given and knowing that if I’m not satisfied with this world, I can always make a new one.

“Bringing together the worlds of disability justice and abolition could be one of the most powerful prompts for the future. What kind of world could we live in—where there is no need for prisons, flexible enough to meet the needs of everybody, understanding that we move through various states of dependency and vulnerability through our lives, in which we go beyond accessibility and inclusion toward systems of care and radical interdependence?” – Joal Stein

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