Reader, I was wrong.
I was busy revising my novel, so it doesn’t surprise me that reading fell to the wayside. But I also think that “Care Work” was too meaty — for lack of a better word — to absorb in a month’s time. I needed to sit with it. I needed to savor it. I needed to step out of the current of mainstream, capitalist, work-yourself-to-the-bone time and dream a world of disability justice and community care and gritty, sweaty, in-it-to-the-end love.
It’s difficult to condense “Care Work” into a single column. Piepzna-Samarasinha writes about everything from sex to suicide to the performing arts. “Care Work” also includes essays on access, prefigurative politics, and grief, among other topics. But I think the heart of it, in a word, is love.
In Piepzna-Samarasinha’s words: “We all deserve love. Love as an action verb. Love in full inclusion, in centrality, not being forgotten. Being loved for our disabilities, our weirdness, not despite them. … When disabled people get free, every one gets free.”
“Care Work” is composed of Piepzna-Samarasinha’s disability justice dreams, from care webs to accessibility “as a collective joy and offering we can give to each other.” But Piepzna-Samarasinha also recognizes the grief inherent in a communal dreaming practice.
We don’t dream of disability justice because the world we live in is perfect. We dream despite a reality of political unrest, a pandemic, and the trauma of being disabled in an abled world. Our dreams of a better world are rooted in, and inextricable from, our collective experience of grief.
Dreams can feel frivolous. But “Care Work” rejects that line of thinking. It is a master class in balancing vision and loss. Piepzna-Samarasinha is a well-known activist. Her essays speak not only to her passion, but also her dedication to the framework of disability justice. But Piepzna-Samarasinha never ignores the necessity of dreaming.
Sometimes, more often than I’d like to admit, I look at my work — the stories, poems, and nearly finished books — and think, “What use are you?” Especially now, with record-breaking death tolls due to COVID-19 and economic instability. The internet tells me the world is on fire, and who am I to disagree?
But dreams are all I have. Dreams and words and love as an action verb.
A better world is possible. But Piepzna-Samarasinha knows that in order to bring our wildest disability justice dreams to life, we have to balance vision and loss. We have to acknowledge our grief, because it is grief that fuels our dreams of a better world.
“Grief can be the garden,” Piepzna-Samarasinha writes. The practice is to make space for the grief; to sit with the loss, and let it inform our actions in the coming year. So, I think about the disabled activists who were forcibly dragged from their wheelchairs at peaceful protests.
I think about Jerika Bolen, a Black, queer, femme person with SMA type 2. In “Two or Three Things I Know For Sure about Femmes and Suicide: A Love Letter,” Piepzna-Samarasinha recounts Bolen’s decision to commit suicide at age 14: “She said that she didn’t have a future, that she of course wouldn’t be able to dance or date or love, so she was choosing to die.”
I think about 19-year-old Brianna, so deep in a depressive episode that she struggled to get out of bed. I think about 13-year-old Brianna, and all the dreams she had for herself — proms and first dates and the thrill of writing books for disabled girls. I think about 25-year-old Brianna, refreshing Twitter in a fugue, watering the garden of her grief until it’s lush and full of life.
Dreaming is hard. It’s full of blood and sweat and tears. But it is also necessary. And I think that is what I learned from Piepzna-Samarasinha. That is what I carry with me — a dream of disability that liberates and loves and is always up to something new, always envisioning a better world, a better life, even in the midst of grief.
I don’t know what this year will look like. But I do know that dreams and words and love as an action verb are important, especially now. Envisioning a world that does not arrest disabled folks in need of healthcare. A world so full of hate that a Black, queer, femme person with SMA type 2 — my disease — believes she doesn’t have a future.
Love as an action verb. Love as not looking away. Love as naming and resisting and dreaming a reality where every single one of us is free.
“I dare you to join me in doing all we can to get free and get to that other world we have one foot in, while leaving no parts of our beautiful selves behind.” – Jess St. Louis
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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