Embryonic Notes on Beauty, Desire, Disability and (Data) Exile“Are you sure, sweetheart, that you want to be well?" – The Salt Eaters (1980) by Toni Cade Bambara
Desire is arguably a variable in every equation that relates to “belonging” – I see a lot of people write about love in so many of the right ways, and still fail to interrogate desire with the urgency requisite. It is not just people who are desired, and not just achievements either. Places are desired. For better or worse, wounds can also be desired. I’ll never forget that line in The Salt Eaters where one of Toni Cade Bambara’s characters asks “Are you sure, sweetheart, that you want to be well?... Just so's you're sure, sweetheart, and ready to be healed, cause wholeness is no trifling matter.” I’ve been thinking about it a lot lately as I’ve been navigating a swirl of doctors’ visits and medical back and forth in a country and language that are not my own. Feeling like the epitome of a baby and having to talk to my therapist about how to attend to the baby inside me who’s crying out for the kind of durational empathy that adults are denied and have to learn how to extend to ourselves. When you are in Europe and your mother’s mother and father’s mother are both telling you not to come home for the first time in your life, and that day you are eating dinner in a restaurant where the lighting is “just right” and the pillows are lined in emerald velvet, sick and stuck in a city 99% of your family can not enter but have almost certainly dreamt of because it is Paris, after all – things like beauty and glamour and exile feel far from poetic. You can be proclaimed beautiful even in a body you do not always feel to be yours. Exile is not beautiful or glamorous – most things that pertain to feeling out of place are not. And yet lately I’ve been wondering if exile is a wound that I might somehow subconsciously desire. (Spoiler: Exile is far from something I desire. It just so happens to be a neighbor to my desire to resist whatever platform-induced trance state performativity that renders material political realities into social currency… think: summer 2020 IG Black square paper thin declarations + blood-money career “come ups”… but that’s a dispatch for another day….). And if so, whether desire is always a choice. Whether me wanting to extend my time in Europe after developing a hyperfixation on Venetian cicchetti (after needing to reroute to Venice because my partner and I’s trip to Congo got derailed) was a product of me subconsciously desiring exile, or whether Venice was so beautiful that I forgot I wasn’t technically there by choice. More than anything, I desire to be home right now. But even more than that, I desire to be well. And when being well and being home can not go hand in hand, exile turns into a labyrinth punctuated by contradiction and guilt.
I’ve thought a lot about data trauma ever since Olivia Ross introduced me to the phrase six years ago. But walking around Venice and watching footage of my countrymen being gunned down by police in Kenya for rallying to protest the abduction and murder of a blogger (who was assassinated for a social media post he made), seeing all of my friends back home take to the streets and wanting so badly to be there with them (knowing that posting about it on social media myself could potentially be a risk I couldn’t take back) made me think a lot about data exile. Being so close and so far from the world you see unfolding on your screen – either choosing to binge it because you desire to know more, or choosing to ration your data intake and surrender to being exiled in the dissociation of your surroundings. When you are in Europe and your mother’s mother and father’s mother are both telling you not to come home for the first time in your life, and that day you are eating dinner in a restaurant where the lighting is “just right” and the pillows are lined in emerald velvet, sick and stuck in a city 99% of your family can not enter but have almost certainly dreamt of because it is Paris, after all – things like beauty and glamour and exile feel far from poetic. Most cities in Europe are deified for their “beauty” (indirectly) on account of the thefts and bloodshed in their foundations. Where did all of the money for all of these oh-so-beautiful buildings come from, after all? (Hint: conquest and its afterlives. . .) The realer exile becomes for me, the more I’ve forced myself to interrogate how where I am is a product of my desires – not just the lush dopamine-threaded desires that bring us closer to things, but the withdrawals too (be they premeditated or externally-imposed) that also function to plunge us into the throes of desire. More than anything, I desire to be home right now. But even more than that, I desire to be well. And when being well and being home can not go hand in hand, exile turns into a labyrinth punctuated by contradiction and guilt. As someone who has been chronically ill for over a decade now, and who’s had the privilege of being a part of life-changingly loving and rigorous and compassionate and accommodating disability-justice communities, I’ve spent a lot of time thinking about how desire(ability) intersects with disability. In Care Work, Leah Lakshmi Piepzna Samarasinha writes about something she calls “femme armor” – how not having control on the inside means you end up trying to control what the world sees on the outside in an attempt to reclaim some of what you’ve lost. I’ve seen this a lot in queer nightlife culture, folks dolling up and being glam as hell to escape being deeply wounded by the world around us. I’ve seen it in the mirror each day this week, as I get ready to see friends and/or doctors who I don’t know well but am reliant upon for the kind of care-work that for better or worse has some degree of desire(ability) in its equation cuz we live in an ass backwards world where if I pull up to the doctor’s office looking as disheveled as I feel (and in this body), then I’m more likely to be deemed unstable than I am to be deemed someone worth believing and extending care to. My notes the past months have looked something like this (Note: When I speak of beauty, I am not speaking about the body – I am speaking about its adornments. Perhaps ‘glamour’ is a more accurate word container – but for the purposes of these notes, I will continue to use the word ‘beauty’ because ‘glamour’ connotes wealth in a way that ‘beauty’ does not.)
These notes are embryonic. One day I hope they’ll make it into the book that I pray to get well enough to write, in fuller form. I’ll leave y’all with a journal entry of mine (ft. a letter to baby Neema) from back in May when I was in Colombia (sick out my miiiiiiiiiind but getting inundated with gazes that only functioned to make me sicker). I’ll also admit that this part of the dispatch is well out of my (public) comfort zone – but this afternoon I returned to the Audre Lorde Questionnaire to Oneself and the tyranny I refused to swallow today was “beauty”.
Yours in Love and Data Exile, Neema 💚 You're currently a free subscriber to Neema’s Substack. For the full experience, upgrade your subscription.
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srijeda, 9. srpnja 2025.
Embryonic Notes on Beauty, Desire, Disability and (Data) Exile
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