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Mollie Holmberg takes crip lessons from philosopher Val Plumwood's experience of being prey to a crocodile, pointing toward strategies for collective pandemic survival and resistance to environmental violence.
The post Pandemics, Predation, and Crip Worldings appeared first on Edge Effects.
My son’s language is made of a bundle of sounds that do not exist in the Spanish that we speak around the Río de la Plata. He repeats syllables he himself invented, he alternates them with onomatopoeias, guttural sounds, and high-pitched shouts. It is an expressive, singing language. I wrote this on Twitter at 6:30 in the morning on a Thursday because Galileo woke me up at 5:30. He does this, madruga (there is no word for “madrugar”, “waking up early in the morning” in English, I want to know why). As I look after him, I open a Word document in my computer. I write a little while I hear “aiuuuh shíii shíiii prrrrrr boio boio seeehhh” and then some whispers, all this accompanied with his rhythmic stimming of patting himself on the chest or drumming on the walls and tables around the house.
My life with Gali goes by like this, between scenes like this one and the passionate kisses and hugs he gives me. This morning everything else is quiet. He brings me an apple for me to cut it for him in four segments. He likes the skin and gnaws the rest, leaving pieces of apples with his bitemarks all around the house. He also brings me a box of rice cookies he doesn’t know how to open. Then he eats them jumping on my bed. He leaves a trace of crumbles. Galileo inhabits the world by leaving evidence of his existence, of his habits, of his way of being in the world.
When we started walking the uncertain road to diagnosis, someone next of kin who is a children’s psychologist with a sort of specialisation in autism informally assessed him. She ruled (diagnosed, prognosed) that he wasn’t autistic, that we shouldn’t ask for the official disability certificate (because “labels” are wrong, she held), and that he should go on Lacanian therapy and music therapy on Zoom —now I think this is a ready-made sentence she just gives in general to anyone.
The most violent intervention in Galileo’s subjectivity is denying his being-disabled in an ableist world and his being-autistic in an allistic world. We, as a culture, have internalised the terror of disability so deep in our minds that we hurry to deny it. We are not willing to accept that what causes us so much angst and dread actually exists, that it is not an imagined ghost. Denying like this, in this delusional way, is an instinct only humans have. It is so human (so stupid) that it is not a survival instinct. When we deny autistic affirmation, we prepare the ground for its annihilation, i.e., for the annihilation of everyone who is autistic. Being autistic isn’t being an imperfect allistic, a not-yet-allistic person. Being disabled isn’t the same as being a flawed abled person. The denial of disability doesn’t amount to affirming an alternative ability, it implies the ableist annihilation of all vulnerability. But when disability is negated, able people do not survive either. We are born and we die in disability. How did it happen that we dare to imagine we can supersede need? (Maybe by the same process by which it is believed that capitalist profits are meant to satisfy human needs).
The instinct of denying disability is not innate, though. It is an intelligent trap designed to break communities apart, to disorganise, to debilitate us: not to make us disabled but to make us unable, powerless. This is how ableism works, de-politicising vulnerability and unease, making disability, at most, an object of pity and compassion, a matter of bad luck, a fate to try to twist and avoid.
***
Galileo’s spoken language has the musical texture of a genre he alone can perform. There was a (short) time when I thought that my role in his life was to be her translator, a mediation between him and the rest of the world. This is impossible for many reasons. The most important of them isn’t that I don’t get him (I don’t), it isn’t that I don’t speak his language (I don’t), or that no one (much less a mother) can or should mediate anyone. The main reason is that Galileo speaks as someone who plays in their instrument a piece that they have composed for themselves.
Sometimes language is comprehensible only insofar as one gets ready to listen to it as if they were in an empty church in front of a little bench where Rostropovich is about to play Bach’s suites with his Duport, and as if he were Bach himself. Then, and only then, we understand that we don’t understand, that we are at the gates of the incomprehensible. When is language more language than when it is spoken so incomprehensibly? The impossibility of interpreting oneself, myself, comes not only from the fact that no one controls or owns language. No one plays their own scores because no one creates their own language. No one, but Galileo and his equals. The autistic non-verbal language is that impossible thing that we try not to talk about when we talk, that we try to drown by talking too much, moving our hands, and writing for example this text. Autistic languages say what can’t be said in any articulated allistic “normal” language. Galileo speaks a language that complements other languages. This language of his is not the opposite of language: it perfects other languages, like music or silence do.
***
Does my son have a mother tongue? Do we speak to each other as mother and child? What do we tell each other when we chat? My son’s autism and his magic words lend me a whole new vocabulary for my own neurodiversity, a new and authentic view on my severe misophonia, hyperacusis, and hyperosmia, and on my life-long inability to grasp the majority of the rules of interpersonal relationships, among other things I thought were personal flaws that made me inferior. I won’t mask it anymore. I won’t keep it a secret anymore. Now I know how to talk about it, now I have names to name it. Maybe he will never speak his mother tongue or any other “normal” language, but he has taught me to speak a language in which I now can say what I couldn’t formulate in an allistic alien tongue. Stripping me of all the allistic and ableist expectations that have shaped the way I was meant to raise my children has liberated me from the suffering of trying to meet them myself. The truly difficult thing, besides raising an autistic child in an allistic world, besides being a non-verbal autistic child in an ableist world, is how to de-internalise all this life-long inferiorisation.
But I know he will tell me how.
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Part two of a three-part series aims to discuss the topic of advancing accessibility within scholarly communication with the focus of digital accessibility.
The post Guest Post — Advancing Accessibility in Scholarly Publishing: Building Support appeared first on The Scholarly Kitchen.
Part one of a three-part series aims to discuss the topic of advancing accessibility within scholarly communication with the focus of digital accessibility.
The post Guest Post — Advancing Accessibility in Scholarly Publishing: Fostering Empathy appeared first on The Scholarly Kitchen.
An undergraduate student in philosophy has been wondering whether their dyslexia gives them a strong reason to avoid pursuing graduate study and a career in academic philosophy.
The student asked their professor to write in to see what the readers of Daily Nous thought. Here’s what the professor said:
My situation is this: I have an extremely bright, creative and highly motivated undergraduate student. The student is also dyslexic, to the extent that reading text is much more difficult for them than it is for the average student. In my view, the student is otherwise clearly capable of succeeding at the graduate level in philosophy, should they be admitted to a good, supportive program. They have a great deal of intrinsic motivation to teach and research, and great ideas. However, they’re wondering whether their dyslexia might be a decisive reason to avoid this career path. I hadn’t encountered this question before, so I was wondering if your readers might have opinions here.
It is likely that especially valuable comments on this topic will come from philosophy graduate students and professors who have dyslexia, dysgraphia, or other conditions which make reading and writing difficult, and I hope they choose to voice their opinions on this matter.
My wonderful colleague here in the Department of Philosophy at the University of South Carolina, Tyke Nunez, is one such person, and he kindly wrote up his thoughts on the matter, posted below.
If a student is dyslexic and otherwise shows potential in philosophy, is it worth encouraging them to go on to graduate school? I’m a colleague of Justin’s who is severely dyslexic and dysgraphic. (Unaided, I read at roughly a third to a quarter of normal pace and I exhibit three or more standard deviations between my processing speed index and other WAIS-3 scores.) My short answer is ‘Yes.’ But let me elaborate through answering a few questions that you might be wondering about.
Is philosophy a good thing to spend your life doing if you’re dyslexic? Going into academia in the humanities is likely not where a dyslexic will find their competitive advantage, as the economists say, but that’s a strange way to think about one’s life. If you love it, dyslexia should not prevent you from going to graduate school in philosophy. Among humanities disciplines, dyslexics also seem well suited to philosophy, because philosophy requires reading slowly and carefully. When I picked up the Republic in high school, it was the first thing that I’d read that seemed worth the trouble and pain of reading. My dyslexia and dysgraphia mean that the various dimensions of research and teaching preparation that require reading and writing take me significantly longer. As a result, I have always had to spend a much larger amount of my time working than my peers. For me it’s worth it, because there is nothing else that I’d like to spend this amount of my life doing.
Will being dyslexic be a hindrance to getting into grad school, succeeding in grad school or getting a job? What is it like to be in the academy as someone with dyslexia? Professionally, my sense is that by disclosing a learning disability one will face some discrimination, and that this is not a kind of diversity that is valued in the academy today. As an undergraduate I had professors who were extremely resistant to accommodating my disability, however, as a graduate student I didn’t. This is likely because in graduate school one tends to know one’s professors well, and I didn’t ask for many accommodations. Looking back over my application materials for graduate school from 2005/6, it looks like I included a statement about my disability for several of my applications. I did not get into any of those schools, but I got into many comparable or better ones for which I did not include such a statement.
When I was applying for jobs at universities and colleges, I deliberated about discussing my learning disability in my diversity statement. I ultimately decided to do it because I think it is important for people with learning disabilities to be visible in the profession. I had one interview with a department that asked for my diversity statement. As a professor, I always talk about my dyslexia with my students at the beginning of every semester. It helps to put us all on an even footing. I’m also an avid whiteboard user that spells at an eighth-grade level, so it’s obvious. Otherwise, my disability is not very apparent from the outside, say, if you are reading my work or on a committee with me.
What accommodations are there that make philosophy doable with dyslexia? Obviously, spell-checker has been essential. I also would not have been able to make it as an undergraduate, let alone through graduate school, without the use of audio-book services like Learning Ally or text-to-speech programs like VoiceDream reader. Even in philosophy, you can’t read everything slowly, and without these aids I would neither be able to skim (listening sped up, no underlining) nor read carefully at a workable speed (listening sped up while following with my eyes, but stopping to highlight and take notes). Likely if a student is thinking about graduate school, they have already cultivated a base competency with these skills. Of course, even with these aids I read much more slowly than someone who does not have dyslexia.
Even more than my dyslexia, dysgraphia—which often accompanies and is conflated with dyslexia—has been a hurdle. Before I reached college, I thought I might want to go in to philosophy professionally, but early on a professor made it clear to me that the coin of the realm was the essay, and that mastering argumentative writing was a requirement on a life in philosophy. In my first two years of college, I had the good fortune of having professors who would closely read and edit draft after draft of my papers, which improved my writing. Twenty years on, writing is still a laborious and painful process. It is orders of magnitude more cognitively demanding than speaking. But it is also a daily practice that I now crave. I imagine that if I had grown up using speech-to-text programs like Dragon Dictate, I might have been able to become a faster, more fluid, more elegant writer than I am. Now, however, I’m accustomed to my writing process, and learning to use such programs feels forced.
There should be more acceptance of learning disabilities in the academy. A requisite step is recognizing and fostering the academic potential of students with such disabilities. Of course, this comes with challenges, but the transition to graduate school is difficult for everyone. Many of my peers struggled to learn to read slowly and carefully. I struggled to learn to read quickly and cursorily. Both are basic skills. As an undergraduate, I did not look like a standard good philosophy student. If you are already seeing the philosophical potential of students despite their differences with this standard, then you are already well down the path to making the profession more accepting.
Note: Some minor clarificatory edits were made to the post since it was first published.
UPDATE: Lex Academic has created a new scholarship for graduate students with dyslexia who are studying philosophy. The scholarship includes £500 and free proofreading of the recipient’s thesis or dissertation. Details here.
University accepts it did not make adjustments for her illness as a form of disability
Warwick University has agreed to pay a student who is seriously ill with cancer £12,000 in damages for the “distress and inconvenience” caused by not allowing her to extend her course as a result of her health condition.
Riham Sheble, an international postgraduate film and television studies student at Warwick was diagnosed with uterine sarcoma – a rare and aggressive form of cancer – in February 2021.
Continue reading...This is is a multilingual comic that serves as a meditation on the infrastructures of COVID-19, care, and time. In the spirit of the multilingual spaces I inhabit in Tio’tia:ke/Mooninyaang/Montréal, I have chosen to write bilingually—a process that can be messy, but that speaks to my experiences of COVID-19 locally as I am thinking of COVID-19 globally.
This refusal to separate my experiences into two linguistic boxes is an experiment in thinking about both the process and products of creation through the form of comics, an art form popular in Québec, where I lived during the start of the pandemic (and still live, at the time of this writing).
A note on translation: In panel 6, I have used “vie valide” (FR) as “abled life” (EN). This is meant to emphasize the language in the source material, which emphasizes both hypocrisy and violence of ableist and eugenicist approaches to a pandemic, and also serves as a power of refusal. As someone who is disabled but who is not francophone, I welcome conversations about this language over Twitter or over email (see profile).
Il s’agit d’une bande dessinée multilingue qui sert de méditation sur les infrastructures de COVID-19, les soins et le temps. Dans l’esprit des espaces multilingues que j’habite à Tio’tia:ke/Mooninyaang/Montréal, j’ai choisi d’écrire de manière bilingue – un processus qui peut être quelque peu compliqué, mais qui parle de mes expériences de COVID-19 au niveau local tout en pensant à COVID-19 au niveau mondial.
Ce refus de séparer mes expériences en deux boîtes linguistiques est une expérience de réflexion sur le processus et les produits de la création, en utilisant la forme de la bande dessinée, une forme d’art populaire au Québec, où je vivais au début de la pandémie (et où je vis toujours, au moment d’écrire ces lignes).
Une note sur la traduction : Dans le panneau 6, j’ai utilisé “vie valide” (FR) comme “abled life” (EN). Ceci a pour but de mettre l’accent sur le langage du matériel source, qui souligne à la fois l’hypocrisie et la violence des approches “ableistes” et eugénistes d’une pandémie, et sert également de pouvoir de refus. En tant que personne handicapée mais non francophone, je suis heureux de discuter de ce langage sur Twitter ou par e-mail (voir profil).
(note: the comic uses a dark brown, light brown, and blue color palette and appears to be drawn on a textured background)
(note : la bande dessinée utilise une palette de couleurs marron foncé, marron clair et bleu et semble être dessinée sur un arrière-plan texturé)
Panel 1: A comic spread with text that reads/Une bande dessinée avec un texte qui dit: “I don’t remember the first day I noticed COVID-19 infrastructure in Québec .” “Je ne me souviens pas du premier jour où j’ai remarqué l’infrastructure COVID-19 au Québec.”
“Stickers on the floor to tell us where to stand, lines on the floor to tell us how to queue.” “Des autocollants au sol pour nous dire où nous tenir, des lignes au sol pour nous dire comment faire la queue.”
In the background, there is a light and dark brown illustration of two stickers with footprints and “2m” written on them. / En arrière-plan, il y a une illustration marron clair et marron foncé de deux autocollants avec des empreintes de pieds et “2m” écrit dessus.
Panel 2: The text reads/Un texte qui dit: “There is a phrase, translated from Italian*, that describes hope in a post-COVID-19 future:” “Il y a une phrase qui a été traduite de l’italien* et qui décrit l’espoir dans un futur post-COVID-19 :”
Below, there are signs that read / En dessous, il y a des panneaux qui disent: “Tout ira mieux” (Belgium/Belgique), “tout ira bien” (France/France), “Everything will be OK!” (US, New Zealand, États-Unis, Nouvelle Zélande)
“*« andrà tutto bene »”
Panel 3: The text reads / Un texte qui dit: “In Montréal, the phrase written by children and taped to windows, printed on stickers and put on shop doors, and placed beneath a rainbow was « ça va bien aller »”
“À Montréal, la phrase écrite par les enfants et collée aux fenêtres, imprimée sur des autocollants et collée sur les portes des magasins, et placée sous un arc-en-ciel était « ça va bien aller »”
In the frame next to it is a drawing of a rainbow in brown, white, and blue, taped to something. It reads ça va bien aller. / Dans le cadre à côté, il y a un dessin d’un arc-en-ciel en marron, blanc et bleu, collé à quelque chose. On peut lire “ça va bien aller”.
Panel 4: The text reads / Un texte qui dit: “People with different kinds of relationships to labour, different identities, and different incomes have had different experiences under COVID-19 (and capitalism). Race, immigration status, class, and more shape how COVID-19 has been felt by people around the world.”
“Des personnes ayant des relations différentes avec le travail, des identités differentes et des revenus différents ont vecu des expériences différentes dans le cadre de COVID-19 (et du capitalisme).”
“La race, le statut au regard de la législation sur l’immigration, la classe sociale et d’autres factures façonnent la manière dont le COVID-19 a étè ressenti par les gens du monde entier.”
Next to the text is an image of a healthcare worker (who appears to be not white) in blue, wearing gloves, wearing a mask, and with hair tied up. À côté du texte se trouve l’image d’un.e travailleur.se de la santé (qui semble ne pas être blanc.he) en bleu, portant des gants, un masque et les cheveux attachés.
Panel 5: There are two panels, with text around them and images inside. Il y a deux panneaux, avec du texte autour et des images à l’intérieur.
On the left, the text around the panel reads / À gauche, le texte autour du panneau dit: “Capital shapes not only our relationship to labour, but also our relationship to health (and who gets heathcare).”
On the right, the text around the panel reads / À droit, le texte autour du panneau dit: “Le capital façonne non seulement notre rélatuion au travail, mais également notre relation à la santé (et qui reçoit des soins de santé)” Under, it reads: (Adler-Bolton and Vierkant 2022)
On the left, there is a drawing of a white deliveryperson who is pushing a trolley with a number of packages on it, including / À gauche, le dessin d’un livreur blanc qui pousse un chariot sur lequel se trouvent plusieurs colis, dont “HIGH RISK LOW PAY,” “MASKS,” “N95,” “FREE? TESTS.” Below, it reads / En dessous, on peut lire: “The surplus, or surplus populations, can therefore be defined as a collective of those who fall outside of the normative principles for which state policies are designed, as well as those who are excluded from the attendant entitlements of capital.”
On the right, there is a drawing of two white people. The person on the left is white, has shoulder-length hair, is wearing glasses, and is named as “Beatrice Adler-Bolton.” The person on the right is white, is wearing less tinted glasses, has a beard, and short hair, and is named as “Artie Vierkant.” / À droite, il y a le dessin de deux personnes blanches. La personne de gauche est blanche, a les cheveux longs, porte des lunettes et s’appelle “Beatrice Adler-Bolton”. La personne à droite est blanche, porte des lunettes moins teintées, a une barbe et des cheveux courts, et s’appelle “Artie Vierkant”.
Below, it reads / En dessous, on peut lire: “Le surplus, ou les populations excédentaires, peuvent donc être définis comme un collectif de ceux ne relèvent pas des principes normatifs pour lesquels les politiques de l’État sont conçues, ainsi que de ceux qui sont exclus des droits afférents au capital.”
Panel 6: There are two panels, with text around both. On the left, it reads / Il y a deux panneaux, avec du texte autour des deux. À gauche, on peut lire: “Disability justice organizer Mia Mingus reminds us that political refusals cost disabled lives.” Inside the square is a skeleton in brown ground, with some grass. A l’intérieur du panneau se trouve un squelette dans un sol brun, avec un peu d’herbe.
Inside the right panel, the text reads / À l’intérieur du panneau droit, le texte dit: “We will not trade disabled deaths for abled life. We will not allow disabled people to be disposable or the necessary collateral damage for the status quo.” “Nous n’échangerons pas les décès d’handicapés contre une vie valide.” The right panel has a drawing of an IV hanger. Le panneau de droite présente le dessin d’un support de perfusion.
Panel 7: A spread with three panels. Two on either side have drawings of masks on the ground, with leaves and dirt. Below the left, it reads, “Que se passe-t-il lorsque les infrastructures de soins collectifs son mises au rebut, jetées au nom du “choix” individuel ?” / Une page avec trois panneaux. Deux de chaque côté ont des dessins de masques sur le sol, avec des feuilles et de la terre. En bas à gauche, on peut lire, “Que se passe-t-il lorsque les infrastructures de soins collectifs son mises au rebut, jetées au nom du “choix” individuel ?”
In the middle panel, the text reads / Dans le panneau du milieu, le texte se lit comme suit: “We will not look away from the mass illness and death that surrounds us or from a state machine that is more committed to churning out profit and privileged comfort with eugenic abandonment.” “Nous ne détournerons pas les yeux de la maladie et de la morte de masse qui nous entournent ou d’une machine d’État qui east plus déterminée à générer des profits et un confort privilégié avec un abandon eugénique.”
On the right, it reads / À droit, le texte dit: “What happens when collective care infrastructures are discarded, thrown away in the name of individual “choice”?”
Panel 8: A spread of two panels. On the left, around the panel, the text reads, “What happens when COVID-19 is still here, but the infrastructure is being torn down?” Inside, is a drawing of a sign that reads “Couvre visage obligatoire / Masks required” taped to a door. / Deux panneaux. À gauche, autour du panneau, le texte a dit : “What happens when COVID-19 is still here, but the infrastructure is being torn down?” À l’intérieur, le dessin d’un panneau indiquant “Couvre visage obligatoire / Masks required” collé sur une porte.
On the right, around the panel, it reads / A droite, autour du panneau, le texte a dit: “Que se passe-t-il lorsque le COVID1-9 est toujours là, mais que l’infrastructure est en train d’être démolie ?” Inside the panel is a drawing of the tape on the door with part of the sign still remaining, but most is missing. / À l’intérieur du panneau se trouve un dessin du ruban adhésif sur la porte. Il reste une partie du panneau, mais la majeure partie est manquante.
Panel 9: Two panels. On the left, it reads (Silverstein and Lincoln 2022). / Deux panneaux. À gauche, on peut lire (Silverstein et Lincoln 2022).
On the left around the panel, it reads / À gauche, autour du panneau, on peut lire: “Broken pandemic infrastructures were not the “ça va” many of us hoped for.” Inside the panel, it reads / À l’intérieur du panneau, le texte dit : “How did the united States end up desensitized to mass death and disability, angrily opposed to almost all means of mitigating an occasionally fatal airborne virus, and willing to accept so little from the powerful?” “Comment les États-Unis ont-ils fini par êtr désensibilisés à la mort et à l’incapacité de masse, opposés avec colère à presque tous les moyens d’atténuer un virus aérien parfois mortel, et prêts à accepter si peu des puissants?”
Around the right panel, it says / Autour du panneau de droite, le texte a dit: “Infrastructures pandémiques brisées n’ont pas été les “ça va” que beaucoup d’entre nous avaient éspérées.” Inside the panel is a drawing of two people. On the left, is a drawing of a white person with glasses and brown hair, who is named Martha Lincoln. Below, is a drawing of a white person with brown hair and a beard named Jason Silverstein. / À l’intérieur du panneau se trouve le dessin de deux personnes. À gauche, le dessin d’une personne blanche avec des lunettes et des cheveux bruns, qui s’appelle Martha Lincoln. En dessous, se trouve le dessin d’une personne blanche aux cheveux bruns et à la barbe, nommée Jason Silverstein.
Panel 10: A panel spread that has a drawing of COVID-19 case estimates in brown (data via INSPQ), and a drawing of a lung with a brown trachea with blue lungs. Un panneau avec un dessin des estimations de cas COVID-19 en brun (données via INSPQ), et un dessin d’un poumon avec une trachée brune avec des poumons bleus.
The text reads / Le texte dit: “While state infrastructure remains broken, we still take care of each other…” “Alors que l’infrastructure de l’État reste brisée, nous prenons toujours soin les un.e.s des autres…”
Below, it reads / En dessous, le texte dit: “…through wave peaks and troughs.” “…à travers les pointes et creux des vagues.”
Panel 11: Two panels. / Deux panneaux.
On the left, around the box, it reads / À gauche, autour de la boîte, le texte dit: “We are not singular beings: we are social animals, and we depend on each other.” Inside (in light brown text on dark brown), it reads / À l’intérieur (en texte brun clair sur brun foncé), le texte a dit: “Interdependence acknowledges that our survival is bound up together, that we are interconnected and what you do impacts others. If this pandemic has done nothing else, it has illuminated how horrible our society is at valuing and practicing interdependence. Interdependence is the only way out of most of the most pressing issues we face today.” (Mingus 2022) is on the left / est à gauche.
Around the right panel it reads / Autour du panneau de droite, le texte a dit: “Nous ne sommes pas des êtres singuliers: nous sommes des animaux sociaux, et nous dépendons les un.e.s des autres.” Inside, it reads (in dark brown text on light brown) “L’interdépendance reconnaît que notre survie est liée, que nous sommes interconnectés et que ce que vous faites a un impact sur les autres. Si cette pandémie n’a rien fait d’autre, elle a mis en lumière à quel point notre société est horrible à valoriser et à pratiquer l’interdépendance. L’interdépendance est le seul moyen de sortir de la plupart des problèmes les plus urgents auxquels nous sommes confrontés aujourd’hui.”
Panel 12: A spread with text and images of the first panel’s stickers of feet and “2m,” but it is largely missing. Un panneau avec le texte et les images des autocollants de pieds et de “2m” du premier panneau, mais il est en grande partie absent.
The text reads / Le texte a dit: “COVID-19 infrastructure has begun to scuff, peel, and fade away. After a few years of pandemic life, I now realize: ” “L’infrastructure COVID-19 a commencé à s’érafler, às se décoller et à disparaître. Après quelques années de vie pandémique, je réalise maintenant :” “« ça va bien aller » is not a guarantee but a hope, only possible through interconnectedness.” “« ça va bien aller », ce n’est pas une garantie mais un espoir, uniquement possible grâce à l’interdépendance.”
Adler-Bolton, Beatrice, and Artie Vierkant. 2022. Health Communism: A Surplus Manifesto. Verso Books.
Institute national de santé publique du Québec (INSPQ). n.d. “Données COVID-19 au Québec.” INSPQ: Centre d’expertise et de référence en santé publique. Accessed February 05, 2023. https://www.inspq.qc.ca/covid-19/donnees.
Mingus, Mia. 2022. “You Are Not Entitled To Our Deaths: COVID, Abled Supremacy & Interdependence.” Blog. Leaving Evidence (blog). January 16, 2022. https://leavingevidence.wordpress.com/2022/01/16/you-are-not-entitled-to-our-deaths-covid-abled-supremacy-interdependence/.
Silverstein, Jason, and Martha Lincoln. 2022. “Why We Fight.” Blog. Peste (blog). December 13, 2022. https://www.pestemag.com/first-row/why-we-fight-w55lm.
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Christy Tending | Longreads | February 2, 2023 | 14 minutes (3,768 words)
There are things that able me. A chair. One person speaking to me at a time. Shoes that are not cute, but spare me nerve pain. A hot bath with epsom salts: so hot it would scald most, but my skin is like Kevlar. It craves the heat and wishes for it to dig deeper. These are simple but necessary things that make my life more livable.
They do not “enable,” marking conspiracy in a habit I am trying to quit; I am not done yet with my propensity for being alive in the world and I’m not ashamed of what these things offer. They able me. They render me capable of basic participation in my life in its myriad and fantastical forms: watching my child play soccer; eating dinner with my family; browsing through my favorite bookstore; coordinating a protest; hiking with my friends.
These accommodations — and others I require but have not named — are not merely comfortable, but necessary, an antidote to the ways the world, as it is, dis-ables me. The way the world tries to tell me that simple pleasures do not belong to me. Due to the burdensome inefficiencies of my body, I deserve exclusion.
When I train activists in street protests and direct action, which is my avocation in this lifetime, one of my rules is “One Diva, One Mic,” which is to say, “Please shut the fuck up when someone else is talking because my brain cannot process multiple sounds at once.” I talk about how a motorized scooter can make for an excellent blockade tool. Disability is not the same as vulnerability; I have been deemed broken, but am not fragile. And when I raise my voice in service of my needs, I am teaching others to do the same. When we meet our needs together, we are building the world we want to live in.
Disability is not the same as vulnerability; I have been deemed broken, but am not fragile. And when I raise my voice in service of my needs, I am teaching others to do the same. When we meet our needs together, we are building the world we want to live in.
Translation and interpretation take many forms. Sometimes, to make someone able and free to participate is simply to speak in a language they can understand. Sometimes, when my husband and son are both talking to me at the same time, I put up both hands and say, “Chotto matte, kudasai,” which means, “Please wait a moment” in Japanese (which means I am serious; when the white person starts snapping at them in Japanese, they know it’s serious). Auditory overwhelm means I need quiet and accommodation from my own family.
My son brings me a pillow for my back, and then climbs into my lap. I am cushioned and I am cushion. This is how care happens.
If my life were a cheesy ’80s movie, it would open in freeze frame: me, lying on a field, trapped underneath a pony who crashed to the ground with me as his only buffer; my exasperated voiceover saying, “You may be wondering how I got here.” I was 12, about to enter the seventh grade.
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In the film (as it was in life), the pony stands up on my left femur, righting itself. I have a concussion and a broken nose and a horseshoe print on my thigh. I am taken, in cervical collar, away in an ambulance. The horseshoe bruise is so thick I can’t fully zip up my chaps for a couple of weeks. The film speeds up, hurtling me through time. I cannot tell you when the pain began, but underneath the pony is a good time to start.
At 12, I did not have the context or the language to understand what I was becoming or, more specifically, what was becoming of me. It took years, decades of working with and through disability justice frameworks to fully give myself over to incorporating disability as a part of my identity and to understand how disability colors my life and my self-perception.
When I did, it became easy to catalog: scoliosis, clinical depression, complex post-traumatic stress disorder, generalized anxiety, chronic headaches, auditory processing issues, ADHD. This is not exhaustive, but the rough sketch of things. This list does not account for my humanity — the person experiencing all of this — only how I am failing to measure up to the demands of capitalism. People want to know, without putting it quite this way, how I am compensating for these shortcomings. They very nearly ask for an apology that is not coming.
More than once, someone has told me they couldn’t “live like that.”
I have finally gained the fluency I needed to recognize and appreciate and celebrate myself as disabled. I do not embrace the term for having accomplished or overcome anything, and not as a signal of defeat (although there are plenty of people who love to see it that way), and certainly not as a beacon of “inspiration,” but as a loving gesture toward myself. To see myself as disabled is the entrypoint to access what some call self-care, but I call compassion.
Disability is not a sign of failure to care properly for myself, but as the beginning of meeting myself with the tenderness I require to move through the world. It is still a radical statement to meet your own needs without prerequisite, without means-testing your efficiency under capitalism. Acknowledging myself as disabled means I can then work to subvert the forces disabling me. Which begins with my worth and what goodness means. When I tell people, “I’m disabled,” they cock their heads to one side and frown. “Don’t say that,” they respond, bottom lip plump. I know I am supposed to comfort them, to take it all back, to smooth things over. Disability shames us both: the witness and the showgirl. Their embarrassment tells me I have subverted the unspoken contract. I do not want to soothe them; I am worth knowing myself.
At 12, all I knew was that other kids my age did not talk about pain in the way I did. Pain did not interfere with their experience of being 12. The other kids seemed limitless. I felt limitless in other ways: to ride bareback through the streams and ponds and fields and forests and hills of Maryland, without adult supervision, is the closest thing to pure, uncut freedom I can imagine for a middle-schooler.
The hardest thing is standing still. There is something about being upright, stuck in place, that is agony for my spine, my hips, my feet, my knees. Any arch support will ultimately fail if I am forced to be in one place without a chair for long. It feels like my brain is melting. I cannot form sentences and my peripheral vision grows dark.
Which is not to say in horseback riding I was immune to injury or consequence, but for a time, I was exempt from the force of gravity on my joints. I could find freedom in my partner. Together, we could fly. Part of freedom was the knowledge that our problems were ours to own, to fix or fumble.
In hindsight, it is difficult to untangle, like a well-plied yarn, what was chronic injury and what was the insidious beginning of chronic pain. When I was recovering from multiple concussions from horseback riding, I assumed if I simply stopped injuring myself, I would stop hurting. People would jokingly say, “Wait until you get to be my age!” As though pain is the exclusive domain of those over 40. As though I could not know agony at 12 or 14 or 16. I could. I thought, I am, right now. This kind of gaslighting is obviously harmful, when you say it out loud. Our society is so skilled at telling children not to trust themselves: to ignore their bodies’ signals, to focus on a body’s aesthetics, and to only value its abilities.
When my son says he is finished with dinner, I tell him the same thing each time: Thank you for listening to your body, no matter whether he’s had a fourth helping or eaten three bites. The quantity of food he consumes is not a goal in itself. I don’t care if he didn’t want to try the new thing I offered. What could be less my business than what another person eats?
***
Pain exhausts my mind. Stress and anxiety and depression exacerbate the pain. My disability keeps me so busy that I meet myself coming and going, like in the Dunkin’ Donuts commercial. It is both time to make the donuts; and I have already made the donuts.
What counts as disabled? (This is the same question I have been asking about my queerness since I knew enough shame to wonder: What is enough to count? To be worthy of being seen? To be real in the world?) I couldn’t tell you the answer, nor am I interested in policing anyone else’s experience of disability. I don’t really care anymore, if I’m honest, because I cannot know by looking at someone, and neither can you. What I do know is inquiry and identity give us access: to ourselves, to language, and finally to the accommodations that might actually grant us access. Identifying as disabled means I stand a chance of getting what I need. Much the way my pain is not static, being disabled is not a fixed position, necessarily. What if our needs were met? What if our unique way of being was honored?
I have never felt like enough. Not queer enough or disabled enough or mentally ill enough or enough like a mother, to qualify. It is not my reluctance, but my fear of taking someone else’s place, someone truly worthy. Someone who is enough. It is not internalized ableism, but my fear of claiming who I am as someone else decides I am a fraud; a heartbreak beyond words. There is stigma, of course. If I claim my disability, will it be turned against me? Like the boy in fifth grade, years after I knew I liked girls but years before I claimed a queer identity, who called me a dyke as though that’s a bad thing. I avoided getting sober for years because I wasn’t enough of a drunk; I hadn’t properly suffered.
I never reached the bottom. Or maybe there is no bottom — not really. At 40, I know who I am. Disabled, queer, mad as hell. Sober.
At 40, I know who I am. Disabled, queer, mad as hell. Sober.
When I was still riding, I was often asked to ride other people’s horses and, for lack of a better phrase, “Show them who was boss.” My father’s horse was an enormous black Trakehner, an East Prussian warmblood who did not always do what my father asked of him. So sometimes I, at 16 weighing 100 pounds, would hop aboard. Patrick would turn his head toward me, I would pet his nose, and then we would fly. Patrick would do whatever I asked. He was capable and athletic, and he knew despite my tiny size, I wasn’t going to take no for an answer. He also knew I wouldn’t ask him for anything he couldn’t do. I couldn’t muscle my way into making horses do what I wanted, but they learned to trust me all the same. I had a pony once who loved me so much he would come running across the field at the sound of my voice. I didn’t need to use a halter and lead-shank: He would heel like an overgrown golden retriever, eager to please. He would follow me to the barn, with his enormous head against my hip. He’d stand and rub his face against my rib cage as I tacked him up.
This is all to say my riding skill didn’t rest on authoritarianism or brute force. It was my intuition, compassion, and trust. It was a mutual effort. Horses, like most prey animals, can be tightly wound. My senses also had a hair trigger. One false move, and the muscles around my spine would spasm. Together, we could process an overwhelming amount of sensory input and turn it into something graceful and harmonious. In the face of the pain of daily life, this was my solace: working in tandem with another being, often just as terrified by the threat of disaster as I was.
Show-jumping has a steady rhythm: short outside lines, long diagonals. There are flower-boxes and soft dirt, birds in the rafters, a cool breeze, and an early sunset when you’re showing in October. Heels down, hands soft. Sometimes, you can walk the course with big strides, marking your lead change with a heel: a little hop to ease you around the corners.
I could read the subtle energy in my body more easily than my peers who hadn’t had to wonder why they woke up with neuropathy in their shoulder or why their spines sounded like breakfast cereal when they bent over. But those neural pathways also gave me information: Dig your heels in here, lift your hips now — and when I did, my pony would sail over the jump, lifting us both. Riding doled out injury and served as a balm for my more ordinary chronic pain.
My body gave its lessons early. This is not forever. For better or worse, this will not last.
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When I say I am disabled, this is what I mean: I am tired of not getting my needs met. I am tired of basic human needs being an afterthought. If I am “giving up,” the only thing I am truly sacrificing is the illusion of exceptionalism and individualism that got me into this mess in the first place. I am burning down the myth of self-sufficiency — or the idea that self-sufficiency should be a goal unto itself. I am surrendering the idea that I am a burden for having needs. I am demanding to be a part of the team and to be honored for what I bring to it.
It is expensive and time-consuming to be disabled. While I am not afraid to have my needs met, it is exhausting to have to advocate for myself every waking minute. It takes so much more time and energy and support to get what I need. It takes thought and preparation and resources to move through the world. Being disabled is also tremendously boring: Sometimes the days stretch out into weeks or months when I wish I were doing something besides my healing slog. I know the words will be back; I know one day my body will endure sitting at a desk again. Or maybe it won’t, and I will ponder that when it comes. There is no way to account for how I spend my days during those phases of necessary interiority.
For years, the person-first identity was pervasive. “People with disabilities,” they would say. But my disability is not luggage, separate from myself. And there is a kernel of truth inside me: Had the values of capitalism, white supremacy, and colonialism not crept so pervasively into our collective consciousness, I would not have been rendered disabled in the same way. If we, collectively, engaged in mutual aid in more than fits and starts, then perhaps insisting on having my needs met would not seem so anachronistic. Instead, I am seen as entitled when I meet my needs, and yet pitied for having needs at all. How pathetic, they seem to say. How cringe.
When they tell us we’re people first — that we shouldn’t say “disabled people” — it feels as though they are worried that one day we will implicate who has disabled us and who continues to poison and maim us as we try to heal. Their brand of capitalism is the same one that demands endless growth, even from those of us who do best lying fallow in the afternoons. The ones who insist on ceaseless cheerfulness. I have pulled myself up by more bootstraps than I can count. But I know this: After you have pulled yourself up, the horse carries you.
Their brand of capitalism is the same one that demands endless growth, even from those of us who do best lying fallow in the afternoons.
Part of the trouble with invisible disabilities is that you keep having to explain yourself. I’m not lazy, I want to say. And yet, in certain contexts, I am, in turns, “a hearie,” “a walkie,” and so on. In those moments it is my turn to be a facilitator: to make space, to create connections, to meet needs where I can, to help patch the way between here and access. This means knowing who needs to leave at what time so they can make it to work; who needs to be on the left side of the stage to hear; or who might need the Advil or Clif Bar or extra pair of socks I have stashed in my bag. I move as deftly as I can, remembering to create for others the conditions for getting their needs met, one cell in the body of a complex organism. This is what community care can look like. Sometimes it means giving and other times, receiving. Sometimes, it simply means making sure that everyone in the group knows where I am and where to find me so that I can troubleshoot. At the very least, my work is to help create an atmosphere where those who have needs know they belong. All good activism, even street protests, begin with consent; people should be able to move back or away or into a different mode at any moment, without shame. The group’s work is to respond with care to the needs of its individuals, even when those needs shift.
I am still learning, fucking up, apologizing, fumbling forward. If inquiry offers me the gift of understanding myself as someone who has been disabled in certain contexts, it also yields this knowledge: In other contexts, I am not. And in those cases, I have the obligation to tear down barriers that, while not an issue for me personally, oppress others. While my disabilities’ invisibility in some contexts robs me of being taken seriously, at times being able to be covert, to fly under the radar, lends me a certain kind of power. It comes with responsibility.
Some of my favorite protests are the ones where I can play a specific role, one that feels well-worn and comfortable for me, without having to do the heavy lifting of organizing. Let me block traffic or wrangle reporters or talk to the cops, things that might feel scary for younger activists, without the actual, real work of logistics and getting people to show up. Often at protests, I feel like something between a camp counselor and a firefighter, spending my time handing out Clif Bars and extinguishing conflicts before they can overtake the group (and the message we’re trying to send).
In the summer of 2019, a coalition of groups staged protests outside of the ICE building — to protest family separation at the border and Trump’s draconian immigration policies — in downtown San Francisco every day during August, with a different group “adopting” a day during the month. I went to six or seven events. My favorite was when I was asked to be the police liaison for a coalition of disability justice groups who had committed to anchoring the action. I find freedom in being somewhat mercenary.
And yet, in certain contexts, I am, in turns, “a hearie,” “a walkie,” and so on. In those moments it is my turn to be a facilitator: to make space, to create connections, to meet needs where I can, to help patch the way between here and access.
I am not big or scary, but I have a set of skills. I know how to talk a security guard out of messing with our equipment. I know how to move the larger group to protect a higher-risk few. I know when a tense situation can be dissolved with singing or when to raise the energy of the group with a chant. I know how to watch the police and to recognize their gear. I can translate what they’re wearing into an understanding of how they are reading our action. Do they read us as a threat? Should we read them that way? I have learned to do this so that those who should be at the center can focus on the message. I am fluent enough in these to “Show them who’s boss.” I’m there to do my job invisibly: decentering myself and using my skills as a crowbar. My work in those moments is to leverage my experience and my credibility to create ease, a feeling of safety, and ample space, so the organizers can do their real work of delivering the message, rather than worrying about the cops.
The message is this: No body is disposable. No one is illegal. Migrant justice is inextricable from disability justice.
In the middle of the action, things are calm. What I know is activism in San Francisco is safer than most other places — especially places where they aren’t used to it. I’ve done actions in rural logging towns and in smaller cities like Charlotte, North Carolina, and Minneapolis, Minnesota, and I’ve learned: It’s more dangerous when the police are scared or surprised or don’t know what to expect. It’s riskier when they are excited to get to try out all their pretty, shiny toys on you, not knowing how they really work. Boring is the best case scenario. Everyone knew their role. I, as a “walkie,” roamed the crowd, to watch the police, communicate with them when necessary, translate information back to the group and keep folks from coloring too far outside the lines. Sometimes that means honoring our shared action agreements not just to protect ourselves from becoming targets, but protecting the more vulnerable folks we’re working with. Acting as a beacon and a deterrent.
Afterward, I went home and spent the next couple of days lying down as much as possible, feeling the impact of my heels on the asphalt radiating up into my lower back, the exhaustion of holding myself upright and alert. The residual adrenaline I feel from my PTSD needs time to dissipate, no matter how chill the cops are. Sometimes, this healing is private, but built-in recovery time is a necessary part of my activism. I am not as elastic as others.
If reminding people I am disabled is what it takes to let people know I have needs or they should quit being ableist, then so be it. If I have to out myself — to tattle on my chronic pain — to get a chair, fine. I will never apologize for it or undermine myself again. I will never downplay what I feel or what I need. I am worth getting my needs met, with or without a disability. I am worth taking up space. And, I have learned, if I do not take up space in the places I fear I am not enough, there will be no space for me at all.
***
Christy Tending (she/they) is an activist, writer, and mama living in Oakland, California. Her work has been published or is forthcoming in Catapult, Electric Literature, Permafrost Magazine, Newsweek, and Insider, among many others. Her first book, High Priestess of the Apocalypse, is forthcoming from ELJ Editions. You can learn more about her work at www.christytending.com or follow Christy on Twitter @christytending.
Editor: Krista Stevens
Copy editor: Cheri Lucas Rowlands
At Lux, Natalie Adler discusses two new books about disability: Health Communism by Beatrice Adler-Bolton and Artie Vierkant, and The Future is Disabled by Leah Lakshmi Piepzna-Samarasinha. Both books, Adler explains, “share the underlying assumption that capitalism makes us sick.” Adler surfaces a number of interesting points that the authors lay out in Health Communism, like how we’re conditioned to view health as an end goal — something we could one day have, namely by paying for it — and disease as something temporary, or repairable with money. “I’ve come to realize that the bifurcation between the sick and the well, the disabled and the able-bodied, is capitalism’s intervention,” writes Adler. “In reality, there are just bodies, just us.”
Likewise, in The Future is Disabled, Piepzna-Samarasinha urges us to look beyond the binary between sickness and health, but is also focused on the mutual aid, community, and connection between disabled people and disability activists. “Disabled people are already weathering the end of the world and are keeping each other alive,” writes Adler, “and so disabled knowledge and skills are exactly what we need to survive the future.” Adler goes on to say that both of these books challenge us to view everyone’s lives as vulnerable. Only then can we overhaul, and adapt to, an unjust system.
We now live in a time where we could deal with or even cure many of our ailments, but we are priced out of care or don’t have the time to access it — or we choose not to seek it, because interacting with the medical establishment can be a degrading experience, marred by medical racism and sexism and ageism and homophobia and transphobia and fatphobia and more. So perhaps it’s more accurate to say that capitalism keeps us sick.
Since the 1970s, Judith Heumann has worked tirelessly for human rights and dignity, for "equal rights in an unequal world" for disabled people. Working with non-profits, NGOs, and community-based groups, Judy is a fierce advocate, a "Rolling Warrior." Diagnosed with polio at a young age, Judy has lived the majority of her life in a wheelchair, and the majority of that life creatively struggling to transform the world. — Read the rest
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