- Aug 2023
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getwellsoon.labr.io getwellsoon.labr.io
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A text by Johanna Hedva The language of illness is a language of platitudes. Get well soon. Hoping for a quick recovery. Sending love. Take care in this tough time. Adjectives become few: quick, tough. The same verbs are used over and over: get, send, take, hope. The language of revolutions is also one of platitudes. Ain’t no power like the power of the people ’cause the power of the people won’t stop, say what. The people united will never be divided. No no we won’t go. No matter what they are asking for, protesters chant the same chants, their signs shout the slogans of before. When we are desperate for change, as we are both in illness and insurrection, our language drains of complexity, becomes honed to its barest essentials. We feel we cannot waste time with adjectives or similes or hypotaxis. No, we have a message to get across, and it’s crucial and immediate; we can’t afford to risk its meaning getting lost in too many words. As illness and revolution persist, though, the language made in them and about them deepens, lets in more nuance, absorbed in the acutely human experience of encountering one’s limits at the site of the world’s end. Are these my own limits, or are they the limits of the world? As they share a quality of language, illness and revolution both exist in similar kinds of time, the kind that feels crushingly present. The time is now, and it is long. However, the temporality in each can feel quite different, at first. In illness, time slows down so extremely as to become still and unbearably heavy. For the sick person, or someone caring for the sick, time freezes, hardening around the body, locking everything into this new center of gravity. All that can be done is to wait. The future gets further and further away, and the present moment—the one soaked in illness—becomes huge and cruel. In illness, the now feels like punishment. In revolution, when it’s still young and fervent, time froths around the fact that the time is now. No longer will we do what we’ve done in the past, from today forward, we will!—and it doesn’t matter what comes next, its function is the same. The promise of change, the zeal for a new tomorrow, the hope for a different future: these innovate the now, and the now becomes a joyous defiance of fate. At some point, though, the revolutionary now shifts toward the now of illness, wedged into what Arendt called “between past and future,” never-ending, waiting for change to come, waiting, still, waiting. Conversely, as many chronically ill and disabled folks know, the now of illness soon radicalizes, reveals its subversive power, and produces a politic. We tend to place illness and revolution opposite each other on the spectrum of action: illness is on the end of inaction, passivity, and surrender, while revolution is on the end of movement, surging and agitating. But maybe this spectrum is more like an ouroboros: one end feeding the other, transforming into, because of, made of the same stuff as the other. Many thought the revolution, when it came, would look like how it’s looked before: a protest in the streets, some good looting and riots, a coup, a mutiny. The world has been anticipating the fury that’s been building up, in everyone and everything, about everyone and everything, and we’ve ached for it to finally boil over and erupt. Now might be a good time to rethink what a revolution can look like. Perhaps it doesn’t look like a march of angry, abled bodies in the streets. Perhaps it looks something more like the world standing still because all the bodies in it are exhausted—because care has to be prioritized before it’s too late. Those of us for whom sickness is an everyday reality have long known about its revolutionary potential. We’ve known that a revolution can look like a horizontal body in a bed, unable to go to work. We’ve known that it might look like hundreds of thousands of bodies in bed, organizing a rent strike, separating life’s value from capitalist productivity. We’ve known that a revolution can look like the labor of a single nurse, keeping the patients in her ward alive, or the labor of a single friend, helping you buy groceries. We’ve known that it can look like the labor of nursing and care expanded exponentially, all of us reaching out to everyone we know, everyone we know reaching out to theirs. We’ve known that a revolution can look like a community pitching in $5 per person for someone’s medical treatment—we’ve wondered when that community would notice just how revolutionary the act of communal care is. The world has changed into something unrecognizable in these last weeks. The interminable now of illness is upon us, and the world’s ableism has risen forcefully to meet it. The world’s ableism has always been a thing, it’s just now getting closer to those who normally don’t feel it. What we’re watching happen with COVID-19 is what happens when care insists on itself, when the care of others becomes mandatory, when it takes up space and money and labor and energy. See how hard it is to do? The world isn’t built to give care freely and abundantly. It’s trying now, but look how alien a concept this is, how hard it is to make happen. It will take all of us—it will take all of us operating on the principle that if only some of us are well, none of us are. And that’s exactly why it’s revolutionary. Because care demands that we live as though we are all interconnected—which we are—it invalidates the myth of the individual’s autonomy. In care, we know our limits because they are the places where we meet each other. My limit is where you meet me, yours is where I find you, and, at this meeting place, we are linked, made of the same stuff, transforming into one because of the other. Care so often feels as though it has to be given to you by someone else, and this can also seem how revolution feels. We wait for the change to be given to us by those in control, we hope for those in power to come to their senses. So many activists know that as power can be taken, it can be taken back. As care can be given, we can also take it. I’ve always found solace in the fact that the words caregiver and caretaker mean the same thing. We take care, we give care, and it can be contagious, it can spread. It shows us that the limit of the world is always a place to be exploded, pushed against, transformed. Meet me there, at the end, where there is give and take, and let’s follow each other into the beginning.
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- Mar 2022
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www.thelancet.com www.thelancet.com
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Unwin, H. J. T., Hillis, S., Cluver, L., Flaxman, S., Goldman, P. S., Butchart, A., Bachman, G., Rawlings, L., Donnelly, C. A., Ratmann, O., Green, P., Nelson, C. A., Blenkinsop, A., Bhatt, S., Desmond, C., Villaveces, A., & Sherr, L. (2022). Global, regional, and national minimum estimates of children affected by COVID-19-associated orphanhood and caregiver death, by age and family circumstance up to Oct 31, 2021: An updated modelling study. The Lancet Child & Adolescent Health, 6(4), 249–259. https://doi.org/10.1016/S2352-4642(22)00005-0
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- Jan 2022
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twitter.com twitter.com
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Deanna Behrens, MD (she/her). (2022, January 30). One U.S. child loses a parent or caregiver for every four COVID-19-associated deaths I’m not discounting mental health effects of the pandemic on children. That is real. But the risks associated with #COVID19 for children and its affects on them aren’t always obvious [Tweet]. @DeannaMarie208. https://twitter.com/DeannaMarie208/status/1487607849664581634
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- Sep 2021
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www.imperial.ac.uk www.imperial.ac.uk
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Global study estimates 1.5 million children have lost a caregiver from COVID-19 | Imperial News | Imperial College London. (n.d.). Retrieved September 14, 2021, from https://www.imperial.ac.uk/news/226833/global-study-estimates-15-million-children/
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- May 2021
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www.ncbi.nlm.nih.gov www.ncbi.nlm.nih.gov
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Ames, H. M., Glenton, C., & Lewin, S. (2017). Parents’ and informal caregivers’ views and experiences of communication about routine childhood vaccination: A synthesis of qualitative evidence. The Cochrane Database of Systematic Reviews, 2017(2). https://doi.org/10.1002/14651858.CD011787.pub2
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- Mar 2021
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psyarxiv.com psyarxiv.com
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Peris, T. A., & Ehrenreich-May, J. (2021). The Parents are Not Alright: A Call for Parental Mental Health Screening During the COVID-19 Pandemic. PsyArXiv. https://doi.org/10.31234/osf.io/xzf2c
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- Feb 2021
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psyarxiv.com psyarxiv.com
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Prime, H., Wade, M., May, S., Jenkins, J., & Browne, D. (2021). The COVID-19 Family Stressor Scale: Validation and Measurement Invariance in Female and Male Caregivers. PsyArXiv. https://doi.org/10.31234/osf.io/7328w
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- education
- disruption
- USA
- child
- caregiver
- is:preprint
- welfare
- responsibility
- need
- stress
- parent
- survey
- finance
- mental health
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- UK
- global
- COVID-19
- parental mental health
- lang:en
- career
- child mental health
- social
- wellbeing
- family
- social disruption
- pandemic
- Australia
- Canada
- family stress
- basic need
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- Aug 2020
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www.bmj.com www.bmj.com
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Thornton, J. (2020). Covid-19: Care homes in Belgium and Spain had “alarming living conditions,” says MSF report. BMJ, 370. https://doi.org/10.1136/bmj.m3271
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- Jul 2020
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www.youtube.com www.youtube.com
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Meeting the psychological needs of people recovering from severe coronavirus. (2020, May 7). https://www.youtube.com/watch?v=6hAUUTdhHlc&feature=youtu.be
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www.youtube.com www.youtube.com
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Meeting the Needs of People with Dementia Living in Care Homes during Covid-19. (2020, May 1). https://www.youtube.com/watch?v=blJjUwBhVpk&feature=youtu.be
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- May 2020
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www.health.gov.au www.health.gov.au
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Australian Government Department of Health (2020, April 1). Coronavirus (COVID-19) – Restrictions on entry into and visitors to aged care facilities [Text]. https://www.health.gov.au/resources/publications/coronavirus-covid-19-restrictions-on-entry-into-and-visitors-to-aged-care-facilities
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- caregiver
- elderly
- vaccination
- restriction
- vaccine
- seniors
- flu
- Australia
- visitor
- healthcare worker
- is:pdf
- aged care facility
- influenza
- COVID-19
- lang:en
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catalyst.nejm.org catalyst.nejm.org
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Guney S., Daniels C., & Childers Z.. (2020 April 30). Using AI to Understand the Patient Voice During the Covid-19 Pandemic. Catalyst Non-Issue Content, 1(2). https://doi.org/10.1056/CAT.20.0103
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psyarxiv.com psyarxiv.com
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Higbee, T. (2020, April 18). Mattson, Higbee, Aguilar, Nichols, Campbell, Nix, Reinert, Peck, and Lewis-BAP Criando e compartilhando atividades digitais de instrucao. https://doi.org/10.31234/osf.io/9x7mj
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psyarxiv.com psyarxiv.com
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Higbee, T. (2020, April 17). Mattson, Higbee, Aguilar, Nichols, Campbell, Nix, Reinert, Peck, and Lewis-Digital Materials Tutorial BAP. https://doi.org/10.31234/osf.io/9gwpj
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psyarxiv.com psyarxiv.com
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Britwum, K., Catrone, R., Smith, G. D., & Koch, D. S. (2020, May 5). A University Based Social Services Parent Training Model: A Telehealth Adaptation During the COVID-19 Pandemic. https://doi.org/10.31234/osf.io/gw3cd
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- Apr 2020
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psyarxiv.com psyarxiv.com
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King, E. K., Harrell, A. R., & Richling, S. (2020, April 18). Best Practices: Caregiver Training Resources Derived from Remote Behavioral Service Delivery within the Foster Care System. https://doi.org/10.31234/osf.io/k56nq
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