On Being Ill

People + Communities

Individuals

(in alphabetical order, bios pulled from their profiles)

Imani Barbarin: Comms Advisor | Disability Blogger | Content Creator | Public Speaker | Model | Actress, founder of #AbledsAreWeird, #ThingsDisabledPeopleKnow. (Tw, IG)

Jennifer Brea: filmmaker of Unrest and co-founder of ME-Action.net (Tw, IG)

Keah Brown: 🏳️‍🌈 Author of The Secret Summer Promise, The Pretty One & Sam’s Super Seats. Created #disabledandcute (Tw, IG)

Lydia X. Z. Brown: Building and sustaining love, liberation, and justice (Tw)

Jarvis DeBarry: Opinions editor @MSNBCDaily, Author of "I Feel to Believe: Collected Columns" by @unopress (T)

Molly Doris-Pierce: now: @HarvardChanSPH| prev: @HHSGov @JoeBiden

@ewarren (Tw, IG)

EbonyJanice: “HipHop Womanist, Founder @blackgirlmixtape, Master Dreamer, Cultural Anthropologist, Professor|Lecturer.” (IG)

Annie Elainey: Queer, Disabled, Latina/x content creator (YouTuber) and intersectional activist. Founded #TheFutureIsAccessible. (Tw, IG)

Erika Hart: “Sex educator, Racial/Social/Gender Justice Disruptor, Writer, Breast Cancer Survivor, Model, podcast: Hoodrat to Headwrap. (Tw, IG)

Claire Huntley: MECFS #GentleProductivity, #SomeNotNone, Gentle Yoga Videos, (IG)

Jamison Hill: Chronic illness advocate (ME/CFS) and disabled writer. (IG)

Kayle Hill: MA disability studies | advocate, organizer, writer | words in @teenvogue | now: @browngoldlevy | (Tw)

Sandy Ho: founder of the Disability & Intersectionality Summit, and the research project manager at the Community Living Policy Center at the Lurie Institute for Disability Policy. She identifies as a tea-drinking and public library-loving queer disabled Asian American woman. (Tw)

Andraéa LaVant: “President/Chief Inclusion Consultant: LaVant Consulting, Inc., Netflix’s Crip Camp. Black, Disabled and Proud.” (IG, T)

Wendy Lu: “Editor and reporter covering disability @HuffPost. Columbia j-school grad & proud Tar Heel. She/her. Writing a middle-grade novel for @NanoWrimo.” (Tw, IG)

Alyssa MacKenzie: Legit intersectional advocacy, and IRL experience and interaction. (Tw, IG)

Jillian Mercado: Model, actor, and activist changing perceptions in the abled community and creating resources with disabled and Black artists. (Tw, IG)

Mia Mingus: Writer, educator, and trainer for transformative justice and disability justice. She is a queer physically disabled Korean transracial and transnational adoptee raised in the Caribbean. (Tw, IG)

Yuh-Line Niou: Former New York State Assemblymember and Former Congressional Candidate for NY-10| loves dogs (Tw)

Morénike Giwa Onaiwu: Mom, writer, disability justice/race/gender/anti-HIV stigma advocate; survivor. Neurodivergent disabled enby WoC w/RA, alopecia & mild young-onset dementia (Tw)

Meghan O’Rourke: Author of The Invisible Kingdom: Reimagining Chronic Illness and reported on Long COVID. (Tw, IG)

Andrew Pulrang: - Disability, politics, popular culture. I'm a Baby Boom / Gen X hybrid. #CripTheVote. Forbes contributor. He/him. (Tw)

Jade T. Perry: “Writer. Speaker. Artist. Mystic. Educator. Black Feminist Tarot Reader. Disabled Babe. Queer Femme.” (Patreon, IG)

Rabbi Ruti Regan #ParshaChat. @rsocialskills Ritual research @HLSPOD. All-in on American democracy. (Tw)

Steven Spohn: COO @AbleGamers. Award winner: @thegameawards @SXSW, Motivational. Aspiring Iron Man. Guy trying to make the world a better place. He/Him. (Tw, IG)

Jessica Taylor-Bearman: Author of A Girl Behind Dark Glasses and A Girl in One Room. and A Girl Beyond Closed Doors Winner of Best Non-Fiction at The People’s Book Prize. (Twitter, IG)

Vilissa Thompson: “#DisabilityTooWhite Creator, Founder @RampYourVoice!, #Disability_Rights #Consultant, Social Worker.” (Patreon, Tw)

Alice Wong: - Disabled oracle. Founder, @DisVisibility Editor and author of books about disability culture and community. (IG, Tw)

Communities

Suffering the Silence: A community that shares the stories of those with chronic illness (Tw, IG)

MEAction: “An international network of ppl empowering each other to fight for health equality for M.E.” (Tw, IG)

Diversability: “Celebrating the diversity of our disability lived experiences through community.” (Tw, IG)

Black Disability Collective: “Sharing our stories and envisioning our future. Black disabled lives are sacred.” (Tw, IG)

But You Don’t Look Sick: “An unfiltered chronic illness community.”

Fat Rose: “Organizing and art for a fat- and crip-powered revolution.” (FatLibInk on IG)

Invalid Art: “Intersectional anti-racist disability rights / chronic illness / mental health / community / not your therapist / anti-shaming” (IG)

Hot.Crip: “Empowering disabled people and dismantling ableism meme-by-meme”

Hashtags

Chronic Illness Resources

General Chronic Illness:

• Explore a range of articles and essays in Bitch Media’s In Sickness series.

• For stories about chronic illness from humans with chronic illness, check out Suffering the Silence and watch their (free) short film series, Trust Me I’m Sick.

• The Spoon Theory is a now-classic blog post used within the chronic illness community to relay a common symptom for those with chronic illnesses. Why was it so revolutionary? Because a friend asked what it feels like, and then listened. (I have a white spoon tattooed on my arm to remind me to “save my spoons.”)

• Grief plays a huge part in living with a chronic illness. Grieving for my Old Life After Chronic Illness is a personal essay by Angie Ebba on Healthline, and Mindfulness and Stages of Grief in Chronic Disease by Werner Absenger on MindBodyMed has some helpful visuals and resources on the deeper processes of grief.

• It shouldn’t be as hard to find love with a chronic illness/disability as it is. Caroline Shifke asks writers to Please Stop Writing About Why You Will or Won’t Divorce Your Chronically Ill Wife on Medium, Wendy Lu reports on Dating with a Disability for The New York Times,

• Wonder Woman - a poem about chronic illness and pain by Ada Limón read and beautifully broken down by poet Pádraig Ó Tuama for OnBeing’s Poetry Unbound.

• The Body in Pain: The Making and Unmaking of the World - by Elaine Scarry (analysis)

• Brain on Fire: My Month of Madness - by Susannah Cahalan (memoir)                                                                                                

On (Crip) Time:

• Six Ways of Looking at Crip Time by Ellen Samuels in Disability Studies Quarterly is a beautiful non-fiction essay about disability + time. I’ve audio recorded it for a friend which you can listen to me read here. (15m)

• Crip Time by Anne McDonald is a beautiful essay on time, technology, and relationships. Anne passed in 2010. Learn more about her at the Anne McDonald Centre and listen to me read the essay here.

• I was always terrified of wasting time. A cancer diagnosis made me reconsider. by Martha M. Crawford on Vox is a beautiful essay on shifting from the Greek’s chronos time to kairos time (crip time).

Lyme Disease

Organizations + Resources:

• Global Lyme Alliance: Global Lyme Alliance is the leading 501(c)(3) dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness.

• ILADS: The International Lyme and Associated Diseases Society is a non-profit pressure group that advocates for greater acceptance of the controversial and unrecognized diagnosis of "chronic Lyme disease". It’s an excellent resource for finding Lyme-literate docs, current reports, etc

• Lyme Disease Association 

• Bay Area Lyme Foundation  (research link)

• Lyme Disease.org

• Lyme Action Network 

• Columbia Lyme and Tick-Borne Diseases Research Center

• John Hopkins Lyme Research Center

• Dean Center @ Spaulding research

• Tick Talk - trends, reports, etc.

Books + Articles:

• The Science Isn’t Settle on Chronic Lyme on Slate, very balanced argument and information within for more.

• Where’s My Lyme Vaccine? The complex downfall of LYMErix—and what’s coming next — by Rebecca Onion for Slate (Click here for a PDF)

• Suffering the Silence: Chronic Lyme in an Age of Denial - by Allie Cashel (book, memoir, collective voices, scholarly)

• Sick: a Memoir by Porochista Khakpour (memoir)

• Lyme Disease: Medical Myopia & the Hidden Global Pandemic, by Dr. Bernard Raxlin and Allie Cashel

• Unlocking Lyme: Myths, Truths and Practical Solutions for Chronic Lyme Disease by William Rawls, MD 

• Why Can’t I get Better?: Solving the Mystery of Lyme and Chronic Disease and How Can I get Better?: An Action Plan for Treating Resistant Lyme and Chronic Disease By Richard I. Horowitz MD      

ME/CFS

Organizations + Resources:

Long Covid + Chronic Illness

Articles:

• Vulnerable to the Virus, High-Risk Americans Feel Pain as the U.S. Moves On — by Amanda Morris and Maggie Astor for the New York Times

• Coronavirus Briefing: A Pandemic of the Forgotten — by Jonathan Wolfe for the NY Times

• Want to get omicron and just get it over with? Here's why that's a bad idea — by Allison Aubrey for NPR

• Immunocompromised people are being disregarded by policies that lift mask mandates — by Jarvis DeBarry for MSNBC

• A Food Lover’s Guide to Cooking with Long COVID — by yours truly for Epicurious

• How long COVID sheds light on other mysterious (and lonely) chronic illnesses — Fresh Air with Terry Gross, interviewing Meghan O’Rourke

• High-Risk Pandemic Stories: A Syllabus — A collection from Alice Wong of Disability Visibility with articles, essays, threads, etc.

• Long Covid isn’t as unique as we thought: The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine — This long feature by Julia Belluz for Vox spells out the connection between Covid long-hauler frustrations and conditions include ME/CFS and chronic Lyme disease. It includes Jaime Seltzer, director of scientific and medical outreach at ME Action.

• The Forever Disease: How Covid-19 Became a Chronic Condition: This heartbreaking piece by Alexander Zaitchik for the New Republic details the horror those with ME/CFS have been living with for decades, which long-haulers are experiencing for the first time. “Nobody deserves this,” says one new to our world.

• Long-Haul Covid Cases Cast New Light on Chronic Fatigue Sufferers — this piece by Kevin Cool for CaliforniaHealthOnline details how ME/CFS is triggered by a variety of infections and viruses, and how they align with patterns and symptoms of Long-Haul Covid cases.

• ME/CFS and FM Expert’s on Whether to Take the Coronavirus Vaccine – Plus The Vaccine Polls — a helpful, fact-forward collection by Cort Johnson on HealthRising

• The Mysterious Link Between COVID-19 and Sleep — by James Hamblin for The Atlantic. (In a paragraph referencing long-haul Covid symptoms and those with ME, a sentence about haphazard inflammation as "less a targeted attack than an indiscriminate brawl" is the most concise conclusion I've ever seen in print.)

• Dr. Nancy Klimas helps those with ME/CFS prepare for Covid-19 in this audio from NSU Institute for Neuro-Immune Medicine, and more resources for those navigating with autoimmune illnesses/compromised immune systems can be found at HealthRising.org

• Long-Haulers are Redefining Covid-19 — Ed Yong in The Atlantic

• Resolution of Federal Complaint Amidst Nationwide Covid-19 Surge Raises Bar in Prohibiting Blanket DNRs, Medical Discrimination Against People With Disabilities - Center for Public Representation

• Covid-19: Why are people suffering long-term symptoms? - a 15-minute podcast by presented by Ian Sample and produced by Madeleine Finlay for The Guardian

• How Covid-19 can damage the brain - by Zoe Cormier for the BBC

• Why Do Some Recover From COVID-19 Quickly, While Others Seem Likely To Face Long-Term Disability? - by Mady Hornig and David Tuller for Health Affairs

• ME/CFS Diagnoses Could Rise After Coronavirus, Researchers Suggest - by J.R. Thorpe on Bustle

• COVID-19 Can Last for Several Months - Ed Yong makes the connection between Covid and MECFS for the Atlantic

• Researchers warn covid-19 could cause debilitating long-term illness in some patients - Brian Vastag and Beth Mazur for the Washington Post

• The Racial Time Bomb in the Covid-19 Crisis - by Charles M. Blow in The New York Times

Essays + Personal Stories:

• I’m a Disabled Parents. It Took a Pandemic to Let Me Join the P.T.A — for The New York Times Heather Osterman-Davis writes about how digital access during the pandemic created access to the community she’d lost from ME/CFS disability.

• For People with Chronic Illness, Social Isolation is Nothing New - Annalise Mabe on Self

• It’s My Body and I’ll Live If I Want To - Activist Alice Wong discussing the allocation of life-saving ventilators + disability on the Crooked podcast, “With Friend Like These”

• Your Coronavirus Fear is my Year-Round Reality - by Alyssa MacKenzie on Healthline

• Cover the Coronavirus without Being an Ableist Asshole - by Caroline Reilly on Bitch

• 7 Tips for Coping with Coronavirus Fear While Chronically Ill - Healthline

• Covid-19 is Disproportionately Taking Black Lives - by Fabiola Cineas on Vox

• The Coronavirus Exposes Society’s Casual Ableism - by Shannon Dingle on Sojourners

• Moving from Survival - an op-ed by Sandy Ho on Disability Visibility project about the importance of Medicaid home and community-based services.

Disability Resources

Articles + Collections:

• Deborah Kaplan’s The Definition of Disability on the Center for an Accessible Society is an excellent primer on historical/political models of disability and the stigmas one inherits identifying with each.

• Interviews and Posts About the Americans with Disabilities Act — from the Disability Visibility Project

• Why are Black Disabled Activists Being Ignored or Forgotten? — by Jodi Murphy in Geek Club Books

• ‘Not Worth The Resources’: How The Pandemic Revealed Existing Biases Against The Disability Community — by Christopher Egusa for KALW Pubic Media

• What It’s Like to Be Black and Disabled In America: “You Have To Scream Out” — by Shalene Gupta in The Atlantic

• How Do Disabled People Feel About Discussing Their Disabilities? — by Andrew Puling in Forbes

• 'Representation matters': How these 4 Black women with disabilities are changing the narrative — by Ruth Etiesit Samuel in Today

• How to Be an Ally — from Diversability

• This Is How Employers Weed Out Disabled People From Their Hiring Pools — by Wendy Lu for Huffpost should make you angry

• Understanding the Policing of Black, Disabled Bodies — by Vilissa Thompson at The Center for American Progress

• A Teenager Didn’t Do Her Online Schoolwork. So a Judge Sent Her to Juvenile Detention — article on ProPublica. A 15-year-old Black girl with ADHD in Michigan was incarcerated during the coronavirus pandemic after a judge ruled that not completing her schoolwork violated her probation.“It just doesn’t make any sense,” said the girl’s mother.

• Check out this thread on children’s books with a diversity of characters from Dr. Sami Shalk.

• Where to Donate to Black People with Disabilities — by Erika Harwood in Nylon.

• The Disability Scorecard: Are You Doing a Panel, or Actually Doing Something? — by Ryan J. Haddad in American Theatre Magazine

• Appropriation in the Disability Community: We Are Our Own Worst Enemy — by Vilissa Thompson on Ramp Your Voice

• Who Was The First Disabled Person You Saw on Television — by Kristen Lopez on IndieWire

• 8 Disability Podcasts That Are Well Worth A Listen — by Andrew Pulrang on Forbes

Essays + Personal Stories:

• About Us: Essays from the Disability Series of the New York Times — edited by Peter Catapano and Rosemarie Garland-Thomson (book, collective voices)

• The A.D.A. at 30: Beyond the Law’s Promise — a New York Times collection of articles and essays. The NYT as a storied history of covering disability, but many of the authors here are respected in the community. Read with critical thought.

• Explaining Our Bodies, Finding Ourselves — By Molly Mccully Brown and Susannah Nevison

• Required reading on the intersection between ableism and racism by Imani Barbarin: White Fragility Makes Calls for True Disability Inclusion Ring Hollow and 2020 Is the Year Everyone in the Disabled Community Should Come Correct.

• Consider What It’s Like Being Disabled and Asian in America by Wendy Lu for Huffpost essential reading, too. As is her Alice Wong Wants To Make Space For More Disabled Asian Americans Like Her.

• How One Woman’s Story Of Medical Neglect Highlights The Pervasive Issue Of Racism In Healthcare — by Janice Gassam Asare in Forbes

• Jardana Peacock’s Medium story, A Journey of Belonging: Embodying White Antiracism as an Ancestral Practice, invites white people into a serious internal exploration of our personal histories with white supremacy and responsibility in racial justice. (Thank you to Jade Perry’s work (Patreon) for bringing this piece to my attention.)

Books:

• Disability Visibility: First-Person Stories from the 21st Century — edited by Alice Wong (collection)

• Resistance and Hope: Essays by Disabled People — edited by Alice Wong (collection)

• Being Heumann: An Unrepentant Memoir of a Disability Rights Activist — by Judith Heumann (memoir)

• The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me — by Keah Brown (memoir)

• A Disability History of the United States (REVISIONING HISTORY) — by Kim E. Nielsen  (nonfiction)