Lived Experience and Opinion

This page features disability news on Lived Experience and Opinion from the Debrief Library. See also news on other subjects.

International

An issue of the Massachusetts Review dedicated to Disability Justice (Dec, Massachusetts Review)

Living Inclusion a campaign featuring the voices and lives of persons with disabilities in the global south. (GIZ)

The Valuable 500 reflects on What Disability Pride means to us. (Jul)

From the Debrief's own Áine Kelly-Costello: Social Role Valorisation: What is it, and what’s the problem? “When people hold roles that are valued by others, they will become more valued as individuals”. Unfortunately this can have the side-effect of ”perpetuating the devalued status of disability and disabled people” by focussing on individual conformity. (Jun, A Frame on Life)

Disability Pride Month July “looks to celebrate disability as an identity by sharing the experiences of the disabled community” (Jul, Forbes)

How a Cyborg Challenges Reality “It seems obvious that cyborgs are first and foremost disabled people, and yet I’m stuck inside this other reality, defined by nondisabled people, where I make an appeal for personhood.” (Jun, NYT)

‘I’m a TV producer’s dream!’ – Rosie Jones on the trouble with being the poster girl for disabled comedy:

“sometimes think I am the ‘perfect amount of disabled’. I am being facetious but hear me out. I look disabled and I sound disabled, but I am not too disabled. I can appear on a panel show without disrupting the whole programme. There’s no need for subtitles, ramps or additional needs. I’m a TV producer’s dream!” (Mar, the Guardian)

Satirical take on Five Ways to Accommodate Sighties in the Workplace “Turn on the lights. You know this.” (Mar, Squeaky Wheel)

Jane Waithera′s fight against the stigma of albinism (short video, no subtitles, Feb, DW)

A powerful tribute to her body from Frances Ryan: Living in a woman’s body: this body is a genetic mistake – but it is sex, laughter and beauty too.

"This body is a genetic mistake, a pitiable stare, the scan on a mundane Tuesday lunchtime with a doctor speaking in hushed tones by the bed.

It is glorious too, thanks. It is deep-in-the-bones laughter at 2am with people who love you; only strangers care that it is sitting in a wheelchair while doing so (“Have you got a licence for that thing, sweetheart?”). It is straight-As, promotions and beating expectations as much as the odds. It is being buckled over from the pain, clutching a public toilet bowl, pills and dignity rattling at the bottom of a handbag. It is sex, fevered goosebumps and kisses to the skin like magic. It is warm summers with friends, sunshine on bare legs and 90s dance music ricocheting through the air. It is fucking knackered." (Feb, the Guardian)

Australia

Re-Frame 2022 a TV show showcasing “stories from all around the country highlighting perspectives from people with disability” (Dec, ABC)

Women with disability already battle stereotypes. I can't afford to be an angry, brown woman, too. (Dec, ABC News)

Reflections between Australia and Indonesia on how #MeToo gave me a vocabulary to claim disability rights “my reaction to unsolicited help formed the crux of my dilemma. I felt torn between the need to keep myself safe, and the pressure to meet society’s expectations that I would welcome help.” (Sep, Unbias the News)

Forming body image as a blind person “When I was younger, I trusted other people's perceptions of my appearance more than my own.” (Aug, ABC News)

Special Issue on Writing Disability in Australia (May, Australian Literary Studies)

The Disability Pandemic:

”I lived in two worlds during COVID. One that suddenly got more open and inclusive, where I was asked to talk at events, on television, to Senate committees. I pasted lipstick on, and calmed my frizzy hair, adjusting a badly fitting shirt, so I could tell the world that disabled people needed help. Then I would scrub it all off, limp to the kitchen and face the anxiety swarm about there being no food.” (Meanjin)

Brazil

An anti-guideline on accessibility to challenge the silos and specificity disability gets put into. (In Portuguese, Oct, SISEM-SP)

Canada

A Disability Justice Issue featuring writing and art from activists across Canada. (Sep, Briarpatch)

What Does It Mean to ‘Crip’ Healing?

'We’re used to thinking of “healing” as specific treatments — surgery, pills, herbs, acupuncture. Those things are useful and important. But a cripped definition of healing would include anything that supports someone’s disabled body/mind. My cane; my friend’s garden bench chair they sit on while they weed; my heating pad and excellent ice packs; my friend’s sensory friendly hijab; the CRV my friend and his partner bought that can easily fit his wheelchair in the back; stim toys; my car with its disabled parking permit; the disabled parking spaces at the Grocery Outlet; the portable wheelchair at the protest; Zoom captions; the autistic Black, brown, Indigenous, Asian and mixed race group I hang out in online; and my close and extended disabled BIPOC friend family who are available to bitch and vent and commiserate and troubleshoot and doula each other: none of these are healing in the “cure” sense. But all of these things do a lot to ensure my or someone else’s chances of an excellent disabled life.' (Dec, The Tyee)

Egypt

The reaction of Egyptians to meeting blind people on the street. Mostafa Attia shows, in a video, how Egyptians are the most helpful of any country he's travelled to. (in Arabic, Jul, Mostafa Attia)

Europe

On Our Terms a podcast on independent living and disability activism, hosted by the Debrief's own Áine Kelly-Costello. (Dec, European Network on Independent Living)

Ghana

The story of Anaaba Agbango, the visually impaired farmer in Goka. (Dec, Ghana Web)

India

There are too many barriers for persons with disabilities “Accessibility in India is often seen from the lens of the individual and the collective or societal approach is missing [...] It is not surprising that it is disabled individuals who have to take the onus on themselves and turn into activists and serial petitioners in courts.” (Dec, Money Control)

Not Your Everyday Ableism a series of short videos to “to unlearn everyday ableist notions, acknowledge the need for creating disability affirmative spaces, and understand the ways for taking action, one conversation at a time.” (Aug, That Sassy Thing)

Indonesia

Sticks and Stones Naufal Asy-Syaddad Encourages Other Young Indonesians with Autism to Know Their Rights (Jul, Disability Justice Project)

Ireland

I moved from all I know: “Jennifer McShane moved to London when it became too expensive and difficult to live in Dublin.” (Dec, Irish Times)

I've Used A Wheelchair Since I Was 19. Why Don't I Need It In My Dreams? Is it denial, long-term memory of previous ways of mobilizing or mirroring what we see? It can take years for our dreams to catch-up with how our bodies change. (Jul, Huffington Post)

Does Representation Miss the Point When it Comes to Creating Body Diversity in Fashion?

"Looking back on my relationship with my body—and perhaps more importantly, the world’s perception of it—it makes sense that I gravitated towards the fashion industry. Even in my teenage years, I knew that clothes could be used as a vehicle to create change. [...] It was also disappointing that such efforts were needed for people to see me the way I wanted to be seen." (Mar, Vogue)

Japan

Why is Japan Seemingly Obsessed with “Barrier-Free Minds”? “Why is the phrase “Barrier-free minds” almost always used, but there is rarely any mention of ‘Barrier-free spaces’, physical environments where people with disabilities can live?” (Nov, Barrier Free Japan)

Kenya

SARAH, a short movie “The story is centered on the life of Sarah who is a pregnant woman with disability. She is unable to access health services in time because of stigmatization and discrimination she faces.” (Nov, DAYO Kenya)

Feature on Eve Kibare's story focussing on managing periods as a visually impaired woman. (Aug, Mummy Tales)

Open letter to Kenyan Disability league leaders: “When will you rise to the occasion?” Argues that so far progress has been “low-hanging fruit” and ”having a few of persons with disabilities in to the system but not yet more robust gains for the Kenyans with disabilities.” (Apr, Mugami Paul)

Citizen Reporting series features small business owner's COVID-19 story (Mar, Inclusive Futures)

Kuwait

Head Above Water: a disabled writer shares her journey with multiple sclerosis in a new book. “Head Above Water excels in exploring the mental and emotional scars of being a mixed-race disabled woman in a very traditional and patriarchal society.” (Jul, Disability Horizons)

Mexico

A wonderful short video on inspiration porn reflecting on ableism, privilege and presentations of disability online. (In Spanish, no image description, Jul, Ruido En La Red)

New Zealand

Human not machine: how autistic writers are writing new space for themselves:

“Why are autistic people so attracted to these magical or other-worldly connections? Most of us experience loneliness and isolation – and if we are repeatedly rejected by humans then the idea of friendship with ghosts or aliens may almost seem less far-fetched.

“It’s also the fantasy we might be able to meet someone else on equal terms; both of us having to adapt to and learn each other’s way of communicating, rather than always having to be the ones who make the effort, exhausting ourselves to the point of burnout.” (Apr, The Spinoff)

Nigeria

It’s The Little Things: stories and life experience of people with visual impairments. (Jul, Unbias the News)

Sudan

A moment that changed me: after losing my hearing, newspapers helped me find a way to cope (Apr, the Guardian) By Saleh Addonia, a refugee from Eritrea, who later moved to the UK and whose short story collection the Feeling House has just come out.

Sweden

Help to live before help to die powerful personal testimony on why end of life decisions shouldn't be left to medical professionals (Feb, Adolf Ratzka on Facebook)

Uganda

Let it pass an animated poem about the lived experience of anxiety. (Nov, Making it Work)

United Kingdom

The Disability Serviceland Song “a song about control, power and self-determination. Staring Ellie Goldstein.” (Dec, Open Future Learning)

On living two lives:

“To be as disabled as I am is to have control of your life parcelled out to people you’ve never met and who will never know you. The doctor, the care recruiting firm, the dating agency. I am forever trying to claw it back; a decision made for myself here, a stand taken there. Sometimes I think I am succeeding, I can breathe a little easier. I feel in control - of my career, of where I’m going, of the small but vital details of how I live my everyday life. And then the dam breaks and the water is rushing again, seemingly higher than before. I find myself wondering whether this time it’ll finally flow over my head.” (Dec, The View From Down Here)

Invisible: Documentary about 6 disabled women activists. (Dec, Tend Project)

'Being grabbed, pushed or touched without warning is terrifying when you can’t see' (Jul, Mirror)

How I found my own disability pride “Disability pride came slowly to me, like dawn breaking on a December morning.” (Jul, The View from Down Here)

Disabled people don’t need your outrage – we need you to fight with us for change (Jul, the Guardian)

What Does it Mean to Forge a Body? Autonomy through Disability Cures and Gender Transition (Apr, Catch these Words)

I'm treated differently depending on what kind of wheelchair I use - on the difference between using a manual and powered wheelchair. (Feb, Metro)

“No you’re not” collection of profiles of autistic women (Feb, Wellcome Collection)

Unbound an animation reacting to the phrase "wheelchair bound": "my wheels travel the world, and they dance, whirl in light and colour" (subtitles but no visual description, Dec, BBC)

United States

'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care. (Dec, KQED)

What disabled people know about making better New Year’s resolutions resolutions to do less and quit Yoga. (Dec, Washington Post)

All Sorts of Secret Treasure Feature on DeafBlind poet John Lee Clark and his debut poetry collection How to Communicate. (Nov, Poetry Foundation)

Progress Over Perfection: A Better Way to Accessibility: “Don't wait until everything is done and perfect. The small steps make a big difference. [...] Educate, don't berate.” (Nov, Meryl Evans)

Our Meeting on Accessibility Is Just Down Those Stairs. “There is a special lift that would help you down the stairs, but it has been out of order for the last ten years.” (Nov, McSweeney's)

Queer, Crip and Here: Meet blind writer Caitlin Hernandez (Oct, Washington Blade)

Growing Up As A Disabled Latinx Immigrant In America. “I believe that my community is best served when we gather and envision a liberated world outside of oppressive systems, and we fight toward it everyday. We’ve always been our own best answers.” (Sep, Refinery29)

Constant Cravings “My feeding tube means I can no longer enjoy the feeling of being sated after a meal. But there are other ways to nourish myself beyond my body.“ (Oct, Eater)

What It's Like to Fall a Lot Because of My Disability “Really, I probably fall as often as you get Starbucks.” (Sep, The Mighty)

Alice Wong: I Still Have a Voice.

“While recovering, communication access is one of my greatest challenges since I can no longer speak. People have talked over me, ignored me, or became impatient as I type my responses. I currently use a text to speech app called Proloquo4text. The voice options are robotic, clinical, and white. It mispronounces slang and Chinglish, a mix of Mandarin and English which is part of my culture. It also fails to capture my personality, cadence, and emotions.” (Oct, KQED)

11 Disability Rights Activists on Where the Fight for Justice Stands (Sep, Teen Vogue)

Year of the Tiger. Alice Wong's book on her activist life: “Drawing on a collection of original essays, previously published work, conversations, graphics, photos, commissioned art by disabled and Asian American artists, and more, Alice uses her unique talent to share an impressionistic scrapbook of her life as an Asian American disabled activist, community organizer, media maker, and dreamer.” (Nov, Disability Visibility Project) See an exerpt in Teen Vogue.

For 'disabled oracle' Alice Wong, rest is a radical act. (Sep, Los Angeles Times)

Society of Disabled Oracles “a living chorus and archive of disabled wisdom from the past, present and future. We have been waiting for you. This is a collection of ‘telegrams’ by disabled oracles to the world.”

A new book, by John Kemp, Disability Friendly: How to Move from Clueless to Inclusive, “a call to action for businesses around the world to realize the opportunities presented by employing people with disabilities.” (Aug, Lakeshore)

Benevolence Porn “I suggest that we consider benevolence porn as a means of distinguishing media attention that centers the abled person rather than the disabled person.” (Aug, Not an Angry Deaf Person)

The Future Is Disabled a new book by Leah Lakshmi Piepzna-Samarasinha, Prophecies, Love Notes and Mourning Songs. (Jan, Arsenal Pulp) See an interview on Ms Magazine.

My Experience as an Immigrant and Expectant Mother with a Physical Disability. (Aug, Blogs @ Brandeis)

I’m Going Blind. This Is What I Want You to See. “It’s time to expand our definition of blindness.” (Aug, NYT)

My ICU Summer: A Photo Essay. Alice Wong's harrowing experience in the hospital system. (Aug, Disability Visibility Project) Alice is fundraising to get the resources needed to live in community.

Care Tactics an essay on “hacking an ableist world”, the tech that goes viral versus the adaptations we actually use the new worlds that disabled people and their caregivers are building. (Jul, The Baffler)

Americans with Disabilities Act Turns 32 Buys a Motorcycle and Gets a Cute Pixie Cut (Jul, The Squeaky Wheel)

Observing Disability Pride Month this July (Jul, Human Rights Watch)

Disabled Community Disappointed that Corporations Don't Pander to Them During Disability Pride Month “I have the right to be pandered to and patronized just like any able-bodied person,” one disabled consumer told us. “I already pay more for accessibility in my daily life; I have the right to pay more for branded pride merch too.” (Jul, Squeaky Wheel)

The Tragedy of Nondisability: A Sad and Boring Life. “As crip testimonies show, it can be a relief to be liberated from nondisabled culture, with its fixation on prescriptive life-stages and rituals, to be followed in a specific way and at specific times from birth until death. Crip culture stands in opposition to this culture, as a site of non-normativity, resistance, and playful world-building.” (Jul, Biopolitical Philosophy)

What Counts as Seeing A conversation between Alice Wong and Ed Yong, about Ed Yong's books on biology. Includes reflections on ableism in scientific writing:

“I’ve read a lot of writing on the senses, both about humans and other animals, and it’s really striking to me that people gravitate towards big, sweeping statements about humans as a species that clearly don’t apply to all members of the species. One of the most common things you’ll read on this topic, from almost any source, is that humans are a visual species. We are visual creatures. That’s true on average, but millions of people are blind or have sight impairments. So if you’re a blind person, what does it mean to have someone repeatedly tell you humans are a visual species? Does that mean that you’re less than human?” (Orion Magazine)

In New York City, a video feature on wheelchair users, discussing adaptive sports, accessibility and inclusion. (Jun, CUNY TV)

It’s Time for ‘Crip Time’:

“The concept of crip time emerges from disabled experience and acknowledges that people with disabilities experience time and the demands of time differently from nondisabled persons. Crip time means that we may need to sleep more or longer, that it may take us longer to cook a meal, that it might take longer to get from point A to point B, or—most relevant to the academy—that it might take longer to write the book, that we may need to schedule meetings later in the day because that is when our bodies and minds are most functional, or that we may need additional time on our tenure clock because of health-related disruptions in our scholarly production.” (Jun, Inside Higher Ed)

Short documentary film, My Disability Roadmap “The path to adulthood is a precarious one for those with disabilities. So Samuel Habib, 21, seeks out guidance from America’s most rebellious disability activists.” (May, NYT) The NYT page doesn't load properly for me; you can also see the film at Like Right Films.

I'm Deaf And I Have 'Perfect' Speech. Here's Why It's Actually A Nightmare. (Apr, HuffPost)

Rebecca Cokley on her Break-up with Little People America:

“It is harmful to be surrounded by people who are actively celebrating the eradication of your people. Because the reality is, average height people and corporations don’t see us as a distinct people, as a culture. We are patients and a market. A majority of average height family members see us as a flaw in the genetic code, a reminder that their loved one is not EXACTLY like everyone else in their family. For some parents, our dwarfism is a reminder that there is always something that they will not fully understand about their child.” (Mar, Disability Visibility Project)

I Approach Polyamory With the Same Drive I Do My Work.

'As I hopped across genres [of writing], and from page to screen, nondisabled people would ask, “Why don’t you just be yourself?” and I would hear, in their question, Tell the story we expect: Your disabled life is very hard, you are very sad, but then you overcome it and are very happy. I refused. I’m not Cyborg Cinderella. I’m not a parable. I’m an artist.' (Mar, The Cut)

Dave Grohl, of Foo Fighters and previously Nirvana, talks about hearing loss: ‘I’ve Been Reading Lips For 20 Years’ “I’m a rock musician. I’m fucking deaf. I can’t hear what you’re saying.” - and more on how he performs and makes music. (Feb, HuffPost)

NPR Life Kit: Don't be scared to talk about disabilities. Here's what to know and what to say, feature with Emily Ladau, with links to further resources. (Feb, NPR)

Disabilities are not binary. Why do we treat them that way? (Feb, AAMC)

Ableism Is More Than A Breach Of Etiquette — It Has Consequences (Feb, Forbes)

Q&A With Lainey Feingold, Disability Rights Lawyer on structured negotiation and "negotiating instead of suing". (Equal Entry)

An interesting twitter thread from @cmmhartmann on "feel[ing] torn about the trend of people describing their physical appearance during meetings for those who are blind/low vision. [...] I am uneasy with the assumption that visual details are better." (Feb)

If you're interested in controversy about Autism, see this Position Statement on Language, Images and Depictions Concerning Severe Autism This statement criticizes "vocal activists and autism self-advocates" in ways that I don't agree with, but I provide this FYI and because there are important issues in play. (Feb, NCSA)

You Are Not Entitled To Our Deaths COVID, Abled Supremacy & Interdependence

"My people are dying and terrified. And you don’t seem to care. You don’t seem to care because you don’t see them–see us–as your people too. When you talk to me about racial justice or housing justice or healing justice or gender justice, who exactly are you talking about? Whose justice are you fighting for? Because it never seems to include disabled people or if it does, it is only in theory, not practice; only to make yourself look better. Or only when disabled people are in the room or when disabled people initiate the conversation. " (
"My people are dying and terrified. And you don’t seem to care. You don’t seem to care because you don’t see them–see us–as your people too. When you talk to me about racial justice or housing justice or healing justice or gender justice, who exactly are you talking about? Whose justice are you fighting for? Because it never seems to include disabled people or if it does, it is only in theory, not practice; only to make yourself look better. Or only when disabled people are in the room or when disabled people initiate the conversation. ", Jan, Mia Mingus)

Tina's art: "How I see the world" Art and photography from someone with Cerebral visual impairment. (Perkins)

On Marta Russell’s Money Model of Disability Locating disability in its economic circumstances, rather than in terms of stigma: seeing the industries of charity and care that commodify disabled people. (Dec, Blind Archive)

To Hold the Grief and the Growth: On Crip Ecologies

"Crip ecologies, crip time, crip ingenuity, crip spirit radically aim to question root systems that keep our imaginations limited and starved. How can we channel joy within our own skins before there is the stethoscope, the specialist’s jackhammered interrogation, before all the stigma we battle? I am not asking to look beyond it, because these constraints in our beings are here and ever-present. I am asking, as poets, as curious people who want liberation, how do we revel in the grief and also the growth we experience? In what ways does this unpack how we are taught to perceive place and nature?" (Jan, Poetry Foundation)

Reframing Entrepreneurship And Disability To Shape A New Business Culture describes the way we make changes within organizations as 'intrapreneurship'. (Dec, Forbes)

Working definition of Ableism updated in January 2022:

A system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, "health/wellness", and/or their ability to satisfactorily re/produce, "excel" and "behave." You do not have to be disabled to experience ableism. (Jan, Talila Lewis)

Vatican City

The Pope says that inclusion of disabled people must not remain a slogan. “There is no inclusion if the experience of fraternity and mutual communion is missing. There is no inclusion if it remains a slogan, a formula to be used in politically correct speeches, a flag. There is no inclusion if there is no conversion in the practices of coexistence and relationships.” (Dec, Vatican News)

Zimbabwe

Being a deafblind child in Africa: My personal experience

"Unlike most fellow children with deafblindness, I was lucky enough to have an educated, working and caring father who supported me in my education. By the time he died, when I was doing my junior secondary school, he had built a foundation for my upbringing. My disability nevertheless haunted him. I would hear my parents whisper their helplessness and despair when I lost a great deal of my hearing and sight at the age of 10 and 15 respectively. It was a miracle to them that I continued to pass at school despite my deteriorating senses of sight and hearing. This is what encouraged them to keep me in school. They concentrated on enhancing my ability, rather than limiting me because of my disability. " (Feb, Thought Leader)