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

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

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

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)

Canada

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)

Indonesia

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

Ireland

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)

Kenya

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)

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)

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)

United Kingdom

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

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)

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)