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Writing Disabled Voices

Journalists often struggle to cover disabled people. Here’s what experts say about getting the story right. Bonus: A primer on correcting the media when they get it wrong.

By Ryan Prior

A young man with Down syndrome thrives at work. Can we describe his life experience and skill without undue focus on his disability? Credit: Shutterstock

We all want—need, really—to have our stories told. And it takes wise storytellers to do it, especially if we become unable to fully do it ourselves.

As human beings, many of us, if not all, will be disabled at some point in our life. As journalists, our profession must take that fact into account, with stories portraying disabled people in ways that are dignified, accurate, and forward-thinking. One in four American adults lives with a disability of some sort, according to the Centers for Disease Control and Prevention. Some disabilities are obvious, but others may be more subtle, such as colorblindness, dyslexia, or problems during pregnancy.

At every turn, disability writing should strive to be free of stigma and hold space for disability pride. In this kind of reporting, human experience should be seen through a social lens. That means writers shouldn’t depict disability narrowly, as a problem to be solved, but rather as a lived identity to be framed with nuance and sensitivity. They should choose the right language and make sure to give disabled people the chance to speak for themselves.

Experts I spoke to for this story were universally emphatic on a particular point: Talk to disabled people when you write about disabilities. Many of those experts lamented that they frequently see journalists fail to do this. Laura Casey, who was a WSJ Trust Fellow focusing on disability coverage, noted that simply prioritizing disabled voices could reframe stories and get at the truth more accurately.

“Make an effort to ensure that the sources you speak to have life experiences that are representative of the heterogeneity of the disabled population,” she told me. “You’ll probably get a very different response to questions about public transit accessibility from a wheelchair user with a spinal cord injury versus a person with multiple chemical sensitivities.”

Casey has multiple chronic illnesses that are dynamic, affecting her in different ways at different times, so she requested that we do our interview via email. Had we done it over the phone, she said, she’d likely have been able to explain only about half of her points.

Publishing sensitive information, such as someone’s medical diagnosis, can be harmful if done in a cavalier way.

Casey’s altered interview arrangement illustrates a key point about accommodations for disabled sources in general. Reporters should build in flexibility when reaching out to disabled sources. That means allowing extra time for them to respond to interview requests and conducting the interview in whatever format they are most comfortable in, whether via text message or sign language or anything else. With sources from vulnerable or marginalized communities, it’s particularly important to explain the general practices of journalism (define “off the record,” for instance) to those who aren’t media trained. Publishing sensitive information, such as someone’s medical diagnosis, can be harmful if done in a cavalier way.

And allow disabled people to speak for themselves, rather than relying on the perspective of a caregiver or family member, who doesn’t have the actual direct experience.

Journalists should also understand that people with disability are news consumers and part of their audience. “If you are considered a consumer of news, then you are an audience that a news outlet must consider,” says Eric Michael Garcia, senior Washington correspondent for The Independent and author of We’re Not Broken: Changing the Autism Conversation. “When we don’t see them as an audience, we then feel a license and an authority to talk about them in a way we wouldn’t talk about other groups.”

USE LANGUAGE CORRECTLY

To clarify nuances around specific disabilities and terms, the National Center on Disability and Journalism offers an alphabetical style guide in multiple languages to explain concepts such as “abled-bodied” and “vegetative state.” Historically, language has been used to dismiss, disparage, and even to justify killing disabled people. Notions of what it means to be “stronger” and “weaker” have fueled the eugenics movement, and activists understand that words matter.

One of the most common discussion points in disability reporting is about using person-first language versus identity-first language. Prior to the passage of the Americans With Disabilities Act in 1990, an earlier generation of disabled activists favored person-first language (“person with a disability”), emphasizing their basic humanity. A younger generation, growing up with their rights enshrined in law, has felt more freedom to emphasize identity (“disabled person”). Whether to use one or the other can be decided on a case-by-case basis, depending on the community. The identity-first preference is particularly common in the autism community, as in “autistic person.”

If you’re not sure, ask the subjects how they would like their disability to be portrayed. We all want to be shown as fully dignified human beings. It’s preferable to write someone is “a wheelchair user” rather than “wheelchair bound.” I’ll admit I made this mistake in a story I wrote in 2019 and received several angry emails. I wish I, or my copy editor, had known better. Guides like this may help others avoid the same mistake.

And if you do make a mistake, listen and learn from the disability community. Let it be a teachable moment. In late 2021, Mykola Bilokonsky, an autistic software engineer, objected to language used in a promo for a CNN documentary about autism and marijuana (a show I worked on). He reached out to CNN’s chief medical correspondent, Dr. Sanjay Gupta, on Twitter, offering some gentle feedback on how to cover autism. In an essay, “How to Talk About Autism Respectfully,” Bilokonsky explains that Gupta asked for a phone call, took time to listen, and promised to report on the topic in a more nuanced way going forward.

DIVERSIFY YOUR TEAM

Many newsroom leaders make the mistake of not hiring disabled writers or commissioning stories from them. Consciously add disabled people to your team. You’ll be more likely to get the story right. An autistic reporter will write knowledgeably and authentically about autism. And because symptoms or experiences of one disease can resemble those of another, you may find that a writer who is hard of hearing is your most insightful reporter on “brain fog.”

Several years ago, the site Refinery29 was publishing its “Voices of Disability” package, a set of stories that at first did not have a dedicated editor. The outlet asked Kelly Dawson, a writer and media consultant with cerebral palsy, if she could serve as a guest editor for the series to ensure the coverage was correct. “I’m really surprised at how simple it is,” Dawson said at the time. “It really is me coming to the team, and them being, like, ‘OK, what are we doing this year?’ ”

We need disabled reporters holding truth to power on Wall Street, at the White House, and in the court system in O’Fallon, Illinois.

Dawson helped the team expand the inclusiveness of the stories, think intentionally about the colors used on the site, and incorporate alt text for all its images, for those with visual impairment. Adding voice recordings for all the stories helped not only blind audience members but also those who have trouble reading due to cognitive dysfunction.

When hiring disabled reporters or commissioning them for stories, know that lived experience isn’t bias. It’s wisdom. Disability activist Alice Wong describes disabled people as “oracles” who see the world through a uniquely perceptive and profound lens. That’s a lens newsrooms can use to their advantage and is an important part of newsroom diversification. Newsrooms produce more vibrant stories when Black editors and queer producers and disabled writers make contributions and write stories about what interests them, whether that be medical research or Lord of the Rings.

Not all disabled journalists will want to be pigeonholed on the disability beat. That’s great. We need disabled reporters holding truth to power on Wall Street, at the White House, and in the court system in O’Fallon, Illinois. Issues of equal access and opportunity are not confined to the disability community. They’re universal.

DEPICT YOUR SUBJECTS WITH DIGNITY

A disability that isn’t outwardly noticeable can be no less life-altering than one that is. “The problem is that we only talk about it if it’s in the context of health, but disability impacts so many other issues, whether it’s being able to get a job or being able to get housing,” says Mia Ives-Rublee, director of the Disability Justice Initiative at the Center for American Progress. “Disability affects everything, and leaving it out of the conversation means you’re missing large parts of the picture.”

Don’t use disabled people as “inspiration porn.” The disability community often complains that their stories are framed as tales of overcoming adversity, while the harder journalistic work of exposing systemic injustice goes undone. There’s no substitute for reporting on the substantive policy issues. Even basic reporting about daily life can expose important truths. For the New York Times, reporter Amanda Morris followed one wheelchair user’s journey flying from Palm Beach, Florida, to San Antonio, Texas. Morris showed how air travel can be “embarrassing, uncomfortable, and perilous,” with wheelchair users enduring risks such as injury, loss of equipment, and lack of accessible bathrooms in order to fly.

Moreover, cheap inspiration porn can “otherize” disabled people. Don’t make them seem exceptional for doing normal things. “We know we live these lives,” says Vilissa Thompson, a social worker and founder of the self-advocacy organization Ramp Your Voice! “We know that we go to school. We know we can be doctors, we can be everything else. It’s society’s narrow viewpoint of who we are that allows inspiration porn to exist.”

If the story isn’t specifically about disability, and your subject just happens to be blind or to use a wheelchair, don’t give their disability more focus than it needs. In those instances, it’s just a fact of everyday life.

One pitfall is repeating disproved myths about post-viral illness being “all in your head,” even when hundreds of studies have shown measurable biological abnormalities that can persist for decades.

Know that people are relying on your coverage to tell the truth about their disease.

Just as in other areas of journalism, be careful about false equivalence. When there is overwhelming scientific consensus on a subject, being overzealous about finding dissenting views can actually misinform readers. One pitfall in disability reporting, for instance, is that some journalists writing about long Covid repeat disproved myths about post-viral illness being “all in your head,” even when hundreds of studies have shown measurable biological abnormalities that can persist for decades. Similarly, some voices in the scientific world question the evidence for certain chronic diseases that are widely acknowledged to be real. Giving those voices air, and not fact-checking longstanding myths, can implicitly feed into dehumanizing tropes about “takers and fakers.”

For instance, Janet Dafoe, whose son Whitney is disabled and cannot speak due to myalgic encephalomyelitis/chronic fatigue syndrome, told me that in 2015 she refused to allow a reporter to use her interview material if the reporter spoke to psychologists who doubted her son’s disease. Dafoe’s gambit worked. The resulting Washington Post story became a breakthrough moment for the global patient community and led to well-framed follow-up stories.

The first story I successfully pitched at CNN, in 2016, was about disabled Bolivian protesters marching in wheelchairs through the Andes toward the nation’s capital, calling the government out for meager disability pensions. The activists demanded increased disability benefits to help move closer to basic subsistence. But rather than sympathy, President Evo Morales’s regime met them with riot police and water cannons. It was a good story not because it was a disability story but because it was a human story about fully dimensioned people with a problem, a fight, and oh, what a journey.

Nearly every story we tell as a species is ultimately about how we reckon with suffering, how we build community, and how we deal with the inevitable frailty and deterioration of self. That’s not disability. That’s being human.

October 6, 2022

Ryan Prior

is a journalist who has written for CNN, Business Insider, The Daily Beast, and USA Today. He is a Stanford Medicine X ePatient Scholar and author of the forthcoming book The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever. He was diagnosed with chronic fatigue syndrome in 2007.

Editor’s Note

We’ve seen intense debate over the years about how to appropriately describe women, members of minorities, immigrants, and nonbinary people—but there’s scant discussion of the language and sensitivity required for journalistic coverage of the disabled or those with chronic disease. In this essay, Ryan Prior, author of an upcoming book on long Covid, sets the record straight. Whether you are a journalist or a consumer of media, you’ll want to know how to avoid ableism or correct it when you see it in play. Our primer on sensitivity and appropriateness is the perfect place to start.

—Pamela Weintraub, co-editor, OpenMind

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