A guide for reporting on how young disabled and chronically ill people use online communities

Many chronically ill and disabled people have found communities online, with some finding it beneficial due to being able to connect with people like them, and also being able to communicate with people while managing symptoms like chronic pain and fatigue. As a chronically ill and disabled journalist, I think the conversations about social media being bad for youths’ mental health leave us out. Loneliness is a crisis, and social media can help bridge that for some of us.

For my Solutions Journalism Network’s HEAL project, I looked into how online communities and programs are helping young people with chronic illnesses and disabilities’ emotional well-being. In addition to reporting three stories for this project, here is also a guide for other journalists who want to take a dive into reporting on this topic for their own publications. Some of these topics also touch on reporting on disability in general.

If you’re looking for inspiration, here is a list of stories, some by myself and some by others on this topic.

1. When You’re Young, Lonely, and Chronically Ill, Online Communities Offer a Lifeline by Julia Métraux in Mother Jones

2. Virtual Communities More Crucial Than Ever For The Disabled by Deandra Mouzon in Youth Today

3. For disabled people, social media can be both a lifeline and a drain by John Loeppky in CBC

4. These Lessons Give Children with Chronic Illnesses a Chance to Be a Guitarist, Actor or Chef by Julia Métraux in California Health Report

5. Black Deaf Creators Are Pushing For Inclusivity Through TikTok Videos by Sierra Lyons in Teen Vogue

6. The Arc SF creates online community for developmentally disabled individuals by Julia Métraux in Local News Matters

After surveying 47 disabled/chronically ill journalists and advocates, here are 10 points to keep in mind when reporting on how young chronically ill and disabled people interact with online communities. Many of these are useful to keep in mind when reporting on people with disabilities and chronic illnesses in general. Here are some of their responses, split into the category of disabled people’s experiences, language and interview.

Disabled people’s experiences

Recognize that not all experiences with disability are the same

• “Fundamentally, doing this work is not about reporting on one singular monolith of a ‘disability community.’” — John Loeppky
• “Every single one of us in these online spaces brings our own unique experiences and potentially hold very differing opinions.” — Safari Lee

People’s experience living with a disability or disabilities can be shaped by symptoms of the condition they have, race, class, gender and more.

Uplift and don’t erase the work of disabled people of colour

• “It’s not enough to simply ‘listen to disabled people’ but ask yourselves, ‘WHICH disabled people are we listening to?” Many multiply marginalized disabled activists have disability erased from their work, other anti-oppression frameworks disregarded.’” — Dev Ramsawakh

Erasure of work for example would be to mention #DisabilityTooWhite and not credit Vilissa Thompson’s work in creating this hashtag.

Remember that people with invisible disabilities and illnesses

• “Not all disabilities are visible. Some online spaces cater to these needs specifically, and they may be great resources for reporting on invisible disabilities or including these voices.” — Ingrid Cruz
• “People sometimes silo ‘visible’ disabilities into being the only category of disability/chronic illness, forgetting that many of us in the community don’t “look” disabled.” — Sam Ikner

You cannot see many disabilities — but, for people who have them, are no less part of the disability community.

Don’t view online communities negatively in comparison to IRL ones

• “Online communities for people with disabilities have redefined what it means to live with a rare condition. I’ve built a support system that has helped me through a number of triumphs and challenges. Online communities have facilitated opportunities to think about disability and what it means to me, forging my identity and, in my case, a career.” — Kara Ayers, PhD

Online communities can be life-changing for chronically ill and disabled people, so don’t minimize that.

Language

Ask people about identity first versus person-first language preference

• “Many disabled people prefer “identity-first” language (disabled person) over “person-first” language (like “a person with a disability), but not everybody does. These labels are personal, and should be respected.” — Paul D.C. Bones, PhD
• “Ask the interviewee if they do or do not prefer person first language and to stop with the pitying hero stereotype commonly used in the media to describe people with disabilities.” — Stephen McEvoy

Here is a blog from the Association of Health Care Journalists on this topic.

Take time to learn about what language is typically preferred within communities

• “Pay attention to community preferences. For instance, the actually autistic community prefers autistic (unless an individual specifies otherwise.)” — Charlene Holkenbrink-Monk

Asking people what language they prefer is always a good start. So is reading the National Center on Disability and Journalism’s Disability Language Style Guide.

Don’t use problematic language

• “Avoid the phrases differently-abled, special needs, and wheelchair bound.” — Sheri Byrne-Haber

Going to plug the style guide here again!

Interview

Ask your interview subjects about accommodation needs, and make sure they are aware of the interview process:

• “Every person with a chronic illness or disability has a different need or accommodation.” — Joanne Fitzgerald
• “Be flexible with interview formats, deadlines, and be willing to adjust or offer alternatives. Because people with chronic illness or disabilities may have flare-ups, the initially agreed upon dates or formatting might no longer work.” — Michelle Young

Someone asking for accommodations, like questions in advance due to their brain fog, is not “cheating.” Creating an accessible interview process also means confronting journalism norms.

Actually interview people who have lived experience with disability

• “Take particular care to center disabled voices in your work and listen to disabled people’s lived experiences, even if some of their experiences may be contrary to the opinions of professionals in adjacent fields (i.e. medicine, law, public health , etc.).” — Emma “Emmy” Potter

Always keep in mind the phrase “Nothing About Us Without Us.” Unless you’re very limited by breaking news constraints, seek out disabled sources — not just non-disabled family members.

This article was originally published by Julia Métraux on Medium and appears here with permission.