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How opening up and engaging the community transformed my reporting on people with disabilities

How opening up and engaging the community transformed my reporting on people with disabilities

Picture of Christopher Egusa
Ingrid Tischer, who lives with a rare form of muscular dystrophy, was one of two women the author followed as they navigated the
Ingrid Tischer, who lives with a rare form of muscular dystrophy, was one of two women the author followed as they navigated the pandemic.
(Photo by Christopher Egusa)

From late spring through early fall of 2021, I followed the lives of two women as they navigated the pandemic while facing nearly impossible challenges. For both women, disability played a major role in their lives and the lives of their families.

First was 55-year-old writer and fundraising professional Ingrid Tischer, who lives with a rare form of muscular dystrophy. When we first spoke over Zoom, she detailed for me a harrowing incident in which she was denied treatment in a hospital because of her disability. She related the brusque dismissal from the neurologist, and the crushing emotional toll of the whole incident. 

I quickly learned that this kind of medical bias against people with disabilities ran rampant throughout the pandemic — from state guidelines on care rationing to decisions about vaccine priority. Through interviews with dozens of disability advocates, community leaders and their allies, a pattern of discrimination and ableism emerged from the state and the medical establishment. 

The focus of my second story was Fiona Wong, an occupational therapist in her late 40s, and the mother of Linus, a 21-year-old with severe autism, obsessive-compulsive disorder, and epilepsy. While most of the world endured a sudden halt to their lives in March 2020, for Fiona and Linus the stakes were even higher. Their entire support system abruptly ceased to function — including the special school Linus attended and his after-school programs. Linus requires nearly 24-hour supervision, and Fiona was left suddenly shouldering that entire burden. She quit her job to take care of him full time, but quickly reached the end of her rope. 

Through conversations with Fiona, I learned that the state-funded system that provides respite caregiving help and other services to people with developmental disabilities and their families had broken down. Fiona had been desperately seeking assistance, but was left waiting over six months for help. She fell into a deep depression, and even began experiencing suicidal thoughts. 

Ingrid and Fiona aren’t alone in their experiences. As in many areas, the pandemic surfaced biases and breaking points in these public support systems that existed long before COVID ever entered our collective consciousness. And, unfortunately, as these systems were pushed to their limits, the most vulnerable populations — like those with disabilities — were the first to fall through the cracks. In the case of Fiona and Linus, their inability to get caregiving help is just the tip of the iceberg in a much larger caregiving crisis confronting the U.S. The need for caregivers is expected to rise dramatically, while poverty-level wages and benefits are driving an already marginalized workforce out of the industry. The result is Fiona and Linus’s personal crisis, multiplied hundreds of thousands of times over. 

The stories I covered during this project are emblematic of a much larger pattern of neglect and dismissal people with disabilities continue to endure. I would like to share a few of the lessons I learned through this process, in the hopes that they may help other journalists looking to cover disability issues, or who are disabled themselves.

Bring yourself to the work

One of the biggest questions I had going into this project was how much of myself to include — not just in my stories but in the conversations I was having with members of this community. 

I live with a chronic illness, which causes chronic pain and some mobility issues. My experience as someone living with a form of disability is what inspired the project in the first place. At the same time, compared to the people I was interviewing, my experience during the pandemic was a very privileged one. And, because my chronic illness is fairly invisible, I also carry some imposter syndrome when operating in disabled circles. Ultimately, I didn’t want the series to become about myself. 

However, I quickly learned how valuable it was to be open and authentic about my disability, regardless of the mental baggage I carried with it. People with disabilities are used to shouldering the burden of communicating their experience for a nondisabled audience. The moment I revealed my own disability, there was a sense of relief that I got from the people I spoke with — they trusted me to get the details right, and to understand why certain things were significant.

For instance, when I visited Ingrid, I let her know that I also needed special accommodation for sitting, including changing positions frequently. Once that happened, I could feel the barriers come down. It was a subtle, but powerful shift.

As an aside, if you’re a disabled journalist (or nondisabled, for that matter), figure out what you need in order to feel comfortable and at your best, and then don’t be afraid to ask for it. A big lesson I took from this community is that it’s okay to ask for the accommodation that you need. In this field, we often feel like we need to be superheroes, charging in to get the story, no matter what it takes. But without being mindful of our own needs and limitations, we risk burnout and never getting the story at all. If we’re willing to equip ourselves according to our needs, the work will be better for it.

Community engagement is a game changer

In addition to the standard reporting fellowship for this project, I also received a grant to do engagement work, with support from the Center for Health Journalism team. More than anything else, I think this had the greatest impact on my reporting and the resulting pieces. 

It’s a simple concept: involve the community you’re reporting on in the reporting process itself. And yet, I didn’t really realize how powerful it could be until I’d gone through it. For my project, I pursued two engagement efforts: an outreach survey and an advisory cohort. The purpose was to gather both broad (survey) and deep (cohort) input for my reporting process. 

For the outreach survey, I crafted a simple Google form with questions about the recipient’s experience having a disability during COVID-19. I also created an on-air callout for KALW to broadcast, as well as a web post, which I distributed over social media and email with the help of disability organizations I’d been in touch with. (There were concerns about people with limited internet access, but due to COVID we deemed it the safest approach.)

The stories I received through the survey helped me tap into a portion of the community I would not have found through my existing channels, and it raised issues that I wouldn’t have thought of otherwise. It also created some awareness of the series prior to it being published and put it on the map for certain figures within the community.

However, it was the advisory cohort that was the real game changer. At the start of the project, I put together a group of seven members, including individuals from the disability community, local leaders of disability organizations, legal advocates, and policy experts. We held monthly Zoom calls that were full of in depth and sometimes heated conversations — ranging from which story topics were most relevant to the disability community, to questions around language and narrative in stories involving disability. 

The cohort helped me get direct and immediate feedback on my reporting and story directions, and allowed me to quickly understand blind spots or biases that I had. It also let the members of the community voice what was important to them, and gave them ownership of the process. It also amplified the reach and impact of the final reporting as they were able to distribute the series though their own networks.

Another benefit of having the advisory cohort, is it helped me find sources very quickly. Because I had an engaged group of advisors, I got quickly plugged into community knowledge and connected to many potential sources for my stories.

From the beginning I had felt that this is the way journalism should work, but I wasn't equipped with the specific tools or framework I needed until this fellowship. After seeing how much the community engagement work improved the outcome of the project, it's hard to imagine doing any in-depth reporting without it.

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