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Rosie Eck, Erika Clark, Tony LaBate and Louis Middleton/Make Studio for ProPublica

Community Storytelling Is Informing Our Coverage of Intellectual and Developmental Disability Services. Share Your Story.

Journalists have not always brought people with intellectual and developmental disabilities into the conversation. We’re trying to change that with our investigation into Arizona’s disability services. But we need your help.

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This article was produced in partnership with Arizona Daily Star, which is a member of the ProPublica Local Reporting Network.

About the illustration: Rosie Eck works with artists with disabilities at Make Studio in Baltimore, Maryland. Eck, Erika Clark, Tony LaBate and Louis Middleton, created the lead illustration for this post. Learn more here about commissioning Make Studio’s artists.

In journalism, people with disabilities are often talked about, rather than talked to.

ProPublica and The Arizona Daily Star are spending the year investigating barriers to services for people with intellectual and developmental disabilities in Arizona. We’re making it a priority to get to know the people we’re writing about and include their firsthand perspectives. Here are some steps we’re taking:

We’re listening to the people we are covering, even when their stories are not explicitly about the entities we are investigating. More than 130 people joined us July 8 to watch story performances from 13 artists with intellectual and developmental disabilities. We partnered with Detour Company Theatre, a group that works with people who have such disabilities. In 12 monologues workshopped with Detour director Becca Monteleone during a five-week storytelling course, artists told us about the challenges and rewards of advocating for themselves, about loneliness during COVID-19 and about loss. Many also spoke about how storytelling helped them find community. The final performance came from an artist who spells to communicate. His mom told him about the event and he wanted to join.

A few of the stories shared:

  • Jenna Jenkins summed up COVID-19’s impact on her life this way: “My life went from good to indifferent to worse.” Jenkins, a Detour artist who was born blind and has autism, said her experience changed when a friend came to help her set up a computer so she could take online classes. “Sometimes, it’s good to stay home after all,” she said.

  • Sophie Stern (who’s Amy Silverman’s daughter) spoke about her attempt to remove the slur “retarded” — an offensive term known as “the r-word” among many in the community — from her school’s production of “Hairspray.” Stern has Down syndrome and is an avid performer, and said, “it’s really hard for people with disabilities to hear that word.”

  • Hailey, an artist who is deaf and wanted to be identified only by her first name, told the story of superhero Halley Comet, whose life paralleled her own experience fitting in at school. Her takeaway: “You don’t have to be scared about new things or meeting new people.”

Watch Jenna Jenkins’ Performance

Though these workshops and performances weren’t directly about gaps in state services, they inform our coverage and give us a way to open a conversation. And at their core, the feelings artists described are directly linked to their access to services and community. During the event, about 10 people contacted our team to share their own stories, which included obtaining care. A recording of the first part of the event is here, and a recording of the second part is here.

We’re spending extra time explaining what journalism is and isn’t, to make sure people understand who we are and what we’re doing with the information we collect. Part of that is understanding what journalists do, so we invited Arizona Republic breaking news reporter BrieAnna Frank to speak. Frank, who has autism, said journalists can do more when it comes to covering disabilities. “Disabilities should be considered in every topic that you’re writing about,” she said during the event. “And there’s a layer to disability in every topic under the sun.”

Our team knows journalists can do better. We told the community exactly what (and how) we are reporting. In the style of a crowdsourcing telethon, we encouraged attendees to call, text or Zoom chat us their stories throughout the event. Several did. We also mock interviewed Leah Mapstead, a Detour artist — asking her questions, and explaining terms like:

  • “On the record”: Anything the person being interviewed tells the journalist can be published in a story.

  • “On background”: What the person being interviewed says can be included in a story, but the journalist can’t name the person. The journalist also can’t publish information that would give away who the person is.

  • “Off the record”: The journalist will keep everything the person being interviewed tells them private, and will not include the person’s experience, name or quotes in any stories.

As we discussed, every person who speaks with a journalist can establish whether they want to be on the record, on background or off the record for an interview.

We’re distributing a storytelling curriculum for teachers, family members and others to empower the community to tell their own stories. We know speaking about personal experience can be hard. This is the curriculum that Becca Monteleone designed for the storytelling workshop artists participated in leading up to our event.

“In this particular workshop, we wanted to work to counteract some of the stories that get told about people with intellectual and developmental disabilities,” Monteleone said during the event. “Stories that are often rooted in stereotypes and prejudice.”

For people who haven’t shared their stories before or don’t know where to start, these lessons can help. “A story might just reach, you know, just one audience member who, when they hear a story, thinks, ‘I thought I was the only one who felt that thing or experienced that thing,’” Monteleone said. “So there’s something quite validating about true stories, too.”

We’re collecting anecdotes in many formats. In all of our journalism, we want to make sure people not only feel invited to share their stories, but also are able to do so. So we built this online form where people with I/DD, their families, teachers, caregivers and medical providers can talk to us. In the form, we detail two other ways people can get in touch, by sending us video recordings, or setting up interviews facilitated by family members or other loved ones. We’re offering this option to acknowledge the many family members and caregivers who’ve been helping people with I/DD communicate and advocate for themselves.

Know someone? We’re interested in connecting with Arizonans who:

  • Have not been able to access public services.
  • Have been unhappy with services they have received.
  • Have not been treated well by service providers.

What’s Your Experience With Intellectual and Developmental Disability Care in Arizona?

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Portrait of Beena Raghavendran

Beena Raghavendran

Beena Raghavendran is an engagement reporter focused on local reporting at ProPublica.

Portrait of Maya Miller

Maya Miller

Maya Miller is an engagement reporter at ProPublica working on community-sourced investigations.

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