How ProPublica partnered with the Arizona Daily Star to shed light on the untold stories of people with Intellectual and Developmental Disabilities

by Noor Abu Rabie & Siena Dorma

Summary

In 2020, ProPublica collaborated with the Arizona Daily Star to launch a year-long collaboration uncovering the unfulfilled government services provided for Arizonans with intellectual and developmental disabilities (IDD). The project was titled, State of Denial. The impetus for the project involved a situation in which an Arizona woman in an immediate care facility was raped and had a full-term baby. No one at the facility knew she was pregnant or had been raped until she gave birth. Amy Silverman, Maya Miller and Beena Raghavendran directed the project. Data reporter Alex Devoid contributed reporting to the project, Rebecca Monteleone translated stories into plain language. They published an article and hosted a storytelling event and media workshop to invite people with IDD to share stories about themselves – and not merely about the government systems they were investigating. The goals were to discover what relying on Arizona’s faulted disability services entailed, to understand the lived realities of Arizonans with IDD and to serve this community by providing tools to speak to future journalists.

Collaboration between two organizations:

ProPublica: a nonprofit organization based in New York City. It is a newsroom that aims to produce investigative journalism in the public interest.
The Arizona Daily Star: the major morning daily newspaper that serves Tucson and the surrounding districts of southern Arizona in the United States.

Snapshot

Project Goals: The goal was to make State of Denial center on and made accessible to those impacted by IDD. The goals were achieved by implementing the following strategies.

To get out of the way as journalists and let people tell their own untold stories.
1. The State of Denial project wanted to show readers who are not familiar with this population that it is possible for people with IDD to tell their own stories.
2. They wanted to correct the way society and governments treat and cover all diverse groups.
To show that people with IDD are more than their disabilities.
1. The goal was not to singularly make IDD the focus. The project wanted to display not just how the services were failing, but also tell the stories of the people impacted.
2. The journalists utilized the research findings from the Dart Center of Trauma Reporting to inform their coverage of the many components of an individual’s identity.
To make reporting more accessible by reevaluating how journalists tell stories and share them.
1. The project aimed to prepare people with IDD with the ability to communicate with reporters. They informed people with IDD on how to approach the process of speaking with reporters by explaining what their rights are. They taught the meanings and uses for journalistic terms like “on” and “off” the record, through guided mock interviews that replicated a real conversation with a journalist. The services at the storytelling event also included a hotline, during which they fielded about a dozen messages.
2. Maya, Beena and Amy were open to learning from non-journalists about how to communicate successfully with communities they did not have prior relationships with.
3. After the event, they shared a storytelling curriculum made in conjunction with the theater company they were working with to invite other journalists and community members to carry out similar work, training and storytelling.

Project Resources

The most referenced resource was the National Center on Disability and Journalism (NCDJ), which provided published guidelines on approaching and practicing disability reporting.
The project partnered with a theater group as a way of meeting people with IDD where they are.
The journalists interviewed members of nonprofit groups focused on disabilities, including The ARC of the United States to help inform the event: The ARC organization had employees in Georgia who had previously performed a storytelling event and offered them advice.
An ASL interpreter, as well as a closed caption expert, were on-hand at the event..

Tools & Technology

In the three weeks leading up to the event they had a spreadsheet of nonprofit groups, group homes and special ed teachers in the state that they used to inform the public about the project.

They shared flyers in post offices, posted notifications online and published a registration link for the event on ProPublica.
The storytelling event was hosted via Zoom.

Impact

In addition to the impact people who were featured in the stories experienced (for example, a long overdue device being delivered), the results of the project informed a new, vital question: How do people with IDD consume the news, and what is this community truly interested in? This project was focused on analyzing what people with IDD are interested to read about and the format they prefer it in. They were concerned that their plain language translation didn’t necessarily reach anyone and even if it did, it wasn’t very accessible to them. They spent financial resources for transcription and American sign language translation services for both of the virtual events they held. But they eventually applied for a grant offered by the Brown Institute and were able to receive it. They are now able to further expand their research on how to make news consumption for people with IDD more accessible.

The State of Denial project received wide media coverage, including from the Wall Street Journal, Nieman Lab, the Columbia Journalism Review and local news coverage.
It made people who never thought about disability coverage, but who work closely with people with IDD, consider sharing the story with the IDD community. (I.e. caretakers, friends and family).
Offering the report and event in plain language informed public outlets and their readers how journalism can be more inclusive.
People with IDD left the storytelling event with media interview knowledge; the lasting implications of media communication knowledge are simultaneously immeasurable and necessary for future stories.

How it Happened

On New Year’s Eve in 2018, a woman with intellectual and developmental disabilities gave birth to a child while living at a government-regulated institution in Phoenix, Arizona. The woman had been raped by a caregiver at the facility. When freelance reporter with the Arizona Daily Star, Amy Silverman, heard about the sexual assault she pitched an investigation with ProPublica. There are fewer than 200 people in Arizona with immediate care facilities, which led to Amy’s question: What’s going on with the tens of thousands of people with IDD who live with their families or in group homes?

What Worked

1. Making space to tell stories

In the pitching of this project, Amy, Maya and Beena partnered with a theater group and held storytelling events and workshops for people with IDD. They provided a space for them to share their stories and various aspects of their identity that were not limited to their disabilities. Their objective was to reach people where they are so they could participate in the story. Their engagement initially was limited to people with IDD, thus, they avoided consulting their parents, lawmakers, or bureaucrats who typically tend to speak on their behalf. They were striving to let people with IDD tell their own stories.

2. Making their report accessible

They published a callout, with efforts to make it as accessible as possible. They used plain language translations during the storytelling events. Their goal was to present their information in readable, accessible formats. They mainly pursued an academic project in which they looked at people with IDD and how they consumed the news. They aimed to prevent cognitively disabled people from being left “out of the loop” on the information most communities can access with little difficulty. They also emphasized how the public must not assume that just because somebody is identified as having IDD that they can’t communicate.

3. Ensuring inclusive participation

This project acted as a powerful force to combat the stigma against people with IDD and include them as equally valued members of society. Amy, Maya and Beena actively avoided over-portraying people with disabilities as helpless or deserving of pity or overly portraying people in these communities as heroic. People with disabilities are seldom covered in the media, and when they are featured, they are often negatively stereotyped and not appropriately represented. The project provided various services for people with IDD to utilize during the storytelling events: the stories can be read in plain language, and Spanish and are available as audio versions.

What Could Have Worked Better

1. Reaching people in more rural areas

Their reporting was relatively inclusive, though it failed to reach rural communities that often have fewer service providers and resources for health care and community service. Compared to adults with disabilities living in urban areas, those in rural areas may face additional barriers like transportation problems, access to education and vocational rehabilitation services, access to health care and accessible communities.

2. Distributing to a wider audience

They wanted to get the project to group homes, but distributing the stories may not have been in the best interest of the government employees who run these group homes. Talking to people with IDD in group homes can be difficult as there are rules and policies journalists have to abide by to make this possible. Nevertheless, reaching out to people with IDD living in group homes and giving them the space to share their varied experiences would have been a valuable addition to the project.

Learn More

To learn more, feel free to reach out to Maya Miller or Amy Silverman on Twitter or check out the following to learn about the project:

Tags: Collaborations, Diversity Equity & Inclusion, Storytelling Events