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

By Rosie Eck, Erika Clark, Tony LaBate and Louis Middleton: For More Info, Go Here…

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.”

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