A Day of Stories and Shared Experiences at Rose F. Kennedy CERC

On Wednesday, November 4, 2015, an exciting new collaboration took place on Einstein’s Jack and Pearl Resnick campus, between StoryCorps and the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center (RFK CERC) run by Montefiore’s pediatrics department. As part of its New York City outreach program, StoryCorps—an initiative that, to date, has collected and archived more than 50,000 interviews with 100,000 participants—visited the Bronx for a day of interviews with parents whose children receive RFK CERC services.

Allie Brudner and Noor Al RadiThe joint initiative stems from RFK CERC’s Parents on Parenting (POP) project, which got its start at the center’s annual parents’ workshop this past April.

Amplifying Parents’ Voices

“The main objective of the POP Project is to amplify and document the voices of parents who have children with disabilities, to help build a community among the parents and to educate others about their experiences,” explained Noor Al Radi, who together with fellow speech-language pathologist Allie Brudner developed the POP Project and organized the StoryCorps visit.

“Connecting with StoryCorps offers the perfect venue for making sure the voices of our parents are heard beyond the clinic walls here at Einstein and Montefiore,” added Ms. Brudner.

“Often, the voices heard in the media are those of clinicians and celebrities, and their perspectives are not always representative of the challenges that many, if not most, parents face,” noted Ms. Al Radi. “We thought it was important that our parents have an opportunity to share their stories and experiences.”

Telling Their Stories

During the day of interviews, two representatives from StoryCorps met with ten parents and a pair of RFK CERC staff members to conduct six 40-minute interviews.

“Two parents asked to be partnered with a staff member rather than another parent,” explained Ms. Brudner. “They felt it reflected their experience with CERC, and we were quite moved by the gesture.”

“To get the parents comfortable, we offered a couple of general prompts that could help them to recount the moment they found out about their child’s diagnosis and what it’s like to parent their child,” explained a StoryCorps facilitator named Morgan. “The mission of our outreach program is to partner with organizations whose participants have an underrepresented voice, and to use the stories from their interviews to get past the statistics and help transform the way people think about certain issues—in this case, children with disabilities.”

Judy L. Aschner, M.D.From the parents’ perspective, the POP Project provides a unique opportunity to share their stories with other parents experiencing similar challenges, as well as with the broader community. Speaking after their interview, parents Alex Mora and Kenya German noted, “The free-form interview style allowed us to talk about ourselves and our own individual experiences. While we talked about the things we’ve been through with our child, we also were able to share factors outside of being identified as the parent of a child with a disability.”

Building a Collective of Stories

“Our ultimate goal is to have the interviews catalogued so that a library of stories can be established that will be available to the public,” said Ms. Brudner. “Through our partnership with StoryCorps, we’re hopeful that the POP Project stories will be released online, reaching households and hospitals, and helping others dealing with similar issues and challenges in knowing that they are not alone, and that their voices might also be heard.”

The duo ultimately hopes to implement the use of a searchable “#POP,” which will allow their library of parent stories and the POP project to continue growing.

“Historically, parents involved with our programs have been vocal in ways that have proven instrumental to improving access and the scope of services for children with disabilities,” noted Dr. Judy Aschner, professor and university chair of pediatrics at Einstein and Montefiore, physician-in-chief of the Children’s Hospital at Montefiore and the Michael I. Cohen, M.D., Chair in Pediatrics. “This collaboration with StoryCorps builds on that tradition in a way that empowers parents and informs the greater community.”

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