Stories of people with intellectual disabilites brought into light

Standing in the stairwell of City Hall looking up at his series of portraits on display, photographer JJ Tiziou points out that the word photogenic does not mean “good-looking,” as it is commonly used. It means “light-generating.”

“It’s not about how you look in pictures. It’s about how you let that light shine, how we illuminate others,” he said, looking up at his portraits of people with intellectual disabilities from state centers and sheltered workshops. “When people live in segregated settings, our world is deprived of the light they can let shine.”

Tiziou’s portraits of residents and participants from Selinsgrove Center and KenCrest Services are up in City Hall’s northeast stairwell through May 6 in a show entitled “Here.”, as part of a yearlong series of events related to the ongoing project with Temple’s Institute on Disabilities, “A Fierce Kind of Love.”

Interviews with participants can be viewed on City Hall’s fourth floor. Guided tours of the exhibit will be hosted on Wednesday and Thursday.

“We met really beautiful people,” said Lisa Sonneborn, the project’s coordinator. “The intellectual disability rights movement is a very compelling civil rights story that no one really knows about.”

While Pennsylvania was the state where some of the first historical institutions for the people with developmental and intellectual disabilities were created, it was also the first state to open public schools to children with disabilities, and to shut institutions down.

About 1,000 state residents with intellectual disabilities live in state centers, and about 16,000 either work or learn to work at sheltered workshops and adult training programs.

The history that participants share in interviews, which can be viewed online, include stories most of us can never imagine.

Frank from Selinsgrove Center is a South Philly native who describes his first memory as arriving Selinsgrove at age 11. In his interview he describes working with small engines in the center’s auto shop, and talks about being “proud” to be at Selinsgrove. The project brought him back into Philadelphia for the first time in decades.

“People who live in state centers or sheltered workshops … are usually asked about their health and safety,” Sonneborn said. “It is less often that we really ask them about themselves, their childhoods, their memories, their desires long-term.”

Others were institutionalized in places like Pennsylvania’s infamous Pennhurst asylum – which was shut down decades ago and has since been repurposed as a haunted house attraction.

“Many people we interviewed lived at Pennhurst. They didn’t all want to talk about it,” Sonneborn said. “A lot of them probably have strong feelings about it being repurposed as a haunted house. We really want to think long and hard about how to support a community where some members were placed in inhumane conditions.”

One former Pennhurst resident interviewed for the project, Betty, was taken back to Pennhurst by the Syfy channel show “Ghost Hunters” in a somewhat questionable choice by the show’s producers.

“That’s something I’ll never forget and I hope that I never have to go into another institution for a long time,” she said in her interview of her time at the asylum now known for abusive treatment of patients.

The legacy of Pennhurst is just one small example of the history explored by this project, which first started in 2012.

For Tiziou, the project was a chance to meet people who typically only interact day-to-day with caregivers, family members and other adults with disabilities.

“It was a chance to meet people I otherwise would never have crossed paths with — folks who have so much to offer, but remain unseen,” he said. “It is an interesting question — why is this world so separate?”

In April, a mixed ability cast will perform “A Fierce Kind of Love,” a play telling the story of the intellectual disability rights movement. Visit afiercekindoflove.org for more information.