More about the project and exhibit

Approximately 1,000 Pennsylvanians with Intellectual Disabilities live in state centers, while another 16,000 are served by sheltered workshops and adult training programs. Whether we see them is, for many of us, a function of whether we choose to look. Whether or not we make that choice, these places are here, and they belong to us.

HERE: Stories from Selinsgrove Center and KenCrest Services invites you to meet nineteen people with intellectual disabilities who live and work in Pennsylvania. The settings (a State center and a sheltered workshop) may be new to many of us, but they are a part of our shared history. Here. provides a bridge to the lives of our "narrators" by way of eighteen volunteer "interviewers" who visited them at the Selinsgrove Center and KenCrest Services in the spring of 2015. Over the course of two months, people who would never have had the opportunity to meet came together. They shared meals. They were interviewed and photographed. Our interviewers saw settings that they didn't know existed and engaged with people who didn't communicate in traditional ways. They considered what it means to live and work apart from the community, to be "other." Our narrators, in turn, expressed feelings of validation, the kind that comes with being heard, and being seen as the expert author of one's own experience.

This complex story is told in audio interviews conducted by our volunteers, in images by photographer JJ Tiziou and in photographs co-created by the narrators themselves. The result is a story highlighting the rich humanity of people who are often seen for their difference, if at all. Here. asks you to look and listen differently, and consider that what was thought to be difference might, be an invitation to connect.

The exhibit is timely. Across our nation, there is growing debate about where people with Intellectual Disabilities live and work. The simple act of acknowledgement - recognizing and listening to the real people at the heart of these issues - requires us to consider who is included, and who is left out of these conversations.

Our process

"Life stories, and the opportunity to tell them, are particularly important for people with [intellectual] disabilities because often then have been silent, or silenced, while other people - families, practitioners, historians - have spoken on their behalf."
Dorothy Atkinson

Visionary Voices preserves and shares the history of the intellectual disability rights movement in Pennsylvania. Through oral history interviews, a generation of advocates and self-advocates give first hand accounts of the world they worked to change and how they made it happen. Their efforts were instrumental in changing the way people with intellectual disabilities live, ensuring their right to education, and moving from the isolation of institutions toward community inclusion. Who are the people living out this history? For all the gains that have been made, many people with intellectual disabilities continue to face challenges in housing, employment, and in making meaningful connections with people in the community at large. What is the present-day reality for Pennsylvanians with intellectual disabilities?

These are questions often taken on by people who don't have intellectual disabilities, who have a personal or professional connection to disability. We wanted to find out from people with intellectual disabilities themselves what their lives are like, and to bring into the conversation people who might not have found their way there otherwise. The tools and ethos of oral history provided us a way to do both.

Oral history is a practice founded in the belief that people are the expert authors of their own experiences. The ethics of oral history puts the ownership of the story in the hands of the narrator, and requires a rigorous review process to ensure that narrators can exercise control of what they share, and how. The space of the oral history interview creates an encounter where people who start as strangers can share of themselves with an intimacy that allows for nuance, uncertainty, humor, and vulnerability. We invited volunteers and narrators to join together in that space this spring. The result is Here.

The nineteen narrators we worked with communicate non-traditionally; the volunteers were novice interviewers. The interview exchanges are unique moments in time, captured in audio. In sharing the content from these exchanges, we hope to invite others into encounters they might not have otherwise, to listen differently, and to be open to hearing commonality across difference.

Here's a brief overview of what we did, and how.

Participants

Volunteer interviewers ranged in age from college undergraduates to retirees, and came from a range of backgrounds, professions, areas of study, and abilities. Volunteer applicants were recruited though a range of arts, education, community and advocacy organizations.

Narrators were invited to participate by our liaisons at each partner site. At Selinsgrove, Kevin Dressler, then-Facility Director, and Coleen Sassaman, DRN Advocate, and at KenCrest, Director Alfonso Ridolfi, met with our team and compiled a list of prospective narrators. Project staff including Lisa Sonneborn, Producer, and Nicki Pombier Berger, Oral Historian, met with people who were interested in participating, sharing more detail about the project and the interview process. Lisa and Nicki then worked with partner liaisons to determine the final list of narrators. At Selinsgrove, interviewers and narrators were paired during a meet-and-greet morning session the day of the interviews. At KenCrest, interview pairs were determined in advance by Lisa and Nicki.

Interviewers: Bill,Carole,Liz, Susan,Sean, Nichole,Tim, Kathy, Becky, Katie, Gail, Evie, Beth, Cathy, Jess, Ben, Nicole

Narrators: Frank, George, Jennifer, Jim B., Jim C., Norma, Richard, Shantalle, Barbara, Naomi, Betty, Thomas, Edith, Helen, Jimmy, Joe, Justin, Mike, Ralph

Volunteer Training

On March 14, 2015, Temple hosted an interviewer training session for all volunteers. Celia Feinstein, Co-Executive Director of the Institute on Disabilities and Lisa Sonneborn provided a broad historical context for the Intellectual Disabilities Rights Movement. Margery Sly, Director of Special Collections at Temple University Libraries, discussed the field of oral history. Nicki Pombier Berger offered an overview of how to conduct an oral history-style interview, touching on some of the ways in which working with nontraditional narrators might challenge the tools of oral history. Volunteers received a technical training from Temple graduate student Christian Clayton Strevy, and practiced interviewing and using the recorders in informal interviews with one another.

Recording Days

Selinsgrove State Center - April 11, May 9 Eight volunteers traveled together to Selinsgrove by bus twice this spring. Both visits were a full day of activities on-site.

The first visit, in April, began with introductions all around, and a mingling "ice-breaker" session. Narrators and interviewers had been asked to bring something that was significant to them, and used these objects - photo albums, artwork, mementos and the like - as points of entry to conversation. During that session, project staff helped facilitate pairing for the interviews. Following the morning ice-breaker, everyone had lunch together in the Selinsgrove café. After lunch, the afternoon was filled with hour-long interview sessions, conducted in separate spaces throughout Selinsgrove Center, and photo portrait sessions with project photographer J. J. Tiziou. The visit ended with soft serve ice cream for all, a specialty of the Selinsgrove café.

Debriefing the visit on the bus ride home was an opportunity for project staff to hear what worked well, what worked less well, and what adaptations we might make for the upcoming recording days at KenCrest, and return visit planned to Selinsgrove. One significant takeaway from volunteers following this first trip was that their conversations with the Selinsgrove residents outside of the space of the interview were actually richer and more natural than what happened when they went to private rooms and turned the recorder on. We decided that, on our return trip, volunteers could do more recordings, inviting the narrators to bring them to a location of their choosing for "field interviews." In this way, we hoped to offer narrators an opportunity to showcase their expertise, by showing us their work sites, art projects, hobbies, and the things, people and places that are important to them. On our return visit on May 9, volunteers reunited with their narrators, and took their recorders on the go, visiting the various places on the Center's grounds where each narrator was able to share something personally important to them. Each narrator spent time with J. J. as well, taking self-portraits alone and with their interview partner. The day ended with a tour of Selinsgrove Center's expansive grounds, co-led by Facility Director Kevin Dressler and narrator and long-time resident Frank, who has spent most of his life at Selinsgrove and could describe how things have changed over time.

On our bus ride back to Philadelphia after the second visit, volunteer interviewers offered a number of reflections on how this visit differed from the first, and how the experience as a whole had changed their perspectives; moving from assumptions about what someone might not know to an appreciation of all they do know, even if it's expressed differently; experiencing the different ways that one might measure, remember or experience time; reflecting on the notion of choice, and what it means to make a meaningful choice, and the extent to which that is a function of not only having choices to make, but learning how to make them for oneself; and wondering how to act on the desire this experience activated, to find more opportunities to connect with people living in some way apart.

KenCrest Services - April 22 & 23
Building on lessons learned from our first recording trip to Selinsgrove, our project team adapted our methodology for the recording days at KenCrest Services. Noting that narrators were tired after a long day, and that many had already spoken about themselves at length during the ice-breaker session, we opted to begin with interviews right off the bat at KenCrest, instead of spending time mingling beforehand. Project staff also set the interview pairs in advance. After the interviews, narrators took portraits with J. J. in the KenCrest gym, and then everyone gathered together for a pizza lunch. We gave our interviewers the opportunity to "debrief" over snacks at a nearby restaurant.

Narrator Review

KenCrest Services - May 13 & 14
A crucial part of the project is the opportunity for narrators to review their interviews and photographs, and make decisions about whether, and what, they share. At KenCrest, our volunteer interviewers returned a few weeks following the interviews, with interview transcripts, contact sheets of their photos, and iPads loaded with the audio. Once again, we all had pizza together as a group, then each interview pair met separately to review the materials. A member of project staff was present for the review process as well, taking notes in the transcript if any changes or restrictions were requested. Volunteers adapted the review process as needed; for some narrators, hearing the transcript read aloud was more effective than listening on the iPad; for others, the experience of hearing their recorded voice, sometimes for the first time, was powerful and moving. Narrators nodded along as they listened to their accounts, sometimes affirming themselves aloud – "That's right, that did happen, that's true!" – and sometimes prompted into more memories. All narrators approved the use of their interview materials and portraits for the project, and all had the opportunity to participate in J. J.'s self-portraiture activity.

Selinsgrove State Center - July 30
Since the volunteer interviewers did field recordings on their second visit to Selinsgrove in April, Lisa and Nicki made a return trip to Selinsgrove to review all of the photos, interview materials, and field recordings with narrators. During the review process, many of the narrators showed the same level of engagement and interest and affirmation that we saw in KenCrest. We worked closely with Kevin Dressler, Coleen Sausaman and other Selinsgrove staff to follow up and ensure that each narrator had the opportunity to decide whether and how much material from their interviews to share.

Curating Interviews

Lisa and Nicki curated audio from the nineteen interviews, working to edit each hour-long recording into a three to four-minute excerpt for the exhibits in Harrisburg and Philadelphia. As we curated, we sought to create portraits that showcased the humanity and complexity of the narrators, and to illuminate the dynamic between narrator and interviewer. We looked for laughter, moments of connection or efforts to work through disconnect, flares of mutual recognition, and feelings of longing or loneliness that come through in silence or through allusion. We listened for what moved our interviewers in the belief that, with some small effort, it will move you, too. Listen.