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“Patient No More” Project Director Interview

Patient No More is a multifaceted project that tells the story of a little-known chapter in California’s history: how a group of determined Bay Area activists took over and occupied a federal building in San Francisco for 26 days in 1977 to protest the lack of progress in securing civil rights for disabled people. This action, along with related events across the country, are considered by scholars to have launched the national disability rights movement, whose efforts ultimately resulted in the passage of the Americans with Disabilities Act in 1990. Drawing from 40 new oral histories, previous documentation, and other research, the project of the Paul K. Longmore Institute on Disability at San Francisco State University has produced an exhibit, a traveling version (supported by a Community Stories grant), a website, curricular materials, and public programs to share this important California story with the public. California Humanities staffers Jody Sahota and Felicia Kelley recently spoke with Catherine Kudlick, Director of the Institute, and Emily Smith Beitiks, Associate Director, to learn more about the project.

WHY DID YOU DECIDE TO TELL THIS STORY THROUGH THE MEANS OF AN EXHIBIT?

Cathy: About ten years ago, I saw a wonderful exhibit at San Francisco Public Library about the Selma march that had been developed from oral histories young African-Americans had done with elders. As a historian myself, I found it incredibly moving to see an intergenerational project that connected youth with people who were actually involved in making history. So when we started thinking about a project to commemorate the anniversary of the Americans with Disabilities Act and the important role Bay Area activists had played in its passage through this event, we knew we wanted to do something that would connect generations and make sure this history was passed on.

Emily: I think we felt that developing an exhibit that would explore the story of this “occupation” primarily through first person testimonies would be a way to make history come alive in a way that would engage people both inside and outside the disability community. A really important part of our mission here at the Institute is about counteracting the common misperception of disabled people as passive “objects” of care. We wanted to share this story, not just because of its historical significance, but also because it shows disabled people as change agents and history-makers.

IT APPEARS THAT THIS EXHIBIT BREAKS NEW GROUND, NOT JUST IN TERMS OF THE SUBJECT MATTER, BUT IN THE FORMATS YOU USED.  CAN YOU TELL US SOMETHING ABOUT THAT?

Cathy: The concept of accessibility really informs the whole project and was “built into” the design of the project.  Rather than being a limiting factor, we started from the point of view that if you make something accessible for disabled people, it actually benefits everyone. We were very fortunate to be able to involve some wonderful museum professionals in this project, as well as students from the Design and Industry program here at SFSU. As a result, we think we’ve created something that has the potential to affect the way museums and cultural organizations generally think about accessibility issues and exhibit design in the future.

Emily: Most exhibits, especially traveling exhibits, pose accessibility issues for disabled people. We tried to get around that by making sure that people could access the information in multiple ways. For example, we have gallery guides in Braille and the audio tour includes contextualizing descriptions as well as the label text so that blind visitors can access the richness of the images. We tried to keep the language simple and clear so that people with cognitive impairments can grasp the material. By adding an online component, we further enabled people to customize their experience and manipulate the exhibit materials in ways they choose to suit their abilities. And, of course, adding the traveling exhibit component is allowing us to broaden the audience for the project and reach many more people – another dimension of accessibility.

WHAT WERE SOME OF THE CHALLENGES YOU ENCOUNTERED?

Cathy: Well, ensuring accessibility was definitely a challenge!  On the technical side, we struggled to accommodate many peoples’ desires and sometimes had to make difficult choices between competing needs, e.g. balancing visuals and text, best way to layout information, what font size to use, etc.  This was a really ambitious project that involved many community as well as on-campus partners. Managing these relationships and keeping all the parts moving smoothly took up a huge amount of energy and effort but was absolutely essential to doing the kind of project we wanted to do.

Emily: Because so much of the exhibit was drawn from stories shared by community members, we felt a special responsibility to include many different (sometimes conflicting) opinions and perspectives. It was definitely a challenge to do the project in a way that was inclusive and accommodated a diversity of voices, but still manage to tell the larger story in a clear and coherent manner.

TO DATE, WHAT HAS RESULTED FROM THE PROJECT? WHAT DO YOU HOPE IT WILL ACCOMPLISH?

Emily: We’re very happy that we were able to collect 40 oral histories, many from people who hadn’t had a chance to share their experiences before. These were definitely not just the “usual suspects” or the few people who had attained media recognition as “spokespeople” at the time. Many of the people we interviewed hadn’t spoken about the experience for years. For some, doing so was transformative — a way to remember and relive one of the most meaningful experiences in their lives. For others, having their contributions to the success of the movement finally noted and recorded was actually a way to heal old wounds. These stories have contributed to expanding our understanding of this period and the emergence of the disability civil rights movement, and done so in a way that’s exciting, complex, and nuanced. It’s been wonderful to hear visitors say “Now we know we have a history.”

Cathy: One desired result is that this project will help change how people with disabilities are viewed by the larger society. My hope is the next time a disabled person encounters a doctor or lawyer or teacher or potential employer (or employee) who has been to the exhibit, that they’ll be seen as a person, not just someone in a wheelchair who needs help or is somehow “deficient.” I don’t think anyone can come away from the exhibit without appreciating the creativity and courage of the people who participated in the 26-day occupation. And we think the accompanying curriculum and the teacher trainings we’re doing will bring the message to middle and high school students in the Bay Area, and help promote greater acceptance of disabled youth by their peers. I also think the way in which this project engaged students (over 60 SFSU students from different departments contributed to the project), faculty, and community partners has been a great accomplishment, even if, as we said, it was very challenging to manage.

WHAT ARE YOUR PLANS FOR THE FUTURE?

Emily: The exhibit will be traveling to seven locations in the Bay Area this fall (a list is available on the project website) and we’re receiving lots of inquiries from potential venues for 2016. If anyone is interested in hosting it, please get in touch. Beyond that, we’re also hoping to travel it to Sacramento, and perhaps even to Washington, D.C.

WHY DO YOU THINK THE HUMANITIES ARE IMPORTANT? 

Cathy: All too often, we tell our stories only to others who are like us. These stories provide a window into a culture and a history that most people know little about. As an educator, I think the humanities have an important role to play in educating people, and I do think people will learn from this project. As a historian, I see another type of value in doing this kind of work. This project has allowed us to recover and preserve historical accounts that might have been lost forever.

Emily: The title of the project really sets out what the activists were trying to accomplish back in 1977 and what we’re still trying to do today: make people aware that people with disabilities are not “patients” – damaged people to be pitied – but human beings just like everyone else with the same desires to be part of their communities and to lead full lives. By encouraging people to examine their beliefs and challenge their understanding what it means to be human, we’re putting the humanities into action.

               

Photo credits:Hannah Anderson, LCA Communications – San Francisco State University

For a teaser of the exhibit, please click on this link.

You can get in touch with Cathy and Emily through the project website: www.patientnomore.org

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