All about us

When writer and oral historian Nicki Pombier Berger learned that her son Jonah was born with Down syndrome it opened up a whole new world for her.  She soon realized that before Jonah she had never met anyone with Down syndrome or even had a meaningful encounter with anyone with an intellectual disability.

At the time, she was in graduate school at Columbia, and decided to use her education to navigate this new world.  In September 2012 Nicki began interviewing adults with Down syndrome who had successfully advocated for themselves and on behalf of others.  As the number of interviews grew she named the project Nothing About Us Without Us and  began sharing the interviews on Cowbird, an online storytelling platform that allows people to post stories using text, photos, and sound.

Screen shot from Cowbird.com

Screen shot from Cowbird.com

The Recollective:  What inspired you to document these stories?

Nicki:  My decision to focus on the stories of self-advocates reflected both my own driving curiosity about what it means to live with Down syndrome, and my sense from a few pivotal conversations that voices of people with Down syndrome weren’t necessarily being heard, even at times by those who are advocating for them. While I began with a set of research questions related more specifically to how self-advocates viewed their own roles in the advocacy landscape, my project evolved as I developed relationships with my interviewees and better understood some of their desires to speak and be heard for who they are: in the words of interviewee David Egan, to be seen as “one of us, not one among us.”

In creating an editorial product as the centerpiece of my thesis, I wanted to connect the self-advocates with an audience who might not encounter anyone with Down syndrome otherwise. In my interview and editorial process, I worked to leverage the tools and ethics of oral history in the service of self-representation for my interviewees, working to show their agency in their own lives and the lives of others. I confronted, challenged and expanded my own limited views, and in making my thesis public, I hoped to help others do the same.

The Recollective:  What inspired the name of this project?

Nicki:  I first heard the phrase “Nothing About Us Without Us” from one of my interviewees, John Anton, a self-advocate from Massachusetts. In our interview, John told me about his efforts over the years to ensure that he has a say in decisions about his own life – where he lives, what kinds of work he does, what goals he wants to pursue, and so on. “Nothing About Us Without Us,” a slogan of the disability rights movement, means that no such decisions – at the policy or individual level – should be made without the full participation of the people they impact. I adopted this slogan as the title for my thesis in consultation with another interviewee, David Egan, whose perspectives on media representation of people with intellectual disabilities were influential in my decision to take an editorial approach with my thesis, rather than simply writing an academic paper.

The Recollective:  How did you find your interview subjects?

Nicki:  Once I had a focus – self-advocates with Down syndrome – my outreach process
pretty much followed my relationships and my geography. When I first decided to do my oral history thesis on Down syndrome, I met with Jon Colman, President of the National Down Syndrome Society (NDSS), who helped orient me to the landscape of advocacy and offered his support as my ideas for using oral history to explore Down syndrome evolved. When I decided to focus on self-advocates,

Jon and his colleagues, Sara Hart Weir and Vanessa Quick, connected me with self-advocates in their network who lived in driving range for me: Virginia, Pennsylvania, Massachusetts, and New York. I interviewed Claire Bible in Madison, Wisconsin, my hometown, whom I met through another NDSS contact, Sterling Lynk, Executive Director of the Madison Area Down Syndrome Society (MADSS).

There is no question that a focus on self-advocates – individuals who speak up and speak out for themselves and others – leaves out many individuals with Down syndrome.  A question I continue to explore is how to support autobiographical storytelling with individuals for whom an oral narration may not be the best way to “tell” their story.  Noelle McCormack, an oral historian in the UK, is doing work I admire on that front, and the anthology edited by Dorothy Atkinson and Fiona Williams, Know Me As I Am, is so rich, thorough, and thoughtfully compiled, it’s a real standard-bearer.

Nicki Pombier-Berger with her son Jonah and advocate David Egan

Nicki Pombier Berger with her son Jonah and advocate David Egan

The Recollective:  The stories really vary in medium, style and subject matter.  What informed those choices and what is the common thread you hope emerges from all the stories now that they are collected?

Nicki:  I’m glad you’re asking this question – it means I succeeded! As I moved from interview collection into the editorial process, I knew I wanted to create a final product that would present stories reflective of the diversity and individuality of the self-advocates I interviewed. I also wanted to reach an audience who might not otherwise encounter individuals with Down syndrome.

Since I wanted to reach a general public, Cowbird was a fantastic platform, with its built-in broad ranging audience, its culture of curiosity and empathy, and its tools for connecting stories to one another on themes. But rather than starting with a sense of particular themes or topics I wanted to illustrate and looking for excerpts to do so, I went back to my interviews and listened for what I thought came through as most important to the interviewee, editing excerpts accordingly. I tried to edit in such a way that showed the interviewee as expert authors of their own experiences, endeavoring to communicate a concept or perspective or memory to me. Leaving myself as an interviewer in some of these excerpts is one way I did so.

But I wanted to make sure that Nothing About Us Without Us was more than just a nod to the disability rights movement – I wanted it to infuse the project. While I began editing by interpreting what I thought was important to each interviewee, I built in a review process that gave them a say in what I shared, and how. At the time of my interviews, I wasn’t yet sure what that final product would be, and while interviewees signed release forms giving me permission to use their interviews in my thesis, once I decided that the centerpiece would be online, I wanted interviewees to decide whether or not they wanted their stories “out there” in this way. I went through a second and more specific review and release
process, which informed my editorial options and choices. For instance, Sara Wolff restricted my use of her interview audio, but gave me permission to use transcripts, which is why her stories appear as text. She and other interviewees provided editorial input before I posted their stories to the collection, adding, deleting, combining or suggesting stories, and the resulting collection does, I believe, reflect a collaborative effort between myself and my interviewees.

The Recollective:  Will the project continue?

Nicki:  Yes.  David Egan, took a particular interest in the project, reaching out to me after our initial interview to ask if he could get more involved. Another great thing about Cowbird as a platform is that others can add their own stories to shared projects. David and I have conducted two workshops to introduce the project to others, and encourage them to add their own stories. We are also hoping to interview other individuals with Down syndrome together.

The Recollective:  What will become of the stories now that they have been collected?

Nicki:  I am currently processing the full interview materials for submission to the Regional Oral History Office (ROHO) at the University of California, Berkeley, for inclusion in the Disability Rights and Independent Living Movement collection. There the interviews will be preserved and available in full – audio and transcripts – to scholars, advocates, and, who knows, maybe another new parent looking to broaden their own view or understanding of what’s possible for (and from) people with Down syndrome.

To learn more about this project and find out how you or someone you know can participate go to http://cowbird.com/project/nothing-about-us-without-us/introduction/

Legacy of listening

Trey Rivera interviewing Khiari Benson in 2013

Trey Rivera interviewing Khiari Benson in 2013

Devote part of the curriculum to listening.

The concept was a radical one for 4th and 1 Football Camp—a free, weeklong camp that provides football, college prep, and life skills training to at-risk teens.  After all, there was just too much to teach and never quite enough time.

When The Recollective came to 4th and 1 in 2012 to record audio interviews of our student-athletes and volunteers, they turned our fast-paced camp on its head.

Our student-athletes were solving math and verbal questions, taking diagnostic exams, honing their handshakes and interview skills, practicing yoga, and running football drills 16 hours each day. There was barely enough time for three square meals.  Would devoting some of that precious time to listening exercises be worth it? Frankly, I wasn’t sure.

Student-athlete, Heath Holt

Student-athlete, Heath Holt

The Recollective scheduled me for an audio interview with student-athlete Heath Holt, a linebacker who had been coming to camp every summer since 2010.  The Holts were a cheerful family, always among the first to show up, en masse, to drop off Heath at camp.

“Why is your family so tight-knit?” I asked during the interview. A simple question but, it occurred to me, one I had never asked in all the years I’d known the Holts.

“Well, actually, it’s because of my little brother, who was born with Spina bifida,” Heath said.  “When my younger brother passed away, our family became even closer, because we found out what we had, and we realized we should enjoy what we have when we have it.”

How was it that I didn’t know this about Heath?

Over the course of the week, The Recollective collected stories from our student-athletes about topics as wide-ranging as being raised by a single mother, surviving Hurricane Katrina, loved ones who had passed away, gun violence, and race relations.

Overcome adversity.  It was a mantra we repeated at 4th and 1, but until The Recollective began listening, we didn’t know, concretely, what “adversity” actually meant to our student-athletes.

“I play football in memory of my father,” a reserved fifteen-year-old Ralph Trey Rivera, III explained in his Recollective interview.  Trey was so quiet that he’d allowed me to call him Ralph for three days until he corrected me.  “Actually, Ralph is my dad, so everyone calls me Trey, or Big Trey,” he said.

Trey, who had watched his father collapse from a heart-attack in their kitchen when he was just nine, couldn’t think of just one favorite memory of his dad.  “Every memory is a favorite memory.”

The Recollective’s audio interview became, for Trey, a distillation of his motivations and dreams, and Trey fell in love with radio as a medium.

In 2013, Trey picked up where The Recollective left off by collecting audio interviews of his fellow student-athletes during his second year attending 4th and 1.

Trey had also spent the year thinking about how he’d struggled after his father passed away, he told me, and here’s what he was going to do about it—start his own camp, one similar to 4th and 1, but for 8-12 year-old kids.

Ralph Trey Rivera III with student athletes at Camp Strive

Ralph Trey Rivera III with student athletes at Camp Strive

“When I lost my father it was the hardest time for me,” Trey said during an audio interview we recorded in 2013.  “I didn’t care about school, I wasn’t the nicest kid, and I was always bullied. It was the hardest time in my life, because I didn’t know who I was anymore.”

As a legacy of The Recollective’s work at 4th and 1, student-athletes now sit in small groups with mentors and talk at the end of each day.  Just listen to them, I instruct our mentors.  That’s the most important thing you can do.

Or, as Trey put it:  “It’s very hard to talk about sometimes, because, you know, just as these student-athletes that I want to serve through my camp feel like there’s nobody there to listen to them and be there for them, I also feel like that sometimes.

But then, I look at my supportive family, and I look at my mentors and these people around me who are opening doors that I would not have known about if I had not gone to 4th and 1 Football Camp. It’s really an opportunity when you’ve gone through such hard things, and you go to one camp and you regain your self-confidence. You regain everything.”

HeadshotGuest blogger, Vivian Chum is Executive Director of 4th and 1 Football Camp and an attorney in Washington, DC.

 

When real Americans come to New York

On March 13th THE REAL AMERICANS opened Off-Broadway at Culture Project for a five-week run.  I’m sharing this link to an interview I did with writer/ actor Dan Hoyle for Turnstyle News back in 2012 when he was performing the show in the Bay Area.

Check it out and go get your tickets! 

Screen shot from Turnstyle News

Screen shot from Turnstyle News

New age

Screen shot from Teenagefilm.com

Screen shot from Teenagefilm.com

A classic metaphor for youth is Spring.  So now that Spring is (finally) here I’ll be posting and re-posting about some storytelling and documentary projects by and about young people.

Last month, when I was aching for an early thaw, I interviewed producer and teen mentor Olivia Cueva about the Berkeley-based Screenagers film festival.  This week I’m sharing the trailer for Teenage.

To find out when and where Teenage is playing go to Teenagefilm.com and while your on the site check out the Youth Culture Blog, too!

Sonic Drifting #2

sonicdrifting #1

The Recollective is comprised of 5 individuals – and though we are one unit we are also a  composite of smaller friendships. Over the years it has been our pleasure to both discover and leverage the chemistry that results from those various combinations. In this month’s Sonic Drifting post we express those relationships in sound. Each member of the Recollective was assigned another member and asked to submit a song that most represented that person. What follows is a closer look at our collective personality as told by the members themselves.

 

Chaela

Jeremy: She’s not a rich girl but in our first long drive together from Glens Falls, NY to Buffalo we listened to Graceland and now this song always makes me think of Chaela Herridge-Meyer.


Song: Diamonds On The Soles of Her Shoes
Album: Graceland
Artist: Paul Simon

 

Nina

Chaela: Back in 2010 Nina and I were on the road in the sweet mountain town of Asheville, North Carolina. We went to a dance hall in a tiny town selling hot dogs and potato chips, hiked the appalachian trail with a 90 year old woman, drove into Cherokee land, learned to contra dance, and how to spell the word “holler” for note taking in interviews. Nina loves music that makes her heart light up, and when she’s dancing or tapping her feet, everything around her is brighter. I know I am. This song reminds of those pungently sweet spring days in Asheville.

 

Whitney

Nina: This song reminds me of Whitney for so many reasons. First and foremost we played this on the road a LOT. Often we’d find ourselves on a highway in the middle of nowhere blasting this song. And secondly there’s something about the pace that reminds me of WHL. The song starts out slow and melodic and then builds and builds until, towards the middle, it abruptly changes and becomes energetic and urgent. It’s almost two songs. My friendship with Whitney took some time to build. We were interns at StoryCorps together. I had a complete friend crush on her and somewhere into our time on the road together we became the sort of friends that I had envisioned….and energetic and urgent friendship. I leaned on her for many things. I hope that she might always lean on me. OR as the song says, “I don’t care just where you go as long, as long as it’s with me.”

 

Carl

Whitney: I thought I’d have to choose a hip hop song for Carl, but I kept coming back to this one. Although he loves his complex mixes and samples, I think deep down Carl is a classic soul, a philosopher who values both truth and dreams.

 

Jeremy

Carl: While in StoryCorps, Jeremy and I never ended up on the road together. But one thing everyone who hung with us individually knew that we’d have in common, was a love for music. It was true. I chose this song because not only was it an immediate connection between the two of us being that we are both serious Nina Simone fans, but Jeremy’s steadfast vision and no-nonsense demeanor remind me of Nina’s persona. His influence on me over the years has been wider and deeper than he knows. This song is just the start.


Song: See Line Woman
Album: The Best of Nina Simone
Artist: Nina Simone

Screen spirit

Screenagers is a Bay Area youth film festival curated by students in the Communication Arts and Science Program at Berkeley High School. In partnership with the Berkeley Art Museum/Pacific Rim Archive Film Theater, the 16th annual Screenagers Film Festival showcases a diverse selection of films made entirely by Bay Area high schoolers. 

Each year, student curators spend five months planning the festival while reaching out to other students through media productions teachers, via social media, and by putting up flyers and posters in local schools.

I talked with Olivia Cueva, independent producer and curatorial mentor for this year’s festival, to learn more about the process behind the screens.

Final Publicity Poster
The Recollective: How did you become involved with Screenagers?
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Olivia: I participated in the student curator internship when I was in high school. The experience was really fulfilling and I loved being a part of such a selective and challenging process. Being a curator combines artistic vision with administrative action. This fall I was asked to step in as the curatorial mentor for the students. It was a challenge because teenagers are so hardheaded and skeptical of adults trying to advise them (I can’t front, I was like that too) so I put a lot of energy into making sure each student felt valued and autonomous in their work. There were bumps in the road (like not getting enough submissions in the beginning, or having to rework the order of the festival several times to fit in to the Pacific Film Archive’s standards) but overall this experience has been really rewarding, especially after hearing what the student curators learned through the process.
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The Recollective:  So what are your responsibilities as the curatorial mentor? ——————
Olivia: The curatorial mentor is essentially the project manager of the internship and film festival. My role is to schedule deadlines, assign and manage tasks the student curators take on (everything: researching and contacting media teachers, outreach and follow up, design work, organizing and screening all films, tech work, etc.), and act as the liaison between the students, the Pacific Film Archive, and CAS. I act as an advocate for the students.
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The Recollective: Can you describe the role of the student mentor?
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Olivia: This is a new role that has been implemented in the past couple years. The student mentor is someone who participated as a student curator with Screenagers the previous year. Because they have been through the process and know the ins and outs of the internship, they help advise the current students curators and assist the curatorial mentor.
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The Recollective: How many teens participate usually?
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Olivia: It is hard to say. In the past, the festival got WAY more submissions, but now that there are other youth festivals out there (which is great!), Screenagers submissions have dwindled. Aside from the ten student curators, it is safe to say that over one hundred students participate each year.  We encourage teens to keep submitting films each year – even if a film doesn’t work for the current year’s program, it doesn’t mean it won’t be accepted the following year.
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The Recollective: What is the mission or the end goal for the program?
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Olivia: The goal of the internship is to teach students all that goes in to organizing and curating a film festival. The goal of the festival is to have a showcase that includes films made by a diversity filmmakers from different high schools all over the Bay.
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The Recollective: In the years that you’ve been involved in the program, what has been most surprising about the teens and their work?
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Olivia: I’m thrilled to learn that there are lots of media programs that support youth development in the Bay Area, and it is awesome to receive films from programs I’ve never heard about! I’m also generally surprised (and thrilled) with the quality and subjects of the films we receive.
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You can learn more and “like” Screenagers by going to http://visitberkeley.com/events-ncal/index.php?com=detail&eID=35868

Snowbirds

As the snow and ice from Printthe second big snowstorm of the season slowly melts (and a third storm is rumored to be on the way) the debate on climate change has been rekindled once again.  Whether you agree that global warming is a threat to our planet or not, I think you’ll enjoy Winters Past.

This new audio project  is brought to you by the husband/wife team of Josie Holtzman, a sound artist and former producer on WNPR’s Where We Live, and Isaac Kestenbaum, a writer and audio producer who works at StoryCorps.  Released almost episodically these “soundwalks” are best heard in specific places while walking.  For folks who don’t have access to or interest in venturing out into the icy environs described in the “The River” or “Everywhere,” you can still enjoy these ambient narratives that take you back-and-forth between the past, the present and the future.

The project is supported by Invoking the Pause, an environmental grants program  advancing public awareness about climate change, but again there is something here for even the staunchest climate change denier.  Listening to “The River” I could feel the anticipation and excitement of charging down the Hudson in an ice yacht.  I smiled as I listened to “Everywhere” and imagined rushing naked from a makeshift sauna out onto an icy pond.  Both stories explore the rapidly changing environment but they also hone in on small moments of wonder and anticipation while documenting kinships and traditions that may only blossom in the cold.

jsperrc

John Sperr, a member of the Hudson River Ice Yacht club, and one of the voices featured in this walk. Photo courtesy John Fasulo

You can see more photos, read more shared reminiscences, and get updates about Winters Past on Facebook and Twitter.  Holtzman and Kestenbaum’s next story, “The Lake” is coming soon.