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/

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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.

 

Ralph Trey Rivera, Radio Rookie

Ralph Trey Rivera at 4th and 1 Football Camp in Mt. Pleasant, TX.

Ralph Trey Rivera at 4th & 1 Football Camp in Mt. Pleasant, TX.

In the summer of 2012, the Recollective went to 4th & 1 Football Camps in East Lansing, Michigan and Mt. Pleasant, Texas to teach workshops on photography and radio as well as interview the student athletes; one of those student athletes was Ralph Trey Rivera (Trey). Trey loved radio and was game to be interviewed and he asked lots of questions about radio. In the summer of 2013, Trey took over our work at the camp in Texas, and learned how to record and edit interviews with his peers. He edited a short piece from his recordings and has posted several stories on Cowbird. He even recorded an interview with the camp’s Executive Director, Vivian Chum, about his dream of creating his own non-profit.  Trey’s radio work at 4th & 1 caught the attention of the folks at Radio Diaries (some of the master’s of the art of radio, documentary). Trey was chosen out of over 800 submissions, as a semi-finalist in their Teenage Diaries Project. We are all wishing him the best as he pursues his dreams! So from the Recollective Radio Rookie desk, here’s Ralph Trey Rivera:

The Recollective: How did you first get interested in radio? What about radio excited you?

Trey: My first radio experience was at a camp called 4th & 1.  I was interested how they were able to take the stories of the campers like myself and communicate them to an audience.  It was exciting because you could speak to different groups of people and learn about them and each story was a new adventure for me.

The Recollective’s Top Ten of 2012

It’s been a busy year for The Recollective and, in the spirit of annual countdowns posted by just about everyone on the eve of each new year, I thought it would be great to celebrate some of the group’s 2012 highlights!

Langston Hughes in 1939 (Library of Congress)

Langston Hughes in 1939 (Library of Congress)

1) Carl kicked off a year of great audio projects on February 15 with a gorgeous hour-long documentary about Langston Hughes.  Hosted by WQXR host, Terrance McKnight,  I, Too, Sing America dives into the songs, cantatas, musicals and librettos that flowed from Hughes’ pen.  You can hear Carl’s audio craftsmanship right here.

2) In April, Morning Edition aired two stories about African immigrants in China produced by our very own Nina Porzucki.  You can hear the first story here and the second story here.  Nina was able to travel to China to produce these stories thanks to support from the John Alexander Project.

3) On May 25, just one month before the Supreme Court’s decision to uphold the majority of the Affordable Care Act, we launched the Health & Justice Project in collaboration with Jericho Road Family Practice and Jericho Road Ministries.  We produced an audio-documentary series exploring some of the disparities in our healthcare system as experienced by medical professionals, volunteers and patients in Buffalo, NY.  You can hear those stories here.

Share your story about healthcare in America with Health & Justice Project

Share your story about healthcare with Health & Justice Project (Screenshot from Causes.com)

In an effort to pair those powerful stories with strategic action, we then partnered with Causes.com, a free online platform that provides easy-to-use tools for driving change.  The Health & Justice Project page on Causes.com serves as a social media hub where stories can be shared along with petitions, pledges and resources about healthcare reform.  HJ&P now has over 200 members from across the country with over a dozen stories posted and more to come in 2013!

4) From May 31 – June 2 The Recollective attended the 2012 Christian Community Health Fellowship in Nashville, Tennessee.  We presented the stories recorded in Buffalo and interviewed medical professionals from around the country about the healthcare challenges facing their communities.  We produced four stories from those interviews with the help of Hans Glick who returned to Buffalo and continues to produce great stories like this one:

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5) Whitney went back to school and furthered her formal food education after receiving a scholarship from Good Food Jobs to study Vermont’s local food systems.  She went to Sterling College where she learned all kinds of cool things about Vermont’s local food system and even learned how to butcher a pig!  You can check out the audio slideshow she produced for a Good Food Jobs gathering right here.

Chat piles in Treece, Kansas

Chat piles in Treece, Kansas

6) In June, Chaela and Nina received a grant from the Kansas Humanities Council to produce a documentary project about Treece, Kansas.   Treece was a heavy supplier of lead and zinc ore during the World War I and World War II.  After the 1970s, ore production declined rapidly along with the population, turning the once thriving city into an environmental ghost town.  In 2010 Treece was bought out by the Environmental Protection Agency due to the enormous amount of lead pollution.  To hear this story stay tuned to Kansas Public Radio in 2013.

7) We spent part of our summer at the 4th & 1 Summer Football Camps in Mt.

Screen shot from Cowbird

“I play football in memory of my father.” (Screen shot from Cowbird.com)

Pleasant, Texas and East Lansing, Michigan.  A couple of the stories we recorded from Mt. Pleasant appeared on Cowbird and our audio postcard from East Lansing appeared on Huffington Post

8) This October,  Chaela and her sister Zannah, went to Santa Ana del Valle, Mexico where they produced this lovely piece on the the tradition of rug making in the small town just east of Oaxaca.  You can check out the story and maybe purchase one of the beautifully intricate rugs on the website for Traditions Cafe & World Folk Art.

9) On November 19 we produced two stories for Narratively, a recently launched digital magazine focusing on quirky, idiosyncratic and untold tales of New York City. We went behind the scenes at New York City’s fine dining establishments to find out what waiters, waitresses and bartenders think about their patrons — grilling a trio of restaurant staffers about what it’s really like waiting tables and tending bar. Janine, Jacob and Jenna (not their real names) spill the beans about horny customers, picky eaters and bad tippers.  Both stories were featured on Digg, Gothamist and the New York Magazine Blog!

National launch of StoryCorps' Military Voices Initiative at the Library of Congress in Washington D.C.

Jeremy preparing for the national launch of StoryCorps’ Military Voices Initiative at the Library of Congress in Washington D.C. (photo courtesy of José Castillo)

10) In December, yours truly coordinated the national launch event for StoryCorps’ Military Voices Initiative.  The initiative was launched to record and preserve the stories of post-9/11 service members, veterans and their families.  You can learn more about MVI on the StoryCorps website.

We’d like to thank our friends, families, clients and organizational partners for supporting us and making our second year a busy and productive one.  We can’t wait to share more stories with you in 2013.
Happy New Year!
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Dear Diary

This fall, Radio Diaries and NPR are collaborating with the storytelling site Cowbird on a project to collect personal, true, and surprising stories from teenagers around the country. Here are the stories from teenagers they’ve collected so far. A selection of the Teenage Diaries posted on Cowbird will also appear on npr.org. Plus, two teens will be selected to work with Radio Diaries to produce full-length audio Teenage Diaries that will air on NPR in 2013.

If you’re a teenager who wants a chance to produce a radio diary for NPR, first read the step-by-step guide to learn how to tell your story on Cowbird. Then sign up for a free Cowbird account, join the Teenage Diaries Project, and start writing! And if you’re someone who knows or works with teenagers, please help us spread the word about this project.

We interviewed Sarah Kramer, Associate Producer at Radio Diaries to learn more about this collaboration and the process of working with teens to tell their stories.

The Recollective: What was the impetus for the Teenage Diary collaboration with Cowbird?

Sarah:  We’re going back to five of the original teenage diarists who recorded their stories with Joe Richman 16 years ago and producing new documentaries about their lives now. We’re finding out what happened to Melissa, a teen mom; Frankie, a high school football star; Juan, who crossed the border illegally from Mexico as a teenager; Josh, a kid with Tourette’s syndrome; and Amanda, a gay teen who came out to her parents in her story. Their voices may be stuck in our heads as teenagers—but they’re actually in their 30s now! We decided to collaborate with Cowbird because we wanted this project to have a connection to actual teenagers today, and Cowbird is a simple and beautiful way to collect stories. Annie Correal of Cowbird helped us come up with the idea of making this a storytelling contest and selecting our next teenage diarists from the batch of contributors. BTW, the contest is still open, for any teens reading this! It’s very exciting because we have no idea what stories or teenagers will find us.

The Recollective:  As a producer how do you coach/guide teens recording their lives? Any tips for interested teens?

Sarah: Be yourself, be yourself, be yourself. Don’t worry about “sounding like” a professional, the most authentic voice is your own. Interview people—sometimes a microphone is the key that opens doors, and people you’ve known your whole life will tell you things you’ve never heard before. And record everything. Sometimes you don’t know that the most interesting things about your life are the ones you consider totally normal. Radio Diaries has a whole list of tips in our Teen Reporter Handbook, which I encourage any budding reporter to read. (We’ll also be updating this resource in 2013, so stay tuned). One tip we always tell teens is there is one simple rule for getting people to talk openly and honestly in an interview: you have to be genuinely curious about the world around you.

The Recollective: How might young people participate in this project?

Sarah: Any teenager between the ages of 13-19 can be part of the Teenage Diaries Project. Detailed instructions are outlined in the step-by-step guide on our website. But in brief, teens should first go to cowbird.com and set up a free account, secondly they should go to the Teenage Diaries project page and join the project, and thirdly, tell a story!  If you’re a teen reading this, make sure you have a picture to include and don’t forget to “add” your story to the Teenage Diaries Project so we can see it in our collection. If you have any questions, you can contact our outreach manager Nellie Gilles, Nellie@radiodiaries.org.

Check out the stories we’ve collected so far, tell your own, and tell your friends!

The Birds and the Cows

The Recollective had a great time this summer at the 4th & 1 Football Camps.  Back in August we shared a sample of the stories we recorded at each of the two camps.  Listen to the student-athletes in Mount Pleasant, TX right here and watch an audio-slideshow from East Lansing, MI right here.

After we packed up our gear and returned home, Vivian Chum, the Executive Director of 4th & 1 went one step further and began posting excerpts of the recordings on Cowbird.  And what, you may ask, is a Cowbird?  Wikipedia defines Cowbirds as “…birds belonging to the genus Molothrus in the family Icteridae. They are brood parasitic New World birds which are unrelated to the Old World cuckoos, one of which, the Common Cuckoo, is the best-known brood parasitic bird.”  But producer Annie Correal has a very different definition and she shared it with us in a recent interview.

Annie: Every group has a different approach to Cowbird — but they all ask us about the name. So here’s the answer: We’re slow and thoughtful like a cow, quick and light like a bird.

The Recollective:  So how did Cowbird get started?

Annie:  Jonathan Harris is an artist and computer scientist known for projects like We Feel FineI Want You To Want Me, and The Whale Hunt that incorporate vast amounts of data to create new forms of narrative. He spent two years developing Cowbird at art residencies around the world, and in a small beach bungalow in northern California.

He built this storytelling platform from scratch. It looks simple, but there are a quarter million lines of code underlying Cowbird. We launched in December, 2011 and to date around 20,000 people have joined us. They can tell their stories using photos, audio and text, folded into beautiful stories that can be shared across the Web.

Screen shot from the Cowbird website

The Recollective: What is Cowbird’s mission?

Annie: Our goal is to build a public library of human experience, so the knowledge and wisdom we accumulate as individuals may live on as part of the commons. When you tell stories on Cowbird, we automatically find connections between your life and the lives of others, forming a vast, interconnected ecosystem.

The Recollective: Is there a guiding philosophy behind Cowbird?

Annie: We build the world’s simplest and most beautiful storytelling tools, and we offer them for free to anyone who wishes to use them. By doing this, we hope to build a community of people interested in telling deeper, longer-lasting stories than you’re likely to find anywhere else on the Web.

We want to be as inclusive as possible, and are finding ways to extend this tool to people who are often written about, but who haven’t had a way to share their story in their own words—like the residents of a Native American Reservation in South Dakota, who told their stories as part of our first partnership, with National Geographic, the Pine Ridge Community Storytelling Project.

We’re interested in the kinds of stories like these, that will continue to resonate in 100 years. We’re not interested in selling data about people’s behavior, or using people’s stories to advertise products. Cowbird is completely ad-free and independent. We offer a premium account, which we call Citizenship, for people who want to support what we do.

The Recollective: Is Cowbird looking for specific kinds of stories or themes?

Screen shot of a story by Lisa Biagiotti

Annie: We welcome all kinds of stories.  I would personally love to see more playful stories, by which I mean pieces that play with the narrative possibilities of combining image, text, and audio. I like illustrationsfound sounds, stories that transform how you see an image, so that you undergo an actual change in perception by listening to them or reading them. Lisa Biagiotti does that in this story. Scott Thrift does that in this one. A lot of people who are starting to work in multimedia haven’t seized these possibilities. Too many people think multimedia means jamming several media in one space. The key is to make media speak to each other, to integrate them.

The Recollective: How can people contribute and in what forms?

Annie: To contribute to Cowbird, all you have to do is Join. Once you create an account, you can tell unlimited stories that can include image, text and audio. As an independent producer, I’m hoping to get a lot more storytellers who are comfortable working with audio. Cowbird is a fantastic place to post short audio pieces, to create a gorgeous portfolio of your work (I’m sorry, but no one is looking at your website) and to share these pieces individually over Facebook and Twitter. We’ve had Cowbird stories picked up by Snap Judgement, Marketplace and Re:Sound. You can tell stories for free. If you’re a Citizen, you can tell these stories using multiple pages, and in your own handwriting font.

The Recollective: What trends have you seen in terms of subject matter?

Annie: What you’d expect from people sharing personal stories, I guess—birth, love, loss, death. I think the most interesting trend, for me, is that there are a number of stories by young people about detaching from technology, stories by 20-somethings interested in creating a new way to live that’s more connected to physical presence, the world outdoors, tangible things. This story kind of sums that up.

Screen shot of a story by Mark OBrien

The Recollective: Have you been surprised by who has contributed stories or by the stories themselves?

Annie: Absolutely surprised. We have people in every corner of the world telling stories on Cowbird, including China, where Cowbird seems to have flown under the radar. And we have stories about virtually anything you can think of — check out our DNA Search and you’ll see what I mean. Of the 50,000 stories added to Cowbird to date, there are of course thousands about family, love, and travel. But we also have 155 stories that mention a bomb, and 28 stories that feature a ladybug.  I’m surprised every time someone chooses to share a secret on Cowbird. And kind of honored, actually.