David Y. Lee is the Creative Director for The Waiting List, an online multimedia storytelling project introducing the stories of people waiting for an organ transplant. Lee covered the 2004 Presidential campaign for Time and Newsweek.  In October 2007, the U.S. Department of State contracted Lee as Secretary Condoleezza Rice’s official photographer to document her international legacy during her final fifteen months in office.


VS: Where did the idea for The Waiting List come from? 

Lee: The Waiting List was inspired by the March 22, 2008 Washington Post article by staff writer Rob Stein, ‘A Third of Patients on the Transplant List are not Eligible.’ The reason: because of a shortage of organs, a third of patients on the transplant list are not eligible for an organ if one becomes available because the patient is too sick, not sick enough, or for some other circumstance.

Upon doing some research online, I primarily only found stories about organ donors and recipients. Where were the stories about the over 100,000 people who are currently waiting for an organ transplant, where were the stories about the people who needed our help right now.

When I discovered that only 35% of licensed drivers and ID card holders in America are registered as organ donors, I recognized a tremendous opportunity to use storytelling as a conduit for social change. I realized that if I could make people care by sharing the real stories of real people really waiting for the gift of life, I could inspire individuals to become registered as an organ donor. I could help end this wait, and ultimately save lives.

VS: How have your skill sets helped with The Waiting List?

Lee: “The Waiting List may have been inspired by an article in the newspaper, but it has been supported and encouraged over the past year and a half through the volunteering of time and talent from friends more talented than me in their respective fields, including: Erik Murphy, filmmaker; Christian Domarus, editor; Jody Sugrue, art director, and especially Tony Guglielmi, an interactive multimedia major at Ohio University Scripps College of Visual Communication. Tony has been instrumental in the continued evolution and progress of The Waiting List as the lead designer / multimedia director. His continued hard work and ideas have continued to propel The Waiting List in a forward direction. Until the grant from the Public Welfare Foundation, The Waiting List has been completely self-funded through freelance assignment and personal savings. And yet The Waiting List has come so far, with a tentative hard launch date of April 2010 in celebration of National Donate Life month because of the commitment and dedication of those who believe in the potential impact of this storytelling project.”

VS: What change do you want to affect with The Waiting List? 

Lee: “The Waiting List aims to inspire individuals to register as an organ donor and increase the number of registered organ donors in America. From January to June 2009, there were 7,249 organ donors resulting in 14,191 organ transplants. As of 7:21 September 27, 2009, there were 103,864 people waiting for an organ transplant. Every 12 minutes another name is added to the list; approximately every 18 minutes another person dies waiting.

According to Donate Life America, 90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.

Unlike other medical or social issues like AIDS, cancer, homelessness, a person who is inspired to help often needs to contribute money for future cure research. Not organ donation. Many states now offer online registration. If you’re inspired while reading this article, you can go online right now + register. The Waiting List does not solicit organ donation for one individual; The Waiting List aims to increase the number of organ donors therefore benefiting each mother or father, brother or sister, son or daughter, husband or wife, friend or colleague, currently on the organ transplant waiting list.

The Waiting List recently launched a new campaign – Yes! I am an Organ Donor (www.yesiamanorgandonor.com). By refocusing the attention of organ donation onto those who have already made the decision to say YES, The Waiting List believes we will encourage those who have not yet made this one simple decision by demonstrating other peoples’ commitment to the issue.

If one day you could save the lives of up to eight people, why would you be interested?

Where do you see this project going in the future? What are your goals? How can other visual journalists get involved?

The mission The Waiting List is to inspire individuals to become registered as organ donors by sharing the stories of those waiting, those touched by, and those involved in the transplant process, ultimately saving the lives of the over 100,000 people who are waiting for the gift of life.

How we get there is by creating opportunities in the telling and sharing of stories.

Collaborating together with filmmaker Erik Murphy, I have produced a series of profiles featuring five transplant candidates and one organ donor / recipient. Our “I Choose to Live” story about Celeste Castillo Lee recently won first place in the shorts category at the 2009 Donate Life Hollywood Film Festival.

Daniel Mountcastle rubs his eyes in exhaustion during a heart echo test at the University of Miami hospital. The previous day, he had been taken to the ER after experiencing flu-like symptoms and had gotten little sleep in the past 24 hours. The doctors were concerned his IV may have been infected, so they asked him to come in as a precaution. “Most people would have just slept the bug off,” said Daniel. “My doctor told me he would not have called most people in, but I’m not a ‘normal patient.’ Things like this are just some of the sacrifices I have to make along the way.” (Drew Angerer/The Palm Beach Post)

Ohio University School of Visual Communication 2008 Knight Fellow Jennifer Poggi produced the multimedia story “My Name is Kathy” about Kathy Streber of Rochester, New York; Kathy is waiting to get sick enough so she can be placed on the organ transplant waiting list for a lung. Angie C. Marek, health writer at Smart Money magazine, edited the essay “I Want My Life Back” by Carol Reed of Port Angeles, Washington; Carol intimately detailed her sadness resulting from her need for a lung transplant.

The Waiting List will other connect storytellers across America – filmmakers, writers, photographers, radio journalists, poets, cartoonists, etc. – with transplant candidates in their local community. The Waiting List invites, The Waiting List encourages these storytellers to use their talents to share this story, revealing the sacrifices, the struggles, the strength, the real stories of real people living real lives not unlike yours and mine, except these over 100,000 Americans are waiting for the gift of life. Together, this anthology stories will not only initiate the conversation about organ donation in America, but also inspire individuals to register as an organ donor.

Working with Eli Compton, Executive Director of Transplant Foundation, I have recently identified two transplant candidates in Palm Beach, FL and Poconos Mountains, PA; Palm Beach Post photography intern Drew Angerer has already begun documenting the daily life of Daniel Mountcastle, a husband and father of three who is waiting for a heart transplant. Artist Nathania TenWolde of Seattle, Washington; photographer Claire Houston of Portland, Maine; writer Stephanie Bertoni of Pittsburgh, Pennsylvania; and photographer Michael Kleinfeld of Washington DC are storytellers across America that have expressed interest in producing the story of a transplant candidate in their local community. 

Daniel listens to his daughter Amanda, 10, read a book to him in her bed before she goes to sleep. Despite not being able to be as active as he used to be because of his weak heart, he still tries to be a full time dad and help out with the kids as much as he can. (Drew Angerer/The Palm Beach Post)

The Waiting List is also partnering with Critical Exposure to create a The Waiting List: Children and the Experience of Illness – a photography program at transplant centers across the United States for children directly impacted by the process of waiting for an organ transplant; we received a $12,500 grant from the Public Welfare Foundation to develop a pilot program. I am also tentatively partnering with Life Share of the Carolinas and Donate Life Hollywood to develop a 2010 Donate Life Hollywood Student Film Contest. By creating a contest to encouraging film students to use their talents to share the story of one transplant candidate in their local community, the ultimate goal of the 2010 Donate Life Hollywood Student Film Contest is to create content to be used locally and nationally to advocate and inspire organ donation. After successfully completing a pilot program of both of these projects, I want to replicate them and expand nationally. 

The entire anthology of stories produced for The Waiting List – whether from independent storytellers or from The Waiting List: Children and the Experience of Illness or from future projects – will be featured online at www.thewaitinglist.org. Collaborating with Tony Guglielmi, The Waiting List website will be free to the general public and the foundation for the entire project. In the near future, The Waiting List will provide the opportunity for user generated content, as well as take advantage of the pre-existing social networks of Facebook, YouTube, and Twitter. The Waiting List proposes to be more than just a documentary project; The Waiting List aims to create a community that brings together people from around the country who are all linked together by a similar story, who all are or were affected by the one decision to say YES to organ donation. And from the website, there will be a link to instructions on how to immediately register as an organ donor.

The Waiting List will help end this wait; The Waiting List will help save lives.”

If you are interested in sharing a story or supporting The Waiting List, contact David Lee at info@thewaitinglist.org.