The bedridden Chen, who was an active photojournalist, educator and photographer before being diagnosed with amyotrophic lateral sclerosis (ALS) in the late 1990s, greeted the first lady by eye-typing "Hello, Ms. Chow" at an event to promote a collection of five volumes containing 360 articles compiled from seven books Chen completed between 2001 and 2010. Also known as Lou Gehring's disease, ALS, or motor neuron disease (MND), leads to symptoms such as muscle weakness and stiffness, and eventually leaves the patient unable to move, but patients' minds are usually unaffected. The cause of the disease is unknown and there is no cure. Chen broke the Guinness world record for the most words published using eye-blinking dictation with his fifth novel published in 2007, which contains more than 190,000 Chinese characters. In total, the complete series of five volumes, scheduled to be officially published on Monday, has 350,000 characters, according to the publisher. Chen covers a wide variety of topics in his writing, from painting, drama, and photography to medical care in an optimistic and hopeful tone. He also chronicled his decade-long battle against the disease. The 79-year-old began to "write" books with the help of his wife, blinking his eyes to represent Chinese phonetic symbols. He published his first book that used the technique in 2002. It took him about five to seven days to complete 1,000 characters, according to the event's host Ma Hsi-ping, who was Chen's student when he taught at a journalism and communications college in Taipei. The eye-dictation process was both tiring and time-consuming and took a lot of patience, said Chen's wife Liu Hsueh-hui. However, he insisted on "handing in his work on time" and remained productive for years, she said. Chen is an unusual ALS case because most patients only live for three to five years after the disease attacks, said the writer's doctor Chen Wen-kuei. Although his health condition does not allow him to write by winking anymore, Chen's words will continue to inspire not only those with illnesses but all readers, the publisher said. "I've been lying in bed for over a decade. Living in confinement, my 'land' is indeed narrow, which is something I can do nothing about. What I can do is to expand the borders of my mind to balance the 'narrow land,'" Chen wrote in the book. (By Huang Li-yun and Kendra Lin) | ||||||||||||
Steve Gleason is confined to a wheelchair and has trouble speaking. The former defensive back with the New Orleans Saints football team was diagnosed last year with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. He’s creating a video journal to share with his newborn son, Rivers, in the future.
“What ALS takes away, technology can give back,” said Gleason’s former Saints teammate Scott Fujita, now a linebacker for the Cleveland Browns. Fujita and Gleason described how technology could help ALS patients in the absence of a cure. For instance, new synthetic voice technology is becoming available and eye-tracking technology is being developed to help replace lost motor skills.
Among all the presentations and panels at the Social Innovation Summit, the one by the Team Gleason Foundation moved attendees the most, with audience members wiping tears from their eyes. Fujita and Gleason were part of a panel on how technology can help in the absence of a cure. The summit, hosted this week at the United Nations headquarters in New York City, featured more than 100 speakers and panelists who spoke to a room of about 750 nonprofit, business and corporate social responsibility executives.
“The objective was to tell a complex story of the ecosystem of social innovation,” said Zeev Klein, general partner at Landmark Ventures and founder and producer of the summit. “We had a phenomenal representation of different leaders, and we curated a largely invitation-only audience that can take a message and turn it into action and results.”
Soon-Hong Choi, United Nations assistant secretary-general and chief information technology officer, announced the formation of the Foundation for a Digital United Nations. The foundation’s goal, according to Secretary-General Ban Ki-moon, is “to provide advice and resources that will enable the United Nations to harness the power of information and communications technology.” Partners include Intel Corporation, Microsoft, Landmark Ventures and Global Partnerships Forum.
The Gleason Foundation was among this year’s winners of the Chase Community Giving Award, revealed during the summit. Other winners of the $25,000 grants included: Seattle, Wash.-based Worldreader; Team Rubicon in Inglewood, Calif.; Year Up, Man Up Campaign, She’s The First and Keep A Child Alive, all based in New York, N.Y.; Samasource and Room to Read, both of San Francisco, Calif.; Chicago, Ill.-based Moneythink, and Team Gleason in New Orleans, La.
Panels and presentations included the four cornerstones of social innovation are education and empowerment; sustainable leadership; health care; technology and media.
Laura Arrillaga-Andreessen, founder and chair of the Stanford Center on Philanthropy and Civil Society in Stanford, Calif., described how technology is disrupting philanthropy. “Technology enables us to give in a way that matters more, and has evolved giving from reactive to proactive, sympathetic to strategic, isolated to collaborative,” she said.
A panel, moderated by Schuyler, on how the private sector can use games and social recognition to foster education followed. Panelist Robert J. Torres, senior program officer at the Bill & Melinda Gates Foundation in Seattle, Wash, described using games and social networking recognition (“badges”) to encourage science and technology education. Among the private sector successes the panelists talked about was the game Foldit, a biochemistry game that gamers used to solve a problem scientists have been working on for more than 15 years.
Fifteen-year-old Bianca Louis of New York City spoke of her experience of working with classmates to manage a $50,000 virtual investment as part of the panel “Empowering Women and Girls.” Chicago eighth-grader Avery Winthrop McCall was inspired to get involved with GirlUp, a project of the Washington, D.C.-based United Nations Foundation, after reading “Half The Sky” by Nicholas D. Kristof and Sheryl WuDunn. “I had to make a change, even if it was microscopic,” said McCall.
Sustainability was the focus of another panel, moderated by Jeffrey Hollender, co-founder of Burlington, Vt.’s Seventh Generation. Sustainability and corporate responsibility executives from three of the world’s largest companies (Jeff Seabright of The Coca-Cola Company, Jim Gowen of Verizon and Michael Jacobson of Intel) spoke about their companies’ environmental policies, challenges in implementing sustainability and why businesses must do more to steward the planet. The panelists said they found it difficult to balance a long-term commitment to the environment with shareholders’ short-term expectations of profit. “Businesses are doing a lot but there’s much more to do,” said Seabright.
Biologist J. Craig Venter, one of the first scientists to sequence the human genome and who sequenced and made public his own genome in 2007, stressed the importance of public-private partnerships. While the private sector moves faster and uses money more efficiently than governments, he said, the government has more of a long-term vision, and both sectors are needed for innovation.
Conferences themselves can play a key role in social innovation, communicating and spreading ideas. New York City-based TED Conferences, LLC began as a closed and expensive conference to talk about technology, entertainment and design, but soon moved to a “philosophy of radical openness,” according to Director June Cohen, putting lectures online for free. In contrast, Bruce Gilroy said he made his conference, F50, ultra-exclusive because “sometimes the most radical innovations require privacy to discuss.”
Fostering collaboration among some of the Howard G. Buffett Foundation’s grantees helped farmers and food banks in western Afghanistan and in the United States maximize their yields and their ability to feed the hungry. Howard W. Buffett, chairman of the foundation named for his father and grandson of billionaire Warren Buffett, said, “We view poverty and hunger as a global tax on human potential.”
Director of the White House’s Office of Social Innovation and Civic Participation Jonathan Greenblatt, Chief Digital Officer of Starbucks Coffee Company Adam Brotman and venture capitalist Nick Beim talked about leveraging the skills of veterans and female entrepreneurs to jump-start the American economy. “I think about social innovation, models of human capital and financial capital,” said Greenblatt. “I don’t have those ideas, they’re out there (among the audience members).”