Thursday, October 25, 2007

The correct steps by Richard Salem

Memories of the Disability Mentoring Day kickoff breakfast at Tavern on the Green that almost faded when the import of the words spoken and the feelings expressed that morning came home to roost. Across the conference table sat a scientist. He recounted the meticulous steps taken in his quest to convert swine waste into fuel. Before revealing his secret to success, hopeful of landing a grant for a prototype, there came a moment of enlightenment.

A year or so ago he had approached our Farm Pilot Project organization to explain his discovery and gather information to submit a funding application. That turned out to be a fateful day. As he explained “I was a bit distracted then. My daughter was in the hospital, having been diagnosed with an embolism at the base of her brain. We were hopeful that surgery would not be necessary. But, it was”. Somewhat hesitant to ask, we pressed on to inquire whether she had experienced any setbacks since.

What we heard was all too familiar. This brave 7 year old feared not, and had started anew as a child with a life-altering disability. Her left side was partially paralyzed, her speech impaired, and she was learning a bit slower than her able-bodied peers. The uphill climb with the school system. The encouragement not to shy away from new friends but, rather, give them a chance to get to know her. And, the development of a mantra so difficult for most of us, and almost impossible for a first grader; be patient with others, be patient with yourself and be patient for those things that are most important to you.

In less than a week of “preaching to a choir of believers” at Tavern on the Green and thanking Mayor Bloomberg for his support, we sat across the table from a parent wondering, hoping and praying that his daughter would be given a chance to experience the American dream.

In short order the scientist, as a father, asked, “What steps do you suggest we take?”

I said, "Do exactly what you have done in coming here today for your business, keep identifying resources and making the connection to access them. And, importantly, remember you are not by yourself; in fact, you are never more than 2 ½ persons away from someone who has or is experiencing the daily challenge of managing a life altering disability."


Richard Salem is the Chairman of Enable America, a national organization endeavoring to increase employment among persons with disabilities and social inclusion, civic engagement through building grass roots and grass top, community, business and vet “connections.” Join us at http://www.enableamerica.org

Tuesday, October 23, 2007

Networking resources paint the picture

On a sunny and cool morning in a town not known for its art, but where it is plentiful, an article in the USA Today, “Disabled Artists Get Broad Strokes of Resilience” got my attention. Its author, Kate Naseef, took us through a brief account of Dennis Francesconi’s extraordinary experience in learning to express his ideas, through painting, after being unexpectedly paralyzed from the neck down.


The piece described in the article, Freedom, America Remembers, will comprise six paintings and stand 6 feet tall. Dennis found a support structure, Mouth and Foot Painting Artists (MFPA), and learned from the experience of others how to best leverage his talent. Its “self help not pity” that motivates the artist, a director accounts. And, to that end, Dennis moved from sitting idle to visiting at veterans’ hospitals and speaking with our wounded war fighters over the course of a few short years.


The story struck me not because of Dennis’ determination and beautiful art alone, but, also because of what is not said.


I work with Enable America and traveling throughout the country allows us to meet persons with disabilities. Without exception, each has a gift, a talent, a love of life and passion to share. Wouldn’t it be interesting to know how Dennis reconnected with his passion and found the MFPA? So many of us struggle so hard, daily, to manage the distractions that naturally flow from managing to live in a world best suited for the able bodied. Little time or energy is left to think of much else or do anything.


Understanding what resources are available to us and connecting with them is often easier said then done. As Enable America’s volunteers work in the field we strive to identify and learn about the depth and variety of programs offered through community based organizations. It is through networking theses “hometown” resources with other local, national and international programs that follow will have resources readily available to assist them in becoming “artists” in their own right.


On leaving Las Vegas, a city short on water and workers, we can only wonder how many of those casino patrons knew of MFPA or other organizations that were at the ready. Please take a moment to help us continue to build a network of networks, for a word of guidance or a helping hand need not be more a phone call or click away. Visit http://www.enableamerica.org for more information.


http://www.usatoday.com/news/nation/2007-10-21-disabled-artists_N.htm


Richard Salem is the Chairman of Enable America, a national organization endeavoring to increase employment among persons with disabilities and social inclusion, civic engagement through building grass roots and grass top, community, business and vet “connections.” Join us at http://www.enableamerica.org

Monday, October 22, 2007

Choosing limitations in Virtual Worlds

The emergence of a “virtual world” through sites such as Second Life are both cause for hope and concern. With so much information and real time access to those in the know, we are all bound to learn a great deal about ourselves and others. But, as President Bush reminded us over a year ago, our nationwide community was built on people building relationships and working with one another in real life (RL). Here is a person with a life-altering disability, for example, likely to find comfort and respite living though an avatar. Or will that “Second Life” provide them with the confidence and courage to recognize that RL is the true hope to fulfilling dreams. A copy of Bob Stein’s article, “Real Hope in a Virtual World,” that appeared in the Washington Post on October 6, 2007, follows.

Real Hope in a Virtual World
Online Identities Leave Limitations Behind

By Rob Stein
Washington Post Staff Writer
Saturday, October 6, 2007

After suffering a devastating stroke four years ago, Susan Brown was left in a wheelchair with little hope of walking again. Today, the 57-year-old Richmond woman has regained use of her legs and has begun to reclaim her life, thanks in part to encouragement she says she gets from an online "virtual world" where she can walk, run and even dance.

Roberto Salvatierra, long imprisoned in his home by his terror over going outdoors, has started venturing outside more after gaining confidence by first tentatively exploring the three-dimensional, interactive world on the Internet.

John Dawley III, who has a form of autism that makes it hard to read social cues, learned how to talk with people more easily by using his computer-generated alter ego to practice with other cyber-personas.

Brown, Salvatierra and Dawley are just a few examples of an increasing number of sick, disabled and troubled people who say virtual worlds are helping them fight their diseases, live with their disabilities and sometimes even begin to recover. Researchers say they are only starting to appreciate the impact of this phenomenon.
"We're at a major technical and social transition with this technology. It has very recently started to become a very big deal, and we haven't by any means digested what the implications are," said William Sims Bainbridge, a social scientist at the National Science Foundation.

In addition to helping individual patients, virtual worlds are being used for a host of other health-related purposes. Medical schools are using them to train doctors. Health departments are using them to test first responders. Researchers are using them to gain insights into how epidemics spread. Health groups are using them to educate the public and raise money.

These increasingly sophisticated online worlds enable people to create rich virtual lives through "avatars" -- identities they can tailor to their desires: Old people become young. Infirm people become vibrant. Paralyzed people become agile.

They walk, run, and even fly and "teleport" around vast realms offering shopping malls, bars, homes, parks and myriad other settings with trees swaying in the wind, fog rolling in and an occasional deer prancing past. They schmooze, flirt and comfort one another using lifelike shrugs, slouches, nods and other gestures while they type instant messages or talk directly through headsets.

Because the full-color, multifaceted nature of the experience offers so much more "emotional bandwidth" than traditional Web sites, e-mail lists and discussion groups, users say the experience can feel astonishingly real. Participants develop close relationships and share intimate details even while, paradoxically, remaining anonymous. Some say they open up in ways they never would in face-to-face encounters in real support groups, therapy sessions, or even with family and close friends in their true lives.

"You're in this imaginary world. People don't know much about who you really are. In that anonymity, in that almost dreamlike state, people express things about themselves they may not otherwise," said John Suler, who studies the psychology of the Internet at Rider University in New Jersey, noting the experience can be especially useful for people with disabilities and those in remote areas where support groups or therapists are far away.

While the emergence of these worlds has generated controversy over the gender-bending, sexually outrageous, profiteering and even violent virtual behavior of some participants, their usefulness for meeting health needs has just begun to draw attention.

"There is a fundamental irony here," said Thomas H. Murray of the Hastings Center, a medical ethics think tank in Garrison, N.Y. "Avatars tend to be young, beautiful, and never age or get sick. But at the same time they can serve as an important way to share information about health."

Murray and others, however, worry that participants may neglect potentially more helpful real-life relationships, or have unrealistic expectations about what virtual worlds can do. Users and health-care providers may be rushing ahead, they say, without validating the usefulness of these worlds or identifying the dangers.
"We've seen the power of the Internet and what it can do," said Albert "Skip" Rizzo, a University of Southern California psychologist who treats traumatized Iraq war veterans with virtual reality. "But as we all know there can also be negative consequences. We really need to step back and think, 'What are the practical and ethical things we can do in the area of health, and what can't we do?' "
The emotional punch of virtual worlds make them fertile breeding grounds for false, misleading and possibly dangerous information. Sick, lonely and psychologically fragile people are particularly vulnerable.

"You have the same risks as elsewhere on the Internet," Murray said. "A lot of the information is garbage. There is always the possibility fraudsters will try to gain people's confidence to peddle phony cures or otherwise do things that are not in people's interests."

Still, an increasing number of major health organizations are trying to take advantage of virtual worlds for public health education, patient support and fundraising.

The Centers for Disease Control and Prevention tested a small "office" in the popular virtual world Second Life "staffed" by Hygeia Philo, an avatar named after the Greek goddess of health, and is now planning a bigger, permanent presence. The American Cancer Society has an elaborate "island" offering virtual lectures by avatar doctors, support group meetings and other activities, such as an annual fundraising marathons that last year raised more than $115,000 in real money. The March of Dimes is building a virtual neonatal intensive-care unit to warn about the dangers of preterm births. The National Library of Medicine is helping fund HealthInfo Island, where users can get reliable medical information.

Meanwhile, scientists are beginning to study virtual worlds for insights into real-life health problems. Two teams analyzed a virtual epidemic of "corrupted blood" that devastated the World of Warfare online game for clues to how people might react during a real pandemic. Another examined a pox that infects avatars in a children's virtual world called Whyville, which the CDC is using to learn better ways to boost pediatric flu vaccination rates in the real world.

Medical schools and health departments have also started using virtual worlds. A University of California psychiatrist developed a virtual psych ward echoing with disembodied voices to help caregivers better understand schizophrenia. Stanford University doctors built virtual operating and emergency rooms to train young doctors. Britain's National Health Service constructed an entire virtual hospital.
So much is happening in virtual worlds that researchers at Harvard Medical School are planning to explore the possibilities at a seminar later this month, and the National Defense University in Washington is hosting a conference next month about ways that federal agencies, including the CDC and the National Institutes of Health, can use the phenomenon.

Individual practitioners, meanwhile, are discovering virtual worlds on their own. After meeting other health-care professionals in Second Life, which with 9 million members is among the largest, Lawrence Whitehurst, a family doctor in Culpeper, Va., founded the Second Life Medical Association.

"I don't diagnose, and I don't treat. What I try to do is provide medical advice and support for people undergoing real-world medical problems," Whitehurst said.
Some therapists, however, have started using virtual worlds to treat patients for a host of problems, in both their real and virtual lives.

"It doesn't work for everybody, but it works for a large majority of patients," said Brenda Wiederhold of the Virtual Reality Medical Center in San Diego, who uses the virtual world DigitalSpace to help patients overcome fear of public speaking and severe shyness.

While Wiederhold said she treats only patients she has counseled in her office first, others are offering therapy to patients they have never met or know little about.

"My clients' problems range from domestic love tangles to complex and difficult real life situations," Elena Mangan, who counsels patients anonymously in Second Life from Britain, wrote in an e-mail.

Such anonymous counseling disturbs many therapists. Internet therapy denies counselors vital clues from subtle body language, affect and tone of voice, they say. And anonymity can carry risks.

"How do you ensure the patient's safety?" said Richard Bedrosian, a clinical psychologist at the University of Massachusetts Medical School. "Suppose they say, 'I'm going to shoot my girlfriend or kill myself.' How do you protect that person? How do you intervene?"

But the biggest users of virtual worlds for health purposes so far appear to be individual patients. Dozens of support groups have formed by and for those with cancer, paralysis, strokes, depression, cerebral palsy, cystic fibrosis, autism and other ailments.

Susan Brown, the stroke victim, said encouragement from other survivors in Dreams, one of several protected areas in Second Life for people with disabilities, and the experience of seeing herself walking again, aided her recovery.

"It helped me visualize," Brown said through her avatar, Marie Hightower, during an interview in a virtual field near a virtual home she built in Dreams, as virtual butterflies flitted past. "I stumbled here just like I stumbled in RL [real life]," she typed.

Salvatierra, the agoraphobic, Dawley, the patient with Asperger syndrome, and others tell similar stories.

"It's kind of like getting your life back again, but even better in some ways," said Kathie Olson, 53, who uses a wheelchair, lives alone and rarely leaves her home near Salt Lake City. In Second Life, she roams about as Kat Klata, a curvy young brunette who runs the Dragon Inn nightclub. "I've met so many people. I can walk. I can dance. I can even fly. Without this I'd just be staring at four walls. Mentally it's helped me so much."

For Stephanie Koslow, 48, of Poughkeepsie, N.Y., her virtual life is helping sustain her as she fights advanced breast cancer.

"It's not real, but it's real in a way," said Koslow, whose avatar is a pink fox named Artistic Fimicoloud. "I might spend an afternoon trying on silly wings and laughing with friends. And laughter heals."

Richard Salem is the Chairman of Enable America, a national organization endeavoring to increase employment among persons with disabilities and social inclusion, civic engagement through building grass roots and grass top, community, business and vet “connections.” Join us at http://www.enableamerica.org

Friday, October 12, 2007

ENABLE AMERICA PROMOTES DISABILITY MENTORING DAY 2007

Friday, October 12, 2007, Tampa, FL - Enable America is proud to be a part of Disability Mentoring Day on October 17, 2007 nationwide.

Disability Mentoring Day offers an opportunity for people with disabilities to get hands-on, real-life employment exposure by bringing together job-seekers with businesses to open doors, provide mentorship and explore career opportunities.

Disability Mentoring Day started as National Disability Mentoring Day in 1999 in the White House, as a program to increase the profile of National Disability Employment Awareness Month, which is celebrated every October.

Enable America was founded in 2002 by attorney Richard Salem in Tampa as a nonprofit organization dedicated to helping people with disabilities find employment and live independently. It is the first organization dedicated solely to reducing unemployment among people with disabilities.

To better understand the issues facing the disability community, Enable America traveled across the nation and conducted Disability Town Hall Meetings in more than 20 cities in 17 states during a three-year period of time. This listening tour gathered together members of the disability community, business people, educators, service providers, civic organizations and political leaders in cities such as New York, Boston, Philadelphia, Atlanta, Tampa, Chicago, San Diego and Los Angeles. Participants identified five key concerns among individuals with disabilities: employment, health care, affordable housing, transportation and benefits.

Enable America is committed to raising awareness of employment-related disability issues on a local and national level.

Good things happen when people have jobs. Visit www.enableamerica.org for more information.