Wednesday, April 30, 2008

Mitch Longley infuses "Desperate Housewives" with some disability themes


Actor Mitch Longley appeared on "Desperate Housewives" April 20 in a fabulous scene that allows for some vicarious payback from disabled people toward all those non-disabled jerks who illegally park in the accessible spots. His character tries to give the Eva Longoria Parker character, Gaby Solis, a good tongue lashing, but of course, she's filled with selfish entitlement so lashes back. Quite funny. See for yourself on YouTube.

Longley also has been a series regular on "Las Vegas" most recently, as well as guest starring on "Weeds," "Shark" and "Bones." He started his career in soap operas like "Another World" and "Port Charles," where he was a series regular.

The American Chronicle did an in-depth profile of him on April 26. He said he thinks things may be getting slightly better for actors with disabilities these days.

"I feel blessed to work consistently and when there are actors such as myself and others who are acting consecutively year after year, we are consistently visible," he says in the article. "Who knows what young person is being inspired by that. Maybe there's a great disabled comic and they're looking for comics. That person could have a top 10 show.

"My hope is that in the next five to 10 years, I would love to see five young performers with disabilities under the age of 20 or 25, who have been around for a while, rise to attention. I'd like to see a young child with a disability who is a fabulous actor come up through the ranks and get killer work so that we can watch a career develop like we do with other actors. I'd also like to see a wider range of actors who are older with disabilities fit into storylines."

Longley says even high-profile documentaries on disability have helped his acting career. After the Oscar-nominated "Murderball," about wheelchair rugby, received nationwide attention, he was cast on Showtime's "Weeds" as a rugby referee and got an audition to play a rugby player on the NBC series "My Name is Earl."

Longley is also the founder of SOWOHO, a non-profit organization committed to helping underprivileged, physically disabled Native Americans and other people around the world. Sowoho projects have included working with the physically disabled communities of the Navajo and White Mountain Apache Nations, in Mexico City and Bosnia-Herzegovina among others.

Nigerian Senate considers anti-discrimination bill for people with disabilities

The Nigerian Senate considered a bill April 23 that would mean that corporate organizations that discriminate against people with disabilities will pay them N500,000 (about $4300 US) in damages, according to allAfrica.com.

The bill stipulates in section (1) that "No person with disability shall be discriminated against on the grounds of his or her disability by any person or institution in any manner or circumstance whatsoever."

The bill says that if a corporate body violates the proposed law, it will pay a minimum of N500,000 damages to the affected person with disability.

Individuals who discriminate against people with disabilities will be required to pay damages of N100,000 (about $860 US) or serve a six month prison sentence or both.

The bill also provides that no person with "disability shall be subjected to prejudices or harmful practices, including those based on sex, age or tradition, in any area of life."

The Discrimination against persons with disabilities (Prohibition) bill was sponsored by Senator Bode Olajumoke, who said he regretted that over the years Nigerians with disabilities have faced discrimination in all areas of life.

Tennessee woman "beats the odds" as one of the oldest people living with Down syndrome

The Tennessean profiled Mary Perry, 73, on April 29, who is one of the oldest people living with Down syndrome. Dr. Karen Summar, a developmental pediatrician at Vanderbilt children's hospital, said, "She beat the odds. It's incredible."

Perry has outlived seven of her eight siblings, even though at the time she was born people with Down syndrome didn't usually live to be teenagers.

Dr. Summar says families are now beginning to think about the implications of children with Down syndrome outliving their parents and siblings. (The Seattle Times also did a recent story about this very issue of aging parents trying to figure out the future for their children with Down syndrome.)

"There are going to be more and more people with Down syndrome living to this ripe old age," she said. "They will outlive their parents. Who will take care of them when their parents pass on? We've got to be thinking of what's ahead."

More than medical advances, Dr. Summar said the care and love Mary Perry gained from being with her family helped her live so long.

"Being raised at home, she had proper nutrition," she said said. "She wasn't in the crowded environment of an institution. Contagious illnesses would sweep through those places."

Perry's nieces and nephews say "she was dearly loved and was treated just like all her other siblings growing up on the farm."

Tuesday, April 29, 2008

Profiles of college students with disabilities


Bethany Garner, who has rheumatoid arthritis of the spine,
attends Richard Stockton College of New Jersey.

Diane D'Amcio, education writer at The Press of Atlantic City (NJ), profiled nine college students with disabilities April 27. The article gives good insight into how students overcome barriers to succeed in college.

It's great to see stories like these that illustrate that with proper accommodations students with disabilities can succeed in college.

The nine students profiled are:


  • Shakur Burton, who has Asperger’s Syndrome, attends the Culinary Institute at Atlantic Cape Community College because he always liked cooking.

  • Marissa Faralli, who has Down syndrome, is at the The College of New Jersey through a two-year-old grant-funded Career and Community Studies program created to see how college programs can accommodate and benefit students with significant disabilities.

  • Peter Bongiovanni has a central auditory processing disorder and is studying history at Richard Stockton College of New Jersey with an eye towards becoming a teacher one day.

  • Vincent Russo, who has cerebral palsy, attends Richard Stockton College of New Jersey as a communications major and plans for a career in sports broadcasting.

  • Bethany Garner has rheumatoid arthritis in her spine and studies speech pathology and audiology at Richard Stockton College of New Jersey. (She's pictured above.)

  • Christopher Nigro, who is deaf, studies journalism at Rowan College and wants to be a sports writer one day.

  • Jacqueline Bavier survived a brain tumor in high school and now attends Richard Stockton College as a freshman communications major.

  • Michael Gardner received a severe head injury when he was hit by a car as a 6-year-old. He recently graduated from Richard Stockton College with a degree in environmental sciences.

  • Anthony Lanzelloti, who is blind and has several other disabilities, attends classes at Atlantic Cape Community College’s Mays Landing campus with the hopes of getting more job skills for his future.

Video game tries to re-focus brains of children with autism

The Seattle Post-Intelligencer health blog reports on an occupational therapy project at the University of Missouri that has developed a video game, which they hope will retrain the brains of children with autism.

The game, Space Race, has the children use brain waves to move rockets forward on a computer screen. The game is designed to help the children enhance their focus and concentration using neurofeedback.

"We are trying to awaken their brains. Often children with autism disconnect and we want to use neurofeedback to teach them how it feels to pay attention and be more alert. We want to teach them to regulate their own brain function," said Guy McCormack, chair of the occupational therapy and occupational science department in the MU School of Health Professions.

"The ultimate goal is to lay down new neural pathways and, hopefully, see changes in focus and attention span, social interaction, improved sleep, and appetite," he says.

U.S. Paralympics team drawing from ranks of disabled veterans


Army Staff Sgt. Josh Olson practices competitive shooting.

The Denver Post reports that a growing number of U.S. Paralympians are disabled veterans. As much as 15 percent of the U.S. Paralympic team will come from the 31,000 veterans disabled by the wars in Iraq and Afghanistan.

Army Staff Sgt. Josh Olson, 28, (pictured above) says he took up competitive shooting after he lost his right leg. He has become a top competitor, and after the Paralympics, he'll train for the 2012 Olympics in London.

Olson said his motivation is seeing the many wounded veterans who are much worse off than he is. "I was fortunate. I was blessed," he said. "I used that as motivation to compete at the Olympic level. That's what gets me to try hard and get out of bed every day."

Another Paralympian drawing much media attention is Army 1st Lt. Melissa Stockwell. She became the war's first female combat amputee four years ago, and now is a top swimmer.

"This month at make-or-break time trials, she stunned coaches, shaving 17 seconds off her personal record in the 400-meter freestyle and ranking her fourth-fastest in the world," according to The Denver Post.

"I've done more with one leg than I ever would have with two," said Stockwell, 28, a University of Colorado graduate, during workouts at the U.S. Olympic Training Center.

ADAPT activists win meeting with HHS Secretary


ADAPT activists who surrounded the U.S. Dept. of Health and Human Services (HHS) building on April 28 have been told they will be able to meet with HHS Secretary Michael Leavitt to work on Medicaid reform. ADAPT members from around the USA have been in Washington, D.C. for events this week to celebrate the disability rights group's 25th anniversary.

ADAPT's goal is for people with disabilities to live in their communities, rather than nursing homes and other institutions, according to its press information.

"People need to be able to choose to live in their own homes, near their families and friends," said Dawn Russell of Texas ADAPT. "Families shouldn't be torn apart by mean-spirited Medicaid policies and regulations that force some people into nursing homes or even to leave their home state in order to get the community-based services and supports they need."

Philo Hall, counselor to Secretary Leavitt, committed to Leavitt meeting with ADAPT within 30 days as he addressed the ADAPT activists, according to press information. Hall began his discussion with the activists by acknowledging that access to the community is definitely a civil right for people with disabilities.

According to ADAPT, Hall admitted that HHS has fallen behind in its former regular communication with ADAPT, and acknowledged that the lack of communication has contributed to HHS making some not-well-thought-out decisions that have hurt the disability community. Renewed communication will begin immediately with another meeting between ADAPT and HHS staff on April 30.

"You know, President Bush's first Executive Order was the New Freedom Initiative, which ordered all federal departments to remove barriers to full community participation for people with disabilities," said Bob Kafka, national ADAPT organizer. "We've been making slow but steady progress until the past couple of years when it seemed like the Medicaid folks forgot the President's order and started re-instituting policies that will push people back into institutions. We're hoping that after today HHS will work with us to reverse the current trend, and assure older and disabled Americans can live full lives in their community."

ADAPT activists surround Health and Human Services building demanding better independent living services for people with disabilities



About 500 ADAPT disability activists from around the USA braved pouring rain to protest at the U.S. Department of Health & Human Services (HHS) in Washington, D.C. April 28. The activists say their action was to "support the thousands of people with disabilities and older Americans who continue to be unnecessarily forced into and kept in nursing homes and other institutions because of the inaction and development of barrier-ridden regulations by HHS and the Bush Administration."

ADAPT's demands of HHS are:

  • Improve the implementation of the Money Follows the Person Demonstration Projects by increasing flexibility states have;
  • IMMEDIATELY eliminate any rules which cause undue burdens regarding case management;
  • Eliminate any rules that discourage small grassroots providers from meeting the needs of the consumers they serve;
  • Eliminate any regulations and interpretations of “spousal impoverishment” and “risk” which promote institutionalization of persons with disabilities;
  • Work with ADAPT on ways to pass the Community Choice Act; and
  • Meet with leaders of ADAPT within 30 days of this date to clarify any of the above and identify other barriers to home and community based services in all 50 states.

Monday, April 28, 2008

VA denies cover up of veteran suicide rates

The Associated Press reported from a San Francisco trial April 25 that a top-ranking Department of Veterans Affairs (VA) official defends the department's treatment of disabled veterans and said there's not an agency cover up of the number of veterans committing suicide.

Dr. Michael Kussman, a VA undersecretary for health, testified at the trial on whether the VA is providing adequate mental health care and other medical services to millions of veterans.

Two veterans groups are suing the VA asking the department to process applications more quickly and deliver better mental health care to help prevent suicides and treat post-traumatic stress disorder.

"The groups contend that veteran suicides are rising at alarming rates in large part because of VA failures," The AP reported. "In court, plaintiffs' lawyer Arturo Gonzalez clashed Thursday with Kussman over how to compile and report the suicide rates.

"For instance, VA Secretary James Peake told Congress in a Feb. 5 letter that 144 combat veterans of Iraq and Afghanistan committed suicide between October 2001 and December 2005. But Gonzalez produced internal VA e-mails that contended that 18 veterans a day were committing suicide. Kussman countered that the figure, provided by the Centers for Disease Control and Prevention, included all 26 million veterans in the country, including aging Vietnam veterans who are reporting an increased number of health problems."

"Praying with Lior" receives good coverage in Philly, Boston


Lior Liebling autographs his movie posters.

"Praying with Lior," the documentary that follows Lior Liebling, a young man with Down syndrome, as he prepares for his Bar Mitzvah, is garnering publicity and praise as it shows on the East Coast.

The Boston Globe wrote a positive review of the film, which is now showing in the Boston area. "This is the latest feel-good documentary to turn a spotlight on a much-misunderstood disorder, and per usual it demands that you unleash your sense of humor and table your pity. Fortunately for (director Ilana) Trachtman, the lead subject, Lior Liebling, makes that unbelievably easy for audiences to do.

"Even in the earliest home movies chronicling his struggles with - and triumphs despite - Down syndrome, Lior is a high-functioning charmer. He smiles continuously, loves unconditionally, and says the darnedest things. But the breadth and impact of his spirit is conveyed most fully in more recent footage compiled when Trachtman follows him around his home city of Philadelphia interviewing family, friends, and Lior himself. As one classmate puts it: Everyone gets tested in life; Down syndrome is Lior's test."

And from his hometown of Philly, The Jewish Exponent checks in with Lior to see how fame is treating him. "Praying with Lior" direcotor Ilana Trachtman reports that Lior recently attended junior prom even though he is a sophomore because his date was a junior. On his 17th birthday Lior led services at Mishkan Shalom.

Lior's only change? "He's now regularly asked for autographs," Trachtman says.

"Praying with Lior" will be screening around the country for the rest of the spring and summer. You can find screenings near you here.

Florida House considers bill that would increase insurance availability to children with autism

A new program to give more insurance availability and other services for children with autism and other developmental disabilities made it through its first Florida House committee April 22, according to Florida Today.

"The bill proposes removing caps on income-based Florida's Healthy Kids insurance program so all families can buy insurance with coverage for children with disabilities, currently often not available at any price," Florida Today reports. "It also expands benefits to include speech, occupational and other therapies, and changes age limits so younger children can take advantage of such therapy. Private companies are being asked to negotiate coverage packages by 2011-12. They would be required to provide coverage if the negotiations don't work."

The bill's passage also would mean the development of voluntary pre-kindergarten programs for children with developmental disabilities starting in the 2011-12 school year.

The Palm Beach Post reported that the bill could lead to higher costs and possible exclusion of children without autism from the Healthy Kids program.

"Allowing all kids with autism to enroll in Healthy Kids also would force higher premiums for everyone in the program," officials said in the Post. "For every autistic child added to the program, 25 slots would be used up because the average health costs for autistic youngsters are 25 times higher than for other children."

"There's a possibility that if there's a requirement to cover autistic kids, then at the end of the day ... we'll have to reduce the number of children in the program," said state Chief Financial Officer Alex Sink, who chairs Healthy Kids, said in the Post.

New Zealand town considers better urban design for people with disabilities

A forum before the Manukau City Council in New Zealand allowed for better understanding of the needs of people with disabilities in city planning and development projects, the New Zealand Herald reported April 25.

A Manukau resident, who was paralyzed in an accident in 1998, advocated for urban designs that better cater to disabled people.

"It's little things like just having a flush doorway and not a lip - just a flat, smooth surface for the wheelchair to go over," said Tanu Toso, the chairperson for Pasifika Prevention Aukilana. "Urban design right now is based around cars. Roads are wider, making the footpaths narrower, meaning there's less space for wheelchairs, mobility scooters and even parents walking their kids to school."

Toso said the forum allows policy-makers to hear first-hand from disabled people affected by their policies, and he added that improved access for disabled people is still needed in the wider Auckland region.

John Hockenberry back on radio at WNYC


Broadcast journalist John Hockenberry, right, joins Adaora Udoji, formerly of CNN, in their new live radio show, The Takeaway, which began on WNYC April 28. The show is funded from a $2 million Knight Foundation grant and partners with Public Radio International, The New York Times, the BBC World Service and the Boston public station WGBH.

Maxie Jackson, WNYC’s senior director for program development, said in The New York Times that the live show will have a different tone that he hopes will make it more multicultural than usual public radio fare -- with “voices, perspectives, contributors and stories that are relevant to a wide swath of people.” Its tone, he said, “has to be more compelling, with more verve.”

The New York Times described the new show in its April 27 article, and I was pleased to see that no mention was made of John Hockenberry being a wheelchair user. (I do mention such things because of the focus of this blog.) But it's great to see a major newspaper NOT mention a disability when it has no relevance to a story.

I wrote about "The Takeaway" show April 8.

Friday, April 25, 2008

Veteran to play in Heroes Cup April 26


The New York Times profiled lacrosse player and disabled veteran John Fernandez April 23. Fernandez lost both of his lower legs in a bomb attack while serving in Iraq in 2003. The West Point graduate, who captained the lacrosse team there, will join other Army alumni to play Navy alumni in the Heroes Cup at Madison Square Garden April 26.

Although he says, “it’s hard to turn without ankles,” he has returned to most of his athletic activities with his prosthetic legs. “I do everything I used to do. I ski, I hunt, I fish, I snowboard.”

Some of the proceeds from the Heroes Cup will go to the Wounded Warrior Project, an association of injured Iraq and Afghanistan veterans. Fernandez serves as its alumni director.

Thursday, April 24, 2008

Parents work on master's degrees to help their children with autism

The New York Times Education Life section focused on an Applied Behavior Analysis (A.B.A.) graduate program at Caldwell College in New Jersey, which is drawing parents of kids with autism to the program who want to gain the skills to help their children.

"Caldwell’s graduate program is the only one of its kind in New Jersey, a state known for pioneering autism education and advocacy," according to The New York Times. "New Jersey is home to the Princeton Child Development Institute and its many offspring, including a host of small private schools founded by parents committed to A.B.A. techniques. The state is thus a magnet for families from out of state looking for the best services for their children."

The article says that most of the parents in the program are focusing on the specific educational needs of kids with autism similar to their own.

"Martine Torriero, who has a 15-year-old son, hopes to run recreational and cultural programs for autistic teenagers," The NY Times reported." Delia O’Mahony, whose son is now 22, is interested in adult services, since children like hers 'fall off a cliff' when they are past school age.

"Diana Kelly, who used all her skills as a lawyer to get her two sons properly diagnosed and treated — each has a different variation of autism spectrum disorder — does private consulting for families and schools as she works toward her master’s degree. She hopes Caldwell will add a doctoral program, too."

Miss Landmine Survivor beauty pageant draws controversy




The Guardian reports that after the first successful Miss Landmine competition in Angola, the creators plan to take the pageant to Cambodia in 2009.

"Both countries rank alongside Afghanistan as among the world's most heavily mined places, with a correspondingly high number of victims who suffered the terrible effects of the weapons left festering after years of conflict," according to The Guardian.

"It was the plight of the victims that prompted a Norwegian theatre and film director, Morten Traavik, to come up with the challenging - some would say tasteless - contest to spotlight the ongoing tragedy," The Guardian reports.

Augusta Urica, 31, and Maria Restino Manuel, 26, were joint winners who were crowned Miss Landmine 2008. They won a state-of-the-art prosthetic limb to replace a leg lost to a landmine.

More than 80,000 people in Angola have been disabled by landmines after a 20-year civil war.

Kek Galabru, the president of the Phnom Penh human rights group Licadho, doesn't think Cambodia will accept this kind of beauty pageant that she says "shines a light on tragedy."

"No doubt awareness is important," she said. "But for me this is using the victims. For them it is still very painful. But they're saying 'look at me, I'm still beautiful, even though I've lost my leg.' We don't need to raise awareness in this questionable way.

"I'm sure there'll be a lot of resistance from the Cambodian people. I can hear it now: 'What? A contest of the suffering?'"

"Little People, Big World" family on Oprah April 24


The Roloff family, who stars in the TLC reality show, "Little People, Big World," will appear on the Oprah show April 24. This is great news for the Roloffs, because their 2-year-old show really gives America good insight into the lives of little people and their family, basically showing the audience that they experience the same ups and downs as other families. With Oprah's high show ratings (the show averages about 8 million viewers per original airing), more people may begin to tune in to the TLC show, which airs on Monday nights.

Wednesday, April 23, 2008

Pain inspires art


Two Californians who have chronic pain have developed an online art exhibit so anyone who is disabled from chronic pain can post their artistic expression of the experience.

The NY Times Health blog wrote about the efforts of Sacramento resident Mark Collen, 47, who has chronic back pain, and San Francisco college student James Gregory, 21, who has chronic pain due to an automobile accident, to create the online Pain Exhibit.

Collen says he had a new doctor and struggled to communicate his pain to him. Although he's not a trained artist, he created a piece of artwork to express his pain to the new doctor.

“It was only when I started doing art about pain, and physicians saw the art, that they understood what I was going through,” Collen said. “Words are limiting, but art elicits an emotional response.'’

So Collen wrote to pain doctors around the world asking for examples of art from pain patients. He then joined with Gregory to create the Pain Exhibit, featuring the art of people in chronic pain.

According to Collin, the Pain Exhibit artwork is being used by health educators around the world, including physicians, nurses, pharmacologists, psychologists, social workers, art therapists and chaplains, to educate others about chronic pain.

The exhibit features several specific galleries on themes such as suffering, portraits of pain, pain visualized, "but you look so normal," God and religion, isolation and imprisonment, unconditional love and hope and transformation.

ESPN Magazine features Oscar Pistorius


Oscar Pistorius

ESPN Magazine's April 21 cover story features the Oscar Pistorius case. A double-amputee sprinter, he appealed a decision in February that barred him from competing to qualify for the Olympic Games.

Pistorius appealed before the Court of Arbitration for Sport in Switzerland in February. In January, the International Association of Athletics Federations (IAAF), track and field’s governing body, "ruled that his carbon fiber prosthetic blades gave him an unfair advantage." According to a scientific study in November, Pistorius' prosthetics are reportedly "more efficient than a human ankle . . . can return energy in maximum speed sprinting and that Pistorius was able to keep pace with certain able-bodied sprinters while expending about 25 percent less energy."

Pistorius' lawyer says the tests are flawed and inadequate. His case will be reviewed before the IAAF on April 29-30.

Pistorius talked about his case with several media outlets April 15, ESPN, "Nightline" and "Good Morning America," according to disaboom.

LA Times: John McCain receives disability pension


Republican presidential candidate John McCain's staff revealed April 21 that he receives a "disability pension" from the Navy. McCain released his tax return for 2007 on April 18 and
"separately disclosed that he received a pension of $58,358 that was not listed as income on his return," the Los Angeles Times reports.

McCain's staff said that McCain "was retired as disabled because of his limited body movements due to injuries as a POW."

McCain campaign strategist Mark Salter told the Los Angeles Times April 21 that McCain is technically disabled. "Tortured for his country -- that is how he acquired his disability," Salter said.

"McCain shattered his knee and broke both arms when he was shot down over North Vietnam in 1967," according to the Times story. "McCain spent 5 1/2 years as a prisoner of war in Hanoi. After he was released in 1973, he returned home on crutches and began a painful physical rehabilitation."

disTHIS! film series celebrates second anniversary May 7


British actor Mat Fraser ("Born Freak," "Everytime You Look At Me") and comedian Liz Carr ("Abnormally Funny People"), hosts of the BBC's politically incorrect, award-winning OUCH! podcast, will be in person at the disTHIS! May 7 film screening to help celebrate the film series' 2nd anniversary.

Films screened May 7 will be: "The Art of Negative Thinking," in which "director Bård Breien spoofs the power of positive thinking in this award-winning Norwegian black comedy, which picks fun at both tragic and heroic disability stereotypes;" "Stubborn and Spite," where "mayhem ensues when two disabled drivers fight over who should get the last disabled spot;" and "Celebrity Shotgun," by Mat Fraser in his directorial debut, which focuses on "revenge against cheating husband Tom Harry at the hands of his wife and secretary." "Celebrity Shotgun" is created and performed by artists with learning disabilities.

The screenings are held 6:30 to 10 p.m. at DCTV @ The Firehouse, 3rd Floor Screening Room 87, Lafayette Street (between Walker & White) in New York City.

Disability doesn't usually cause unhappiness

Harvard researcher Daniel Gilbert explained his research on happiness in The New York Times Science Section April 22, and confirmed what people in the disability community have long known -- human beings are resilient and cope quite well with life events that they think will be devastating.

"The truth is, bad things don’t affect us as profoundly as we expect them to," Gilbert says. "That’s true of good things, too. We adapt very quickly to either. So the good news is that going blind is not going to make you as unhappy as you think it will. The bad news is that winning the lottery will not make you as happy as you expect."

Humans have inaccurate and flawed ideas about how devastated they will be when something bad happens to them, he said.

"Few of us can accurately gauge how we will feel tomorrow or next week," he explains. "People have remarkable talent for finding ways to soften the impact of negative events. Thus they mistakenly expect such blows to be much more devastating than they turn out to be."

Gilbert’s book Stumbling on Happiness was a New York Times paperback best seller for 23 weeks and won the 2007 Royal Society Prize for Science Books.

Walt Whitman documentary includes focus on modern disabled soldiers


Wounded Civil War soldiers, 1865.

In an interesting inclusion, the PBS "American Experience" documentary on poet Walt Whitman last week tied his story to modern New York City and current disabled soldiers.

As the film discussed how Whitman came to write Leaves of Grass, it focused on the diverse people in NY City who inspired Whitman and how that diversity continues to enrich the city today.

During the Civil War, Whitman goes to Washington, D.C., after his brother, George, who was one of the first to enlist in the Union Army, is hurt, and decides he can help the war effort by ministering to wounded soldiers.

"Whitman began making the rounds of the hospitals offering modest gifts of fruit, candy, books, pencils and paper to the hospitalized soldiers. More importantly, he lent an ear to the young men who needed a friend," according to the documentary. "Through his ministrations of wounded soldiers, he found purpose and a new inspiration for his art."

The documentary intermingled pictures of Civil War wounded soldiers with modern-day soldiers dealing with amputations and other serious war wounds. It was an appropriate touch, given the growing numbers of disabled veterans, to tie history and modernity together in this riveting documentary that truly celebrated Walt Whitman. Here's a poem Whitman wrote after his time with the soldiers:

"The hurt and the wounded I pacify with soothing hand,
I sit by the restless all the dark night — some are so young;
Some suffer so much — I recall the experience sweet and sad;
(Many a soldier's loving arms about this neck have cross'd and rested,
Many a soldier's kiss dwells on these bearded lips.)"
— Walt Whitman, "The Dresser" (1867, later titled "The Wound-Dresser")

Tuesday, April 22, 2008

Marlee Matlin leaves "Dancing with the Stars"


Marlee Matlin was voted off ABC's "Dancing with the Stars" April 22. Kudos to Marlee for doing a great job and making it that far. At least now she doesn't have to wear the scary sequins and caked-on eyeshadow anymore. :-(

"Cooking Without Looking" funding shaky for third season


Host Annette Watkins, Host Allen Preston,
Creator/Executive Producer Ren'ee Rentmeester,
and Host Celia Chacon

The Associated Press reports that the Florida PBS cooking show for people who are blind or visually impaired, "Cooking Without Looking," may have an uncertain future because funding shortfalls have put the third season on hold.

"Budget cuts at Florida’s Division of Blind Services have left the program scrambling for new sponsors," The AP reports, "but show creator and executive producer Ren’ee Rentmeester remains upbeat."

“When you’re doing something that’s new and innovative, that’s just part of the game,” she says.

Longtime NPR television critic David Bianculli says in The AP story that “Cooking Without Looking” is groundbreaking. It's unique to have a television program so specifically tailored to those with vision loss.

“If television is supposed to save us, not through broadcasting but through narrowcasting, this is exactly what they’re talking about it,” he says. “Focusing on such a narrowly targeted group and servicing them is a good thing.”

Rentmeester hit on the idea for the show after working 10 years in television journalism, where she did community outreach with nonprofits for the Miami CBS affiliate. From that work, Rentmeester — who isn’t visually impaired — wanted to create an organization to help people across a broad demographic range and blindness fit that goal.

While looking at Internet discussions within visually impaired communities, she noticed lots of talk about cooking. “That would be a cool idea for a TV show,” Rentmeester recalled thinking.

The show has three hosts and a rotating lineup of guest cooks — all with some level of vision loss — who carefully narrate everything they are doing in the kitchen, as well as giving hints to make preparation go smoothly.

For example, host Celia Chacon "carefully feels her ingredients as she dices them, then arranges them in the order she’ll use them," The AP story says. "At the stove, she listens to the sizzle to make sure the heat is right.

"To help the audience follow the featured recipes, steps are narrated, and often come with blindness-specific tips or techniques, such as listening for bubbles popping to know the yeast is working, or putting dark ingredients on light-colored plates because the contrast makes them easier to see for those who are partially sighted. And at the end of each segment, the recipe is shown on the screen and read aloud."

DNA testing reveals birth defects among children in polygamist sect



Time magazine reports that two Fundamentalist Church of the Latter Day Saints of Jesus Christ (FLDS) families, who are ancestors of many of the polygamist sect members in Texas, have handed down a recessive gene for a severe form of mental retardation called Fumarase Deficiency.

The birth defect has increased within the FLDS community since 1990, when it was first identified by a now retired pediatric neurologist, after an FLDS member in Arizona brought her severely mentally disabled son to see him. The child also had a sister with cerebral palsy, as well as Fumarase Deficiency syndrome.

"The birth defect — an enzyme deficiency — causes severe mental retardation, epilepsy and disfigurement of features," Time reports. "The retardation is in the severe range — an IQ around 25," the pediatric neurologist Dr. Theodore Tarby says. "Afflicted children are missing portions of their brain, often cannot sit or stand, and suffer grand mal seizures and encephalitis. Language skills are nonexistent or minimal. "

Until 1990, Tarby says he knew of only 13 cases of Fumarase Deficiency worldwide, according to Time. The intermarriage within the FLDS community, in which many first cousins marry, causes the high incidence of the birth defect.

"If you have two parents with the gene," Tarby says, "you are going to have a one-in-four chance of having a child afflicted with it."

Texas officials will not release any medical information about the 416 children in their custody, Time said, but one mother, identified only as Sally on CNN's "Larry King Live," described her son as "handicapped" and needing hourly care.

"One of the mothers raised concerns about her child who had Down Syndrome," Texas Department of Family and Protective Services (TDFPS) spokesman Greg Cunningham told Time in an e-mail. "That child has had a medical evaluation and has had one-on-one care."

"The FLDS community, by and large, rejects the idea that Fumarase Deficiency is caused by genes," according to Dr. Tarby. "They have their mythology about the condition. They think it's something in the water, or something in the air."

Alaska governor gives birth to son with Down syndrome


Gov. Sarah Palin of Alaska with husband, Todd,
and baby, Trig.

The Associated Press and the Anchorage Daily News report that Gov. Sarah Palin of Alaska has confirmed that her newborn son has Down syndrome. I really like this picture from the Anchorage Daily News -- parents beaming at their newborn with Down syndrome, just like any other parents would. It defies those who would interpret this event as a "tragedy."

Trig Paxson Van Palin arrived a month early on April 18 after Gov. Palin returned to Alaska from an energy conference in Texas. "A statement she issued following the birth said she knew her son would face special challenges but wasn't specific," The AP reported. Palin, 44, and her husband, Todd, have three daughters and one other son, ages 18 to 7.

"Testing during early pregnancy revealed the condition," according to the Anchorage Daily News. "Palin said she was sad at first but they now feel blessed that God chose them. The couple has lots of family support, she said."

And baby Trig will help run Alaska right away, because Palin told the Anchorage Daily News that she doesn't plan to take maternity leave but to bring Trig to work. But she made it clear that she will take time off whenever is needed for Trig's medical care or physical therapy, etc.

NY Times checks in on blind governor



The New York Times updated its readers on April 21 on how David Paterson is faring as the state's first blind governor. I'm sure the newspaper would check in with any new governor after the Spitzer scandal, but the article focuses primarily on Paterson's blindness and how he functions as governor. It seems to me that there are more important issues at hand, and that dozens of stories were done in March about how Paterson lives his daily life as a blind man.

The story seems particularly interested in how staff members help guide him when he is walking (see picture above). The article states: "He travels with a phalanx of assistants, typically a half-dozen, including aides and bodyguards, who act as a buffer zone around him in large public settings, from hotel ballrooms to school classrooms. The bodyguards gently steer him, often with a hand on his back or arm, toward an exit or into a waiting vehicle."

Surely there are more important things happening in NY politics than how the governor crosses a room?

Thankfully, Gov. Paterson seems to take all this focus on his blindness in stride and uses his platform to educate others when necessary.

"Although Mr. Paterson often says he does not want people to go out of their way for him, he says society should recognize that he and other blind people cannot do everything on their own," according to the article.

"As one of his first acts as governor, he added instructions to his official state Web site on how to enlarge the type on the screen. 'It’s just being more sensitive to people who feel that government and institutions ignore them,' he said."

Monday, April 21, 2008

People magazine features Marlee Matlin


In the April 28 People magazine, Marlee Matlin talks about juggling life with four kids and competing on "Dancing with the Stars."

Deaf community abuzz with varied reviews of "Sweet Nothing in My Ear'


Marlee Matlin in "Sweet Nothing in My Ear."

The Hallmark Hall of Fame CBS movie, "Sweet Nothing in My Ear," drew varied reviews around the blogosphere after its airing April 20. The TV movie was based on Stephen Sachs' play about parents dealing with their young son's hearing loss and the possibility of a cochlear implant for him. It starred hearing actor Jeff Daniels and Academy Award-winning deaf actress Marlee Matlin, as well as a number of other talented deaf actors.

It delved into many topics about deaf culture that one doesn't usually see on TV, so that was a positive aspect of the movie. But I found the technique it used to let hearing viewers know what the deaf characters were saying very annoying. All the deaf characters (when they weren't in the courtroom scene where there were interpreters) were given voice-overs, which I found jarring, especially the voice for Marlee Matlin. As a Matlin fan, I have heard her deaf accent many times so I (and many others who have seen her performances) know what her voice sounds like. I realize she was supposed to play a deaf person who doesn't speak, but I couldn't associate the voice used for her as her because everytime I heard it I knew it wasn't her.

Also, when she does use her long-time interpreter, Jack Jason, a male voice is heard. So in my mind, Marlee Matlin has either her own voice or a male interpreter voice. I know it may seem like a small detail, but the voice-overs really damaged the movie's potential impact, IMHO. Was there a reason that subtitles couldn't be used instead?

And I felt Marlee Matlin's passionate acting style was more subdued in this movie. According to the RLMDeaf Blog's reporting of a Washington Post story, the director of the "Sweet Nothing in My Ear" required that Matlin only use American Sign Language (ASL) and never move her lips while signing. "Director Joseph Sargent repeatedly instructed Actress Marlee Matlin not to open her lips while signing to capture the accurate and pure ASL use for this telemovie" according to RLMDeaf.

As I have said many times, I am a big fan of Marlee Matlin, but her performance in "Sweet Nothing" didn't seem to have that usual sizzle. Probably because she was forced to communicate is way that was not natural to her. Or maybe I just missed her speaking.

Here's a roundup of some of the reviews:

Jim's Deep Thought Blog on how the movie represented the tension between old deaf culture and new deaf culture.

Banjo's World Blog on how the movie "made every single character appear human, simple and plain. They don't make anyone out to be a heartless monster. The movie itself is neither supportive nor against cochlear implants."

Allison Kaftan of the DeafDC.com Blog said she liked the movie because she felt the cochlear implant issue "is about the deaf community’s struggle for self-recognition, and about the hearing community’s campaign to maintain its systemic marginalizing practices without necessarily appearing ignorant. Today’s heated discussions about people who support, choose, or live with a cochlear implant is a continuation of that tradition of anxiety over the deaf community’s continued lack of integration/recognition. That’s why I like this movie so much. Though the cochlear implant is almost a character of its own, the film ends on a happy/sappy note as Laura and Dan realize that what’s best for Adam is for them to arrive at decisions like this together, rather than basing it on their own individual selfish desires."

Paotie's Green Couch Blog says children should be left out of deaf politics.

Candy's Blog felt the movie was much ado about nothing, because at the end of the movie, no decision is made about whether the child will get a cochlear implant or not.

And an ignorant "deafness is a handicap" hearing perspective from Huffington Post writer, Michael Russnow, who thinks not giving someone a cochlear implant is "political correctness gone too far."

Sunday, April 20, 2008

Ageism, ableism directed toward Sen. Byrd?




April 17 The New York Times did a story about 90-year-old Sen. Robert C. Byrd, D-W.Va., headlined, "How Do You Tell the Oldest Senator to Slow Down? Very Carefully." The story contains several negative assumptions about someone who uses mobility equipment such as a wheelchair or walker. And I don't like the picture used either.

First, the picture (shown above). I know the photographer is trying to be artsy with the negative space, etc., but it presents Sen. Byrd as an isolated figure. I think it implies he should be hidden behind closed doors. It seemingly invites the viewer to enter the photo and shut the door so the senator won't have to be seen by the world. I know, "eye of the beholder," but the photo could have shown Sen. Byrd tackling his day's work, which apparently he does every day there is a vote in the U.S. Senate.

The story lists the senator's past medical history and mobility issues, and it's clear that the reason for the story is that some Democratic leaders want to ease Sen. Byrd out. The tone of the article at the beginning seems to agree with these Democratic leaders, when it emphasizes details like this: "He uses double canes, a walker or, occasionally, a wheelchair to get around, and is always surrounded by loyal aides. Despite his infirmities, he made campaign appearances recently in West Virginia for a House candidate and has physical therapy at home."

But thankfully the reporter, Carl Hulse, allows Sen. Byrd to prove some of these negative assumptions imbeded in the story wrong.

"Wednesday’s hearing loomed as the opportunity for a show of strength by Mr. Byrd. Or at least as much strength as a 90-year-old with health issues can summon. All eyes were on Mr. Byrd, who as president pro tempore of the Senate is third in line to the presidency, to demonstrate he could still take charge.

"He appeared to succeed. Though he read most of his statements from pages filled with extra-large type while being closely attended by staff members, he frequently ad-libbed to emphasize his deep opposition to the war: 'Dead, dead, dead,' he intoned of the more than 4,000 killed while fulminating about the conflict’s cost as a 'whopping, whopping $600 billion, spelled with a ‘b.’ ”

The extra-large type of his speech is relevant how? Most people I know over 40 kick up the type size when they plan to give a talk or lecture.

I am glad the the reporter showed in detail how Sen. Byrd proved his competence to his fellow senators. But I felt the story still ended by leaving lingering questions about older people who may have disabilities.

"While Mr. Byrd may have quieted talk of replacing him for now, Democratic leaders will be watching the situation and his health, and it is possible that Mr. Byrd could face new pressure to step aside if he falters.

"But he is hardly the first senator to cope with infirmity in an institution where the average age is nearly 63."

I think Carl Hulse needs to read up on the topic of aging -- 63 is no longer "old." Lloyd Garver of CBS News wrote last year that "today, the average age for someone moving into a nursing home is 81. In the 1950's, it was 65. In a 2005 Merrill Lynch survey of people between the ages of 40 and 59, 76 percent said they planned to retire when they were about 64 — and then start an entirely new career. Men and women in their 70s and 80s race in almost every marathon. Seniors teach and take classes, travel, and just seem to live fuller lives than ever before."

But they do have to face the ageism so prevalent in America. Psychologists even say that ageism might affect lifespan.

"Not only are negative stereotypes hurtful to older people, but they may even shorten their lives," psychologist Becca Levy found, according to the APA Monitor. "In her study of people 50 years and older, those with more positive self-perceptions of aging lived 7.5 years longer than those with negative self-perceptions of aging."

"On the other hand, people's positive beliefs about and attitudes toward the elderly appear to boost their mental health. Levy has found that older adults exposed to positive stereotypes have significantly better memory and balance, whereas negative self-perceptions contributed to worse memory and feelings of worthlessness."

"Age stereotypes are often internalized at a young age--long before they are even relevant to people," notes Levy, "adding that even by the age of four, children are familiar with age stereotypes, which are reinforced over their lifetimes."

All this to say, the media need to be careful about how they portray older people like Sen. Byrd.

Globe profiles fastest blind runners in America as they prepare for Boston Marathon

Adrian Broca, 31, the fastest blind marathoner in the USA, will defend his title April 21 in the Boston Marathon's visually impaired division, The Boston Globe reported April 20. He will compete against 19 blind or visually impaired runners, 15 men and 4 women.

Broca will be allowed four guides to assist him through the race. He also hopes to finish within 2 hours and 46 minutes to meet the qualifying standard for the 2008 Beijing Paralympics.

"When I run with my legs really turning, I feel alive," Broca said. "It's liberating. Once I hear the gun go off, I forget about being visually impaired and feel like any other runner out there who has one goal in mind."

The Globe reports that "Broca's toughest competition will come from Kurt Fiene, the second-fastest visually impaired US marathoner, with a personal best of 2:52:55. Like Broca, Fiene knows the Boston Marathon is his last, best opportunity to qualify for the Paralympics."

It's a good in-depth story on these talented athletes, but I think it would have been a better story without the several pointed references, including the headline ("Chasing glory they can feel, not see"), to their inability to see where they are running.

Bette Midler revisits disabled character in Vegas show


Bette Midler as Delores Delago

Delores Delago, a staple in past Bette Midler shows, reappears in her new long-running Las Vegas show, "The Showgirl Must Go On." The Delago character is a mermaid who uses a power wheelchair, and participates in a chorus line of wheelchair-using mermaids.

Here's a YouTube clip of Delores Delago singing "New York, New York." The One Heck of a Guy blog also has a clip of another Delago "Fishtails over Broadway" bit, in which the mermaids dance with and in wheelchairs and sing "One" from "A Chorus Line." Midler as Delago descends the stairs in a chair lift, as the other mermaids sing a specific Delores Delago tribute song using the music from "Hello Dolly."

Being a complete sucker for Broadway musicals, I think it's a fun performance, but would love to hear what you think. Please send me some comments.

Midler received some great coverage of her new Vegas show in March, with a positive review of the show in The New York Times and a profile in New York magazine.

Saturday, April 19, 2008

Scottish law enforcement apologizes for charging teen with Down syndrome for assault


Jamie Bauld with his parents.

The Scottish prosecution office has formally apologized for charging Jamie Bauld, a young man with Down syndrome, for racism and assault. STV reported April 17 that the case against Jamie would not go to court.

More than seven months ago, Jamie, 19, was involved in a minor incident with an Asian girl with an intellectual disability at the special needs department of Motherwell College, where they are both students. The college reprimanded them, but a notice appeared in the local newspaper seeking witnesses to a "racial assault" at the college, so police questioned and then charged Jamie several days later.

The Daily Mail described the incident this way: "girl irritated boy, boy pushed girl and told her to go away. Then, girl responded by telling her teacher."

"In Scotland the age of criminal responsibility is eight years old," according to STV. "Physically, Jamie Bauld is 19, but mentally, it is difficult to say. He can read and use a computer but he cannot tie his shoelaces or go out on his own. That did not stop the police treating him as an adult and charging him with assault."

Jamie's parents, Jim and Fiona, told the BBC that Jamie can't understand a concept like racism, and that Jamie thanked police officers who told him he could be charged with racial assault.

"I don't think the police have enough training to cope with people with learning difficulties," Fiona Bauld told the BBC."If they have to come over and speak to someone they should bring along somebody who can deal with people with learning difficulties."

Jim Bauld added: "They were addressing Jamie like he was over 18, but I told them he couldn't deal with questioning like that. He'll more or less say what you want him to say, simple as that."

Pandora Summerfield, director of Down's Syndrome Scotland, told the BBC they were concerned by the handling of Jamie's case.

She said: "As far as we're aware there are very clear guidelines that the police should follow when they interview somebody who is classified as a vulnerable adult and as far as we know, because we haven't had any direct involvement with the family, those weren't followed in this incident and they should have been."

Author develops superhero for kids with autism




KATU-TV in Portland, Oregon reports that author and speech pathologist Michelle Winner, who specializes in autism, has created the Superflex superhero as a way to help children with autism deal with social barriers. "By identifying with the comic book hero, kids who have trouble understanding how others think can learn social strategies," KATU reports.

"Superflex defeats a cast of criminals, including Rock Brain - a villain that gets stuck on one idea, which is a common problem for kids with Asperger's syndrome," according to KATU.

The Superflex superhero is featured in a comic book used in a curriculum package for children with autism or Asperger's. KATU reports that "Autism specialists in Portland have used the comic book at several schools and they say it appears to be making a difference."

Winner ran workshops about autism in Portland April 17-18. She is a specialist for persons with social thinking challenges and is based in San Jose, Calif., where she has a private practice, Winner created the Center for Social Thinking, Inc., where she and her team specialize in creating educational strategies for helping persons with diagnoses like autism.

Thursday, April 17, 2008

Disabled vet recalled for duty in Iraq

The Buffalo, N.Y., news media is abuzz this week because a local University of Buffalo communications student, who left the military in 2004 with a partial disability due to hearing loss and a knee injury, has been recalled for duty in Iraq. He sustained his injuries while serving in Afghanistan.

The Buffalo News reports that in 2004 James Raymond "was given an honorable discharge and the Department of Veterans Affairs determined that he was 10 percent disabled, enabling him to receive $120 a month for the rest of his life.

"Raymond is expected to report for training May 18 at Fort Benning, Ga., where he would undergo a medical and mental evaluation. Five weeks later, if he is determined to be fit to return to duty, he will be deployed to Fort Dix, N.J., where he would join up with a Reserve unit there. In September, the unit is expected to be sent to Iraq."

“Why am I, as a disabled vet, to be called up?” Raymond asked. “Why isn’t there a process around this to get me out of having to go to Fort Benning and drop my life?”

A spokesman for Disabled Veterans of America, told The Buffalo News that other disabled vets have been called back to duty as well.

“It all depends on if they were disabled enough to be considered undeployable,” David Autrey said.

WKBW-TV also reported Raymond's story, and The University of Buffalo student newspaper, The Spectrum, editorialized about the unfairness of the situation to their fellow student.

Retirement party set for beloved guide dog


Kevin Coughlin and Ruger


1010 WINS radio in New York City had a fitting news story on April 15 about the retirement of guide dog, Ruger, who has assisted Kevin Coughlin, 46, of Manhattan, to safely navigate the city for nine years.

Coughlin, who is blind, has to say goodbye Ruger on April 18 because of the yellow lab’s age means it's time for him to retire. Manhattan's St. Agnes Church is honoring Ruger the evening of April 17 for his years of service.

Full disclosure: I know Kevin and Ruger, but I think it's fitting to say thanks to such an important service animal. Many blind people face discrimination because some in society don't understand how well-trained guide dogs are and that they can't be barred from businesses, etc.

Kevin fought against discriminatory practices against guide dogs when a NY City coffee bar wouldn't let he and Ruger in. He won a small settlement, which he donated to the New York Guide Dog Users Association for the purposes of education.

Kevin now does motivational speaking about access for blind people and the life lessons he's learned from his sudden blindness at age 36. Here's a story The New York Times did about Kevin in 2004. To book Kevin as a speaker, contact him at misterruger@earthlink.net.

Wednesday, April 16, 2008

Be careful, Diablo Cody; mental illness a questionable subject for comedy


Screenwriter Diablo Cody

Academy Award-winning "Juno" screenwriter Diablo Cody will tackle mental illness in her comedy pilot for Showtime called "The United States of Tara." The main character, Tara, (played by Toni Collette) will have a multiple personality disorder.

According to The Hollywood Reporter, the series is moving closer to being ordered by Showtime with the production's hire in late March of writer-producer Alexa Junge, who was a supervising producer on NBC's "The West Wing" and co-exec producer on "Friends." Production is reportedly underway this month.

I readily admit to being a big fan of "Juno," and I thought its script was brilliantly written. But focusing comedy on a person with a mental illness (and a controversial one at that) seems like a really bad idea. In popular culture, lots of stigma and negative stereotypes have been heaped on people with mental illness for decades.

The National Alliance on Mental Illness (NAMI) has a program in which people can become StigmaBusters to challenge stereotypes in TV, film, print, or other media. "They seek to educate society about the reality of mental illness and the courageous struggles faced by consumers and families every day," NAMI says. "StigmaBusters' goal is to break down the barriers of ignorance, prejudice, or unfair discrimination by promoting education, understanding, and respect."

Otto Wahl, Ph.D., a psychology professor at the University of Hartford and author of Media Madness: Public Images of Mental Illness, has put together a resource page about combatting discrimination and stigma against people with mental illnesses.

I don't want to condemn a show before I've seen it, but I hope Diablo Cody will rethink the concept for "The United States of Tara."

Australian recounts life inspired by Helen Keller




The Manly Daily, outside Sydney, Australia, profiled Bob Hinds, who as a 13-year-old met Helen Keller at a public reception in her honor at the Sydney Town Hall in 1948.

At the age of 12, Hinds had been diagnosed with retinitis pigmentosa, a degenerative condition of the retina, and was going blind. He says in the story that his meeting with Keller turned his life around, because after meeting the famous deaf-blind woman who had achieved so much, it encouraged him to pursue his own dreams.

"People with blindness are always looking for something to lead them onwards," Hinds said. "Helen Keller brought with her a revolutionary approach to disability. In an age when she could have sat back and taken it easy, she never stopped achieving and wanting to learn."

His professional career spanned 40 years; his last job before retirement was working in public relations with Public Works.

Disaboom interviews Marlee Matlin

Disaboom, the social networking and news site for people with disabilities launched in 2007, posted a Q&A with Marlee Matlin on its site, which discussed her work on "Dancing with the Stars."

Disaboom as a marketing concept was profiled in The New York Times last fall after its Oct. 1 launch. Disaboom was founded by J. Glen House, a doctor who is a quadriplegic as a result of a skiing accident at 20.

In addition to social networking, it has disability oriented news, career advice, dating resources and travel tips for people with disabilities. Disaboom created some controversy when it started because aspects of the Web site were incompatible with screen readers that many blind people use. "The site incorporates Flash animation and, it does not appear that they have taken the steps to make their Flash content accessible," Ron Graham's Access Ability blog wrote last October. "To me, this is a glaring oversight when you are directing your site towards people with disabilities."

But according to Graham, Disaboom worked to resolve these access issues quickly.

Scholar, poet to take helm of Toledo disability studies program

James Ferris, currently communications faculty at the University of Wisconsin-Madison, has been named chairman of the endowed Disabilities Studies Program at the University of Toledo.

"I'm hoping to develop the Disabilities Studies Program at the university into an outstanding program," Ferris said. "I'm hoping to develop it in ways that it will serve as a model for other programs around the country."

Also a poet and performer, Ferris is the author of Facts of Life (2005) and The Hospital Poems (2004). He has experience as a performance artist, director, playwright and actor and is the past president of the Society for Disability Studies. You can read one of his poems as part of the educator resources at the Web site of VSA Arts, which promotes the inclusion of people with disabilities in the arts.

The chairman's position is funded by a $1.9 million endowment awarded to the University of Toledo. The Ability Center's mission is to empower people to live, work and socialize in a fully accessible community. The center is founded on the belief that a disability is an integral part of the human condition.

Tuesday, April 15, 2008

KHOU-TV investigates problems for deaf inmates at Harris County Jail

Great topic, poorly done. KHOU-TV in Houston did a story about the outdated TDDs (Telecommunications Devices for the Deaf) in the Harris County Jail, which meant that one inmate who is deaf never could contact his family while he was in the jail. According to the story, many more deaf people now use video phones rather than the text-based TDDs.

Communication access for deaf people who are incarcerated is a wonderful topic, but this story dripped with pity as the reporter referred several times to the "silence" in which the deaf person lives. The reporter even implied that sign language interpretation is often confusing. Not true. Experienced interpreters are typically not confused because they are completely fluent in sign language.

A true lost opportunity to really explore an important access issue because the reporter spent most of his time focused on his own amazement at the "man who lives his life in silence," as he put it.

Did China stage attack on disabled Olympics torch bearer?



Stories are flying around the blogosphere this week alleging that China, in an effort to create animosity toward Tibetan protestors, staged the attack on the Paralympian Jin Jing, who carried the Olympics torch in Paris. Jin Jing became a symbol of heroism in China for her efforts to protect the torch.

A report at Alex Jones' Infowars says that the man in the Tibetan flag head bandana pictured above was reportedly seen in other pictures carrying the red Communist China flag. The Big Lizards blog dissects the controversy and has information from some Chinese bloggers in Japan.

I blogged about this April 11 and included a link to video footage in which no one gets close enough to Jin Jing to attack her.

2008 FOCUS Film Festival requests submissions on living with a disability


The film, "Darius Goes West," screened
at the 2007 FOCUS Film Festival.

The 2008 FOCUS Film Festival will host its First Annual Filmmakers Competition: FOCUS on Living with a Disability.

The Festival would like submissions of short films, 30 minutes or under, in the categories of drama, comedy, documentary, animation, or experimental. The deadline for submissions is July 15, 2008.

Held at the Cascade Theatre in Redding, Calif., and on the Chico State University campus in Chico, Calif., the FOCUS Film Festival "explores documentary and feature films, which 'focus on and examine the complexity of the human experience: relationships, aging, disability, culture, lifestyle, and more. Our objective is to enlighten and inspire our community by featuring quality films which offer insight into the lives of people from all walks of life. By showing a broad range of human experience, we believe we are closing the gap in perception, proving we are more alike than we are different."

The festival is sponsored by Far Northern Regional Center, Shasta County Arts Council, Union Bank of California, Shasta Regional Community Foundation, The Area 2 Developmental Disability Board, Rural Education Institute, Downtown Redding Business Association, Parent Infant Programs, First 5 Shasta, Rowell Family Empowerment Center of Northern California, We Care A Lot Foundation, Northern Sierra Rural Health Network, and ARC of Butte County.

DiversityInc: 7 things never to say to people with disabilities




DiversityInc, a publication on diversity and business, which is both a Web site and a monthly print magazine, writes April 14 about inappropriate things that are said to people with disabilities.

Thankfully the article doesn't tackle this topic without expert advice in the form of the National Organization on Disability (NOD) and Disability Rights Education and Defense Fund (DREDF).

The article discusses culturally insensitive terms such as "handicapped," "retarded" and "slow," as well as supposed "compliments" to people with disabilities, like "but you look so good," implying that others with disabilities don't.

"These terms are unacceptable because they are linked to a history that the general public isn't aware of," Nancy Stern, vice president and chief of staff for NOD, says in the article. "And just like there are terms that you don't use for African Americans anymore, the same goes for people with disabilities."

"As the demographics in this country shift, there are going to be more and more people with disabilities in the work force. And as long as accommodations are available, there's no reason they should not expect to continue to work," Stern says.

DiversityInc appears to regularly run articles on these topics, such as "6 Workplace Myths About People With Disabilities," as well as similar articles on other diversity areas -- "7 Things NEVER to Say to LGBT Coworkers" and "10 Things NEVER to Say to Latino Executives."

Outlook for people with cystic fibrosis improving

The Baltimore Sun reported April 13 on advancements that have led to many more people with cystic fibrosis living to adulthood.

Baltimore is home to the 12-year-old adult cystic fibrosis clinic run by Johns Hopkins Hospital. "Affecting 30,000 people in the United States alone," The Sun reports, "cystic fibrosis is an inherited disease that causes the body to produce thick, sticky mucus that can clog the lungs and damage the pancreas, interfering with the body's ability to absorb nutrients. As a result, victims are prone to dangerous respiratory infections and struggle to gain weight. In the early 1960s, the median survival age was 10 years.

"A steady progression of drugs, medical devices and improvements in disease management has made it possible for patients not only to survive longer, but also to attend college, have careers and raise families," The Sun reports "By the early 1980s, median survival had risen to 21 years. Today, it is 37."

Even though treatments and therapies have vastly improved the treatment of its symptoms, medical researchers are now working to develop medications that will make the protein that causes cystic fibrosis work correctly.

"These are interesting and good times to be in cystic fibrosis research," said Dr. Craig Gerard, who treats patients at Boston Children's Hospital. "We now have drugs in development that directly target the nature of the disease."

People with cystic fibrosis are now faced with traditional life decisions once thought impossible -- whether to get married, have children, pursue long-term career opportunities, etc.

James Albright, 44, of Virginia, has cystic fibrosis and wears an IV to deliver the medications he needs; he said in the article that he was very honest with his future wife about his uncertain longevity before they married 20 years ago.

"I was pretty up-front about it," Albright said. "If we could get five good years out of it, it would be great. I couldn't promise anything beyond that. But married couples tend to live longer - my goal is 70s."

The couple now has a family of five, having adopted three boys, including one with cystic fibrosis.

Monday, April 14, 2008

Blind runner finishes seven marathons on seven continents in seven days

Dave Heeley surrrounded by his family
after the London marathon.

Dave Heeley, 50, (known as "Blind Dave" in the UK) and his running partner Malcolm Carr completed the London marathon April 13, which was the last leg of their goal to run in seven marathons on seven continents in seven days. They are two of only four people who have accomplished this, according to BBC News.

Their efforts also raised money for Guide Dogs UK. They completed marathons in the USA, Falkland Islands, Australia, Dubai, Tunisian Republic, India, and England.

"I am the first blind person to do this," Heeley said. "It's been a fantastic adventure and one I'm going to talk about for a long time."

He said he had chosen his charity so that "other blind people could have the freedom and independence I've had."

Kindergarten class wins prize for book on autism



Kindergarten children at H.B. Patch School in Omro, Wisc., are being honored for their work on a book about a classmate who has autism, according to The Oshkosh Northwestern.

Out of a field of 1,000 submissions statewide, the Autism Society of Wisconsin gave first place to the kindergarten class of Abby Cravillion for its book on their classmate, Camden Retzlaff, who has autism. The contest requested that a child or children in the class write an essay or a book to talk about the experience of having a friend or acquaintance with autism.

The book contains comments and illustrations about Retzlaff from his fellow kindergarten students. Their teacher, Abby Cravillion, said the kids only said good things about Retzlaff.

“They said he (Retzlaff) is nice and that he’s a good reader, good at math and a good bus buddy,” she said. “The kids wrote a sentence about Camden and also illustrated it.”

Retzlaff also drew a picture in the book, illustrating something he enjoys -- racing toy cars with his friends.

“The kids pretty much came up with the idea themselves and to see it through all the way is amazing. It shows how much they care for Camden,” Principal Dave Wellhoefer said. “The younger the kids are, the more likely they are to see past disabilities and see a friend.”

Sunday, April 13, 2008

Adaptive music plays the right tune


FLAME, a much-requested musical group in upstate NY;
all the band's members have disabilities.

The Disabled Dealer magazine did an interesting story about adaptive music in its April issue. The magazine, which focuses on new and pre-owned adaptive equipment and vehicles, doesn't put its articles online, but it listed a number of resources about adaptive music and musicians with disabilities.

The band pictured above, FLAME, from upstate New York, brings together a musical group of people with developmental/physical disabilities, including autism, Down’s syndrome and blindness. The band grew from a recreation program at the Lexington Center, Fulton County ARC and now has two CDs and a full tour schedule.

Tony Melendez is probably the most famous musician to play a guitar with his feet. (Guitars are apparently the most difficult musical instrument to adapt.) Melendez was born without arms because his mother was given thalidomide when she was pregnant with him.

Melendez began playing music as a child, playing a push-button organ. In high school he learned guitar and started writing his own songs. Devoutly Catholic, Melendez wanted to become a priest but couldn't because priests must have an index finger and thumb.

Instead, he became a guitarist and composer for masses and church-related events. In 1987, he performed for Pope John Paul II, when he visited the USA. He currently lives in Branson, Mo., with his wife and kids and has his own record label and has produced several albums of Christian music he's composed.

Another important group related to adaptive music is the Coalition for Disabled Musicians, which "introduces disabled musicians to each other who have an understanding of disability-related problems; gives access to an accessible rehearsal and recording studio; creates 'tag-team' systems and other adaptive techniques for pain, endurance, and other limitations; sets up studio and stage bands for amateurs and professionals; holds live performances, produce recordings, and hold music workshops and seminars; promotes public awareness of the disabled community as a great reservoir of talent and ability."

Other resources for adaptive music or musicians with disabilities are:

Deaf actress Linda Bove continues to educate Hollywood


Linda Bove, left,
with Shoshannah Stern in 2005.


Deaf acting pioneer Linda Bove, who played the librarian on "Sesame Street" for 32 years, is assisting the April 20 Hallmark Hall of Fame TV movie "Sweet Nothing in My Ear" with incorporating all aspects of deaf culture into the production, according to The Los Angeles Times April 13.

"Sweet Nothing in My Ear" is based on Stephen Sachs' play about parents dealing with their young son's hearing loss and the possibility of a cochlear implant for him. It stars hearing actor Jeff Daniels and Academy Award-winning deaf actress Marlee Matlin.

Part of Bove's job on the CBS movie was helping Daniels with his sign language, as well as making sure the filming of the many deaf actors signing didn't cut their hands out of the frames. A number of deaf actors are in the movie -- Phyllis Frelich, Ed Waterstreet, Noah Valencia, Deanne Bray, and Shoshannah Stern (pictured above with Linda Bove).

"The project was given the green light 2 1/2 weeks prior to the actual shooting," Bove said in the article. "So we had a very short time for Jeff and me to come together and make sure we had everything covered. Jeff had a very challenging job to learn sign in that amount of time. I would say it took about three weeks in all. I was on set every day of shooting. Jeff used to tease me, and he'd call me 'The Sign Cop.' I thought that was funny. But Jeff was a hard worker."

Jeff Daniels talks about how important Linda Bove was to his mastery of sign language in a video on the film's Web site.

Bove said the production made sure to respect deaf culture and had great attention to detail.

"The director called me in last week to dub my voice for crying," she says. "I thought it was really cool, because he wanted a deaf voice. What did it sound like to cry? They did that for authenticity. I was very shocked, very pleased. And I'm happy that I was able to do that as an actress, you know. [It's] a very nice touch."