Wednesday, April 30, 2008
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.
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
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.
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.
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.
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
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."
"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.
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.
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
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
"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."
Wednesday, April 23, 2008
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.
"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.
Tuesday, April 22, 2008
"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."
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.
Monday, April 21, 2008
Sunday, April 20, 2008
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.
Saturday, April 19, 2008
Thursday, April 17, 2008
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.
Wednesday, April 16, 2008
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."
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.
"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
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.
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.
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
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
- A Day's Work Music Education
- Disabled Drummer's Association
- Adapted flutes, The Flute Lab
- Living My Song, making music accessible for everyone
- My Breath, My Music
- Teaching Learners with multiple special needs, Adaptive Music Links
- The Raven Drum Foundation, Trauma and Resiliency Program
- Directory of Musicians with Disabilities
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."