SBA's YAA Blog

SBA Chairman Responds to Gratuitous and Offensive Comment Made in Warner Bros.' "The Dukes of Hazzard"

August 29, 2005

Barry M. Meyer
Chairman and CEO
4000 Warner Blvd.
Burbank, California 91522

Dear Mr. Meyer:

The movies produced by Warner Bros. have brought joy to so many through the years. Generations have been inspired by the timeless romance of Casablanca and we were recently enchanted by March of the Penguins. So we were most disappointed when The Dukes of Hazzard ridiculed people with Spina Bifida—a permanently disabling birth defect—by making the condition into a cheap bathroom joke and referring to it as “anal bifida.” As an adult with Spina Bifida, I was outraged for the entire Spina Bifida Community.

Certainly we appreciate and welcome the opportunity to laugh at ourselves. But this kind of crude humor is not funny; it is offensive. It is insulting to the 70,000 people living in this country who every day of their lives are confronted by the challenges of living with Spina Bifida. It is cruel to the children who must spend their lives in wheelchairs or wear braces for mobility. It is demeaning those who suffer with hydrocephalus who must have shunts surgically inserted in their skulls to facilitate drainage. It is an affront to the 60 million women in the United States who are at risk of a Spina Bifida pregnancy and to their unborn children.

Perhaps the most tragic thing about Spina Bifida is that although all women of childbearing age are at risk of a Spina Bifida pregnancy, too few know that they can significantly reduce that risk by taking folic acid every day. That, Mr. Meyer, is no laughing matter.

The Dukes of Hazzard has already been seen by hundreds of thousands of movie-goers. Even if you were to remove the film from circulation until you could repair the damage you have done, thousands of people have already seen it. Hopefully they are wiser than you and will not think that Spina Bifida is a punch line.

The movie will reach an even wider audience when it is distributed on DVD, VHS, and broadcast on television. We urge you to take advantage of the opportunity to stop further perpetuating this offensive and hurtful scene by deleting it when the movie reaches this stage of distribution. The thousands of people who face the challenge of living each day with Spina Bifida deserve nothing less.

Warner Bros. is in a position to take a leadership position and help us reach out to the 60 million women at risk and educate them about folic acid. You have the resources to change lives. Please join us in working to prevent Spina Bifida and improve the lives of those who live with it—not making them the source of a cheap joke.

Sincerely,

Douglas J. Sorocco, Esq.
Chair, Spina Bifida Association

CC: Alan F. Horn, Edward A. Romano

Tatyana McFadden - An Inspiration On and Off the Track

Tatyana McFadden, a young woman with spina bifida, was featured last week in the Washington Post for the inspiration she receives competing in wheelchair track events.  Tatyana, who is 16, will be among the youngest of the 1,247 athletes competing at the European WheelChair Championships in Espoo, Finland this month.

"McFadden, 16, a sophomore at the Columbia school, will be among the youngest of the 1,247 athletes at the event; they will represent 47 countries. But she is considered a rising star on the U.S. Paralympic Team and one of the world's most talented wheelchair athletes, quite an accomplishment for a girl who wasn't expected to live more than a few weeks.

McFadden was born in St. Petersburg, Russia, with spina bifida, a congenital defect in the spinal column that left her paralyzed from the waist down. Abandoned by her mother, she lived in an orphanage until she was spotted by an American woman who worked for the U.S. Department of Health and Human Services providing humanitarian aid overseas.

....

"She's already one of the top athletes in the world," said Joe Walsh, the managing director for U.S. Paralympics. "If she keeps improving the way she has, then three or four years from now she could be challenging to be the best ever at her sport."

Good luck Tatyana - we will all be cheering you on!

Another Reason to Consume Folic Acid -- It is Also Linked to Baby Birth Weight

According to new research results from England, pregnant women who lack the vitamin folate in their blood are more likely to have a baby with a low birth weight which in turn leads to children having lower IQs and additional health and developmental problems.

Folate is a B vitamin found in green leafy vegetables, cereals and liver. It is essential for foetal growth and gene expression, helping produce and maintain new cells.

Women are already advised to take folic acid supplements, a synthetic compound of folate, before conceiving and during the early months of pregnancy, to reduce the risk of defects such as spina bifida, a defect of the spinal column.

Researchers from the University of Newcastle upon Tyne examined folate levels in red blood cells for nearly 1,000 pregnant women and looked at lifestyle data.

They found higher folate levels in women were associated with increased birth weight for their babies -- a marker for good health in infancy and later in life.

"Low folate status in early pregnancy has been linked with low infant birth weight. Mothers with low levels of folate have lighter babies," said Dr Caroline Relton, who headed the research team.

 

 

Barbara Walters to Headline SBA’s 17th Annual Roast for Spina Bifida

ABC News veteran Barbara Walters will headline the 17^th Annual Roast for Spina Bifida on Oct. 5 at the Hyatt Regency Washington on Capitol Hill. Turning the tables on one of Americas most respected journalists, political leaders will now put Walters in the hot seat as shes grilled for Spina Bifidathe most common, permanently disabling birth defect in the U.S. affecting 70,000 men, women, adolescents and children.

Its not only an honor to help deliver the important message of preventing Spina Bifida, but to join my colleagues in one night that can change lives, said Walters, who joins former roastees Bernard Shaw, Don Hewitt, Tom Brokaw, Tony Kornheiser, Dan Rather, Don Imus, William Safire, Andrea Mitchell, Lesley Stahl, Jim Lehrer, Larry King, Tim Russert, Sally Quinn and Ben Bradlee, Pat Buchanan, Sam Donaldson and Bob Novak.

The Annual Roast was founded in 1989 by Judy Woodruff and Al Hunt whose son, Jeffrey, has Spina Bifida, a neural tube defect (NTD) that occurs in the first month of pregnancy when the spinal column doesnt close completely. Emcee Mark Shields will lead the Washington tradition, with attendees including political, media and Fortune 500 company leaders.

MileOne Tischer Porsche of Silver Spring, Md., a long-term partner of the Spina Bifida Association (SBA), will provide $10,000 toward a 2006 Porsche Boxster raffle as a climax to the Roasts festivities. Additionally, an accompanying silent auction will include items such as week-long travel ventures.

SBA 2005 Conference - Retrospective

Dana Gass took the time to write up a terrific retrospective of the 2005 SBA Conference that was held in Minneapolis last month. Thanks Dana!

SBAA's 32nd Annual Conference held this year in Minneapolis, Minnesota began on Sunday, June 27th with our first-ever "Adult Day", a program specifically designed by and for Adults with Spina Bifida. There were sessions on Advocacy, Independence, Employment and Relationships.

One of the most important points made about advocacy is that learning how to advocate for yourself and for others is important, because there is strength in numbers, and as we kept hearing throughout the day, WE are our own best resources.

The session on Independence dealt with issues surrounding school, work , and Independent Living. People with disabilities are going to college in record numbers. The number of adults with disabilities in higher education has grown every year in the last 15 years, since the introduction of the Americans with Disabilities Act in 1990. Regarding employment, when job hunting , organization is very important. Your resume and cover letter are a reflection of you, and are the first impression the employer will have of you. The cover letter should be concise, but more importantly it should match the qualifications that are stated in the advertisement for the job.

The last session of the day focused on relationships, specifically social relationships, dating, and marriage and family issues. The Adult Day was well attended, and it laid the ground work for future Adult Programs.

Monday June 27th began with the Plenary Session, outlining the many advances that have occurred within SBAA this past year, and also our plans for the future. It was stated that this years Conference had record attendance, and it was also our third International Conference. With the inclusion of the International Foundation, we are truly, as one speaker mentioned " a global network".

One of the speakers of the Plenary session was from the CDC. He stated that one of the goals of the CDC is making sure people with Spina Bifida have the best care. The CDC is involved in several research projects, including bowel and bladder assistive devices, secondary conditions, and prevention.

Dr. David McLone, a neurosurgeon from Chicago, IL, spoke about a project that he is involved with, called the Village. The Village is a half block of apartment buildings, that will accomodate 21 young adults with disabilities. There are fourteen apartments, seven one bedroom units, and seven two bedroom units. The Village is set to open in 2007.

Tuesday June 28th began with a session titled "Got Stress?" where we learned that people need to understand what their own "warning signs" are when experiencing stress, because people experience stress in different ways. Some signs of stress are headache, back , neck or shoulder pain, and sleeping too little or too much. Some "tools" to cope with stress are: eating well, regular checkups, exercise, weight loss, and counseling or support groups. Some ways to help reduce stress include : relaxation exercises or tapes, peaceful music, or sounds of nature, like ocean waves.

In the session on HealthCare for Adults, participants learned that changes can occur in all body systems. These changes can be due to Spina Bifida, aging, or lifestyle changes. These changes require monitoring your health throughout your life. Age related changes can decrease muscle strength, flexibility and endurance. Skin changes can affect wound healing.

Medical issues related to Spina Bifida include shunt failure, Chiari decompression, spinal cord tethering, and urinary, bowel, orthopedic, and skin problems.

Signs to watch for regarding spinal cord tethering include changes in anything below the area of the lesion. This can involve changes in: ambulation, bladder, bowel, or strength.

For people who may have missed this years Conference, many attendees have said this was the best Conference ever. See you in Atlanta in 2006!

Wheelchair Motorcycle

Via Engadget:

Ever vigilant in our quest for the finest in Engadget company vehicles, our eagle eyes were drawn to this kickass wheelchair motorcycle. But wait, it gets better — its name is The Conquest. Shazam! Creator Alan Martin came up with the concept following an accident which left his son disabled, and designed the bike to be driven from the rider’s wheelchair. Based on the BMW 850 or 1150, depending on your need for speed, the wheelchair bike will be officially released in August for about £18,500 ($32K USD).

We're back from Conference!

Well, everyone is back from conference, well rested and ready to jump back into the blogging around here. Overall, the conference was a huge SUCCESS! There was so much for everyone to do and often it was so hard to choose which session to attend.

In the coming days we will be posting pictures, stories and short snippets of conference proceedings.

SBA Conference Time!

Well – we are off to Minneapolis!  Bogging will be bite – but hopefully we will have some updates on what is going on!

Introducing a Wheelchair Tennis Sensation

Rebecca Kelly, a new resident in Warrnambool, Australia, is attempting to set up a wheelchair tennis association and competition in her new home. 

Rebecca is 29 years old and is an individual leading an active life with spina bifida – playing basketball, swimming and track and field.  Never being one to stop when the going gets tough, Rebecca is working hard to get wheelchair tennis up and going.

According to Rebecca -

“You need to give it a go," she said.

"You need to do something other than sitting around doing nothing because you have a disability.

"It's not disappointing (that there is no competition), I can get something started. I've got the experience."

As Rebecca said, ya just gotta give it a go.

(Photograph copyright Glen Watson)

Allowing infants with spina bifida to die.

Most people in this day and age wouldn’t even consider the question of whether a child born with spina bifida should be treated. 

Unfortunately, it wasn’t always so and a recent article in the New York Times examines the historical events surrounding one doctor’s question of whether it was more humane to treat an infant with spina bifida or simply allow the infant to die.

The NYT article chronicles one debate that occurred in the 1970s at a series of medical meetings where Dr. John Lorber argued that infants should be left to die while Dr. John M. Freeman said they should be saved.

Dr. Lorber, one of the first physicians to take an interest in the lives of spina bifida patients, was vilified in retrospect. His terminology, suggesting that certain children be "selected" for nontreatment, raised uncomfortable reminders of the Holocaust. More charitably, a man with spina bifida wrote on the Internet that Dr. Lorber was well intentioned but wrong.

Think it couldn’t happen in this day and age, you’d be wrong.  It has been suggested that individuals with born with spina bifida not only be allowed to die, but that they be actively put to death.  In response, the SBA has taken a strong stance against the euthanization of babies born with spina bifida in The Netherlands.

UPDATE: Douglas Sorocco, Chair of the Spina Bifida Association of America and an adult with spina bifida, has prepared a response to the NY Times article.  You can download and read it here (PDF file format).

Aaron White could "take" Allen Iverson

Aaron White isn’t bashful – in fact, he claims he could “take” Allen Iverson of the Philadelphia 76ers. 

According to Aaron, a guard on the Magee Sixers basketball team in Philadelphia:

If you put [Iverson] in a wheelchair, I could probably beat him.

When not playing basketball, Aaron is majoring in education at Burlington County College and hopes to work with disabled children.  While spina bifida is a part of his life, he tries to not allow it to dominate his life.

I've learned to live with it ... I don't see it as a hindrance. I can do anything I want to do. I just have to go about it in a different way.

Defying the Odds

It is a time of graduations and celebrations and we all need to stop and congratulate those in the spina bifida community who have worked so hard to achieve their own personal goals.

Take Rachel Snelling, for example.  Rachel, from Ventura County, California, was born with spina bifida and her folks were told when she was born that she would never walk, see or be involved in “normal” activities. 

Rachel proved them wrong and walked alongside her classmates this past weekend during her graduation from high school.  Rachel will now go on to culinary school where her dream is to become a pastry chef and eventually work in Las Vegas.

Rachel’s words of wisdom about living with spina bifida:

 "It's taught me to keep going and to keep following what I want to do in life and not giving up on going after what I want," she said.

Congratulations to Rachel and all the individuals with spina bifida celebrating their academic achievements this month. Send us a note and picture (email: sbaa.yaa@gmail.com) about your special day and we will work to put together a special YAA Blog post.

(Photograph of Rachel Snelling, Copyright 2005 Dana R. Bowler Ventura County Star staff)