Last Updated July 17, 2008

Famous People & Spina Bifida

In no particular order....

Hank Williams, Sr. | Judy Woodruff | John Cougar Mellencamp | Buddy Winnett
Frida Kahlo | Bruce Payne | Mayor Richard M. Daley | Elvis Grbac | Jean Driscol
Jay Bradford Fowler | Paul Monette | Jim LeBrecht | Rene Kirby | Van Smith
Gilbert M. Gaul | Robert Hensel | Dame Tanni Grey-Thompson | Deontay Wilder
Daniel Vance

Hank Williams

Hank Williams, Sr. - Singer and Songwriter

 Williams was one of the most influential country musicians of all time, both as a singer and as a composer. He suffered severe back pain throughout his short life.  Sources cite him as having spina bifida or spina bifida occulta.  An operation in 1951 aimed at relieving his constant pain was not successful.  Addicted to alcohol and morphine, Williams died at the age of 29.

References:

Judy Woodruff - CNN Co-anchor
Woodruff has a son with spina bifida. She has been instrumental in the annual SBAA Celebrity Roast which raises funds for the Spina Bifida Association of America.

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John Mellencamp

John Cougar Mellencamp - Singer and Songwriter
In the interview from the Special Olympics, he also said that two other people were born at the same time he was with spina bifida. He said he always saw a particular girl at the basketball games who was confined to a wheelchair. He asked someone who it was and they told him that she was one of the others born with spina bifida.

John realized it could have been him in that wheelchair and that is one of the main reasons he did a song for the Special Olympics. Most of those with spina bifida end up like the girl in the wheelchair and are not as lucky as John.

References:

Buddy Winnett - Horse Trainer & Jocky
Buddy Winnett is a former horse jockey and trainer who is legally blind due to macular degeneration. Born in West Virginia to a large family, Winnett was diagnosed with spina bifida, and wasn't expected to live past the age of 6.

 

Frida Kahlo - Artist

It is believed that Mexican artist Frida Kahlo may have had spina bifida, along with other disabilities, including residual damage from polio and injuries suffered in a bus accident.


References:

Bruce Payne - Actor
British actor has a mild form of spina bifida. Learn more about his career on his page at IMDB.

Richard M. Daley - Mayor of Chicago
Mayor Daley had a son named Kevin who had spina bifida. Kevin died in 1981.

Elvis Grbac - Quarterback
Elvis has a young son who has spina bifida. He was the quarterback of the National Football League's San Francisco 49ers.

Jean Driscoll

Jean Driscoll - Wheelchair Racer & Olympian
Jean was born with spina bifida. She is a seven-time winner of the Boston Marathon, setting world records in five of those races. She set a world record in the 10-kilometer race last year, and won silver medals in 800-meter events at the 1992 and 1996 Olympics, as well as two gold medals, one silver and one bronze at the 1996 Paralympics.

In 2000, Jean was voted #25 of the Top 100 Female Athletes of the 20th century by Sports Illustrated for Women, a list topped by the Olympic track and field sensation, Jackie Joyner-Kersee. 

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Jay Bradford Fowler - Poet
Jay Bradford Fowler Jr., was an award-winning poet who was the author of 17 books of verse. He was born with spina bifida, and had been treated for degenerative arthritis throughout the 1990s. He had undergone at least 16 major operations over the years and had been bedridden the past eight years.

The first of his 17 books of poetry, "Writing Down the Light," was published in 1987. A book of his collected poems, "Caged Angel," was published in 1997. His last book, "Outrageous Asylum, Sonnets from the Nursing Home," appeared in 1998. A final volume of his work is to be published this year.

Paul Monette - Author
Monette was the older of two boys. His brother, Robert, was born with spina bifida.  Monette became Robert's protector and champion. He also decided he would need to live an exemplary life to compensate for his brother's illness.

"Paul Monette: The Brink of Summer's End" is a poignant, illuminating documentary on Paul Monette, the National Book Award-winning author, who wrote with eloquence and fire about the devastation of homophobia and AIDS, the disease that left him twice a widower and ended his own life in 1995 at age 49.

Jim LeBrecht - Sound Designer

Jim was born with spina bifida. He is also the co-author (with composer Deena Kaye) of Sound and Music for the Theatre: the Art and Technique of Design, and has been a visiting professor at Yale University. LeBrecht has won numerous awards, including the San Francisco Bay Area Drama Critics' Circle Award for Outstanding Sound Design, which might as well be renamed in his honor, since he's won it five times.

Rene Kirby

Rene Kirby - Actor

Best known for his role in Shallow Hal, Rene (pronounced 'Reen') Kirby was born in Vermont in 1955. He also appeared in the film "Stuck On You" with Matt Damon, Greg Kinnear and Eva Mendes, and the HBO series Carnivàle.

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Van Smith - Theatrical Make-Up Artist
Born in Florida in 1945, Walter Avant Smith Jr., showed an early interest in art, but lacked dexterity due to stiffness in his hands as a result of spina bifida. But he parlayed that interest into a career with film-maker John Waters after earning a degree in fashion arts from the Maryland Institute College of Art. Waters referred to Smith as the resident "ugly expert". He designed the pink satin ball gown adorned with huge cockroaches worn by Ricki Lake in Mr. Waters’s 1988 film, “Hairspray” and Divine's trademark look.

He also worked as an illustrator at Women's Wear Daily and other publications in New York.

He died of a heart attack in December of 2006.

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Gilbert M. Gaul - Two-time Pulitzer Prize Winng Journalist
Gil is a 1979 Pulitzer Prize winner for Investigative Reporting and has written for the Philadelphia Inquirer and Washington Post. He has a son, Cary, who has spina bifida. Gil profiled his son's early years in the book "Giant Steps" which is currently out-of-print but can sometimes be found at used book stores and online.

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Robert Hensel - Poet
Robert was born with spina bifida. He an International poet-writer  with well over 900 publications published worldwide. In 2000, Robert was nominated as one of the best poets of the 20th Century.  Robert is also a Guinness & Ripley's World Record Holder for the longest non stop wheelie in a wheelchair, covering a total distance of 6.178 miles. Visit his web page listed below.

References:

http://wheelierecord.tripod.com/id12.html

 

Dame Tanni Grey-Thompson - Wheelchair Racer & Paralympian

TanniBorn with spina bifida, Grey-Thompson's full name is Carys Davina but she is better known by her moniker, "Tanni". Tanni uses a wheelchair, and is considered to be one of the most successful disabled athletes in the United Kingdom. Thompson competes in events over a wide range of distances, first competing in the 100 m at the Junior National Games for Wales in 1984. Over her career to date, she has won a total of 16 Paralympic medals, including 11 golds, held over 30 world records, and won the London Marathon six times between 1997 and 2002. In 2002, she was made a Dame of the British Empire by Queen Elizabeth.

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Deontay Wilder - Boxer

A rising star in the boxing world, Deontay is has a daughter, Naiyea, who was born with spina bifida in 2005. In May of 2007, he won heavyweight belt for the 2007 Golden Gloves National Tournament of Championship. At that time, he had 16 fights under his belt. Dave Godber, is the head coach of Deontay's team. “A man with 16 fights winning this championship is nothing beyond unbelievable,” Godber said. “That very rarely happens. This is something good to happen in a community.” Members of Deontay's team chanted Naiyea's name during the Golden Glove championship bout. His work earned him a spot on the 2008 Olympic team.

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Daniel Vance - Journalist / Columnist
Daniel Vance

Writer of the widely-syndicated column Disabilities, Daniel Vance is raising the profile of people with disabilities, bringing awareness and understanding of disability-issues to the general public. Vance is the editor of Connect Business Magazine and the author/co-author of ten books, including his newest 172-page history collection called Unique Mankato! He is also the father if Abigail, a young teenager who has spina bifida. His wife Carolyn is one of 150 master knitters in the world.

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Special Thanks to Jolyne W., Mary S., Susan and Julia Grace Collins for their contributions to this page!
It has taken us a great deal of time to compile the information on this page. Please credit the Children and Adults with Spina Bifida web site if you use the information else.

Thanks,
Linda