Last Updated November 12, 2009

Famous People & Spina Bifida

Names of individuals in alphabetical order

Jade Calegory • Mayor Richard M. Daley • Al Davison • Jean Driscol
Aaron Fotheringham • Jay Bradford Fowler • Gilbert M. Gaul •
Dame Tanni Grey-Thompson • Lawrence Gwozdz
Elvis Grbac • Blaine Harrison • Robert Hensel • John Holter • Frida Kahlo
Boris Kodjoe & Nicole Ari Parker • Jim LeBrecht • Tatyana McFadden
Mike McGee • John Cougar Mellencamp • Paul Monette • Rene Kirby • Bruce Payne
David Proud • Van Smith • Jeffrey Tate • Daniel Vance • Deontay Wilder
Hank Williams, Sr. • Lucinda Williams • Miller Williams • Buddy Winnett
Judy Woodruff

 

Entries listed as added - oldest entry listed first

Hank Williams, Sr.—Singer and Songwriter

Hank Williams
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

Judy Woodruff

Judy Woodruff has a son who has spina bifida. In interviews, Woodruff shares that Jeffrey was born in 1981 with a mild case of spina bifida, but during routine surgery at age 16 developed complications which resulted in brain damage. She has been instrumental in the annual SBAA Celebrity Roast which raises funds for the Spina Bifida Association of America. Judy's husband is Al Hunt.

References:

 

John Cougar Mellencamp—Singer & Song Writer

John Mellencamp

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 & Jockey


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 GrbacElvis has a young son who has spina bifida. During his career he was a starting quarterback for the San Francisco 49ers, Kansas City Chiefs, and Baltimore Ravens of the National Football League. In 1996, Grbac was famously slammed by San Francisco Mayor Willie Brown. Brown criticized Grbac's costly turnovers against the Dallas Cowboys on Sunday and called the 49ers' second-string quarterback an ''embarrassment to humankind.'' Grbac later said he was not prepared to play because he has been worried about his 9-month-old son, Jack, who has spina bifida, recently underwent surgery. The mayor later apologized.

Jean Driscoll—Wheelchair Racer & Olympian


Jean Driscoll 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. 

References:


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—Actor

Rene Kirby 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.

References:

 

Van Smith—Theatrical Make-Up Artist

Van Smith

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.

References:

Gilbert M. Gaul—Two-time Pulitzer Prize Winning 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.

References:

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:

 

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.

References:

Deontay Wilder—Boxer

Deontay WilderA 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.

References:

Daniel Vance—Journalist / Columnist
Daniel Vance

Writer of the self-syndicated column Disabilities, Daniel Vance is raising the profile of people with disabilities, bringing awareness and understanding of disability issues to the general public. His column has been published in more than 260 newspapers. Vance is the editor of Connect Business Magazine and author/co-author of ten books. He is also the father of Abigail, a 14-year-old with spina bifida. His wife Carolyn is one of 150 master knitters in the world.

References:

Boris Kodjoe & Nicole Ari Parker—Actors

Family Actors Boris and Nicole have two children, daughter Sophie Tei Naaki Lee and son Nicolas Neruda. Sophie was born with spina bifida.

Austrian-born actor Boris Kodjoe is well-known for his role on the Showtime series "Soul Food" where he met his wife, fellow actor Nicole Parker. He's also done several movies, including the newest installment in the "Starship Trooper" series. He also had a role in "Love and Basketball" and starred in "All About Us." He was named to People magazine's "50 Most Beautiful People in the World 2002".

Nichole Ari Parker appeared in several critically-acclaimed independent films including The Incredibly True Adventure of Two Girls in Love, Boogie Nights, 200 Cigarettes, and the 1999 Sundance Film Festival winner The Adventures of Sebastian Cole.

Boris and Nicole have started a charity to raise money for the The Xiao Procedure for Children with Spina Bifida.

References:

Al Davison—Cartoonist

Al Davison

Al Davison is an English cartoonist who was born with spina bifida — doctors thought he would never walk — and his graphic novel THE SPIRAL CAGE chronicled growing up and struggling to be accepted as a whole person. Despite his handicap he’s studied martial arts for 30 years, and gained a couple of black belts. Here’s a video of Davison putting on an MA demonstration he recently put up on his MySpace page. He also runs a comics shop in Coventry called the Astral Gypsy which just celebrated its first anniversary.

References:

 

Blaine Harrison—Musician

Blaine Harrison

Blaine Harrison is the lead singer of the British group The Mystery Jets, a four-piece British indie band. Blaine has spina bifida and uses crutches to get around. The band recently cancelled a string of shows after Blaine developed pressure sores on his feet while in a hot tub. He has a funky hairstyle that others are trying to copy.

References:

 

 

Mike McGee—Slam Poet

Mike McGee

Born January 12, 197 6 in Fort Campbell, Kentucky. McGee currently lives in San Jose California where he started his career in spoken word, poetry slam and performance poetry in 1998.

Awards:

References:

David Proud—Actor

David Proud

British actor, best known for his work on the British soap, Eastenders where he played Oxford student Adam Best, son of Minty’s girlfriend Manda.

David was born March 14, 1983 in Cambridge, England.

References:

 

Jade Calegory—Actor

Jade Calegory

Jade starred in the movie "Mac and Me" , a movie about an extraterrestrial, separated from his family and stranded on Earth, and a boy who uses a wheelchair. Jade was born April 12, 1976.

Quote: "You shouldn't dwell on what you can't do. Focus on what you can do. And the more you see what you can do, the more you come to realize there are no limitations in life."

References:




Jeffrey Tate—Conductor

Jeffrey Tate

Born in 1943 in Salisbury, England. Studies medicine at Cambridge University before switching to a career in music, which begins with schooling at the London Opera Center. Becomes principal assistant at Covent Garden in 1977. Makes regular symphonic appearances in Berlin, Dresden, Los Angeles and Boston.

Awarded Knight Commander of the British Empire and French Chevalier des Arts et des Lettres.

Born: April 28, 1943 in Salisbury, Wiltshire, England Biography

References:

 

Aaron Fotheringham—Wheelchair Athlete

Aaron

 

 

 

 

Lawrence Gwozdz—

 

 

Lucinda Williams—Singer and Song Writer

Lucinda WilliamsLucinda Williams is is an American rock, folk, and country music singer and songwriter. Williams was born in 1953 in Lake Charles, Louisana. She grew up listening to Delta Blues and Hank Williams. Her father is poet Miller Williams. Mary Chapin Carpenter recorded Williams' song "Passionate Kisses" and won a grammy for Best Country Song of 1994.

Awards:

References:

 

Miller Williams—Poet

Miller Williams

Read his poem, "Of History and Hope" at President Bill Clinton's second inauguration.

Books:

References:

 

Tatyana McFadden—

 

 

John Holter—

John Holter

"In 1956, John and Mary Holter were shattered when their son, Casey, was born with spina bifida and hydrocephalus (water on the brain). Doctors told the Holters that the opening of the spine on their son’s back could be repaired but that they had not yet found a successful way to manage the buildup of spinal fluid in Casey’s brain, a process that would eventually kill him. Mr. Holter, a self-described “mechanic” who worked in a lock company’s research lab, decided to tackle the fluid problem. He developed a small, one-way valve that he thought would allow the brain fluid to drain and save his son’s life. He prevailed upon the child’s neurosurgeon, Eugene Spitz, to use the untested device, which was made of silicone, a new material. Casey lived an unexpected 5 years before dying from other causes. The Holter valve made drainage or shunting of cerebrospinal fluid a practical reality. Today, after years of technical modification and adjustment in clinical procedures, about 30,000 shunt procedures are done in the United States each year. The life expectancy of children with hydrocephalus is now measured in decades, not years, and hydrocephalus is no longer the end of a family’s dreams."


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