A Spina Bifida: Historical Perspective As the Spina Bifida Association celebrates its 40th anniversary, the organizati...

0 downloads 123 Views 153KB Size

Spina Bifida:

Historical Perspective As the Spina Bifida Association celebrates its 40th anniversary, the organization looks back on four decades of education and advocacy. Before the Spina Bifida Association was founded in 1973, families affected by Spina Bifida had to form their own support systems and fight on their children’s behalf every step of the way—if they chose to manage the condition at all. Information about Spina Bifida, and how best to treat it, was not readily available in a pre-Internet age, and even doctors familiar with SB often viewed it as a death sentence. Between the 1940s and the early 1970s, significant steps were made to improve the chances of survival for babies born with Spina Bifida. Antibiotics in the 1940s helped infants with myelomeningocele fight meningitis. The development of shunts for hydrocephalus in the late 1950s, and procedures to fix renal complications in the 1960s, contributed to a growing number of children with Spina Bifida surviving—and living fuller lives.


Insights | Winter 2013 | 800-621-3141

Even in the 1960s, after a revolutionary surgery was developed to repair lesions in newborns with Spina Bifida, some still questioned the ethics of administering life-saving care to infants born with Spina Bifida or other significant disabilities.

“A lot of disabilities don’t have the incontinence problem, so that was a very, very big victory for our community and our children,” Valiant said.

“That was why we thought there needed to be a national organization, to combat that thinking and to show that there was quality life ahead,” said Bonnie Valiant, who was among the small group of parents who helped found the SBA.

Mindful of the increasing importance of advocacy and participation in public policy, the SBA moved its headquarters to be closer to policymakers in Washington, D.C. and worked hard on political initiatives including, the passage of the Americans with Disabilities Act (ADA) in 1990, the Agent Orange Benefits Act of 1995, and folic acid fortification regulations in 1998.

In May of 1972, the New York Times published an article by Elaine Freeman called “The God Committee,” which challenged the medical community’s efforts to prolong the lives of those born with disabilities.

“We became quite aware that we needed to have a voice on the national level, politically. Other major disabilities had their own organizations, but we were the only one that represented people born with Spina Bifida,” Morrison said.

As shocking as it might seem today, such sentiments were not uncommon in the 1960s and 1970s.

In 1995, the organization united with other disability advocacy groups to protest legislation that would threaten the ADA.

Gaye Morrison, whose son, Matthew, was born with a severe case of myelomeningocele in 1970, remembered the article as a spark that moved parents to organize a national association.

Since the law took effect, the rights and opportunities available to individuals with Spina Bifida have increased, but Morrison and Valiant, who devoted 40 years to working tirelessly for the SBA, know there’s much more work to be done.

“We were outraged. The need to organize and have support groups for parents of children of Spina Bifida was there before the article came out, but that really provoked people into action, and that’s how SBA was founded,” Morrison remembered. Matthew’s doctors initially weren’t sure they could save him, or that he’d ever live independently, but the Morrisons, like many parents, fought for the best treatment and opportunities for their son. Gaye and her husband, Bill, were active in SBA from its inception, attending the first national conference in New York City in 1974, when similarly determined parents came together to establish the organization and elect its first officers. A member of the by-laws committee, Morrison remembered being called to a meeting at 12:30 in the morning to go over some more issues. “It was a very intense, passionate conference, because you had a lot of people from different backgrounds, with children of different ages, but we got a lot done,” said Morrison. In the beginning, the SBA was a collection of Chapters advocating for better care and treatment on a local level and providing support for families with infants affected with Spina Bifida. Chapters like the one in Dallas, which the Morrisons helped organize, met with neurosurgeons to lobby for more immediate surgeries on newborns and offered assistance—and a positive perspective—to families who received a grim prognosis from physicians. The Chapters and the national organization became more active in the public policy arena, beginning in the late 1970s when Mary Tatro sued the Irving, Texas school district so her daughter, Amber, who required clean intermittent catheterization (CIC), could attend school normally. “We worked hard to make sure our children could get the education they needed and interact with other children, and to arm our parents with as much information as possible before their kids started school,” Morrison said. Tatro’s case went all the way to the Supreme Court, which ruled in favor of Amber and other children with Spina Bifida, affirming that schools must perform related services, including CIC, under the Education of the Handicapped Act. Valiant considered it one of the most important steps in Spina Bifida advocacy and awareness, because it addressed one of the challenges specific to the condition.

“Now, we have treatments and education and socialization for our kids, but when it comes to adult housing and medical care, those are still big issues across the country,” Valiant said. “Some adults are employed and can drive but still don’t make enough to live on their own and support themselves, or could use a little help sometimes, and there’s nowhere for them to go if something happens to their parents,” she added. Morrison agrees. “A lot of the kids today who are getting excellent care are doing quite well, so there are going to be many more adults with Spina Bifida who want to live independently, and we need to find ways to educate and support them, and to encourage public awareness,” she said. Today, SBA provides resources and support for affected families nationwide as well as information about continued advocacy. The organization’s SB University® provides free webinars and information sessions for families and health care professionals, and the National Resource Center provides confidential resources and referral services. The SPEAK for SB program encourages individuals and families on how they can take an active role in advocating for the care and legal protections they need. Forty years after the first National Conference convened, SBA will take its programs on the road, hosting a series of affordable Education Days around the nation to make education and support accessible to more Americans living with Spina Bifida. “The needs will change as the population changes but there will always be people who have this disability and need a national voice, and the organization has become a very viable resource for them. It’s been an amazing process to watch it grow from a little group of moms and dads who knew nothing into such a force in the disability community,” Valiant said. As Morrison reflected on four decades of involvement with the Spina Bifida community, she proudly marveled at the accomplishments of children with Spina Bifida and their determined parents: “Children born with Spina Bifida have the most indomitable spirits I will ever know, and they are the bravest people you will ever meet. They’ve faced a lot, and they just don’t give up. They have so many more advantages that we didn’t have years ago, and with a little bit of support and a little bit of help, there’s no reason they can’t grow up to be independent, productive, happy individuals. Just never, ever lose hope.” Insights | Winter 2013