Talk with Alejandra Ospina, a sophomore at LaGuardia High School of the Performing Arts in New York City, and she’ll gladly tell you all about her solo in her school’s production of “Sweeney Todd,” the “funny looking” selection of boys to date, her overprotective parents and her career goals.
She’ll also tell you what it’s like to be born with cerebral palsy and to grow up using a wheelchair, but only to a point.
“It’s nice to gripe,” she says, “but after a while, you say, `I don’t want to talk about it anymore.’ In some classes, I don’t want to draw attention to the fact that I’m disabled.”
The 15-year-old would rather tell you about her plans for the future.
“I want to be lots of things,” she says. “I want to be an actress and a singer, and a journalist and a reporter, a radio DJ –“
In the course of her lifetime, what was once only imaginable has become more feasible for Alejandra and the 1.5 million U.S. girls with disabilities, thanks to the encouragement of mentors, peer groups and programs from Massachusetts to California that offer the opportunity to try everything from rock climbing to modern dance.
But girls with disabilities still face unique obstacles, starting with simply getting diagnosed. The Education Department’s Office of Special Education says only 31.5 percent of the 5 million children diagnosed with a disability are girls.
“Our studies indicate there may be an undercount among girls,” says Scott Brown, a research analyst at the office. “Boys have a greater tendency toward disability, but they also may have a greater tendency toward getting it noticed.”
Regina Snowden, founder of Partners for Youth with Disabilities, a mentoring program in Boston, says girls with disabilities confront the same myriad barriers to success that boys with disabilities do, but they also encounter sexist practices.
“They (girls) fare worse on all measures: have less education, are less likely to marry, are less often employed,” she says.
Unfortunately, they score quite high on one measure: the birth rate. A study conducted for the Office of Special Education showed that three to five years after high school, 41 percent of women with disabilities had given birth, compared with 28 percent of non-disabled women.
“It’s very painful to be confronted with the assumption that no person is ever going to love you,” says Harilyn Rousso, founder of the YWCA Networking Project, a peer and mentoring group for disabled youth in New York. “Having a baby is the quickest way to confirm one’s womanhood, to prove that you’re not asexual.”
The YWCA project encourages the use of birth control and is studying the quality of reproductive care for disabled women.
Other studies have noted the high rate of sexual assault on girls with disabilities, attributed to their exposure to a variety of adults, from van drivers to therapists, says Rousso, who recently conducted a pilot study in five New York City schools to see if that holds for sexual harassment as well.
Instead, she found that girls with disabilities do feel they have a higher exposure to harassment, but mostly from their peers.
“Often, the disability makes it physically hard to leave the scene, to report the harassment or even to see who harasser is,” Rousso says. She found the girls were more likely than not to confront their harassers by any means.
“One girl used her cane to smash the person,” she says. “I was impressed with their creativity.”
Rousso is wary that anxious parents may use her results to restrict their daughters.
“I don’t want to do that,” she says. “I’m eager to arm these girls with the tools they need to deal with these situations. Girls with disabilities are already overprotected enough.”
“Parental overprotection is a tremendous issue in the disabled communities, more so for girls than boys,” says Angela Perez, director of the Networking Project. She says that when the project began including boys in 1992, the girls noticed right away that boys their age seemed far ahead — academically, socially and emotionally — often because the girls had been sheltered from many activities.
“The girls were asking, `How come the boys go out? My parents won’t let me go,’ ” Perez says. “And the boys said `Well, mine let me go anywhere, if I just tell them where I was going.’ “
Alejandra can attest to this. “My parents use the fact that I’m a girl and that I have a disability to say, `Look at what can happen to a girl alone on the streets,’ and, `You can’t take care of yourself as well.’ I don’t argue anymore,” she says. “I’d rather just stay at home than cause an argument. But now, with my singing, they have to let me do more things.”
MaryBeth Gahan, 41, of Oak Park, Ill., remembers her school years as a time when career expectations for girls with disabilities were low and role models were scarce.
Then, a student in a wheelchair was considered a “fire hazard,” and even her mother doubted she would ever marry.
Gahan describes the day the principal of her special-education high school told her that her cerebral palsy made her dream of being a teacher impossible:
“Because my school didn’t have any teachers with a significant disability, I couldn’t say, `What about Mrs. So-and-So?’ ” recalls Gahan, a rehabilitation counselor. “I left and burst into tears in the hallway.”
Without a mentor, says Judy Panko Reis, head of the Health Resource Center for Women with Disabilities in Chicago, girls can grow up imagining that they will somehow grow out of their disability, or thinking that people with disabilities simply cease to exist as adults.
Even today, girls still have little contact with women who are out of traditional female roles and out of traditional disability roles, Rousso says.
Snowden hopes to change that with her Young Entrepreneurs Program, which pairs teens with a mentor and teaches them business fundamentals.
Mary Ann Gallagher, 16, a sophomore with spina bifida at Learning Prep, in Newton, Mass., never considered starting a business. Today, Mary Ann’s Beauty Supply company provides pocket change for the mall and practice at negotiations with wholesale suppliers.
“By creating their own business, they don’t have to deal with employment issues, they can create their own hours,” Snowden says. “They’ll be ahead of the game.”
Mary Verdi-Fletcher hopes to give girls with disabilities a gift just as precious: a moment to forget it all. Her dance company, Dancing Wheels, offers modern-classical dance lessons for both “wheelers” and “walkers” in Cleveland, Atlanta and, by summertime, Chicago.
“The dance is the one place that transcends your feelings about disability — you lose your disability while you’re performing,” says Verdi-Fletcher, the company’s principal dancer and a wheeler with spina bifida.
But of all the tactics to ensure that girls such as Alejandra go to college and pursue a career, disability-rights advocates say the most powerful has been mainstreaming, a recent trend that has returned more than a third of all disabled youth to the general classroom.
“We know that people with disabilities, particularly cognitive, progress a lot more when they’re in activities with non-disabled peers,” says Martha Jo Dennison, a former special education teacher who now coordinates programs to include the Girl Scouts’ 47,000 disabled members in troop activities, from camping to rock climbing.
“You can’t prepare them to be a productive member of society if you don’t let them be in society.”
The federal government has shown its support in recent years. The 1990 Americans with Disabilities Act helps create new opportunities in the workplace, and the 1991 Individuals with Disabilities Education Act encourages schools to provide the “least restrictive environment” to students with disabilities.
The American Federation of Teachers says the benefits of mainstreaming have been overrated and it puts a strain on teachers, but it’s hard to argue with Alejandra, who has felt the effects of inclusion firsthand.
“There are cases where not being mainstreamed helps a lot,” she concedes. “But if I had always been in special education classes, I wouldn’t be learning at the same pace, and I don’t think I’d be involved in all the activities I’m involved in.”
Alejandra knows there are still things that she might never do.
“But,” she says, “I’ve also done lots of things that I never thought I could do.”
