For Disability Activists, 3 Weeks In Oregon Is A Game Changer

Enlarge this image toggle caption Aparna Vidyasagar for NPR Aparna Vidyasagar for NPR

Until she came to the U.S. this summer, Wendy Beatriz Caishpal Jaco had never been able to board a bus.

Jaco, 29, uses a wheelchair, which buses aren't able to accommodate in her hometown of Ahuachapán in El Salvador. She finally got on a bus that could handle a wheelchair while attending a program called WILD — the Women's Institute on Leadership and Disability, held this summer in Eugene, Ore.

It's not that El Salvador ignores people with disabilities, she says. For nearly two decades, there has been a law designed to give people with disabilities equal access to jobs and transportation. "[The law] talks about adaptability, inclusion," says Jaco. "The problem is that there is no follow-up."

Jaco hopes that WILD will give her the tools and training to further her role as a champion of disability rights and make a change in her country. She is one of 21 women with disabilities from around the world who attended the three-week training program, organized by Mobility International USA. This year's event, the ninth since its inception, ran from July 13 to August 3.

The women lived with host families and experienced daily life in the city. For many, it was the first time they have spent time away from their families. As part of team-building activities, they whitewater rafted, climbed ropes and played wheelchair rugby.

"I was able to move not only from my comfort zone, my stress zone and my panic zone," says Gina Rose Balanlay of the Philippines, who was blinded in an acid attack about 10 years ago.

And through a series of workshops and seminars, the participants were taught how to find solutions for issues faced by disabled women and girls in their countries — from health care to education.

NPR spoke with Jaco and women from Burundi, the Philippines, Romania and Vanuatu to understand what it's like to be a disability activist in their countries.

Almost Invisible

Not having access to infrastructure and resources makes it easy for persons with disabilities to simply disappear, says Raluca Oancea, 37, a volunteer coordinator for a youth organization called ADAPTO in Constanța, Romania. "There are not enough ramps, no elevators and no public toilets, no accessible trains or buses [in Romania]."

"You cannot see so many people with disabilities on the street because they cannot leave their homes," says Oancea.

And even when people with disabilities are out in public, they may face a harsh reaction, says Joyce Peter, 33, who works on disability rights with the group World Vision in Port Vila, Vanuatu. She spoke of one experience of riding the bus with the crutch she uses because she was born with one leg. "A person with a disability will hop up in a bus [and] the bus driver will say 'you are blocking the space', " she says, mimicking a grimace. "So, there is no space for them."

Jaco has made some progress in improving park facilities so that people in wheelchairs, or those with other disabilities can use them. Her organization, Ahuachapán Sin Barreras (it means "Ahuachapán with no barriers" in Spanish) has helped update two existing parks in her hometown and ensured that the new parks in the city are "100% accessible."

This year, they organized pool parties in those parks for children with disabilities. "That's where I have seen the smiles of children who have gotten into a pool for the first time in their lives," she says. Videos from the events show wheelchair-accessible pathways and shallow pools with wide steps.

Changing What Others See

The women also talked about how people in their countries view those with disabilities. Some people are curious, others choose to ignore and some express disgust. "Back home [in Vanuatu, some people] will be standing and staring at you like you are a different being from another planet," says Peter.

Oancea says she's trying to change attitudes about people with disabilities in Romania, starting with its young people. "We are going to children because we need to change the mentality from an early age," she says. Through her organization, she teaches youth how to conduct themselves in front of people with disabilities, for example, and how to arrange their homes so as to make their friends with disabilities comfortable.

Seeing people with disabilities in the mainstream can also help overturn stereotypes. Gina Rose Balanlay, 36, is a disability activist in Bacoor, a city in the Philippines. In 2014 she worked with her organization, Nationwide Organization of Visually Impaired Empowered Ladies, or NOVEL, to ensure that two blind models walked the runway during the Philippine Fashion Week.

Balanlay wanted to show her country that blind women could "walk with dignity, freedom and independence with the use of our canes," she says. The event was featured on several news channels and trended on social media. A documentary film was also made about one of the models.

Education For All

Providing a quality education for children with disabilities is still an issue, according to the women.

In Vanuatu, Peter says that sometimes the parents are not on board. "Children with disabilities, their parents think, "No, they won't go to school. They have no place [to go]." So, they are nothing," she says.

She and her team spent three years of community outreach telling parents that their children can attend mainstream schools. To help achieve that goals, in 2016, she created a partnership between her organization, World Vision, and the Ministry of Education and Training.

In Burundi, Sidonie Nduwimana, 30, says a shortage of sign language interpreters in rural schools means that children who are deaf struggle because they cannot follow what their teachers are saying and soon fall behind.

Nduwimana, who herself is deaf, has made some progress through her organization, the National Association of the Deaf of Burundi in the port city of Bujumbura. She is working to secure funding for sign language interpreters in those rural areas. She's also established a school for deaf children. "The government gave us a building [to house a school] and we won that fight," she says. Now she's "fighting with the government" to get more properties for more schools.

Fighting For Health Rights

Some of the activists are working to make sure people with disabilities get the health-care they are legally entitled to — and are not discriminated against.

Jaco, who trained as an attorney, has seen firsthand the potential harm that can occur if people with disabilities are not aware of the law and their rights.

"When my first child was born, the doctor came up to me with a form and said, 'You have to sign here so we can sterilize you.'," she says. Jaco believes the doctor's view was that persons with disabilities should not have children. She refused and told the doctor that she would hold him personally responsible for anything that happened to her.

"I was able to defend myself because I knew about my rights," she adds. "And I ask myself, what happens with people who do not know of their rights, who come up to the same hospital and are faced with the same situation?"

She provides free legal guidance for people with disabilities through Ahuachapán Sin Barreras, educating people about their legal rights, including those that protect their health.

One of Nduwimana's goals is to get funding for sign language interpretation services in hospitals so deaf women can receive information and communicate with their health care providers, especially during pregnancy.

She also highlights the lack of information surrounding HIV and reproductive health in Burundi.

A Different Future

On the final day of WILD, the participants worked to create their own leadership training programs for their home countries.

"I believe that I can do more and more than that, I should do more," says Oancea.

After three weeks in Oregon, the women were excited to go back home but not to return to the status quo. "We need to get back to reality," says Jaco. "But we are going back to change our reality."

Sherilyn Compton, Christine Kanta, Steven Stubbs, Andrew Weaver and Cecelia Mihaylo served as sign language and Spanish language interpreters for this interview.

Aparna Vidyasagar is a freelance science journalist based in Portland and has written for PBS SoCal, Live Science, Mental Floss and Science. You can follow her @AparnaVid.