It’s a sunny day in Eugene, Ore., and I’m sitting with a group of French-speaking women with disabilities, each from a different country. We’re taking a break from a long day of workshops on fundraising and grant writing at the Women’s Institute for Leadership and Disability, held by Mobility International USA. I don’t speak a word of French, but this group seems fun and inviting, so I join them. Occasionally one of the women who also speaks English takes pity on me and translates the conversation. Otherwise I just nod my head and smile when they smile.
Through the interpreter I meet Eliane Mutesi, a tall, elegant Rwandan lawyer, director of the disabled women’s department for Action for Promotion of Local Initiatives for Development. Her group provides counseling to people with disabilities and teaches them how to make products they can sell, such as soap.
“I’ve learned a lot here about making things accessible, self-defense and that you can be pregnant and disabled. I’ll pass on the information and work with others to make changes,” says Mutesi, who has a physical disability due to childhood measles. Her group operates on a shoestring budget and it will most likely be a while before that changes. “We don’t have much money because of the genocide. There are a lot of people with disabilities and little resources,” she says matter-of-factly. There is no emotional weight on the word genocide that I can pick up.
One of the other women taps Mutesi on the shoulder and the women launch into French, leaving me with my rather American thoughts of what it means to survive what ought to be harmless childhood diseases and impossible atrocities.
I’m in culture shock, and I haven’t even left the States.
In a sense, culture shock is what Mobility International USA is all about. MIUSA encourages Americans with disabilities to travel to other nations, and then also encourages people with disabilities from around the world to come here to our country and experience our society. And from that exchange, we not only learn, we grow.
Accessing the Nations
This year’s WILD, which took place in August, was the third since 1995. As with the previous two, women came from around the world to attend a three-week program that allowed them to explore what is possible in their lives, their families, the organizations they lead and the nations in which they live.
One unique feature of WILD is the variety of workshops arranged for the women — called “delegates” — to participate in. Of course there were workshops on advocacy, media and grant writing. But the women also went white-water rafting, studied self-defense, learned the basics of health and wellness, and ran an intense challenge course. The challenge course included a giant rope swing called “The Falcon” that pulled the delegates up to the top of a tall Oregon fir and then dropped them. “Like a bird,” Ukei Muratalieva told local media, laughing. “A very panicked bird.”
Muratalieva, a young woman with cerebral palsy from Kyrgyzstan, is one of only two volunteers with disabilities with the Disabled Children’s Parents’ Association back home. One point WILD staff made over and over is that women with disabilities need to be in leadership positions of such organizations. “If you can fly in The Falcon, you can lead a group back home,” is a typical type of statement made in workshops.
“It really takes everything to build your own self-confidence. The river rafting and the development workshops and the camaraderie all change your conception of what you can do as women with disabilities,” says MIUSA director Susan Sygall, a wheelchair user for almost 30 years. “We selected these participants because they have a commitment to changing the lives of women and girls with disabilities. They’re the ones who will do what they do to push through, who won’t give up, who don’t let the barriers get them down.”
Whether the barriers be boulders in the McKenzie River — where the rafting took place — or repressive societal norms “back home,” Sygall and her staff have faith the women they choose to attend WILD can make a difference. “We have two mottos — Challenge Yourself and Challenge the World,” says Sygall.
MIUSA was born 25 years ago when Sygall spent her first year in grad school as an exchange student in Bristol, Australia. She hitchhiked through New Zealand, traveled in Malaysia, Indonesia and Thailand. “I thought, ‘This is such an incredible experience, why aren’t more people with disabilities doing this?’ And that was the starting point of the program.”
Back in the states, Sygall teamed up with friend and fellow University of Oregon grad student, Barbara Williams-Sheng, and they plotted a peaceful revolution. “We shared a desire for friendship, understanding and peace among all peoples of the world,” says Williams-Sheng. She’s proud of the role MIUSA’s played in alleviating the isolation of people with disabilities worldwide. “Ultimately MIUSA has been instrumental in gifting the world with the beauty and wisdom and compassion of a group of people who had been kept from their full potential because of physical and attitudinal barriers.”
Sygall and Williams-Sheng worked toward two simultaneous goals — to get exchange programs to include people with disabilities, and to encourage people with disabilities to take part in the newly-inclusive programs. But soon it wasn’t enough to just get people to visit each other’s countries. Sygall felt compelled to address human rights issues that she observed around the globe, such as why, in already impoverished nations, women with disabilities tend to be the poorest of the poor. So when she was awarded the Kellogg National Fellowship in 1994, she used the grant money to fund the first Women’s Institute on Leadership and Disability program.
When asked why MIUSA is located in Eugene rather than someplace where more people live, like Los Angeles or Washington, D.C., Sygall’s answer is simple, “Barbara and I were grad students at the University of Oregon.” Sygall says Eugene’s small size means MIUSA has a good relationship with many local small businesses and the local U.S. congressman, and the mayor even comes out for opening ceremonies.
“Also, Eugene is one of the best cities in terms of access. For example, the buses were 100 percent accessible long before the ADA because the community is proactive,” says Sygall. The bus company provides WILD delegates with free bus passes, which can be a life-changing experience for a wheelchair user in a nation that is largely inaccessible. “For a lot of these women, it’s the first time they’ve taken the bus,” says Sygall. “Often they’ll say, ‘Oh, I can go where I want and nobody stares at me.'”
Heng Lee Chin, a woman with osteogenesis imperfecta from Malaysia, is one of the delegates wowed by Eugene’s transit system. “Where I live it’s difficult, totally inaccessible. We don’t have buses or trains we can go up in a wheelchair.
Of course, Chin does not want to be seen as critical of her nation. “It’s not really easy being a woman in Malaysia, but it’s easier than in other nations,” she says. “We are not stifled in any way, but it is still very hard for us.”
We’re the Same … Just Different
The third week of the WILD program this year took place at a campground outside of Eugene called Camp Serene. Delegates and guests slept in cottages while the WILD staff and those who have participated in MIUSA activities before pitched tents. The campground is surrounded by easy trails, a few of which are wheelchair accessible, and the required giant communal campfire is located midway between the cabins and a decent-size pond, which is circumnavigated by the trails.
There isn’t a lot of wildlife that makes itself visible, but on one short hike, Samia Al Sayed [see sidebar], a polio survivor from Syria, and I saw two red-headed woodpeckers making a ruckus up in a tree and dropping bark down on unsuspecting critters. Well, technically what we saw were most likely pileated woodpeckers — they were large and noisy and had red feathers on their heads. We made “Woody Woodpecker” noises, giggled, and made our way back to the camp. The cultural differences between Syria and the United States are formidable, but they melted under the silliness of the “Woody Woodpecker” call.
Back at a picnic table, Saara Hirsi, from Somalia, appoints herself my cultural translator. Hirsi, who has a visual impairment, has lived in Portland for a few years now, and she has learned a few things about us that she tries to explain to the other women at the table. We’re talking about sex, a hot button issue no matter where you’re from. “Oh,” says Hirsi, helpfully, “here in the U.S. if a woman is with a man who is not her husband, people don’t call her names on the streets, and she will be treated OK — she won’t be beaten.”
A major topic of the delegates’ conversations is marriage and children. Many of the delegates have reluctantly accepted they’ll never have husbands because of how their cultures view women with disabilities. In fact, many of the delegates were surprised to find out that they can actually get pregnant. These delegates meet women like Ishrat Fazal from Pakistan, who is married and has children, and they begin to wonder again about whether it is just a dream or if they can have their own children, too. Fazal, who had polio as a child, has three young children and we tease her unmercifully about the housekeeping that’s waiting for her back home.
A few of the delegates are staying with families where the couple isn’t married, which is especially difficult for delegates from religiously conservative regions such as Latin America. “They all handled it very respectfully,” says Cindy Lewis, director of programs for MIUSA. It’s not a goal of WILD’s to get women from other nations to agree with how some Americans choose to live their lives. Rather, the home-stay part of the program allows the delegates the experience of spending time and getting close to people who live differently than they do.
“We look for home-stay families that are representative of our community and we do our best to match WILD women with the family based on information that we know about them,” says Lewis. So this year, for example, based on dietary and access requirements, a Muslim woman had the opportunity to stay with the family of a rabbi, and the Muslim delegates were able to ask as many questions as they wanted to about Judaism — one of the Muslim women even attended Temple with the family. Who knows what ripples of peace may spread through the Middle East as a result of such friendships?
Food, too, is on the minds of many WILD delegates. Fazal, who taught herself the rudiments of English in less than two weeks so she could attend, says she especially suffers. “This food is no good for me, it is killing me,” she says, mournfully. Her home-stay family did take her out for Indian food one night, but it wasn’t much help.
“We learned our style of eating lunch, which is usually cold, is hard for many,” says Lewis. “They feel their health is impacted if they don’t have something hot at each meal.”
And then there’s the issue of tofu and meatless-meat. Eugene has a large population of vegans — vegetarians who don’t even eat cheese or eggs — and since WILD works to have typical Eugene home-stay families, this means a delegate landed in a vegan household. “This time the delegate that stayed with them was very good-natured about that. She thought it was interesting and amusing,” says Lewis, who then adds: “We’d make sure when we went out with her we got her a burger.”
The reason WILD’s last week is spent on a campsite is so both delegates and funders can be brought together as part of the Gender, Disability and Development Institute: Partnering with International Foreign Aid Agencies. “We worked a year and a half to get funding for this program from groups like the Global Fund for Women,” says Sygall. “Those organizations are coming here to spend time with the women delegates to learn how to be inclusive.”
MIUSA has spent decades cultivating close relationships with aid agencies, so most of the funders are out camping with the delegates and, until they give their names and titles in workshop, it’s hard to tell who works with MIUSA, who’s a delegate and who’s a funder. It’s not unusual, for instance, to see the representative from Mercy Corps sweeping the dining hall floor.
When the women have come back from their break, Sygall kicks off an afternoon of workshops on how delegates can set up meetings with funders back home in their own countries. “Development people want to make the world a better place — they’re good. People with disabilities want to make the world a better place — we’re good,” says Sygall. “We have to get the two together.”
The best way to describe Sygall’s leadership style is “laid-back, but busy.” She’s a delegater and although, or perhaps because, her staff has planned every detail of the program out, she’s generally content to allow events to unfold around her. But she’s always watching.
The workshops are pretty-much advocacy 101 — how to talk to the media, how to research laws and policies, how to make entities accessible. But instead of focusing on how their groups can make the local coffee shop accessible, these women are studying how to change their entire nations. The scale of what they are attempting is staggering. And every woman here is an accomplished leader back home — she’s here because she passed a detailed application process.
Bessma Mourad from the Global Fund for Women sits in the sun telling the delegates how to apply for funds with her organization. It’s a simple process, really — GFW doesn’t want a lot of paperwork, doesn’t want a long narrative, or any of the usual stuff requested by funders. A paragraph will do.
Hands pop up and a deluge of questions in four languages pours forth. “Please stop! I can’t keep up,” cries out the Russian translator, just about every five minutes. The Spanish, French and American Sign Language interpreters, too, ask for mercy. Everyone laughs and tries to slow down … but it’s too exciting. Can the money be used for a new building? How about travel expenses, or setting up our own WILD program back home?
Can the money be used to support a group of women in Syria? Mourad draws in her breath and breaks the news that because the U.S. has sanctions against Syria, her U.S.-based organization can’t accept applications from women who live there. Sayed, the Syrian delegate, nods her head, having anticipated the answer. But it’s hard to understand how an advocacy group of women with disabilities that passes out wheelchairs to children could possibly be seen as a threat to the U.S. government.
Other workshop leaders are from USAID, which is our government’s official aid organization; Mercy Corps, which works in societies recovering from natural disasters, war or other social upheavals; Trickle Up, which provides very small grants of seed money to the most impoverished individuals so they can start small businesses; the Hesperian Foundation, which publishes how-to books for disabled people who live far from medical services; Whirlwind Wheelchair International, whose director, Ralf Hotchkiss, demonstrates wheelchair maintenance by dismantling and reassembling his own chair; and the American Friends Service Committee, which is the aid arm of the Religious Society of Friends — better known as “Quakers.”
Throughout the week I’ve wondered if it’s dangerous to teach women from other cultures American-style advocacy — and then send them back home, where acting like us might get them hurt, or worse. But I’m assured most international aid organizations take this into account.
“As a peace group, American Friends Service Committee has learned that the ways to address a problem can be found in the community where it exists,” says Linda Lotz, the Friends representative at WILD. “Sometimes lessons from one country can provide an idea for how a problem can be solved, but what works in one country may not work in another.”
For example, Lotz talks about rape and domestic abuse. “In the U.S., women who are raped talk to each other to work through the trauma, but a woman in Afghanistan, if she’s been raped and talks about it, that can have serious consequences — loss of husband, children, status,” says Lotz. “So we have a program called ‘focusing.’ You go within yourself using a scripture that makes sense in your culture, maybe the Koran, to guide you to that place within yourself. The method is universal, but the scripture is from Afghanistan.”
Sygall and Lewis lead the group into role-playing activities, where the delegates “pretend” to come to a meeting with an international aid group, introduce themselves, talk about their organization and the programs they’d like to be funded. Of course, this isn’t really role playing, since these women are meeting with real-life funders. But the idea is if they can speak to Mourad here, at this campsite in Eugene, they can meet with another rep of her group back home and — more importantly — apply for funds to run their programs.
Over and over again WILD staff and funders ask the women variations of the following questions: What do you want to do? How can we help you do it? Who are your natural allies? How can we help you get money?
During the breaks the WILD staff and funders huddle together to fine-tune their presentations. “We’re constantly reassessing, ‘do this or this,’ ‘where are they at,'” says Sygall. “We might say the energy’s low, let’s juice it up. Or, where are they emotionally? We can’t predict what will happen. We motivate and persist.” Sygall uses the word “persist” a lot. Her persistence pays off, as MIUSA’s message is felt bone-deep by many of the delegates, even though it has only been three weeks.
Over the next break some deaf people are attempting to teach wheelchair users sign language, just for fun, when Wendy Padilla from Honduras suddenly gets serious. “I didn’t know there were groups like this. People here are so strong and inclusive. I just want to catch up,” says Padilla to a fellow delegate. “We have laws in Honduras, but don’t do much about it. We don’t follow them, we don’t honor them.”
And so starts another WILD peaceful revolution.
The WILD Women:
San Salvador, El Salvador
Jenny Chinchilla, 31, is proud to announce that she graduated from junior high this past May and begins high school this year. It’s jarring to hear this, since Chinchilla, an intelligent and articulate young woman, comes across as college-educated. When told this she nods, says this is because she is well-educated and has nurtured a passion for learning her entire life.
“In El Salvador we don’t have a culture of reading,” says Chinchilla. “We can read, but many people can choose between watching television or reading a book, and they choose TV. It’s very strange to find people who read and study by themselves. But I eat books like food.”
This explains why when Chinchilla found she was eligible for a program to complete a formal education, she was thrilled — even though the classes were held on the second floor of an inaccessible building. “For three years every Saturday in the afternoon I’d find someone — ‘Honey, please, help me get up the stairs,'” she says. For the next three years, Chinchilla will attend high school classes in the same building, up the same stairs, every Saturday.
Chinchilla wanted to go to school as a child, but her family couldn’t afford a wheelchair, and besides, the school was far away. “My mother would have had to carry me in her arms,” says Chinchilla, who has spina bifida. Her mother did the next best thing — she home-schooled her daughter whenever she found the time. Chinchilla’s own drive for knowledge did the rest: “When my brothers and sisters came home from school I’d ask, ‘tell me what you learned today?’ — and I’d do their homework alongside them.”
Not many El Salvadorans with physical disabilities are given educational opportunities, and Chinchilla is grateful for her mother’s support. “Some would have said, ‘My son or daughter has a disability, why should they learn?’ My mother felt sorry that I couldn’t go to school to learn. She pushed,” says Chinchilla. “During those years I learned self-discipline. And I matured a lot quicker than the other kids.” As an example of her early maturity, Chinchilla tells how at age 10 she taught herself how to crochet and draw, and then sold crafts to help support her family.
Seven years ago Chinchilla met the woman she calls her second mother, Gladis Ramos. Ramos, who is quadriplegic, was the first person with a disability other than herself that Chinchilla ever met. “Gladis encouraged me. She told me, ‘Jenny, you have to study, you have to prepare,’ and she told me about the wonderful world of disability [advocacy].” With Ramos’ support, Chinchilla applied for a scholarship to learn English and also started the long road toward her high school diploma.
Chinchilla, Ramos and a third woman named Angelica Monteague, founded Sendas Foundation three years ago. Sendas — which means “pathway” in Spanish — is a Christian-based organization that operates much like a center for independent living. Operated by and for people with disabilities, it offers peer counseling and skills training and advocates within the community on disability issues. Unlike CILs, and in keeping with its mission, Sendas also focuses heavily on nurturing the spirituality of people with disabilities. “In El Salvador we don’t have the opportunity to organize activities for people with disabilities. There are lots of organizations for people with disabilities, but not by people with disabilities, especially a woman with a disability. These other groups don’t ask for suggestions. They say, ‘Yes, we work for people with disabilities, but we don’t include them,'” says Chinchilla, elaborating on why Sendas was founded. “We are responding, trying to meet that need.”
Like many other delegates to WILD, Chinchilla made sacrifices to be in Eugene, Ore., where the program was held. Chinchilla plays on San Salvador’s first women’s wheelchair basketball team, which took the Central America championship last year, “and we are preparing for our second Central America championship. It’s happening right now, but I got permission from my team to be here,” she says with a sigh.
Was coming to WILD worth it? “Yes! I have a lot of ideas and feel more strong, more able to get women with disabilities together and do projects. We are an important part of our society. I learned that I have to teach my society, to explain and show that together we can work for the development of our society. I learned I am not a problem for my country, I am a solution.”
* * *
Samia Al Sayed,
In the Eugene, Ore., campsite where the Women’s Institute on Leadership and Disability is being held, there is often a small knot of Americans gathered around Samia Al Sayed, and they ask her the same questions about how she dresses. In fact, some Americans are so riveted by Sayed’s head scarf that, for once, the mobility equipment she uses due to childhood polio goes largely unnoticed.
Sayed, a good-natured computer engineer from Damascus, Syria, wears a head scarf and keeps her entire body covered, even when it’s hot outside. Is Sayed, 39, forced to cover up, as we hear women in Afghanistan were forced to do by the Taliban government? Sayed laughs this off, saying no, of course not. “I’m a practicing Muslim, and I choose to wear the veil, but this is my personal choice. Many women in Syria don’t veil.” She adds that even though the majority of Syrians are Muslims, Syria is a secular nation, with people of all faiths enjoying the same rights and responsibilities.
By now Sayed has heard from American women that she should feel oppressed by her headscarf, but she insists it’s not true. For her, how she dresses is simply an outward sign of her strong religious beliefs. “It gives me the strength to deal with my disability. God gives me the strength to take everything easy,” says Sayed, who had polio when she was 18 months old.
Polio’s not common in Syria, but Sayed had childhood asthma and so couldn’t receive the vaccine. “I spent most of my childhood getting operations,” she says. “I even went unaccompanied to France for a year when I was 7, by myself. It was a bad time for me. I was a child, and when you are a child, you really need someone with you.”
Back home in Damascus, Sayed’s father, a teacher, decided she should get an education. “He gave me the strength to study hard. He noticed I have something in my mind, that I’m clever enough,” says Sayed. “My father was strong, a disciplinarian. Father is father, and we had to listen,” chuckles Sayed. And so, unlike many other Syrian children with physical disabilities, Sayed went to school.
Her grades were good, and with her family’s support, Sayed continued on to college. “Many women in Syria have a college education, more so than men,” says Sayed, IT manager for Assad University Hospital in Damascus. “Women get professional jobs — physicians, professors, managers.”
Sayed doesn’t like to talk a lot about what it’s like to have a disability in Syria, but she does tell the story of her 1998 marriage. “As a disabled woman, my family didn’t think I had the right to get married. It’s not my fault that I have a disability — I have a lot of skills,” says Sayed. She fell in love with a man who uses a wheelchair and fought to marry him. “My family did not think my choice was great, but I insisted and went ahead with it. It only lasted four months.” She won’t talk poorly of her ex-husband, but simply says the problem was not that he used a wheelchair, and implies that he was cruel.
Sayed is proud of her career, and works to ensure that other Syrians with disabilities receive the same opportunities she did by volunteering with the Japanese International Cooperation Agency’s community-based rehabilitation programs. “With JICA, I help disabled kids in the villages go to school and get educated,” says Sayed. She’s also a gifted fundraiser, utilizing her many contacts to raise monies JICA uses to buy medical equipment, treatments and seed money for disabled Syrians to start their own small businesses.
Sayed’s volunteer work led her to MIUSA, and even though her application for WILD was accepted rather quickly, her visa application was rejected twice. MIUSA helped her get a last minute visa, but because of the delay, her airfare rose to $2,000.
Sayed’s Syrian friends thought she was crazy for wanting to come here at all, fearing for her life. “All we know about the U.S. is via our local media, or the politically targeted U.S. overseas media, which do a great disservice to America and its people,” says Sayed. “I am glad I went after my heart, and came over. I learned the American people and the American government are very different.”
* * *
Teuta Halilaj holds court in a corner of the campsite where the Women’s Institute on Leadership and Disability is being held. She has transferred out of her cherry-red wheelchair onto a picnic table bench, where in the midst of much laughter she’s applying make-up and plucking the eyebrows of fellow delegates. “This is a fundraiser for my group — one million, in American dollars,” she says and winks.
If this group of 26 women from around the world has a jester, it’s Halilaj. She enjoys entertaining, making people laugh. Unless she’s telling sad stories, in which case she still enjoys entertaining. And she switches from one to the other with subtle quickness.
“You see me from the outside and I look happy,” says Halilaj, 37, a T9 paraplegic and geography teacher from Tirana, Albania. “I encourage myself, come on, you are alive and there is only one life. It’s really up to me, this life.” But she says, don’t be fooled. No one is always happy.
Halilaj is in the minority among WILD delegates, one of the few that became disabled after she was already an adult. She feels this sets her apart.
“This is completely different for someone who is born with a disability and someone who hadn’t had it all her life. The one born with a disability, she doesn’t know what normal life was, didn’t enjoy life without a disability. For me, I know. I am now a totally different person. My old life is gone forever.”
After Halilaj’s accident 12 years ago, she offered her husband a divorce, saying, “I didn’t want a bad ending,” which he took without hesitation, although she kept custody of their son, Arnold, who is now 13. She calls her life at that time a bad dream from which she could not wake.
“I remember once I was on the beach watching a Greek boy who uses a wheelchair, and he was enjoying the beach,” says Halilaj. “And there was a nice girl next to him and he said, ‘Oh, that’s my girlfriend,’ and I didn’t believe him.”
Halilaj confessed to him that she wanted to die. “He told me, ‘You will live, you will learn, you will adapt.’ And now,” she says, “my mind goes back to him and says he was right.”
There isn’t much in Tirana in the way of infrastructure, let alone accessibility. “Albania is a small country with a lot of problems,” says Halilaj. “What I know for sure is that I want to take back to my country a piece of heaven I found in Eugene. Everything here is perfect — the buses, the stores, the restaurants, the toilets. I think in all my life — if I gathered all the time in the last 12 years I’ve been outside, it doesn’t match all the time I’ve been outside in the last three weeks.” There’s only so far you can go on the streets in Tirana before you hit a pothole.
Also, there is the lack of opportunities for women with disabilities. “Albanian women were discriminated against for many years because of the communist regime, and Albanian men don’t like women to be the boss. But the good thing is we have a higher percentage of women than men in university,” she says. “They work, and things are improving for women. But this is not the same for disabled women.”
Take Halilaj’s profession, for example. “There are no facilities for me to teach in public schools and there are very few disabled girls who study in high school or college, so how can I teach? It’s a paradox.” She teaches at a private school, where she is friends with the director.
Halilaj, a member of the Albania Disability Rights Foundation, has a plan that she hopes will improve her nation. “I am going to do a workshop on what I learned here with MIUSA. I will do a WILD in my country,” she says. “And then I want to do a study on employment of disabled women who have different skills. Some can knit, some can do computers. How can we employ them?”
Halilaj’s verve and sense of the dramatic carries her through. “I’d walk down the streets in Tirana and the people who know me, they would cry for me, ‘Oh Teuta!’ and I would cry with them,” she says. “And then I thought, why do I have to cry? I am still Teuta. I smile now.”