The lyric that is synonymous with the easy-breezy beach lifestyle of Rio de Janeiro refused to stop looping in my brain as I prepared to take part in a cross-cultural exchange between disabled athletes in Chicago, Rio de Janeiro and Sao Paulo last spring:
“Tall and tan and young and lovely, the girl from Ipanema goes walking…”
I was part of a WorldChicago-funded group of disability advocates and disability sports professionals taking part in a first-of-its-kind program aimed at promoting a mutual understanding of disability rights and advocacy using the platform of the Paralympic Games and Paralympic sports. The first half of the program brought a group to Rio and Sao Paulo for 10 days; the second brought Brazilian athletes and disability sport professionals to Chicago.
WorldChicago works with the U.S. Department of State and embassies around the world, acting as a liaison between approximately 1,000 international visitors each year, according to Executive Director Peggy Parfenoff. The nonprofit’s mission, to promote mutual understanding and appreciation amongst cultures through citizen-based diplomacy, is furthered through exchanges such as the one between Chicago, Rio and Sao Paulo. “This was a unique opportunity to learn more about the disability community, disability rights and the sports movement in Brazil,” says Karen Tamley, commissioner of the Chicago Mayor’s Office for People with Disabilities.
The trip began in Rio, where we were hosted by Gustavo Carvalho and ANDEF (Associação Niteroiense dos Deficientes Físicos). Founded by Joao Bautista Carvalho and Dr. Tania Rodrigues, ANDEF was the original home of the Brazilian Paralympic Committee. Its grounds include a pool, gym, track, fitness facilities, medical services and administrative offices. ANDEF hosts trainings for developmental Paralympic athletes and will host pre-Paralympic camps for delegations from around the world in 2016.
In one of our first meetings, we heard from Niteroi Alderman Rodrigues, the first Rio state legislator with a disability. She says that Brazilians are constantly struggling to feel like citizens in their own country, and that she feels like a different person when she visits the United States. “Every time I go to the United States, I feel like I am a full citizen. I see the difference in accessibility there.”
Even with that disparity, however, Tamley pointed out how many Brazilians with disabilities were in elective office — four women with disabilities are Rio state legislators alone. “These individuals were supported by the disability community and are not just elected officials that happened to have a disability. This is something we would like to see more of here in the United States.”
One of the highlights for the entire delegation was participating in the day-long conference on disability advocacy and sport issues held at the Rio state house. Originally planned as a small dialogue with 10 or 20 people, it morphed into an all-day event organized into three panel discussions and attended by a who’s who of Brazilian government and disability advocacy.
Chicagoans got to highlight U.S. and Chicago-based efforts to improve accessibility and advise Brazil on how to leverage the Paralympic Games to improve accessibility and conditions for people with disabilities around the country during the seminar. Brazil highlighted its “Living with Limits” program, a $7.6 billion initiative aimed at improving access to education for Brazilians with disabilities through provision of accessible transportation and barrier removal, as well as plans to leave an accessibility legacy through the Games. Chicago disability advocate Stephanie Kanter said participating in the conference that day with a full house of community and civic leaders, felt “like I was bearing witness to a shift in the country’s perception and acceptance of people with disabilities.”
We got to talk to some of the people on the front lines of disability advocacy at the Centro de Vida Independente (CVI-Rio), as well. There, we learned more about the lack of access around Brazil, which keeps people with disabilities from participating in even the most basic aspects of life — work, recreation, civic life. Both Kanter and Tamley found that the struggles for disability rights in Chicago and Brazil are much the same, though the attainment of those rights is far greater here in the United States. “The need for basic accessibility in city infrastructure, transportation and housing … the need for meaningful employment, quality education and the rights to live outside institutions, were the same issues and struggles as we have in the United States.”
Though Brazil has over 215 articles in its constitution, including articles that specifically address disability issues, according to everyone we talked to or heard from, there is still no meaningful access for or participation by people with disabilities. “We have beautiful laws,” said Alderman Rodrigues, “but no enforcement.” This was a refrain we heard time and again.
“The United States is much farther ahead in terms of accessibility of infrastructure, public transit, and access to public accommodations,” says Tamley. “The issue in Brazil seems to be enforcement of the laws they do have. Honestly, enforcement — whether legal through the courts or changing public opinion through media or public protests — has really made our rights a reality in the United States.”
Kanter adds, “I think there is an assumption that other countries are far behind the U.S. when it comes to disability — integration, access, rights. But nothing is black and white. While we are ahead on the spectrum of some of these issues, Brazil is ahead of us on others. Our battle for our rights here at home is far from complete. We have a lot to learn from others.”
Learning From One Another
One of the areas where the United States can learn from Brazil is in the focus on holistic delivery of services and inclusion of people with disabilities in government programs. Disability sport, social and health services are offered through one agency in many cases, something we don’t see in Chicago. “Social services in Brazil seem to focus on providing a variety of services — educational, arts, physical activity and sports, medical services, dental care — under one roof,” says Tamley.
In addition to the mix of social services, Cindy Housner, executive director of the Great Lakes Adaptive Sports Association, thinks Brazil’s Paralimpiadas Escolares are something our nation can learn from. “They bring 1,300 young people with disabilities together to compete in Paralympic sports and use that to identify and develop talent. What a great model!”
Participants agree that they came away from the exchange with some newfound understanding of each other, and of themselves. Tom Daily of GLASA was surprised when he found out how alike we really are. “It was an awesome opportunity to exchange ideas.”
Sandra Tello-Fernandez, one of the Chicago-based youth participants, was amazed to learn how limited accessibility can be in Brazil. “I asked my friend Italo ‘what happens if you want to get in a building but it doesn’t have a ramp?’ He laughed and told me, ‘I don’t.’ After that I realized how easy we have it here and how much I take for granted.”
Sileno Santos found it incredibly easy to get around Chicago compared to Sao Paulo and elsewhere in Brazil. “We didn’t have problems taking the train or the bus, or getting around on the streets, even for people using wheelchairs.” Though he has been to other American cities before, Santos says, “I think Chicago is the most accessible city I’ve ever been to.” Taiana Lopes, an amputee as a result of bone cancer, agreed. “It’s a beautiful city, very accessible.”
Raquel Ponchio, a physical education teacher and coach in Brazil, contrasted the life experience of people with disabilities in the two countries. “I liked being in a town [Chicago] where people with physical disabilities have autonomy in their lives.”
Youth participant Dan Suero admits he came into the trip with a lot of stereotypes and assumptions about Brazilians. “I started out expecting the Brazilians not to know a lot about America, or how to speak English,” says Suero. “I was wrong!” He was surprised by “the energy they brought with them. It radiated off of me! Even strangers that crossed their path were immediately smiling!”
Santos, sports coordinator for ADD in Sao Paulo, loved the program. “My participation in the exchange program was one of the greatest opportunities I’ve ever had.” He particularly enjoyed playing sled hockey in Chicago. “I live in a tropical country where we don’t have winter sports. Practicing sled hockey, I felt like a child with his first toy!” And it wasn’t just sled hockey the participants were introduced to. They got to try judo, wheelchair basketball, sled hockey, adaptive rowing, kayaking, canoeing and participate in a triathlon camp.
In addition to exposure to a wide array of sports, the delegation also learned about U.S. rights-based advocacy from Mary Kate Callahan. Now a college freshman, wheelchair user Callahan sued the Illinois High School Association for the right to compete in her state swim championships. She came to share her story with the group and give some advice on how young people can become better self-advocates in Brazil.
Sao Paulo wheelchair basketball player Pedro Henrique Vieira had this to say: “After 10 wonderful days in Chicago, I can’t find words to describe the trip — the new friendships, magnificent landscapes, our ‘singing’ on the bus. All the sports: sailing, triathlon, judo, hockey, softball. I love Chicago and will miss my new friends!”
Sports, Advocacy Close Cultural Distance
In addition to changing perceptions of other countries and cultures, participating in an exchange can lead to profound shifts in personal awareness. “I used to be down on myself because I felt weird being the only one in my community with a disability,” says Tello, “but after the exchange, I have way more pride in being disabled!” She also learned that she loves wheelchair basketball. “My Sao Paulo friends got me hooked! Now, I am playing with both the RIC Seahawks junior team and the RIC Sky women’s team. If it wasn’t for them, I wouldn’t have tried it!”
Felipe Berty, member of a mixed ability dance troupe in Rio, says, “I was in an adapted boat and it was amazing. A lot of young people like me have never had that opportunity. It was one of the most amazing experiences of my life.”
Geraldo Noguiera, disability rights lawyer and wheelchair user, learned “how sport is important in the life of people with disabilities in the U.S, and how you use it as a tool for advocacy. Sport is an agent for change and a key element in social inclusion.”
Santos thinks that Brazil can learn from the United States on this, and says that integrating advocacy with sports is important for Brazil right now. “We are going to have the Rio Paralympic Games, and this issue is important for our government. We learned here how laws can be made more effective, and Brazilians with disabilities need to know about the rights they have and how to fight for them.”
Whether it was the sports, advocacy training, the friendships, travel or all of it, participants in the Brazil conference as well as the Chicago experience agreed that the program was life-altering in some way for them.
Youth participant James Fuller summed it up best. “I really had no idea what to expect going into the program, but it blew me away once we truly began interacting with everyone.” He was especially impressed with their enthusiasm for life, considering how much more difficult it seems to be for kids with disabilities in Brazil. “They were determined to accomplish something back home and change not only where they live, but everywhere.”
Fuller felt enlightened just spending time with his new Brazilian friends and hearing the struggles they’ve had, which are very similar to some of the things he has experienced. “I found it truly amazing that something as simple as sports and a common cause of improving the lives of people with disabilities brought us together.”
Exchange Close-up: Brazil Meets Chicago
Anderson Lopes Santos and I were reintroduced when the Chicago delegation landed in Niteroi. Though I didn’t recall meeting him, he was certain we had met in Mar del Plata, Argentina, when the Pan American Games were there in 1995. He went home, came back with a photo, and sure enough, there we were together nearly 20 years before! It reminded me of what a small world it is, and how these exchanges play a role in making it even more so.
Lopes Santos, 37, is atypical for a man with a disability in Brazil in many ways — he has been married 15 years, has a job and travels the world. He and wife Solange have one son, Caua, 8. He is a three-time Paralympic athlete and two-time bronze medalist. Born with cerebral palsy-hemiplegia, he is the municipal undersecretary for people with disabilities in his hometown of Sao Goncalo, and also works at ANDEF in Niteroi, promoting social inclusion of people with disabilities.
He is a well-known and vocal advocate on disability issues throughout Brazil, using his Paralympic success as a platform to spread the word about the need to improve conditions for Brazilians with disabilities. When he attended a reception in honor of Brazil’s Olympic and Paralympic athletes in 1996, he reminded the president of his obligation to create jobs, access to education and society for the millions of Brazilians with disabilities.
Progress in his country is much slower than he’d like to see, but he thinks exchanges such as the Chicago-Brazil program have the power to change things. “It was really important to have the Chicago delegation here in Brazil to bring attention to the issues people with disabilities face every day. Sometimes it takes an outsider’s voice to make people hear.”
He was also impressed with Chicago’s accessibility. “The parks, the train, it was great, so easy to get around. It was wonderful to meet Mayor Rahm Emanuel and to learn he has a connection to disability, too.” (Emanuel’s sister has cerebral palsy.) He loved learning about all the sports Chicago has to offer, and was really pleased to see how many young people were participating. “They are playing softball, tennis, sled hockey … it is terrific!”
Lopes Santos also believes it is important to inspire the next generation of leaders, which is why he was so happy to participate in the Chicago portion of the Path to the Paralympics Exchange. He was able to share his experiences with Brazilian and Chicagoan youth with disabilities, both as an athlete and an advocate, and encourage them to use sport as a tool to get the message out about the need to include people with disabilities in every aspect of society.
Sandra Tello-Fernandez got the message loud and clear. Born with spina bifida, Tello-Fernandez, 18, tells of growing up in the United States as the only child with disabilities in her school and being frustrated that she had no one to share her experiences with who could truly understand. She says, “It gets tiring fighting for something all by yourself.”
Sporting knee-high braces and pink crutches, Tello-Fernandez is a typical teen in many ways, attached to her smartphone, texting one BFF or another. But, she is also wise beyond her years.
As a result of her participation in the exchange, she started a program called “Together to Make a Difference” to promote disability awareness and education and respect for people with disabilities. She has a Facebook page and is distributing bracelets to market the program. But, meeting Anderson Lopes Santos helped her find the inspiration to continue to develop as a disability advocate. “I love the passion he has when he talks about disability rights. He makes me not want to give up.”
In fact, she is just getting started. Thanks to meeting members of one of Sao Paulo’s wheelchair basketball teams from ADD, Tello-Fernandez decided to join the RIC Sky women’s wheelchair basketball team in Chicago, and in her first game in November, scored her first basket! Now, she looks forward to weekly practices and can’t wait to get to the next game.
But her life isn’t all about sports, either. She is working at Lurie Children’s Hospital in a paid internship and brushing up on her speaking skills as a debate team member in the last few months of her high school career. She has been busy applying to colleges and universities and just recently found out she was accepted to Loyola University in Chicago. “I am so excited. It will be amazing to live on campus and experience the dorms and everything else. I can’t wait!”
Tello-Fernandez’ debate skills and the poise she has learned as a result were evident when she spoke about her experiences this summer at the WorldChicago annual meeting. Her remarks got right to the essence of why these exchanges are important in the lives of young people who participate in them. “This program was life-altering for all of us. We got to meet so many amazing people and learn so much. About Brazil. About Brazilians. About Chicago. About ourselves.”