BUENOS AIRES, ARGENTINA – Mauro Sorbellini, 41, pushes himself in his wheelchair while his wife walks by his side, resting a hand on his shoulder. It is a common scene of a common couple that have just finished dropping their son off at school, except for one detail. Sorbellini, who has spent more than 20 years in a wheelchair after he fell out of a tree and became paralyzed, must fight every day to complete routine tasks like this.
Sorbellini’s body betrays his efforts to navigate Buenos Aires, Argentina’s capital, which is not designed to accommodate the disabled. He has strong shoulders and arms, while his thin legs rest on the footrests of his wheelchair.
Moving around in his wheelchair, he takes his children to the park, goes shopping, and can even climb and descend stairs by clinging to the handrail. He also works in a government office that provides medicine to people who can’t afford it, and he and his wife recently had a baby, who is 3 months old.
“It doesn’t seem to me that the chair is an obstacle to forming a couple,” Sorbellini says.
Sorbellini and his wife met four years ago when a mutual friend introduced them. She lived in a city in the interior of the country with her two children – a daughter, now 14, and a son, now 6.
“I fell in love with them, and I brought them to live with me,” says Sorbellini, sitting in an armchair in their home as their 6-year-old son rides around the living room in Sorbellini’s wheelchair, as if it were a toy car. “We formed a family. The kids are my children.”
Inside the house, everything is normal: the conversation, the light that enters through the large window, the smell of homemade cake, the boy spinning around in the chair. But outside the house, Sorbellini has behind him a long history of fighting to assert his rights in the city, a fight that once earned him the nickname “the boy of the ramp.”
More than 17 years ago, he and his parents filed a lawsuit against the consortium of the building in which they lived because the neighbors refused to construct a ramp that would allow him to access the building. The case had a lot of public significance, and, thanks to the lawsuit, every new construction project here is now obliged to consider access for people with different capabilities. Remodeling projects must also take accessibility into account.
“What generates problems for you is that the chair is visible,” Sorbellini says. “If you see a [person who has had a] transplant, maybe you don’t realize it, [although the person] probably has more problems in relation to the amount of medication that one has to take.”
But he says the wheelchair creates more of a stigma, remembering the attitude of his former neighbors.
“The chair is more visual and more startling,” he says. “It generates loves and hates for you. It wakes up sensations in others. There are people who love you, who want to help you, and there are people who hate you. I can’t know how another feels when they see me, but yes, I know how they react.”
Disabled people living in Buenos Aires say they face physical and cultural barriers on a daily basis – from a lack of elevators at subway stations to a lack of respect from fellow citizens. Government advisers on the issue emphasize education as the key to ensuring handicapped people receive the rights they deserve. The government has laws and initiatives in place to improve access to buildings and transportation, and it is working on implementing them. A recent international conference held in Buenos Aires showed that the city is not alone in both its deficiencies when it comes to access as well as its efforts to fix them.
There were nearly 200,000 handicapped people living in Buenos Aires as of 2002-2003, according to the most recent census.
More than 52 percent of the cinemas and theaters in the city of Buenos Aires are inaccessible for people with motor incapacities, according to Acceso Ya, or Access Already, a nongovernmental organization that advocates for the right of handicapped people to access the city without barriers.
When it comes to schools, 95 percent of private schools and 75 percent of the public schools don’t comply with the minimum conditions of accessibility, according to the organization. Many lack ramps, elevators and adapted bathrooms, among other necessities.
While Sorbellini highlights the stigma that his wheelchair many times creates, Alicia Ramírez, who is visually impaired, says the stick that proceeds her acts as a warning signal to others so that they can respect her disability.
“The stick is a quick form of telling another, ‘Be careful,’” she says.
Ramírez, who is older than 60, suffers from retinitis, an illness that has slowly consumed 90 percent of her vision.
“When, already an adult, they put the first stick in my hand, I began to know what my illness was,” says Ramírez, smiling while she sips her coffee in a traditional bar in the city. “Until that moment, it didn’t matter to me at all. It didn’t give me many problems. If I led myself in front of a garbage can as I was walking, I laughed. But I believe that it was a form of liquefying the anguish.”
Ramírez, who is divorced, has a boyfriend whom she met while taking computer classes for blind people. But her ex-husband, who suffers from Parkinson’s disease, still lives with her. Together they raised three children, two of which inherited retinitis and know that sooner or later they will lose their vision, too.
“It doesn’t seem to me that it’s something serious enough to prevent me from having children, from bringing people into the world,” she says. “I would not have liked if they didn’t give me the opportunity of living because they knew that I was going to have this.”
She tries her best to keep a positive attitude about it.
“One could say that we are a family that turned out half-failed,” she says, joking. “But I believe that all families have something. I don’t know anyone who is perfect.”
This tall and thin woman, whose coquetry keeps her from giving her exact age, likes to dance the tango, go to the movies and the theater with friends and travel throughout the country.
“I went to the Iguazú Waterfalls two times,” she says. “There you feel the jungle, the heat, the coolness of the water, the cry of the insects.”
When she goes to the movies, she opts for the ones that play films in Spanish, and when she goes to the milongas – places where people dance the tango – she always counts on her friends to tell her whether the man who asks her to dance is handsome.
“My friends sometimes tell me, ‘He is horrible!’” she says. “And other times they tell me, ‘He is very handsome.’ And I feel that I would like so much to see him! One always wants to see. I am deprived of looking, of seeing if another looks at me or not.”
But she says people don’t always take her needs into account in public spaces.
“The pavement isn’t clear,” she says. “There are many advertisements in the way. I hate the advertisements in the way. The awnings that are low make me hit my head. There are many advertisements sticking out from the edge of the wall. There are many window boxes. We [the blind or visually impaired] need the reference of the wall in order to be able to walk.”
Still, her tone remains cheerful despite continuing to list the lack of consideration for handicapped people throughout the city.
“In the subways, there in general isn’t an elevator,” she says. “That seems most serious to me. Many times, there is not even an escalator.”
She says the situation on buses varies depending on the driver.
“I ride a lot on the bus,” she says. “When the drivers are kind, they stop and they ask you what bus you’re waiting for, and after, they advise you where you have to get off. But there are some crooks who make you get off where they want, who lie to you.”
What Ramírez has been learning slowly as her illness advances, Sorbellini had to confront in a second after falling out of that tree. During the past 21 years, he has also collected many anecdotes about maltreatment – from the ticket vendor in the subway who didn’t put the minimum effort into fixing the broken escalator to the bus driver who insulted him because he was temporarily blocking the road with his car door while getting his wheelchair out. He says that others try to take advantage of him.
“When I feel that they are tricking me, I go crazy,” he says.
He says the looks of others bother him more than the city’s architectural or physical barriers. He says he prefers indifference to judgment.
“Indifference isn’t ugly,” he says. “It lets you continue with your life. One doesn’t note as much that you are in a wheelchair. It’s not that one forgets that you are in a wheelchair, but in the end, one continues being the same.”
He says he doesn’t expect people to help him, but just to treat him with respect.
“The people have to do what they feel,” he says. “If they want to help, expressing it and doing it. And if not, not. One has to live one’s life. It’s neither good nor bad.”
The law requiring ramps to access the city’s buildings took into account the concept that all physical barriers derive from cultural barriers. With this in mind, Raquel Tiramonti, president of the National Advisory Commission for the Integration of Disabled People, a body created by a governmental decree at the recommendation of the United Nations, emphasizes the importance of education in changing the paradigms surrounding handicaps.
“Educational inclusion is the only thing that is going to allow that, from when the children are very young, they get used to living with different people,” Tiramonti says. “The school is the most important redoubt in order to achieve this change. It’s not easy. We have to defeat some structures that in some spaces are very rigid.”
She says schools here must adapt to include children with disabilities – not vice versa.
“One doesn’t understand that a boy with a disability goes to common school, but he should be, so long as the conditions of that boy permit it,” she says. “It’s not that the person with the disability has to adapt to the school, but that the school has to adapt to the person with the disability.”
She says that naturalizing the subject of disability is, for her, a primary objective.
“One has to treat the subject with naturalness,” she says. “We have become very serious in order to pay attention to disability, but not sufficiently human in order to understand it.”
She also considers it necessary to immediately solve the problems that hinder the mobility of people with disabilities. For example, she says that ramps in all buses must function and elevators and escalators must be installed in all subway stations.
She says that mass media must also better include disabled people. She says that the country counts on the technology of digital television, but that there are only two channels with some digital programs and no daily news programs that are accessible to people with vision or hearing problems.
“It’s a doubt that we have,” she says.
According to Claudio Bernadelli, who is in charge of access for the National Advisory Commission for the Integration of Disabled People, the city relies on a program created in 2002-2003 that has been implementing projects in order to make all subway stations physically accessible. The new stations have elevators, he wrote in an email.
The portrait that the city offers when it comes to disability is similar to the situation at the global level. Numerous international specialists gathered last month in Buenos Aires to participate in the Third Conference on the Spreading and Monitoring of the Convention on the Rights of Persons With Disabilities.
Shuaib Chalken, U.N. special rapporteur on disability, said during the conference via Skype that people with different capacities weren’t included in the Millennium Development Goals, a U.N. initiative of eight anti-poverty goals that countries worldwide have pledged to achieve by 2015.
“The United Nations realized this a little late,” Chalken says. “We don’t have a sufficiently strong voice in the world.”
He said this was in spite of the thousands of millions of people with disabilities who live in it.
“We have to unite our voices in order for them to listen – to work together in order to pass from the stage of talking to the stage of doing,” he says.
Echoing Tiramonti, Sorbellini says that the key is education.
“If one knew more about disability, maybe this wouldn’t generate neither fear nor anxiety,” he says. “In the end, I am no more than a person who rides a bicycle.”
