By Paul Jeffrey<\/p>\n\n\n\n
Published by <\/em>response magazine in 2015. <\/em><\/p>\n\n\n\n Because she sits in a wheelchair, Hope Ranganayi says many people she encounters aren\u2019t sure how to respond to her.<\/p>\n\n\n\n \u201cI got a new wheelchair, so I\u2019m meeting more people because I\u2019m more mobile. People will be people, so some will love me, while others will look at me and just stare. Some are curious and ask how I live, how I eat, how I go to the bathroom. Some don\u2019t even ask, they just assume. One friend just assumed I had polio. He thought everyone in a wheelchair had polio,\u201d said the 29-year old Zimbabwean woman.<\/p>\n\n\n\n Ms. Ranganayi suffered a spinal cord injury in a 2008 automobile accident. \u201cMy legs haven\u2019t worked since then, but my brain works fine. It\u2019s only my legs that are paralyzed,\u201d she said.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 As is often the case, denial came before acceptance. \u201cAt first I couldn\u2019t accept what had happened to me. I was in denial. I stayed at home and ended up knowing every program on television. But the more I met others with disabilities, and then when I got a wheelchair, it slowly got better and better. Today I am psychologically and physically fine,\u201d she said.<\/p>\n\n\n\n <\/p>\n\n\n\n Throughout the global south, people living with disabilities are struggling against ignorance, discrimination, and economic marginalization. Many are refusing to be victims, and with advocates at their side they\u2019re creating new spaces for fuller participation in society.<\/p>\n\n\n\n The family is usually the first space where those with disabilities must struggle for acceptance. In Ms. Ranganayi\u2019s case, this took some time. \u201cAt first my family couldn\u2019t understand, and they wanted to spoon-feed me. They never thought I could manage anything on my own. But then I went to some disabled people\u2019s organizations where we are taught to do things ourselves. I learned I need to wash my own clothes and cook my own food, as long as the stove is at a height I can reach. I became more independent, and now my family doesn\u2019t see me as any different from how they saw me before,\u201d she said.<\/p>\n\n\n\n Having the right wheelchair helped. Many poor people living with disabilities end up with donated wheelchairs that don\u2019t fit their bodies or their context. In 2014, Ms. Ranganayi received a new, properly fitted chair from a program supported by CBM, a faith-based organization supporting disability rights around the world. The new chair is foldable, which makes it easier to take on public transportation, and has larger wheels with tubeless tires, making getting around easier and flat tires a thing of the past.<\/p>\n\n\n\n In her new chair, she moves confidently around the National Rehabilitation Centre in Ruwa. She has studied film-making but worries she doesn\u2019t have the finances to pursue that career, so she\u2019s currently studying purchasing and supply management. Her classmates all have some sort of disability. <\/p>\n\n\n\n \u201cDisability comes in diverse forms, and we teach each other and empower each other as we share. But we also need able-bodied friends. We don\u2019t discriminate against able-bodied people, so we also mix with them and they learn a lot from us,\u201d she said.<\/p>\n\n\n\n Ms. Ranganayi would like to see such positive relationships encouraged by government education policy. \u201cWe need to integrate children at an early age, the disabled learning together with the able-bodied, so they come to know each other and understand disability at an early age. But at this point the only schools accessible to us are the institutions for the disabled. The government schools aren\u2019t very accessible, so we end up with no choice but to go to institutions where we enjoy access. We need the government to implement policies that are disability friendly. This is especially true in relation to employment. We don\u2019t enjoy equal opportunities. We need policies that favor and empower people with disabilities,\u201d she said.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Tatenda Mafuta also believes in tearing down walls that separate the disabled and non-disabled. The 23-year old Harare resident was born with spina bifida, so has wrestled with mobility issues her whole life. She also recently got a properly fitted chair, which has made life much easier. Ms. Mafuta supports herself and her mother by working in a beauty shop, but also volunteers with a group that educates rural Zimbabweans about the rights of people living with disabilities.<\/p>\n\n\n\n \u201cWe go to villages and tell people with disabilities that they have rights, the same rights as others to education. But it\u2019s got to be inclusive education,\u201d she said.<\/p>\n\n\n\n Ms. Mafuta thinks friendship needs to reach across arbitrary lines of disability.<\/p>\n\n\n\n \u201cMany hearing impaired people have just friends who are deaf, for example. We want people with disabilities and people without disabilities to talk with each other and know each other,\u201d she said. \u201cWe have to start with inclusive education where everyone is learning together. But in most schools there are no ramps, and you can\u2019t get into the toilets with wheelchairs. We don\u2019t want a situation where people have to carry you from class to class. So we go to schools and we say, \u2018You have to reserve a toilet for people with disabilities. Even if you don\u2019t have someone with disabilities now, you may next year. How will they get to class if all the classrooms have steps?\u2019\u201d<\/p>\n\n\n\n Mafuta is determined that change will come. \u201cIf the voice of the people keeps pressing and demanding change, then we\u2019ll see things change. That\u2019s why we\u2019re making noise and demanding change in building designs. We\u2019re not well known yet, so that\u2019s why we\u2019re traveling to many villages and sometimes go on radio or television, or have marches where we raise our posters about inclusive education and the need to end discrimination. We all just want to live normal lives,\u201d she said.<\/p>\n\n\n\n Uruguay: \u201cIt\u2019s our society that is disabled\u201d<\/strong><\/p>\n\n\n\n Five thousand miles to the west in South America, children with disabilities are often relegated to \u201cspecial schools\u201d by regular classroom teachers who don\u2019t have the time or training to deal with a boy or girl with slightly different needs, according to Cecilia Martinez, the director of the Instituto de Buena Voluntad<\/em> (the Good Will Institute) in Montevideo, Uruguay.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u201cWhen the teachers don\u2019t know how to deal with the kids, they\u2019re passed to a special school. Yet once there, a child with disabilities is stuck. They\u2019ll never return to regular schools because they\u2019ve become marked within the system,\u201d Ms. Martinez said.<\/p>\n\n\n\n This situation is unfair to both disabled and non-disabled kids, says the Rev. Ines Simeone, the chaplain at the Institute, which is sponsored by the Methodist Church of Uruguay and has long received support from United Methodist Women Mission Giving.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u201cKids who remain in the normal schools suffer because they lose the experience of interacting with children with disabilities. Their vision of the world is truncated,\u201d Ms. Simeone said.<\/p>\n\n\n\n The Institute is located in a poor section of the city which was historically the center of organizing among Montevideo\u2019s working class, and where the Methodist Church has closely accompanied the population for more than 90 years. In the mid-20th Century, the Institute formed as a sort of sheltered workshop where people with disabilities could transform used clothing into salable items, providing both income for themselves as well as inexpensive sturdy clothing for the workers and their families. By the 1990s, however, the importation of cheap clothing led the government to prohibit such work in order to protect local manufacturers. The Institute had to rethink its mission.<\/p>\n\n\n\n Today the Institute provides vocational training in a variety of fields, including sewing, art and carpentry, but Ms. Martinez says the goal of the training isn\u2019t to convert youth into full-time workers in a consumer society. \u201cWe\u2019re trying to nurture in the kids the capacity for the fullest citizenship possible,\u201d she said. That includes work, but it focuses more on building autonomy, discipline and responsibility. It also includes developing an appreciation for music and art and social interaction. The Institute recently installed a multi-sensory room, the first of its kind in Uruguay.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Around 120 youth ages 14 and up benefit from the Institute\u2019s work, though a few adults (the oldest is 48) also participate in its programs. Most have abandoned formal education for a variety of reasons, though Ms. Martinez is clear who is responsible for that. \u201cWe don\u2019t see the kids as disabled,\u201d she said. \u201cIt\u2019s our society that is disabled because we haven\u2019t figured out how to support and care for them.\u201d<\/p>\n\n\n\n According to Sergio Araujo, a Methodist attorney who chairs the board of directors, the Institute has developed a right-based approach, seeing youth with disabilities as subjects of their own history, rather than objects meriting pity or charity. \u201cBefore they were often seen like a baby that needed to be protected, rather than a subject with rights of their own. If they\u2019re in a wheelchair, they have the right to have a ramp at their school so they can have access. If they have physical or emotional problems, they still have a right to be with other kids, and not stuck off somewhere,\u201d he said.<\/p>\n\n\n\n The biggest problem isn\u2019t the disability per se but rather the marginalization of the disabled by the larger society, Mr. Araujo says.<\/p>\n\n\n\n \u201cThe majority\u2019s response to the disabled is either to look the other way, to get nervous, or to convert them into objects of charity. The give lots of money every time there\u2019s a televised campaign about people with disabilities, but during the rest of the year they forget about them. They don\u2019t give them a seat on the bus or help the blind across the street. They just ignore them,\u201d he said.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Such invisibility is slowly eroding, however, says Margot Birriel, a disability specialist at the Institute. \u201cFor too long we saw disability as a medical problem, and that meant that for some people there was no hope. Rehabilitation couldn\u2019t cure their problem. But over the years we\u2019ve come to realize that disability is a social phenomenon. We are the disabled ones when we don\u2019t recognize the right of others to be in the world in a way that doesn\u2019t fit inside the box we\u2019ve decided to call \u2018normal\u2019,\u201d she said.\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/p>\n\n\n\n \u00a0 \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0The Institute, therefore, focuses on quality of life and on happiness.<\/p>\n\n\n\n \u201cIf some of these kids are born with Down Syndrome or some other problem, they have their own way of being in the world. We try to give them some tools to help them insert themselves in the world, but rehabilitation isn\u2019t the focus. It\u2019s their quality of life that\u2019s important, their right to be happy,\u201d Ms. Birriel said.<\/p>\n\n\n\n Sometimes exercising that right to be happy makes others uncomfortable. Maria Noel Gonzalez, the assistant director, says she once went with a group of kids from the Institute on a city bus. \u201cWe got on the bus, and the kids sat down. One girl started talking with the security guard on the bus, and the man simply didn\u2019t know how to respond. The kids were having a good time, laughing about everything, but the man was nervous. He was obviously uncomfortable. He didn\u2019t know what to do. He was immobilized. I felt that he was the one on that bus who was disabled,\u201d she said.<\/p>\n\n\n\n Philippines: \u201cMothers who have led the way\u201d<\/strong><\/p>\n\n\n\n In the weeks after Eileen Peralta gave birth to her daughter Erin, she began to notice little things that didn\u2019t seem right. By the time Erin was one year old, Ms. Peralta grew particularly concerned that she wasn\u2019t walking. She consulted her physician, who sent her to a specialist, who in turn told Ms. Peralta that her daughter was probably autistic.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 \u201cI was a first-time parent, and at this point I\u2019m panicking,\u201d said Peralta, a native of Manila. \u201cI started looking for someone to help me, and I heard about Kaisaka, a local parents\u2019 group that helps families with children with disabilities. Being a parent alone with these challenges is frightening, but they stepped in to accompany me. We started therapy, and we learned a lot from the workshops and training sessions they held. It\u2019s hard to be the parent of a child with autism. She can\u2019t speak, so we do a lot of nonverbal communication, a lot of sign language. Sometimes she\u2019s really hyperactive, and I\u2019ve got to be patient. The group helped me understand her and better respond to her needs.\u201d<\/p>\n\n\n\n Erin is now 12, and Ms. Peralta is president of Kaisaka, the acronym for Kaisahan ng Magulang at Anak na Maykapansanan\u2013a community based rehabilitation program begun as an outreach program of the Catholic Church in the Malate neighborhood of Manila in the 1980s. In the 1990s it was taken over by the mothers of the kids with disabilities, and they run it today.<\/p>\n\n\n\n Kaisaka works with 115 families which have 145 persons with disabilities. It provides physical and occupational therapy, including to some adults with disabilities. Kaisaka provides home tutoring for kids with disabilities who are having difficulty in school, as well as needed advocacy with government bureaucracies.<\/p>\n\n\n\n \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Most importantly, Kaisaka offers early identification and intervention in families affected by disability. Such early response can be critical in assuring, for example, that kids get into school.<\/p>\n\n\n\n \u201cBefore Kaisaka was formed, children with disabilities were usually just kept at home. But we help parents understand their kids and the need to get them out in the community. As we\u2019ve done that, the community has grown more accepting, and people now quickly refer cases to us. It\u2019s been mostly mothers who have led the way in getting kids identified and treated earlier, but now we\u2019re seeing more and more participation from fathers and the rest of the families. Change has been slow, but we\u2019re making progress,\u201d said Jenny Villanueva, Kaisaka\u2019s program coordinator.<\/p>\n\n\n\n Kaisaka\u2019s focus on parent-to-parent work\u2013what Ms. Peralta calls \u201ca motherly approach\u201d\u2013is key to the group\u2019s success. And it explains why the group is helping similar organizations get started in other Manila neighborhoods and neighboring provinces. Like many countries, the Philippines has some good laws and regulations on paper concerning the rights of people with disabilities. It has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities (the U.S. government has signed but not yet ratified the treaty). But translating commitments on paper into effective policies requires passion, and no one brings more enthusiasm to the task than those directly affected. It\u2019s the disabled themselves, along with their family and close friends, who will guarantee full citizenship to those society has too often tried hard not to see.<\/p>\n\n\n\n The Rev. Paul Jeffrey is a United Methodist missionary and senior correspondent for <\/em>response. <\/em><\/p>\n\n\n\n <\/p>\n","protected":false},"excerpt":{"rendered":" People with disabilities and their families struggle for greater citizenship By Paul Jeffrey Published by response magazine in 2015. Because she sits in a wheelchair, Hope Ranganayi says many people she encounters aren\u2019t sure how to respond to her. \u201cI got a new wheelchair, so I\u2019m meeting more people because I\u2019m more mobile. 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