| God must have put me in a wheelchair for a reason |
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ZiNG 8 (July 2010) ZiNG meets Boneta Phillips, the woman whose pioneering work has raised awareness of the huge challenges faced by those living with disabilities throughout the Caribbean. Interview: Julian Armfield. Photos: Risée Chaderton Sitting opposite a smiling Boneta Phillips in her wheelchair, it was difficult to grasp that this charming and gracious lady was the formidable and outspoken character that all my research had led me to expect. However, minutes later I was alerted to Boneta’s resolve when she spotted that I had inadvertently left my car in a disabled parking bay. She told me, in no uncertain terms, that the interview could commence only after I had moved the vehicle. Boneta’s charm quickly re-surfaced however, and this past president (now treasurer) of the Barbados Council for the Disabled began to explain how her own misfortune had driven her to become an advocate for others with disabilities. The subject of disability would have been far from Boneta’s mind when she was living in London in 1993. The Guyana-born woman, of Barbadian parentage, was enjoying her job as a teacher of social workers and probation officers, and was in excellent health. She recalls: “I’d had a pretty demanding year at work and was looking forward to my holiday in Gambia, in Western Africa. I had all the usual inoculations before travelling and enjoyed the break tremendously.” But far from feeling refreshed on her return to London, Boneta felt “dreadful”. “It started with pins and needles in my right leg. Within four days, both my legs had become numb and walking had become a real struggle. They took me into hospital immediately but further paralysis set in. They could have cut my legs off and I would not have known!” Boneta, who believes that her paralysis was triggered by the inoculations rather than a virus contracted in Africa, was now dependent on a wheelchair but still able to do some work. But another attack, three years later, left her paralysed from the neck down. “After the second attack, I was in hospital and rehabilitation for around twelve months. I was not able to brush my teeth or comb my hair but I think the worst part was becoming dependent on somebody else to feed me. “On the day I came out of hospital my husband Tony gave up his job to look after me. He has been an amazing caregiver and I would never have been able to become an advocate for others with disabilities without his tireless assistance and devotion. We had always been there for each other, and that was never going to change because one of us happened to have a disability. “Of course, I kept thinking why me? but then I said to myself that God had left me with my voice and my sight and that he must have put me in a wheelchair for a reason. At this point, Tony and I decided to return to my family’s home island of Barbados, where I could set about advancing the interests of other disabled people.” In Barbados, she became Secretary of the Multiple Sclerosis Society. Later, she took up the role as Secretary to the Board of the Barbados Council for the Disabled, where she went on to become President from 2003 to 2007, the first disabled woman to hold this position. Boneta used the voice that God had left her with to great effect, and spoke out in determined fashion to raise awareness of the many, and varied, challenges faced by the disabled, and to lobby for equal access and opportunities for all. “We secured exposure through newspaper articles. We lobbied the Government. We organised fund raising activities. Among our achievements were the purchase of customised buses for schoolchildren with disabilities, and securing wheelchair access to the new Kensington Oval cricket ground.” Boneta also played a part in finding the Council’s new home, Harambee House, which opened in 2006. This fully accessible building has a library and a training room, with computers and programmes that can be used by members, including those with visual impairment. She is currently the Regional Programme Manager for Leonard Cheshire Disability, a UK-based charity with 250 projects in 54 countries. Its mission is to change attitudes towards disability, and to serve disabled people around the world. Her territory embraces Barbados, Grenada, Guyana, Jamaica and Trinidad & Tobago. On her visits to these islands, she has observed the different challenges faced by the disabled community in each of them. “Many of the problems are common to all of the islands. For example, people in wheelchairs cannot reach the high desks in immigration at the airports, or wend their way through the snake-like approaches to the scanning machines. Also, there is insufficient transportation from the airports for those with special needs. “Narrow pavements, or no pavements at all, present a challenge in all of the islands, and while it is understandable that the older buildings do not cater for those with disabilities it is inexcusable when new buildings are designed and built without ramps or designated parking bays. “Most churches do not cater for persons with disabilities. Few have wheelchair ramps or accessible bathrooms, and many have narrow pews while, again, parking is often not given consideration.” Parking, as I discovered earlier, is a major issue with Boneta. She is dismayed by the number of persons without disabilities who leave their vehicles in designated disabled persons parking bays. Offenders in Barbados often now return to their cars to find a ‘Parking Violation’ sign on their windscreens, politely reminding them that a parking ID card is available if they have a disability. Each island has its own individual issues: “In Guyana, which is prone to flooding, there are often steps up or down into the smaller shops while in Grenada a lot of problems remain that were caused by Hurricane Ivan. In fact, accessing many buildings is a real challenge in all of the islands. “What is needed is for Caricom to get involved. It needs to introduce building standards which are common to all of the islands. Governments should also ensure that a percentage of homes are built to meet the needs of persons with disabilities. “We also need to encourage young people with disabilities to be more confident and to play a part in their local organisations. Guyana has an active young voices group, comprising persons with disabilities advocating for change, while the Barbados Council for the Disabled has recently co-opted a young person to its board. “I had a wonderful youth and could never see any limits to what I could do. So it pains me to see young disabled people feeling that their future holds no hope. I want to see them become advocates and recognise their strengths and for them to learn to support each other.” Boneta has seen many improvements in recent times: “People are definitely more aware about the challenges we face. There is, at least, a verbal commitment from most Governments, while more and more individuals are making efforts to help. Among the many breakthroughs has been the integration of children with disabilities into mainstream schools. Families no longer try to hide a child with a disability.” She believes that having a disability is nothing to be ashamed of and that discrimination occurs because of a lack of knowledge and understanding. She hopes that she acts as a role model for younger people as well as caregivers. There can be no doubt that this remarkable lady serves as an inspiration to people of all ages, both abled and disabled, across the Caribbean. |
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