A handful of youths rendered disabled by polio joined college this year. They are also professional dancers with their wheelchairs and crutches doubling as stage props. Gulshan Kumar, Vijay Kumar, Ajay Kumar and Manish Kumar were all drawn out of their homes, often against the wishes of their parents, trained as dancers for years by an NGO and placed in schools. Belonging to economically weak families, these kids, once considered liabilities, are now supporting their families.
"We prepare the disabled for independent thinking and living free of cost," says Syed Salauddin Pasha of the Ability Unlimited Foundation (AUF) that works mostly with disabled kids coming from economically weak backgrounds. He teaches them to dance, do yoga and sword-play - all on wheelchair.
In 2011, one of his wards, Gulshan Kumar, affected by polio, even broke the world record for wheelchair-spinning. "We work as professionals and our efforts are funded by shows. When we started, I had to keep writing to festival organizers to get a platform for my students. They'd not reply or refused outright. This year, we had to turn down offers for many shows. We were just not free," says Pasha.
However, few get a break like that. The support structure for the disabled in Delhi is incomplete - even 17 years after the Persons with Disabilities Act, 1995, came into being, work on it is going painfully slow. Even the existing systems do not work in tandem with each other. Occupational therapy is available in hospitals and even private centres but getting to these places is difficult. Public transport is hopelessly inaccessible to the disabled, especially to those with locomotive disabilities; roads are dangerous for the wheelchair-bound.
The means for diagnosis and identification of disability are easy but referrals and follow-ups are rare; awareness is growing among parents but information about existing resources and support systems are scattered. Most facilities are in private hands and medical help, considered the only remedy instead of alternative lifestyles, is forbiddingly expensive. "The approach to the rehabilitation of the disabled," says Arun C Rao of The Deaf Way Foundation, "is fundamentally flawed".
"You can't thrust a hearing-aid or medical procedures such as cochlear implants at the deaf and consider them rehabilitated," continues Rao. "There has to be regular follow-up and monitoring, which are missing. But for the disabled person, it's a life-long matter. Rehabilitation involves improvement of the quality of life, requiring help on all fronts - medical, social, educational and vocational." Parents look for a permanent solution. "I've known many families that have gone bankrupt looking for a cure," says G Syamala of the Action for Ability Development and Inclusion (AADI).
Most importantly, the process of rehabilitation for those born with disabilities has to start early. "Facilities are available in urban areas but how many people know about them? A child is brought into an OPD and his parents have specific questions. If those aren't answered and the doctor omits details, it leaves the parents clueless. By the time the parent learns about available help, valuable time is lost," says Dr Madhumita Puri, executive director, the Society for Child Development.
The concept of screening babies at birth for any kind of impairment and referral to specialists and organizations exists in many parts of the world, even developing ones such as Brazil. In India, disabilities do get spotted but referrals and follow-ups are absent, even for new-borns, making early interventions almost impossible. "If the mother doesn't see any support or any resources, the child becomes a liability," says Syamala.
Institutions catering to the disabled exist but are woefully few and, often, very expensive. "With growing awareness among parents, the demand is about 70% higher than what we are able to give. And typically, such centres deal with specific needs of a particular impairment. But there is also co-morbidity, associated problems such as low self-esteem and depression that are not addressed," says Dr Bhavna Burmi, clinical and child psychologist with Fortis Escorts.
"We prepare the disabled for independent thinking and living free of cost," says Syed Salauddin Pasha of the Ability Unlimited Foundation (AUF) that works mostly with disabled kids coming from economically weak backgrounds. He teaches them to dance, do yoga and sword-play - all on wheelchair.
In 2011, one of his wards, Gulshan Kumar, affected by polio, even broke the world record for wheelchair-spinning. "We work as professionals and our efforts are funded by shows. When we started, I had to keep writing to festival organizers to get a platform for my students. They'd not reply or refused outright. This year, we had to turn down offers for many shows. We were just not free," says Pasha.
However, few get a break like that. The support structure for the disabled in Delhi is incomplete - even 17 years after the Persons with Disabilities Act, 1995, came into being, work on it is going painfully slow. Even the existing systems do not work in tandem with each other. Occupational therapy is available in hospitals and even private centres but getting to these places is difficult. Public transport is hopelessly inaccessible to the disabled, especially to those with locomotive disabilities; roads are dangerous for the wheelchair-bound.
The means for diagnosis and identification of disability are easy but referrals and follow-ups are rare; awareness is growing among parents but information about existing resources and support systems are scattered. Most facilities are in private hands and medical help, considered the only remedy instead of alternative lifestyles, is forbiddingly expensive. "The approach to the rehabilitation of the disabled," says Arun C Rao of The Deaf Way Foundation, "is fundamentally flawed".
"You can't thrust a hearing-aid or medical procedures such as cochlear implants at the deaf and consider them rehabilitated," continues Rao. "There has to be regular follow-up and monitoring, which are missing. But for the disabled person, it's a life-long matter. Rehabilitation involves improvement of the quality of life, requiring help on all fronts - medical, social, educational and vocational." Parents look for a permanent solution. "I've known many families that have gone bankrupt looking for a cure," says G Syamala of the Action for Ability Development and Inclusion (AADI).
Most importantly, the process of rehabilitation for those born with disabilities has to start early. "Facilities are available in urban areas but how many people know about them? A child is brought into an OPD and his parents have specific questions. If those aren't answered and the doctor omits details, it leaves the parents clueless. By the time the parent learns about available help, valuable time is lost," says Dr Madhumita Puri, executive director, the Society for Child Development.
The concept of screening babies at birth for any kind of impairment and referral to specialists and organizations exists in many parts of the world, even developing ones such as Brazil. In India, disabilities do get spotted but referrals and follow-ups are absent, even for new-borns, making early interventions almost impossible. "If the mother doesn't see any support or any resources, the child becomes a liability," says Syamala.
Institutions catering to the disabled exist but are woefully few and, often, very expensive. "With growing awareness among parents, the demand is about 70% higher than what we are able to give. And typically, such centres deal with specific needs of a particular impairment. But there is also co-morbidity, associated problems such as low self-esteem and depression that are not addressed," says Dr Bhavna Burmi, clinical and child psychologist with Fortis Escorts.
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