Times of India, Ahmedabad Edition; February 2, 2010
Ahmedabad: Sachin was horrified to learn that his wife had taken their three-year-old autistic son for horse riding. Sachin immediately left office to join his child.
But what he saw at the Elina Stables near Santej was heart warming. His son Keshav was standing close to a horse all by himself, feeling him and asking his mother if he could take a ride right away.
Hippotherapy, where the horse becomes the therapists or healers, is the new way of treatment that the children born with autism are getting in the city, all thanks to a horse lover Virendra Kankariya. He is also the founder of Equestrian Club of Gujarat and the All Gujarat Horse Breeders Association.
“Last year I had been to US for a rare breed of horses. In one of the farms that I visited, I saw a group of toddlers spending time with the horses. Enquired, I was told these were autistic children and were getting hippotherapy. I got interested an wanted to learn more, so I attended a week-long training session that taught me how give the therapy sessions,” said Kankariya.
After his return, Kankariya approached over 20 organisations, working with autistic children, offering his services and got response from Setu Developmental Intervention Centre, Ahmedabad. Since the last six months eight children from Setu are being taken to the stables once a month to spend a few hours with horses.
“The autistic children have a very poor social psychology. They are introvert and emotionally inert. They suffer from sensory problems, are selfabsorbed, have a purpose-oriented interaction and do not respond to their name, touch or any other communication. In the first session, the most difficult part for us is to bring the children close enough to a huge animal. The response of their parents has been good despite initial misgivings,” said Minal Doshi, one of the trustees of Setu.
When asked what was his most special moment at the sessions so far, he said, “There was one boy, who on the first session wailed and would not step close to a horse. By the end of the session, we were not only able to calm him but also convinced him to sit on the horse. In the second session, when he entered the farm, he ran to a horse and turned to his mother to say, ‘I want to ride him’. His mother was amazed because this child never talked.”
How it works
According to horse lover Virendra Kankariya, hippotherapy works using the sensory skills of the child. The rhythm in which the horse moves, making the rider move with him provides physical and sensory input, which is variable, rhythmic and repetitive. With autistic children it works with their speech and language abilities, articulation, respiration and postural control, sensory processing, behavioural and cognitive abilities.
Ahmedabad, June 21: It was not before Anjali was one-and-a-half-year-old that her mother realised that everything was not right with her. Anjali had not started speaking yet, walked in a strange way and looked lost. Seema, her mother, though concerned did not seek professional advice. And when she did — after a good six months — it was rather late. Anjali was diagnosed with autism and remedial action became difficult due to late intervention.
“This is the mistake most parents make. They wait until it is too late and then remedial action is difficult,” said Minal Doshi, Director, Setu Developmental Intervention Centre, a place catering exclusively to the needs of children with developmental disorders.
“Awareness level among parents is abysmally low. In most cases even doctors do not diagnose it early enough. Early intervention is the key in dealing with these cases.”
The bigger problem, however, lies elsewhere — Except for Setu Centre, there is no other centre in the entire state to spread awareness about autism, or help parents with such children.
“We are at present working with 39 children. There are many more children out there who have nowhere to go; many parents are ignorant about the special needs of their children,” said Doshi, adding, “In fact, there is no college in the state that offers a course in occupational therapy.”
Amita, mother of a five-year-old autistic girl, says, “It would be great if there is an association of parents with autistic children. We can share and learn from each other’s experiences.”
While autism does not necessarily imply that children are mentally challenged, many do turn out to be so. “It is difficult for a parent to accept that your child is mentally challenged. It is important to remember that they learn differently,” says Seema.
Indian researcher and activist Minal Doshi has a mission: to get the world’s policymakers to pay attention to disabled people.
If they fail to do so, she warns, the Millennium Development Goals (MDGs, the internationally agreed targets for improving the lives of the majority of the world’s population) will also fail.
It is true, in the words of activist Indumathi Rao, regional advisor for a South Asian network, that in many parts of the world “the MDGs look like stars and moon up in the sky…Most of the goals in the past have failed to move beyond mere catchy slogans.” But most development agencies are geared – at least on paper - to achieving the UN-backed goals.
So they remain the best hope for reducing poverty worldwide.
Doshi, however, realised that the eight basic Goals - which include halting the spread of HIV and AIDS, halving extreme poverty and providing universal primary education - have a major flaw: they do not mention disability.
Most estimates say one person in 10 is disabled, a word that covers everything from legs blown off by landmines to mental illness, and from epilepsy to deafness.
That’s about 600 million people, who the World Bank says “are more likely than other people to live in grinding poverty…they live at the bottom of the pile.”
“I realised that international funding would eventually be directed only at areas covered by the MDGs, and that groups representing people and issues not included in the Goals – including the disabled - would find it harder and harder to get funds”, she recalls.
During a meeting on disability in the Indian city of Ahmedabad organised by the Disability, Knowledge and Research Programme (funded by the UK Department for International Development, she suggested that the UN be petitioned to acknowledge disability as a key factor in achieving the Goals.
Participants at the meeting backed the suggestion - and left it to her to take the idea forward.
Doshi admits that she was not particularly well qualified for the task: “I am just a ground-level worker but I saw a lot of people doing good work getting agitated and upset about the whole issue. I didn’t understand the approach of the human rights organisations that took up the issue and I didn’t know how to deal with the UN.”
Nevertheless, she wrote a draft petition and got the 500 signatures that were considered necessary to show there was support for the initiative.
During this first stage of the work she temporarily left her social work activities in India for a stint at the Third Millennium Foundation, a New York-based organisation working on tolerance and human rights issues – “a perfect opportunity to be where the UN is and try to understand its work.”
She was also made a visiting scholar at Columbia University, where she was able to share ideas about her new project with the School of International and Public Affairs.
She has been meeting lawyers, academics, disability groups and attending UN meetings. The second draft of the petition (http://www.disabilityindia.org/mdgsign.cfm) has been completed and is being circulated for feedback.
Is she confident that she will be able to break the resistance to any change in the Goals, which were agreed only after a lengthy process of negotiation?
“I feel the petition has a good chance”, she says. “Everyone I have spoken to is taken aback at first because they have not heard or thought about the argument that says disability impacts on the economic and on development. This reaction tells me we are onto something good.”
She emphasises that supporters of the initiative are not pressing for a new and separate Goal on disability, which is not practical politics. What they want is to interweave disability into the existing Goals. For example, since the sheer number of persons with disabilities makes them the largest group of people vulnerable to extreme poverty and hunger, they want the UN to acknowledge that disability is a key indicator of poverty.
Similarly, for the education Goal they want the wording to recognise the UN’s own estimate that 98 per cent of children with disabilities in developing countries are not in school.
The London-based Healthlink Worldwide – which co-manages the Disability KaR programme and organised the Ahmedabad meeting - considers the omission of disability from the Goals as “grievous”. James Wolfensohn, former president of the World Bank, has said that “unless disabled people are brought into the development mainstream, it will be impossible to cut poverty in half by 2015 or to give every girl and boy the chance to achieve a primary education by the same date…”
Still, Doshi admits to uncertainty “because this is my first venture into the area of human rights”. In addition, she is still working largely on her own, has not yet received much media coverage, has a lot to learn about lobbying and needs the support of big organisations and, ultimately, of a national government prepared to espouse the issue and push it through the UN: individual petitions to the world body end up in the paper shredder.
She has meetings lined up with Salil Shetty, director of the UN’s Millennium Campaign, and with Jeffrey Sachs, UN Secretary-General Kofi Annan’s Special Adviser.
In August, she plans to show the petition to participants at a week-long meeting at the UN on disability. “This is one event where everyone who matters in the field of disability development will be available. It’s a once-in-a-lifetime opportunity to bring the issue up.”
An interview with Dr. Shoba Srinath, Head of Child and Adolescent Psychiatry Services, Department of Psychiatry National Institute of Mental Health & Neuro Sciences (NIMHANS), Bangalore.
1. What do you mean exactly by the term `special education'?
When we refer to `special education', we talk of education that is not imparted the conventional way. This is so in three types of cases a) autistic b) retarded and c) slow learners. The adaptive and the global skills of these children when compared to a normal child are slow. These children are unable to cope with simple factors that could range from communication skills to social skills, and with their disability to adapt to such a natural skills such a child may never be able to overcome any of the factors. A slow learner on the other hand is neither retarded or autistic, they are children who would require a little extra assistance to help them better their performance in academics. Slow learners have `Specific Learning Disability' (SLD). This is a neurological condition. The best remedy for SLD is remedial teaching for normal and extra activity.
2. What do you attribute the sudden interest in this field of education to?
Earlier society was ignorant about autism. There were very few who knew what it was all about. People were ignorant of the fact that if the child was treated his life could improve to a considerable extent. There is need to make the life of a child better. The awareness could be due to the spurt of education among a larger section of people. There is still a lot to be done, and it is impossible for just a handful of people to make the change. We still need to have a wider coverage on these specially gifted children and make people aware that they are a part of the society. There has to be co-operation from people and institutions and it will not be long when autistic children are accepted as a part of the society and with the extra effort and care they will be leading a near normal life within the society.
3. Are there any specific institutions/universities that offer courses in special education?
There are a few institutions/ universities that offer these courses. Sadly they are all concentrated in the larger cities.
The National Institute for the Mentally Handicapped (NIMH) in Secunderabad offers a Bachelor's Degree in Special Education. There are various other Institutions in India that offer diploma courses.
4. What kind of training does one need to undergo to teach these specially gifted children?
It is essential that a special education teacher must have excellent interpersonal skills, for these teachers can have to not only teach the students but also help the parents. The teachers have to make the utmost attempts to help the children develop self-help skills and tune the adaptive skills as well.
5. What is the awareness of autism?
Not all the cases of autism affected are congenital. There can be a case of a normal child being involved in a severe accident that could have affected the neurological system that led to autism.
Some cases of autism may not be as severe as they seem to be. Correct medication and regular sessions with the doctor can help the patient improve considerably. How fast or slow a child learns depends on the severity of his condition.
6. Are there any better known Institutions in the country that offer their services to these children?
There are quite a few institutions in the country that help such challenged children. To name a few -
1.Rehabilitation Council of India
Set up by the Ministry of Social Justice and Empowerment, the Delhi-based organisation's main role is to promote the development of manpower for rehabilitation.
2. Centre for Special Education (DISHA).
Based in Jaipur, DISHA provides an opportunity for children with physical and multiple disabilities - particularly those with cerebral palsy - to discover themselves and develop their potential.
3. National Institute for the Mentally Handicapped (NIMH)
Based in Secunderabad, this is a part of the National Institutes of Health that conducts and supports research on the brain, behaviour and mental health services.
4. Montfort Schools
An education institution that originated in France runs a host of high schools and special schools in India. The organisation imparts technical education, educational of deaf, the dumb and the blind, the physically and mentally.
5. Institute for Remedial Intervention Services (IRIS)This Institution offers training for teachers and parents of the mentally handicapped, specialising in autistic children.
6. SETU Developmental Intervention Centre
A rehabilitation and education centre for developmentally disabled young children.
PRATIBHA GADHALAY
Sexuality is still a taboo topic in many societies -- and the taboo is even greater for people with disabilities. "Parents and relatives believe that a woman with a disability should not engage in sex," says Gladys Charowa, founder member and director of Harare's Disabled Women Support Organisation. She is a single mother who has been living with disability since a car accident in 2001. It is not quite so bad for disabled men, she points out: "They can easily find a partner and marry. Women are being denied this right by parents and relatives."
As a result, some sleep with any man, to get away from their parents. Others are taken advantage of by men, playing on the women's need to be wanted and loved. Many are raped precisely because of their vulnerability: their disability may make it difficult for them to get away or fight off attackers or, in the case of mental impairment, to understand what is happening.
Ugandan disability activist Patrick Kirumira cites the case of a blind primary school pupil who was raped by two boda-boda (motorcycle taxi) drivers and became pregnant. They may have gambled on her inability to identify them.
Indian disability activist Kuhu Das says research shows that almost 90% of disabled women experience sexual abuse, exploitation and violence from the very people who are supposed to be helping them -- caregivers, close relatives and family members.
Sexual partners are also often abusive. Kirumira says that because people with disability feel they have fewer chances of a relationship, they tend to stay with a partner even if he is violent or takes many other partners. A Save the Children Fund survey in Uganda and Rwanda found that young disabled people felt they were less likely to have a faithful partner than their non-disabled peers, and many felt they should be "grateful" to non-disabled partners. A girl in Rukungiri, western Uganda, told Kirumira that her partner visits her after dark and has warned her that if she ever reveals his identity it will be the end of the relationship. "They now have a child; she cannot make any demands or reveal the identity to anybody, for fear of losing him."
HIV/Aids complicates the problems of discrimination and abuse. A woman who is raped, or has little choice in sexual partners, or has no power in a relationship -- which is the experience of huge numbers of people with disability -- runs a greatly increased risk of contracting a sexually transmitted disease. Some abusers also believe the myth that sex with a disabled women cures Aids, or think that disabled woman are not likely to be infected with HIV.
Disabled people are less likely than others to be informed about HIV/Aids, even in societies such as Uganda where public information campaigns are widespread. Because they are seen as unlikely to have sex they often miss out on traditional sex education; because they are often illiterate, they may not be able to read publicity material; because they are often poor they may lack access to radio and TV.
Kirumira tells of a disabled man who approached a village health team for a packet of condoms and was asked, "What do you want to do with them?" Rather than risk further mockery and humiliation, the man chose to do without a condom. The difficulty experienced by men in such circumstances can be multiplied many times for a woman.
"First and foremost as women, secondly as women with disabilities. It is still worse if a woman has disability and is HIV-positive. This means this person is being discriminated against three times," says Charowa.
HIV/Aids organisations are rarely willing to work with people with disabilities, she says. There is no readily available information in Braille or sign language at voluntary testing centres. No provision is made for the blind to read the instructions on condoms.
To avoid yet further hostility, people with disabilities who also have Aids, frequently avoid getting treatment.
"They may choose to suffer and die quietly than come out and expose themselves to humiliation and stigma," Charowa says.
Minal Doshi, an Indian activist, started a global campaign after she realised that the Millennium Development Goals -- which include halting the spread of HIV/Aids, halving extreme poverty and providing universal primary education -- have a major flaw: they do not mention disability. Most estimates say one person in 10 is disabled, a word that covers everything from legs blown off by landmines to mental illness, and from epilepsy to deafness. "Given that an estimated 10% of the world's citizens are disabled, the Aids crisis cannot be addressed successfully unless individuals with disability are routinely included in all Aids outreach efforts."
Daniel Nelson is editor of the OneWorld UK Website
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