Breaking barriers of social stigma
By Smriti Daniel
Anoja Rajapathirana was afraid no one would come. Yet the hall at the Sri Lanka Foundation Institute was packed to overflowing last Tuesday with supporters, media and the children and families that the EASE Foundation works with. Envisioning ‘A World Where We All Belong’ the foundation launched an advocacy campaign designed to challenge the social stigma around people with disabilities, the goal being to educate the public and make it possible for differentlyabled people to be a part of the mainstream – to pursue careers, have families and to live lives of purpose and meaning.
A series of videos created by filmmaker Anuradha Devapriya brings to life common prejudices. For instance, that to see a disabled person is an ill omen for a pregnant woman or that the presence of a disabled person at an event such as a house warming is inauspicious. These beliefs are challenged in the video but the idea is actually for these images to serve as a catalyst for change. EASE hopes to take them nationwide, screening them in schools and institutions, and asking viewers to respond. They hope these conversations will not only force people to examine their own beliefs but also lead to new ideas on what can be done to overturn the social stigma associated with disability.
Anoja co-founded EASE with her son Chandima Rajapathirana. Chandima is autistic and verbally challenged, but uses the technique known as Facilitated Communication (FC) to speak his mind. An advocate and poet, Chandima personifies a challenge to narrow-minded, ignorant notions around disability. In particular, he fiercely contests the sidelining and dismissal of disabled people as unable to contribute anything to their families and communities or the idea that they will remain burdens and outcasts all their lives.
In a speech he wrote to mark the launch of the videos, Chandima said: “I am grieved by the stories many parents of people with disabilities bring about their experiences. How can such prejudice and ignorance exist in the 21st Century? Some try to disguise their utterly reprehensible ideas under a cloak of religion or custom. No religion espouses the denigration of a group as helpless and harmless as we people with disabilities. And any custom that does so is surely to be rejected.” Chandima went on to say “It’s time we held a mirror up to society so it can see the true picture. Our hope is that our video will do just that.”
Anoja also addressed the gathering as did Prof. Harendra de Silva and N.G. Kamalawathie of the AKASA Foundation for women with disabilities. For Kamalawathie, who has won medals both for her work as a human rights activist and repre- senting Sri Lanka at wheelchair races in international sporting events, the challenge begins at home. The first people a disabled child is isolated by is his or her family, she told the audience, going on to praise her parents, decision to treat her the same as her siblings. Now she would like to see her government and society at large do the same.
Speaking of how society stigmatises disability, Anoja said: “This happens because most people imagine that a person with a disability, especially a significant disability from birth, does not know, does not understand, and does not feel.” She remembers how 20 years ago, an eminent doctor in the US told her that Chandima would neither love nor know he was loved. “Fortunately we knew better, but the hurt of that is still with me. And Chandima, he embraces the entire community of people with disabilities as his tribe.”
Bringing in a medical viewpoint, Prof. de Silva spoke of the challenges in diagnosing autism and in dealing with the denial parents often display. He emphasised the importance of early intervention in helping children with autism. When the videos were screened, he underlined how unscientific such superstitions were, arising as they did from ignorance.
The videos drew a response from the audience as the organisers had hoped– with people sharing their personal experiences, challenging the ideas set forth and calling for suggestions on how the public should respond when faced with such discrimination.
This round of advocacy is but the latest chapter in the EASE Foundation’s work. In ongoing programmes, students at EASE experience a highly individualised, intense curriculum comprising academics, exercise, art and dancing as well as self-care skills. “We consider party planning an essential life skill, jokes aside it teaches you to connect, and give to others, besides having fun is a human imperative. So our kids do that too,” says Anoja.
EASE offers their services for free and this has been made possible by donations. Dialog, gave them a startup fund, while MAAS East Asia and Courtaulds filled a wish list and the Global fund for Children and Yala fund, WeCare Sri Lanka, Access International have provided financial support for the organisation along with a number of well-wishers and friends. EASE currently has three teachers, all graduates of the National Institute of Social Development who have had their special education training on the job with Anoja and Chandima.
Recognizing the tremendous strain parents can feel, EASE offers support groups and works closely with parents through every step of the process. “We do all this because their child needs a stable, strong, positive and knowledgeable family base. In the process we create strong parents,” said Anoja, sharing examples of how one mother had changed the negative attitude of her child’s school teacher while another had taken on a bus full of people who were gawking and commenting on a young autistic girl. To her, this is proof that “ordinary people can and do change the world.”
World Health Organization studies estimate that 11% of the world’s population is disabled. In Sri Lanka, it is reported that 1 in 93 children is autistic. Speaking of how people with disabilities are four times more likely to experience violence, Anoja asked her audience: “Would you agree that it is our responsibility collective and individual to change that? Illness, accident, and old age make disability a likely prospect for the most able of us. So it is in all our interest to make this, a world where we all belong.”