For long, Down Syndrome has had a vague presence in Bangladesh, often being excluded from the public eye. People with Down's used to be stigmatized by a large section of society and the condition is surrounded by misconceptions and superstitions.
This has changed in the last few years thanks to a group of people, led by none other than the parents of children suffering from Down Syndrome, who are bringing the gravity of this condition to the forefront. Sardar A Razzak, chairman of Down Syndrome Society of Bangladesh and also a father of a child with Down Syndrome, can rightly claim the credit for raising mass-scale awareness about Down Syndrome in Bangladesh.
Razzak, with a five-member delegation, attended the first India International Down Syndrome Conference 2017 held in the Indian capital New Delhi on September 9 and 10. This is the first time a delegation from Bangladesh has attended an international conference about Down Syndrome.
A worthwhile experience
Razzak, after returning to Dhaka from the conference, told the Weekend Tribune that it was a worthwhile experience. “There is no alternative to gaining knowledge to fight the stigma surrounding Down Syndrome. In conferences like this, there is plenty of knowledge being shared and spread,” he said.
The event was attended by over 350 delegates from India, Nepal, Bangladesh, Myanmar, Sri Lanka etc. Razzak said that during the different sessions of the conference, they got to meet renowned experts on Down syndrome from around the world. “We talked with them, learned from them and shared information about the situation in Bangladesh.”
During the conference, Razzak presented a paper on ‘Life for people with Down syndrome in Bangladesh.’ In that paper, he depicted how people suffering from Down Syndrome are being kept hidden away and sometimes locked behind closed doors, as parents are afraid of being victimised.
Razaak said the post-natal diagnosis of Down syndrome is very poor in our country, especially in rural and suburban areas where a large number of births are attended to by Traditional Birth Attendants (TBA) at home or in clinics with limited resources. They are certainly not equipped or qualified to diagnose the condition at birth.
“I told the conference that even in city hospitals in Bangladesh, very few cases are identified at birth and by specialist doctors only, while others remain in darks. In some cases, parents are suggested to go for the Karyotyping test to diagnose the condition of their babies.”
Razzak said adults with Down Syndrome are leading isolated lives in Bangladeshi communities. “They have very little participation in social activities due to a lack of acceptance and inclusion of people with Down Syndrome. They more or less stay at home with families and do some household work.”
Interestingly, when Razzak shared the scenario of Bangladesh, he found that other countries, including India, were in similar situations. In fact, in many parts of the world, people think persons with Down syndrome are intellectually disabled and have no potential to contribute to society.
“We have learned some ways using which relevant associations are fighting Down Syndrome in other countries and are raising awareness on the issue. We have also made some effective connections with those communities through which regular knowledge sharing on Down Syndrome could be facilitated.”
A foray into the academic approach
Other members of the five-member delegation included three academics - Prof Dr. Hakim Arif, Tawhida Jahan and Sharmin Ahmed from the newly founded Department of Communication Disorders of Dhaka University (DU), and Uttam Howlader, executive director, Down Syndrome Society of Bangladesh.
Two other papers by lecturers Jahangir Alam and Sharmin Ahmed on nonverbal communication, as well as a poster presentation by Prof Dr Hakim Arif and assistant professor Tawhida Jahan on identifying emotional expressions of Down Syndrome children, who are all from the Department of Communication Disorders, DU, were part of the different sessions at the conference.
Prof Dr. Hakim Arif said that the Department of Communication Disorder was founded in 2015. Since its inception, this was the first appearance of its faculties in an international conference.
“We have conducted research on people suffering from Down Syndrome in the past two years and based on our research, we prepared these papers. Our research gave us valuable insight into some of the underlying problems that people with Down Syndrome face.”
About the paper he co-authored, Prof Hakim said it focused on the responses of people with Down Syndrome during an emotional situation.
“In another paper, we researched on how kids with Down Syndrome communicate non-verbally.”
Prof Hakim said that they would conduct further research on several issues related to Down Syndrome. “Through our consultation with peers that we met in the conference, we have already thought about some topics on which we can work. We will start that soon."