There are many myths about special children – those who have nerve-development problems. There is a social stigma about them. President of Society for the Welfare of the Intellectually Disabled (SWID) Bangladesh Jowaherul Islam Mamun and First Joint Secretary Mahbubul Monir discussed about special children, their care and struggle amid the coronavirus pandemic in a webinar titled The crisis of the neuro-developmentally disabled in times of coronavirus and how to overcome it”. The discussion was moderated by The Business Standard’s journalist Sadia Rahman
Sadia Rahman: Welcome everyone to our webinar. The topic of our webinar is "The crisis of the neuro-developmentally disabled in times of coronavirus and how to overcome it". We know that we have many misconceptions about special children – those who have nerve-development problems. There is a social stigma about them. We will discuss those matters today with Jowaherul Islam Mamun, president of the Society for the Welfare of the Intellectually Disabled, Bangladesh (SWID) and Mahbubul Monir, first joint secretary of the organisation.
At first, I would go to Jowaherul Islam Mamun. Who do we call disabled or neuro-developmentally disabled persons? And what are the reasons behind such disabilities?
Jowaherul Islam Mamun: Disability is an obstacle. It can happen for many reasons – physical, intellectual. Any obstacle to the human body or mind we call disability. If a person cannot move freely or normally for any biological reason and cannot participate in normal activities like other people, we call them disabled. There was a time when people had some misconceptions about disabled people. If there was any disabled child in a family they would think that this was the result of their sins. They would take it as a curse. And the disabled child faced discrimination in the family.
There was no awareness about the fact in the society. As a result, there was a negative concept in society about this. However, nowadays, time has changed as people do not have any negative perceptions about disabled people. But this awareness has not brought enough change in the society to provide education, health services, entertainment, etc., for disabled people.
There was a time when the disability sector was divided in four sectors: physical disability, visual disability, hearing disability, and intellectual disability. Intellectual disability was called mental disability. All the programmes concerning disability in Bangladesh were centred on these four sectors. But in 2013, a disabled rights protection law was passed in the parliament of the country. And the UN also passed a convention on the rights of disabled persons which said every state should have laws to protect disabled persons. It said if there is any existing law concerning disabled persons which has lacking, it must be updated.
Sadia Rahman: Now, we will go to Mahbubul Monir. And my question to you would be, are persons with disabilities in need of special care? And if yes, what types of special care do they need?
Mahbubul Monir: We have a different category of disability that Mamun bhai mentioned earlier. Among those categories two are most common in our country, which are recognisable by most people – Down syndrome and autism. Now, how to give special care or train these disabled children? We have specially trained teachers in different schools who try to help these children be self-dependent. We try to make them efficient for society.
Another thing is these sorts of children like music and dancing. The teachers in the school teach them with these sorts of activities. They get pleasure from music and dancing. They are not that fond of poetry or drama. The autistic children can draw pictures better. So, in normal times, we do special care for them. But in this time of the novel coronavirus, they are facing some problems. The systematic life that they followed has been deviated due to the pandemic. They cannot go to school, they cannot go outside. They are not able to take part in any kind of cultural activities. They are frustrated and arrogant because of this situation.
Sadia Rahman: In 2013, a law was enacted to protect persons with disabilities in our country. Does the law help these disabled persons amid the present situation?
Jowaherul Islam Mamun: This law includes almost every clause that is needed to protect disabled persons in their everyday life. Now, it has been seven years since the law was passed. There have been many action plans in light of this law. But in all these years the number of schools that are needed for these special people has not been established. The school buildings are not properly made. There has been a lack of learning materials. There are not enough: open fields, classrooms, entertainment materials, etc.
Sadia Rahman: One thing is clear that when we talk about persons with neuro-developmental disabilities we mostly mean those who live in urban areas. There are many people like them in the rural areas too. But they do not get the necessary care that they need. Now, I want to ask Mahbubul Monir – in the present moment what are the expectations of the families with autistic children from the government?
Mahbubul Monir: Here, I will repeat the words of Mamun bhai that the 2013 law provided some facilities for disabled persons which have not been implemented properly. Now, parents like us who have autistic children know that at a certain stage of life we all will die. By then these children will be grownups. The question is, who will take care of them after our deaths? Those families who are rich can make future arrangements for their autistic children but what will happen to those who are poor?
Our expectation from the government is that they should make a programme that will ensure the disabled persons' life after the death of their parents.
Sadia Rahman: Thank you for your valuable opinions. Now, we are at the end of our webinar. I will ask my last question to both of you – what can we do to improve the situation in the present moment?
Jowaherul Islam Mamun: In this time of the novel coronavirus pandemic, SWID Bangladesh has been trying to do something different for disabled children. We have increased our connectivity with all the branches online, through smart phone technology, zoom meetings and other platforms. We have around 534 branches in the country. We made different groups like a parents' group or teachers' group and demonstrated our school activities via virtual platforms. We told the guardians to make the children do some domestic work. We also told them to record videos of their music or dance performances and post them on our groups. And thus we tried to communicate with 40 to 50 branches, not all branches were communicated because of our limitations, and gave directives in the pandemic situation.
Mahbubul Monir: Autistic or disabled children are prone to be obese if they do not have enough physical movement. They have this problem more than other children. And staying at home has made the movement of the children very limited.
Here, the government should take the decision. It would not be possible for us to open all our branches without prior government decision. So, the government has to take the policy here.
Sadia Rahman: Thanks to both of you. We have learned many things concerning persons with neuro-developmental problems and their situation amid the novel coronavirus pandemic. We have also learned what we should do to help them in this crisis moment. We hope the authorities will take proper steps for their wellbeing.