Living in the shadow of uncertainty

The cornerstone of this cooperation must be the active participation of persons with disabilities in their full diversity, and their full inclusion in all decision-making processes.

UN Secretary-General, António Guterres

"Who will look after our child after our demise? Who will be their friends and family when we are not there?"

These questions constantly haunt parents of children with disabilities. They feel that our society is still not inclusive enough to ensure rights of persons with disabilities.

Muhammad Adnan and Arifa Adnan have a daughter with autism. When Maisha, their only daughter, was diagnosed with autism at the age of around six, they felt the sky had fallen on their heads.

"We decided not to take any more children and to dedicate our entire life to ensure a safe future for our daughter. We must ensure that she gets a good education and she has enough property when we are not around to protect her from this hostile society," the father said.

Arifa said, "In many countries, children like her are often included in the mainstream schools and they follow a flexible curriculum. However, all the mainstream schools we contacted rejected my daughter because of her condition. The parents of other children often raised stronger objections against her enrolment than the teachers did."

Maisha is now studying in a special school and her parents are saving most of their earnings to buy a flat in the capital and leave a substantial amount for her so that she has shelter and a monthly income when they are gone.

"Maisha is 18 years old and it is quite apparent that she will not be able to raise a family. There are concerns even if we leave property because there is no shortage of people who will want to grab it when they get a chance. We feel completely helpless thinking about her uncertain future," shared a weeping Arifa.

While Adnan and Arifa are trying their best to secure a future for their daughter, the situation is even more desperate for Lotamoni and Shihab who lost their mother during their early childhood. Both of them have intellectual disabilities.

Their mother, a house staff, died when Lotamoni was 8 and Shihab 5. Their father left them to their maternal grandparents' house and simply vanished without leaving a trace.

Their grandfather Abdul Jalil, aged around 60, said, "I cannot abandon my grandchildren. They do not have anyone left in this world except me and my wife.

"We get a meagre disability allowance for them from the authorities. I make a living by pulling rickshaws. We could not enrol them in any school as they have disabilities. They are fully dependent. We are extremely worried about how they will survive when I will not be able to work and feed them."

Parents of most children with disabilities share similar concerns.

According to the preliminary report of National Survey on Persons with Disabilities 2021 conducted by Bangladesh Bureau of Statistics, 2.80 percent of Bangladesh's total population have at least one form of disability.

However, according to the World Report on Disability published in 2011 by the World Health Organization and The World Bank, there are around 16 million people, approximately 10 percent of the country's population, with disabilities in Bangladesh.

Both the reports revealed that such a large number of people with disabilities are lagging behind in enjoying basic rights like healthcare, education, food security, and social participation.

Supreme Court lawyer Rejaul Karim Siddiquee, founder of Disability Inclusive Justice and Legal Aid Association, said, "Persons with Disabilities Rights and Protection Act 2013 guarantees equal treatment and full inheritance rights for people with disabilities."

The law states that a government committee headed by the Upzila Nirbahi Officer (UNO) will look after the property of the persons with disabilities after their guardian's demise.

The parents can also form a trustee board to look after the property and to ensure that the entitled person is properly benefitting.

There is also the Protection of Persons with Neuro-developmental Disability Trust Act 2013 under which they are entitled to get support and protection from the government.

"However, lack of awareness about these laws and lack of accountability and transparency of the operations of the trustee boards are some of the biggest obstacles to creating a safe future for persons with disabilities. We get numerous complaints about corruption of trustee board members, but very few parents seek legal protection because they are not aware of the 2013 law," said Rejaul.

"Upazila level committees are not very active either. The UNOs have so many tasks that they can pay little attention to this important and legally binding responsibility," he added.

Sarder A Razzak, father of a child with Down Syndrome and president of Down Syndrome Society of Bangladesh, said, "To ensure a secured and independent life for our children, there is no alternative to building a community which will include and respect persons with disabilities. For this purpose, we have been working with siblings and relatives of children with disabilities.

The initiatives are bringing positive changes, opined Razzak, adding that five persons with Down Syndrome, all of whom are from humble backgrounds, have been recruited by several organisations recently and the employers were quite impressed by their performance.

These persons with Down Syndrome can commute to their workplace alone and execute their tasks like everybody else, he said.

"It was unimaginable even a decade ago. But children with neuro-developmental disabilities are still considered mad by many people. We still have a long and difficult path ahead of us. Nevertheless, when I see these amazing achievements, I often tell my wife not to worry about our son's future." said Razzak.

Int'l Day of Persons with Disabilities Today

• The World Report on Disability published in 2011 found there are around 16 million people with disabilities in Bangladesh whereas the number of persons with disabilities identified by the Bangladesh government is around 2.9 million
• A recent BBS survey found around 46 percent of the identified persons with disabilities have received government allowance at least once in their lifetime
• According to Situation Analysis on Children with Disabilities conducted by Unicef in 2014, only 11 percent of children with disabilities can receive any form of education in Bangladesh whereas primary school enrolment is almost 100 percent
• According to the BBS survey only 27 percent people with disability can participate in any economic activity