As the world marks the 2023 World Down Syndrome Day today, March 21, 2023, the attention of President Muhammadu Buhari and the leadership of the National Assembly have been drawn to the disturbing lack of access to adequate education and healthcare resources, lingering discrimination and stigmatisation against children living with Down Syndrome and other disabilities, in outright violation of the Discrimination Against Persons with Disabilities (Prohibition) Act, 2018.
Down Syndrome (or Trisomy 21) is a condition in which a person has an extra chromosome. People living with the syndrome are often impacted by diverse health challenges including internal organ defects and intellectual disability.
World Down Syndrome Day is annually celebrated on the 21st of March globally to highlight the peculiar challenges faced by people living with Down Syndrome and how government and the society could help to assuage their plight.
Signed by President Buhari in January 2019, the disability rights law, among other things, prohibits discrimination against anyone on the basis of disability.
The President and the Legislature have therefore been called upon to take steps to ensure compliance to the law, by compelling relevant government agencies to escalate enlightenment and sensitization about the provisions of the law across the nation to promote compliance and curb discrimination against people with disability.
This charge was informed by the persisting discrimination and stigmatization (by both public and private institutions) and cultural and social prejudices against children living with disability in Nigeria, despite the law that frowns at such insensitive acts.
This call was contained in a letter to President Buhari and the leadership of the National Assembly, by Ugo Edward-Dibiana Down Syndrome Foundation, a Non-Profit Organisation, dedicated to advocacy for true inclusion, acceptance and fundamental human rights of children living with Down Syndrome and other such children with (learning or physical disabilities), categorised under ‘special needs.’
According to the Foundation, access to quality education and adequate healthcare resources have remained a daunting challenge for children living with special needs in Nigeria.
Referencing Part V (21) (1) of the Discrimination Against Persons with Disabilities (Prohibition) Act, 2018, which clearly states that government shall provide free and adequate healthcare for people living with disability, it pointed out that this hasn’t been the case in Nigeria.
According to Down Syndrome International, roughly half of the children born with Down Syndrome would have heart defects that would require surgery and adequate post-surgery medicare. And in Nigeria, parents are made to bear this cost without support from the government, contrary to the provisions of the law, the Foundation said.
It added that apart from healthcare issues, “It’s also distressing to note that five years after the Discrimination Against Persons with Disabilities (Prohibition) Act, 2018 came into existence, little or nothing has been done by the government to ensure compliance in order to mitigate the lingering ugly experiences by people with disabilities, especially children with special needs.”
The Co-founder of the Foundation, who is also a parent of a child living with Down Syndrome, Mr. Edward Dibiana, in a statement issued in Abuja on Monday, March 20, 2023, said that “despite this law which was supposed to protect the interest of people living with disability, parents of children with special needs still experience difficult and distressing challenges in getting schools to accept their children or wards, as many schools in Nigeria still reject these children on account of their conditions. That’s a sad example of obvious discrimination that the law prohibits.”
He further said “In some cases, children living with special needs are made to pay extra fees, much more higher than those paid by their peers in the same class, just for them to have access to education, in violation of the discrimination law.”
The Foundation also disclosed that cultural and social prejudices and stigmatisation of children with special needs have not abetted despite the good intentions of the law. The perception that children with special needs are carriers of bad luck or possessed by some demons is still prevalent in Nigerian society, it futher said.
Mr. Dibiana said further: “The beauty and credibility of every democracy are often judged by how it protects the weak and the disadvantaged demography against tendencies that threaten to hinder their well-being, dignity and survival in the society.
“For instance, sometimes children with special needs in Nigeria are tragically ‘allowed’ to die, sadly, due to circumstances that are interwoven in lack of access to healthcare, cultural/religious prejudices, ignorance and incapacitating economic conditions of many indigent parents.”
He, therefore, called on the Nigerian government – present and the incoming – to take steps to protect this vulnerable demography by ensuring strict compliance to the Discrimination Against Persons with Disabilities (Prohibition) Act, 2018, and any other laws that were made to protect their rights and interests.
Edward Dibiana, Co-founder, Ugo Edward-Dibiana Down Syndrome Foundation.