Inclusion can make a big difference in the lives of people living with Down syndrome in Nigeria

Thelma Chioma Abeku

I had a conversation with a mother whose son was born with Down syndrome and one of her biggest challenges was “people’s insensitivity to her plight as a parent and her son’s condition”. She spoke of the time a stranger scolded her for abusing her five-year-old boy who, because he hadn’t mastered potty training yet, was still wearing diapers. The stranger continued to brag about her own toddler who already knew how to use the potty without needing much help. “This kind of embarrassing situation is what I go through most of the time,” she said.

A chromosomal disorder

Down syndrome is one of the most common chromosomal abnormalities in humans. It is a genetic and physical disorder that occurs when an individual has an extra copy of chromosome 21. Although the risk of having a child with Down syndrome increases with the age of the mother, a baby with Down syndrome can be born to a mother of any age. It exists in all parts of the world and has a wide range of consequences on learning styles, physical traits and health.

People living with Down syndrome typically have distinct physical characteristics, unique health issues, and changes in cognitive development. Some common physical characteristics may include: upward slant eyes, low muscle tone, short stature, short neck, and small hands and feet. Alterations in their cognitive development can lead to learning disabilities and developmental delays.

Worldwide, between 3,000 and 5,000 babies are born with this chromosomal abnormality each year. Although there are people living with Down syndrome in Nigeria, there is a lack of information about the condition. The only research on Down syndrome in Nigeria was conducted in a hospital, over a period of 9 years; from April 1972 to December 1980. The results, which were published in 1982, revealed a frequency of 1 in 865 live births.

Unfortunately, people with Down syndrome in Nigeria are, more often than not, relegated to a life of drudgery and neglect by their parents and society due to the culture of stigma. They are often excluded from certain elements of society and, in extreme cases, even their right to life is denied.

People with Down syndrome, regardless of age, are people first. They are people with abilities, strengths and weaknesses like everyone else. They may have additional needs, but first they have the same needs as everyone else.

Total inclusion for all

Today as I recall my conversation with the lady, I am acutely aware that somewhere in rural or even urban Nigeria there is a person living with Down syndrome who is being denied their right to a normal and inclusive life. World Down Syndrome Day 2022 (WDSD) was celebrated in March, with the theme “What does inclusion mean? This is a relevant question because for many reasons, one of which is a lack of understanding of what inclusion is and what inclusive systems look like in practice, people with Down syndrome and other disabilities do not enjoy full and effective participation and inclusion in society. .

The United Nations, in the General Principles of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), calls for: “full and effective participation and inclusion in society”. Like everyone else, people with Down syndrome deserve to live their best life. It starts with creating an inclusive and non-segregated environment where they and their loved ones can thrive on a daily basis.

The quality of health care, education and community support that people with Down syndrome receive makes a real difference in their progress throughout life. Raising children with Down syndrome involves providing the appropriate information, resources, and support to students, their parents, and educators to ensure they receive the right upbringing that equips them to live a full life. of choice. Providing them with adequate health care also means ensuring that they have access to the quality and level of care required to meet their particular and daily health needs.

It is therefore important that federal and state governments adopt policies that provide free, inclusive educational programs for people with Down syndrome at all levels, as well as a package of health care benefits for them. This is what inclusion means. We must commit to educating ourselves to raise awareness for people living with Down syndrome and other disabilities to destroy all forms of prejudice and end all forms of stigma to ensure that everyone is treated with empathy and compassion.

Chioma Abeku is Information and Research Officer at Nigeria Health Watch

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