The Albino Foundation Public Notice
DUMA EDWARD-DIBIANA
From cradle to grave, there is always a deep craving in every person to be appreciated, valued and treated with dignity. These human expectations do not, in any way, exclude people living with down syndrome and other special needs individuals in the society, writes DUMA EDWARD-DIBIANA
How do people feel when they are deprived or prevented from participating in certain things because of their colour, race, tribe, social status, religion or other considerations? How do you feel when you are out rightly sidelined in what you know you are qualified for due to one lame excuse? That feeling of rejection, denigration or ghosting as if one doesn’t exist, drains one of one’s self-belief and self-esteem.
It’s a horrendous feeling. That’s apparently how most children and people living with Down syndrome and others with special needs feel most times when they are systematically denied of their fundamental human rights by society, just because of their peculiarities.
What’s Down Syndrome?
What do you know about the genetic condition referred to as Down Syndrome (DS)? A simple explanation would suffice for a better understanding. All humankind is born with 46 chromosomes. Twenty-three from the father and 23 from the mother and they come in pairs. But for people living with DS, have three (3) copies of the 21st chromosome, instead of the usual two (2) copies. So, instead of the normal 46, they have 47, which is an anomaly. And that anomaly manifests in diverse forms that impact them in ways that affect their development abilities, physically and mentally.
Chromosomes are bundles of genes that the body relies on to function optimally. But that can only happen when the numbers are equal. With DS, this extra-chromosome present in their makeup leads to a wide range of issues, from mild to severe intellectual disability and sometimes, some medical conditions. Down syndrome is not a disease. It is a congenital condition. People live with it, but do not suffer from it as a disease. It is only a genetic disorder and it’s not contagious.
While it’s a medical fact that DS cannot be cured, it is a lifelong condition that can be managed, with proper attention and early intervention, medically and useful therapies. Every person born with DS is different and has a different mix and severity of the condition. It affects people differently. They may take longer time to reach important milestones such as walking, talking and developing social skills. They will continue to learn and pick up new skills their whole life. Their mental abilities vary. Most people with DS have moderate issues with thinking, reasoning, and prioritising, among other things. Some of them would grow up to live almost entirely on their own; while others may need more help taking care of themselves.
Today is World Down Syndrome Day, a day set aside to celebrate people living with DS the world over. It is a global awareness/sensitisation day officially observed by the United Nations (UN) since 2012. Why March 21? March is the third month of the year representing the three chromosomes and 21 represents the 21st chromosome where this disorder occurs. Every year this day, millions of people living with DS, their families, advocates, caregivers and friends, create awareness and bring to the fore burning issues concerning these special people.
The theme of this year’s World Down Syndrome Day is “Inclusion Means….” What is inclusion and what does it mean to be included. What is your personal take on what inclusion means? So, what does inclusion mean to you as a person? It’s good to know so we can learn, unlearn and relearn.
What does it mean to be included?
Inclusion means to carry everyone along regardless of the person’s condition. If you are included, you can participate in every meaningful activity everyone else is involved in without hindrances or discrimination. You can go to school and expect to be received like any other child and have access to facilities in the school that would make learning easier and more conducive as regards your special needs.
The Nation
