By Duma Edward-Dibiana
In every person from cradle to grave, there is always a deep craving to be appreciated, treated with dignity and valued. These human expectations do not in anyway exclude people living with Down Syndrome and other special needs individuals in the society.
How do you feel when you are deprived or prevented from participating in certain things because of your colour,race,tribe,social status,religion or other considerations? How do you feel when you are outrightly sidelined in what you know you are qualified for due to one lame excuse? That feeling of rejection, denigration or ghosting as if you don’t exist, drains one of self belief and self esteem. It’s a horrendous feeling. That’s apparently how most children /people living with Down Syndrome and other special needs feel most times, when the are systematically denied of their fundamental human right, by the society, just because of their peculiarities.
What do you know about the genetic condition referred to as Down Syndrome (DS)?
A simple explanation would help us for better understanding.
Every human being is born with 46 chromosome. 23 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 animality manifest in diverse forms that impact on them in ways that affect their development abilities, both physically and mentally.
Chromosomes are bundles of genes that our body relies to function optimally. But that can only happen when we have the current number. With Down Syndrome, this extra chromosome present in their make up 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 a only a genetic disorder and it’s not contagious. While it’s a medical fact that DS cannot be cured, It is a life long condition that can be be managed, with proper attention and early intervention, both medically and useful therapies.
Every person born with Down syndrome 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 like 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, prioritizing etc.
~Some of them would grow up to live almost entirely on their own while others may need more help taking care of themselves.
Monday, March 21, is World Down Syndrome Day. It is a day set aside to celebrate people living with Down Syndrome the world over. It is a global awareness/sensitization day officially observed by the United Nations (UN) since 2012.
Why March 21? March is the 3rd month of the year representing the 3 chromosomes and 21 represents the 21st chromosome where this disorder occurs.
Every year this day, millions of people living with Down Syndromes, 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, I ask, 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.
Are the above mentioned obtainable in our society? Your guess is as good as mine.
In our daily lives – at the work place, market, school, community, recreation parks and worship centers, we witness subtle and/or outright discrimination of people with Down Syndrome and other special needs/disabilities.
The United Nations created an agreement calłed ‘THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES ‘ or ‘CRPD’ .The CRPD says that people with disabilities should have “full and effective participation and inclusion in the society. So, why are many people with DS and other disabilities not fully included in every day activities in our communities ?
So many reasons have cropped up as why these rare gems are not included in the scheme of things. Some of the reasons are that to run an inclusive system is very expensive,lack of resources,manpower and that many people do not understand what inclusion means and how to be inclusive.
Why some of the above mentioned reasons may be true, they are not good enough to deprive fellow humans of their rights to live a more fulfilled life like every other beings We know that the opposite of inclusion is exclusion. And if as a community,office/organization,school,church,mosque we can outrightly exclude people with Down Syndrome and other special need/disabilities, then it means we know what inclusion means just that we don’t want to act on it for obvious reasons (their conditions).
For inclusion to thrive there must be a mind shift! An attitudinal change!The society must understand that it is not their fault that they are different and that it could have been anyone else. Your creed,gender,religion,tribe,social status,race not withstanding, shouldn’t be a condition for true inclusion.
We live in a society bedeviled with prejudice,stigmatization and discrimination of people living with Down Syndrome and other special needs. And all these, I believe, stem from ignorance and lack of understanding. Until we embrace our differences/diversity and replace the above mentioned with empathy,which is the ability to place oneself in the shoes of another and imagine life from a broader perspective,inclusion will remain a mirage.
Inclusion is also inevitable in the education sector because it addresses and responds to the diverse needs of learners.It removes any barrier to learning. My question is, Are children living with Down Syndrome and other special needs really included in schools that claim to run inclusive system? Do they have equal rights and access to curricular and extra curricular activities vis-a-vis their neurotypical mates? These questions are begging for answers.There must be an attitudinal change for inclusion to gain the needed ground.
So, I urge government at all levels and stakeholders to truly and sincerely embrace that pattern of education that modifies/adjusts classroom practices meant for the ‘normal’ child to accommodate the peculiar needs of a child with Down Syndrome. That pattern of education that doesn’t discriminate,but rather makes room for people living with Down Syndrome to develop and learn at their own paces and abilities as their unique conditions would allow. That pattern of education that teaches children from a tender age about equality,diversity and respect for others.That pattern of education that assists these people to meet their peculiarities and maximize their potentials.THAT PATTERN OF EDUCATION IS CALLED INCLUSIVE EDUCATION!
Let’s harp on it and watch in amazement as our children with Down Syndrome and other special needs soar and break previously seen and unseen barriers! True inclusion will always inspire hope and belief!
For most children living with Down syndrome and special educational needs,inclusion is often experienced as a painful form of exclusion.They should learn alongside their peers and given every opportunity to form meaningful friendships devoid of adult interference.Inclusive education drives the much needed enlightenment home because it allows people with Down Syndrome to mingle,socialize and showcase their strength and weaknesses.Their peers see them for who they really are and make efforts to unconditionally accept or reject them as they would do to other children without these challenges.To foster inclusion,every member of the school community must make efforts to model behaviors that respect and accept individual differences.
Finally,children with Down syndrome deserve our warmth and friendship, so, it is important for all hands to be on deck for increased sensitization and awareness for a wider outreach because increased awareness and sensitization will lead to enhanced inclusion and a better society.
• Mrs Edward-Dibiana, a special needs children wellbeing advocate and learning support expert, works with Premier International School, Abuja.