By Duma Edward-Dibiana
Today is world down syndrome day. Down Syndrome (or Trisomy 21), is a Condition in which a Person has an extra chromosome and according to research it’s the most common identifiable cause of intellectual disability in the world.
On every March 21, for the past 12 years, as declared by the United Nations General Assembly in December 2011, parents, siblings, supporters, friends and advocates of people living with Down Syndrome celebrate and create awareness around the condition in diverse ways.
Every year’s event comes with its own theme and people living with Down Syndrome, their families, professionals, organisations are encouraged to mark the Day with a lineup of activities centred on the theme.
The theme for this year’s event is “With Us Not For Us”, which is a human rights based approach to dealing with issues of Down Syndrome. It implies that people living with Down Syndrome, as every other humans have inalienable rights, and should be involved in decision making process on things that affect them in the family, work place, government institutions and in the society at large. Rather than making decisions and choices for them as though their opinions and preferences, don’t matter, presumably because of their intellectual disability.
The important takeaway from this year’s World Down Syndrome Day message is that persons living with Down Syndrome need the freedom and the support of all to make their own choices. And be embraced, accepted and not seen as people incapable of making their own decisions.It means that decisions about issues concerning them should not be made behind them without their input as if their opinion don’t matter.
But are these focal messages achievable in our dear country Nigeria given the existential challenges faced by these people? We cannot build on nothing! We need to get it right first before we start clamoring for the above theme.
Considering that we live in a society where discrimination, stigmatization, prejudice and subtle/outright rejection of people living with Down Syndrome and other disabilities hold sway, in spite of the Discrimination Against Persons with Disabilities Prohibition Act 2018, which frowns at discrimination against anyone on the basis of disability, it appears we need to first address these challenges as a people.
For you to be given equal opportunity and treated fairly, get a job, take part in decision making, have the freedom to make your choices, you must have what it takes. And you can only get that through accessible quality education, be it formal or informal. And this is still a big challenge in Nigeria as there is obvious inadequate education resources for children living with Down Syndrome and other special needs.
With limited access to proper education (either formal or informal) and healthcare resources, how can someone with Down Syndrome develop the capacity and soundness of mind and body to be involved is critical decision making process that would impact his/her life?
We all have a role to play in the proper integration of people with DS and other special needs into the society. Once we get it right, every other thing would fall in place.
People living with Down Syndrome and other special needs have innate abilities that need to be harnessed. So, when families, schools, government and society give them the opportunity and support they need to showcase their potentials, the determination to succeed would emerge.
Apparently, appropriate education would give them an edge over their condition. So, every support they need to succeed should be made available to reduce the prejudice, stigma and inequality.
Government and stakeholders should make deliberate efforts in investing and providing quality and inclusive education for children living with Down Syndrome and other special needs. This would improve their self esteem, independence and overall usefulness to themselves and the society.
According to Down Syndrome International, research indicates that a vast majority of children with DS around the world will benefit from placement in mainstream schools and receiving their education alongside typically developing peers of their own age.
Learning, interacting and playing alongside other children that do not have special needs, offer them the opportunity to benefit from those other children or ‘role models’, because children naturally learn more from other children than they do from adults. This approach will help them develop age appropriate behaviors and sustain relationships.
While proper support may be required to facilitate learning, true inclusivity promotes independence and benefits not only the child with Down Syndrome but other children as well, as it also leads to greater understanding and less prejudice in the local community and society at large.
Inclusive education, refers to the system of education where all learners are able to access equal opportunities to education and learning in an inclusive environment and benefit from equal resources that accommodate their individual needs.
It is about embracing a system of education designed to address the needs of all learners irrespective of their peculiar conditions, in terms of classroom design, curriculum, and teaching resources that would enable all students to learn and participate in school activities together in a way that is supportive, responsive, and respectful, without any form of prejudice or discrimination.
This approach offers their peers the opportunity to see them for who they really are,learn to be patient with them and make efforts to unconditionally accept or reject them as they would do to other children without these challenges.
To this effect, I urge government at all levels and stakeholders to embrace that pattern of education that modifies/ adjusts classroom practices meant for the typical child to accommodate that child with Down Syndrome also.
The pattern of education that doesn’t discriminate or segregate but rather makes room for everyone regardless of their condition. There is need for an attitudinal change for inclusion to gain the needed ground in educational institutions for the overall benefit of all children and the society.
After all, people living with DS do not ask for our pity. They’re simply asking for their rights and empathy. For inclusivity. For us to treat them with respect and dignity. They are asking for unhindered, access to education and opportunities to explore and excel, just like other children. That is inclusion. That is human rights. That is humanity.
* Mrs Duma Edward-Dibiana is a special educator. advocate for the rights of children with special needs and also a mother of a child with Down Syndrome.