Today is World Down Syndrome Day (WDSD). It has been observed on 21 March by the United Nations since 2012, as a means of raising awareness about the genetic condition. The day is celebrated on this date because it symbolises the 3 copies of the 21st chromosome, the genetic anomaly which leads to Down’s syndrome. Typically, the nucleus of each cell contains 23 pairs of chromosomes, but an extra copy occurs in people with Down’s syndrome, altering the course of development.
WDSD has special significance for my family and I because I have a 6-year old daughter who has Down’s Syndrome. Last year, on WDSD, I shared Isha’s story publicly for the first time with Makchic readers. Isha and her friends from the Kiwanis Down Syndrome Foundation National Centre also starred in a YouTube music video which received a lot of support from everyone.
“We Decide”
This year, the theme for WDSD is “We Decide”. This meaningful call to action states that “All people with Down’s syndrome should have full participation in decision making about matters relating to or affecting their lives.”
Just like you and me, an individual with Down’s syndrome also desires to have lifelong personal development, rich personal relationships, high quality education, good healthcare, fulfilling work and livelihood, recreation and leisure, and participation in public life.
Building an Inclusive Society
Since having Isha, I’ve learned more about other disabilities that are out there, many not detectable through prenatal screening and discovered only later in the child’s life.
There are also all the other ways disability can happen to both children (and also adults). The global Covid-19 crisis has showed us that disease does not discriminate. Unexpected life-changing accidents can also occur.
If only we lived in a society that fully supported families of children who are different in any way. We would not fear to have a child with a disability or who was different, as much as we do today.
Like all parents, I too hope that both my daughter and her neurotypical twin brother will grow up to become productive members of society. My dream is no longer an unrealistic one for Isha as there are now many more stories of young adults with Down’s syndrome like Megan McCormick who has completed college and Ali Hale who is earning an income and living an independent life.
However, here in Malaysia, there is still a lot that needs to be done to build an inclusive society with an inclusive workforce, where everyone can contribute to the best of their abilities. It really starts first with providing Inclusive Education opportunities for children like Isha.
Inclusive Education – What It is, What Is Isn’t
Inclusive education is when all students, regardless of any challenges they may have, are placed in age-appropriate general education classes, either in public schools in their own neighbourhood or private schools of their choice. It recognises that all students have the right to receive high-quality instruction, interventions, and support that enable them to meet success pursuing the core curriculum.
Fully inclusive schools, public or private, are still rare in our country. When Isha was ready to progress to primary school, my husband and I visited 14 schools and had some pretty heartbreaking experiences before we found an inclusive school for both our children.
Many well-meaning people we meet usually ask us if Isha is going to a special school, as in many people’s minds, a child with special needs is best served by a special education environment that only caters to such children (this is the “segregation” model). I would like to tell you that that is not always the case. A special child who can cope is always better served by being in a fully inclusive school that does not separate “general education” and “special education” programmes. Such schools are structured so that all students learn together in the same classroom.
Inclusive Education differs from the “integration” model of education that is currently delivered in public schools with special education streams, which tend to need learners who have learning and other disabilities to change, become “ready for” or deserving of accommodation by the mainstream. By contrast, Inclusive Education is about the child’s right to participate and the school’s duty to accept the child.
Why Inclusive Education Honours ALL Children, Not Only Those with Special Needs
Of course, Inclusive Education greatly benefits children with special needs. We have experienced it for ourselves as Isha has been very fortunate to have been able to transition from a special school into an inclusive playschool and later into an inclusive mainstream private school. By watching how regular children move, play, talk and interact with each other, she has been able to learn how to integrate into mainstream society, something that just books and regular lessons cannot teach her. Many people have commented how much she is like a regular child – her actions, her movements, her speech. That is the power of inclusion.
However, I would like to position this premise to parents of regular neurotypical children: Inclusive Education will also greatly benefit your children. Your children will not only have an opportunity to learn about diversity – racial, cultural, physical and also neuro diversity – by being and interacting with children who are different from them, but they will also benefit from a system that actually honours all children, all their different abilities and superpowers.
It Is More Than Just Academics
Every parent wants a school that will on a basic level deliver the school curriculum successfully, but we also want more than that. As parents, we all believe that our children are “unique little snowflakes”.
Are you a parent who wants a school with teachers who will take time to learn about your child’s strengths and weaknesses? Do you want a school that will take time to discover how your child learns best? After all, different children learn through various ways: visually, aurally, verbally, kinesthetically or physically, logically, socially or in a solitary manner.
A school that is inclusive and practices Inclusive Education will be able to provide this, not just for children with special needs but for all children. Such a school will have a culture, environment and teachers who are sensitive, who will take time and care to discover the individual needs of each child, and to help them reach their true potential.
In my daughter’s old playschool, the teachers were so sensitive and caring that they helped to uncover children who were seemingly regular but actually had some special learning needs. In my twins’ current school, even my neurotypical regular son is thriving as the school honours his special quirks and personality traits.
See Possibilities Where Others See Limitations
Even if I did not have a special needs child, I would still want my children to attend a school like this. And I hope that in time, the Malaysian Government will be able to provide true inclusive education for all children in Malaysia, not just the few of us who can afford it privately. Then maybe we would have less cases of teenage depression and suicide that we see more and more of in the press. I believe that some of these cases could be related to the pressure children who learn differently feel when stuck in a rigid mainstream system. I hope that there will be, in time, not just acceptance for neurodiversity but also a deep appreciation for it.
With Inclusive Education, we will hopefully be creating a world with more children who are accepting of differences, who have bigger hearts, who are open-minded, see possibilities where others see limitations and most of all, able to realise their full potential.
These children, my own son included, will hopefully grow up to become caring parents of children with or without special needs, and community-spirited members of society who will create and support solutions that benefit all people with different needs and different abilities. After all, even if we do not have a disability, we will each eventually grow old and weak someday, or face testing times (like now) where we need help from others.
Happy World Down Syndrome Day!
Resources:
- How to teach your child to include classmates with disabilities.
- If you have a young child, you might like this picture book.
- If your child has a classmate with a disability, you may like to look at this list together.
Show your support:
- To help celebrate WDSD, we invite you to wear mismatched socks and share postings on social media today.
- Socks are used as a fun symbol because chromosomes are shaped like socks and people with Down’s syndrome are born with an extra one and do not have a typical pair for chromosome 21.
- Don’t forget to tag us!
