21st March was World Down’s Syndrome Day (WDSD). It has been observed 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.
WDSD has special significance for my family, because I have an 8-year old daughter named Isha who has Down’s Syndrome. In 2020, when Isha was still finding her footing in a mainstream primary school, I wrote about the importance of inclusive education and why it should matter to all families.
“Inclusion Means”
This year’s WDSD’s theme, “Inclusion Means” comes at a timely point in our journey with Isha, as we reflect on what inclusion has truly meant for our daughter.
Inclusion is needed more than ever today, not just by individuals with special needs, but by everyone. As even if you are not born with a disability, disabilities can sometimes happen as a result of accidents or illness. Also, we will all eventually grow old and weak someday, or face testing times (like now) where we may need help from others.
During these last two difficult years living with the pandemic (and the floods), we have seen how important it is to live in a caring and inclusive society. We have all encountered special people in our lives who have made us feel welcome on our first day at a new school or workplace, who will make conversation with you at a party full of strangers, who actively encourage the participation of every member in a group discussion, or who fight for underdogs – and we treasure them. As a parent to small children, I have found myself thinking about how these individuals have been raised, and what experiences they have had growing up that have shaped their caring and inclusive mindsets.
The recent outbreak of war has also reminded us of how harmful divisive, separatist principles and policies can be, leading different groups to feel isolated and easily instigated into selfish actions without humane considerations. The importance of cultivating a deep appreciation for diversity – whether physical, racial, cultural, gender, neuro or any other form of diversity – cannot be understated.
What Inclusion Means to Us – Some Personal Experiences
As parents to twins – one who has Down’s syndrome and the other who is neurotypical or regular – who are also products of a mixed marriage, inclusion holds extra special meaning for my husband and me. It puts us in a unique position to experience how inclusion benefits all children.
I believe it begins with providing inclusive education opportunities for children like Isha. We visited 14 schools before we found a suitable inclusive primary school for Isha and her twin, Akash. Four years into our inclusive education journey, we can truly attest to its benefits for both our children.
Defining Inclusive Education
Inclusive education differs from the “integration” model of education that is currently delivered in Malaysian public schools that only offers special education streams. These streams tend to need learners with 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.
Placing your child in a school that promotes diversity and inclusion, or pushing for more inclusive practices in their classroom provides your child with daily opportunities to accept diversity as a daily way of life – as the default, not the exception. It is also a valuable setting for your child to learn how to live and work with diverse people.
Staff in schools that intentionally and consistently incorporate a culture of inclusion into their curriculum are not so quick to label certain personality traits or behaviours displayed by children as stereotypical or unfavourable when incidents arise. Instead, teachers and staff in inclusive schools work with children (and their parents) to discuss, uncover the root issues and find real solutions.
Life Lessons
I remember a particular incident that happened when Isha was only five, and still in Reception class. We were informed that she was hitting a classmate in school, despite repeated reprimands and reminders from her teachers and later, ourselves. We were especially puzzled as this was a friend she was very fond of and would constantly talk about at home.
Deeper observations, investigations and discussions later showed us that she was merely attempting to learn about how school relationships work – in particular, how to interact with friends. She had seen her brother playfully roughhousing with his close friends, and deemed rough play to be the way you interacted with friends whom you liked, but had not understood the subtle nuances. At circle time, this was discussed with the children. They were taught what you should do if someone hits you, how to stand up for and defend yourself, as well as how to get help if you cannot resolve the problem on your own.
Instead of teaching them to assign blame and solicit superficial apologies, the teacher encouraged the other kids to positively support herself and also Isha by helping to watch over (but not “police”) our daughter and remind her that hitting someone was wrong. The whole class came out of that incident with critical life lessons on problem-solving, assertiveness and how to be a supportive friend. It was a great reminder to me that despite our modern day fixations on academic achievements, a larger kind of more important learning happens in school.
The Little Things that Count
Inclusion is not necessarily present in a place with experts and formal “inclusive” processes either. Some of the schools we visited explicitly promoted themselves as “inclusive schools”, yet were quick to point out our child’s limitations, viewing her as stagnant being who would not learn, grow or improve over time.
So, inclusion is not about grand claims or gestures; rather, a willingness to genuinely listen, to understand and to adapt in small but meaningful ways. Instead of dismissively saying “we are not equipped to support this student”, an inclusive school would ask “what can we do to become better equipped to support this student?”
For us, inclusion is the willingness of my daughter’s homeroom teacher to adjust her work routine to give us weekly updates on Isha’s progress and the content that will be covered in the coming week, so we can better prepare her and increase her levels of cooperation and compliance in class. It is being open to alternative learning strategies and adaptations that can also benefit regular children who may learn differently.
Inclusion is our special little one being encouraged during a lockdown to read the text on the slides in her Zoom class by a teacher who did not rush her or criticise her reading ability, as well as young classmates who respectfully waited for her to slowly finish her sentences. Regular encouragement of this sort actually helped Isha to learn how to read during the pandemic.
With every small achievement unlocked by these simple meaningful acts, as well as appreciation for who she is and her efforts, Isha’s confidence grows and her courage to try new and unfamiliar things increases. It is a process of change that is extremely rewarding to see as parent.
Contrary to what some people believe, differently-abled children and individuals are not here to “teach” us or our children how to be caring, kind or compassionate. Like any and every other child who is unique in their own way, my daughter is simply a representation of the diversity that exists in the real world. When other children (and their parents) acknowledge her significance as well as her efforts and contributions, and simply support her as they would any other child, something magical happens. Differences don’t matter so much.
At her inclusive school, Isha is very fortunate to have found genuine friendships, not grounded on charity, but mutual respect and affection. To her neurotypical brother, she is just his (sometimes annoying) sister whom he lives, plays, learns and spars with. Through his own interactions with her, he has become more sensitive to others who might need a little support in certain areas. He places equal importance on both academic achievements and values. He also knows that, as Jess Jackson says, “when everyone is included, everyone wins.”
What Can You Do?
We want everyone to talk about what inclusion means. Only then can we understand the concept better. So, how can you kick off the conversation? What can you do to start building a more inclusive family, community and society?
Well, for a start, you and your family can think of what inclusion means to you. Think about your daily life – at work, school, play, in public life – when you take part in things alongside other people. Do you feel included? Do you have the same opportunities as others? Or are there things stopping you? Conversely, do you make others feel included? Do you participate in inclusive activities, or promote inclusive practices? Or are there separate activities for people with disabilities or who are different in any way?
Think of a message you can share, starting with “Inclusion means…” Use your “Inclusion means….” message to speak up for yourself and others, such as in this wonderful video that one of my best friends made to support us.
We’d love to hear your thoughts on what “Inclusion Means” to you, #makchicmumtribe. If you’d like to share this with us, please email hello@makchicsuri.com or use the following hashtags on your social media to join the conversation: #WorldDownSyndromeDay and #InclusionMeans.
