Documenting the ongoing journey of my almost 12-year-old daughter, Isha who has Down’s Syndrome with makchic has been a cathartic exercise. It lets me pause and reflect on the past year’s wins and losses within a larger context. The journey has been joyful and rewarding, but has also been rather tiring. However, I do hope our story can give other families like mine a little hope, useful insights, and some inspiration.
The author’s daughter, Isha, through the years
I shared Isha’s story and diagnosis publicly for the first time here in 2019. Since then, we have talked about the importance of inclusive education, and also why inclusion is needed more than ever today. We found World Down’s Syndrome Day (“WDSD”) 2023’s theme of “With Us, Not for Us” especially meaningful as we have never believed that people with disability should be treated as objects of charity, deserving of pity and relying solely on others for help. We cannot control the behaviour of others, so we have always focused on helping our child become stronger, more resilient, and easier to support.
For World Down’s Syndrome Day 2025, the theme is “Improve Our Support Systems,” emphasising the rights of individuals with Down’s syndrome to receive support that meets their needs and gives them choice, control, and dignity. It also highlights the importance of supporting families who are supporting family members with Down’s syndrome.
Why greater support is needed
I have been writing about Down’s syndrome for the last six years. Sadly, many things have not changed over this period. Like many countries, Malaysia still has inadequate support systems for people with disabilities and their families. Our country still does not fully respect their human rights.
Typically, as parents to a child with Down’s syndrome, our focus is helping our child cope with their daily routine and to lead as “regular” a life as possible. Most of my days during Isha’s early years were spent supporting her with therapy, surgeries (she has been through seven), doctor’s appointments, and the acquisition of living skills. Now that she’s a tween who is physically stronger and can communicate clearly, the need for physical and speech therapy has faded away.
Today, she needs more social-emotional support. She needs workshops that can show her how to read social cues, start and participate in conversations, regulate her emotions, express her thoughts effectively, and cope with and stand up to excluding or mean behaviour. As a Middle School student, she needs more help with adapting the school syllabus and tasks so that she can access these better. She also needs help with navigating technology platforms and tools that are increasingly used in schoolwork and exams.
Parents like me do not usually have a lot of bandwidth to look into the bigger picture of the larger legal support framework that we so sorely need in Malaysia. The irony is that we usually have to rely on people who do not have children like ours to advocate for us. Luckily for us, some people care as much for our cause as we do. Yet, as supportive as they are, they do not always fully understand what it is like to go through life as an individual with Down’s syndrome or a caregiver to such an individual.
We can only hope that our new generation of children with Down’s syndrome will grow up well and become self-advocates who will gain seats at tables where policy decisions affecting them are made, much like what this 2025 WDSD video is rooting for.
Where Malaysia currently stands
I usually shy away from policy issues but my quick research on disability rights in Malaysia yielded disappointing (but not surprising) results. A recent article written by Dato’ Dr. Amar-Singh HSS, San Yuenwah, Anit Kaur Randhawa, and Ng Lai-Thin (from The OKU Rights Matter Project) on 3rd December 2024 compared the ruling party’s election manifesto and action plans for disability inclusiveness with its actual achievements after two years of governance.
Whilst Pakatan Harapan’s manifesto has the most comprehensive set of plans and promises for the disability (OKU) community, hardly any of the plans or promises made have become reality after two years in office.
Source: The OKU Rights Matter Project
The authors and the Malaysian Bar Council have called for the amendment of Articles 8(2) and 12(1) of the Federal Constitution to expressly prohibit discrimination on the grounds of disability. Currently, Article 8(2) prohibits discrimination based on religion, race, descent, place of birth, or gender – but disability is missing. Amendments to Article 12(1) are needed to prohibit explicit discrimination in education toward persons with disabilities. They also call for the amendment of the “toothless” Persons with Disabilities Act (2008) to give it the scope and powers to enforce the rights of persons with disabilities so that they can legally challenge any discriminatory actions taken towards them.
It looks like our Down’s syndrome community will have to continue caring for itself for the time being. Despite this dismal outlook on the policy front, as a family, we still managed to find many meaningful moments over the past year to be grateful for, but acknowledge that good support systems backed by a protective legal framework could make things a lot better and less of a constant uphill battle.
Approaching the future
Since the last WDSD, Isha has graduated from Primary School. We were invited to give a breakthrough testimonial about our Primary School experience during Honors Day and were touched by the positive reception from many parents. Isha is now a mainstream Middle School student. As a newly minted tween, she does face excluding and mean behaviour from certain children in school (often the same ones again and again). Her frustration and hurt as a reaction to this also sometimes makes it hard to console or communicate with her when it happens.
She has a right to receive and has been allowed support in the classroom, for take-home tasks and exams, but often encounters petty complaints about why she gets “special help”. I cannot understand why these children see someone like her as a threat, as her main goal is not to outdo anyone or win awards but to just stay in school and keep learning. I wish that their parents would guide them and help them understand that you do not need to push those who are weaker down to win. Why not focus on self-improvement over unhealthy competition and comparisons? Some days, these incidences dishearten me as I worry that this is the kind of harsh Malaysian society both my children will live in in the future if no positive measures are taken to promote inclusiveness.
Professor, educator and author Jeffery Duncan-Andrade, in conversation with the Harvard Graduate School of Education, has said that, “Equity is More Important than Equality.” There is a lack of fairness in an equal system as you are not addressing each student’s personal needs and their unique circumstances, disabled or not.
Source: Schools That Lead
While often used interchangeably, “Equality” means treating everyone the same, while “Equity” means treating people fairly by providing resources and opportunities that address their specific needs, recognising that everyone doesn’t start from the same place. Equity is a fairer system that gives every student the level of care and attention they require via various educational tools and strategies.
For exams, support is not readily offered unless we seek it out and push for it to happen. It is doubly hard for my daughter to navigate online exam platforms. For a child who cannot type fast, multi-task, and is not technology-savvy, it becomes yet another barrier to overcome. I don’t blame the school management, as they are not accustomed to giving exam support automatically. After all, there are not many children like Isha who even make it to Middle School. So, this scenario is also new to them, and sometimes, with resource and time constraints (and poor Government support), matters relating to inclusion are deprioritised.
Celebrating the little wins
Despite several setbacks, we still had some significant breakthroughs. Isha managed to go on her first school overseas expedition to Vietnam for six days, accompanied only by her school teachers and classmates. She was fortunate to have two very kind and loving teacher chaperones who went beyond the call of duty. Isha was also lucky to have a caring classmate (with a caring mum) who stepped out of her comfort zone to be her roommate. We are deeply grateful for these angels in our midst as they gave Isha a positive first experience traveling overseas without her parents. Isha also participated in the school talent show with her brother against other regular children to emerge second in the Middle School category.
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Source: Isha’s Teachers (Expedition to Vietnam)
Our dream for Isha is for her to lead a life with no “ifs”, “buts”, and other qualifications – for her to dream her dreams and to reach her innate potential. This perhaps can only be achieved when there are significant policy changes that bring about better official support systems for persons with disabilities that can lead to more seismic shifts in attitudes toward people with disabilities and their families. If you know a family with a child similar to Isha, do take the time to reach out and offer them your friendship and support.
Happy World Down’s Syndrome Day 2025!
By Li-Hsian Choo
Li-Hsian Choo is an experienced writer and children’s art educator who regularly co-facilitates art discovery tours and coordinates art programmes for children at a well-known public art gallery in Kuala Lumpur. You can follow her work through her Instagram account @arttourmums.
Also an inclusive education advocate, she currently lives in Kuala Lumpur with her husband, and twins, a daughter and a son.
