MY son Nikhil is a 13-year-old with a physical disability. He has cerebral palsy and uses a wheelchair. He is one of a set of triplets, with two sisters. In trying to give him a life that is as regular as the one his sisters experience, we have been met with many challenges and as a family, we work hard to fill the gaps that society and the system have inflicted on him. These have ranged from schools rejecting him because they are “not equipped for him” or “do not know what to do in case of a fire”, to a complete lack of wheelchair accessibility and accommodation wherever we go.
In this disability journey, we’ve had the honour and privilege to support a few advocacy groups. We know our efforts may not be reflected in our own child’s lifetime, but we at least create awareness and give hope to parents at the beginning of their disabled child’s journey.
Nikhil has taken part actively in events organised by GAPS (Alliance of Children with Cerebral Palsy or, in Malay, Gabungan Anak-Anak Palsi Serebrum), the Inclusive Outdoor Classroom, and Unicef (United Nations Children’s Fund). Together with him, we have told our story many times, and Nikhil has done videos and interviews to help these organisations help us by creating awareness.
We are a family of introverts, really. But inhibitions aside and privacy be damned, we step out there to give hope. Because if more people had done this 30 years ago, our child’s life might be different today.
Yet I am writing in today because yet another challenge has been thrown at us, one that shouldn’t even exist: my disabled child’s right to feel safe and protected in a pandemic. As the world embraces the endemic stage, armed with and protected by vaccines, my son has been shoved to the back of the queue.
Since Nikhil does not go to a traditional school, he has got lost in a system so disorganised it’s embarrassing.
The national vaccination programme has been running for eight months now. We followed all media announcements and instructions as they were released by the relevant ministries. None indicated that a 13-year-old, who is privately tutored under an NGO programme, with a physical disability, cannot and will not be given priority.
This is despite how much harder it is for him to access the services that he requires safely while not being vaccinated. Despite the increased risk of a poor outcome if he does contract Covid-19. Despite the claims that as a caring society, we always give priority to the disabled.
And we only found out about this harsh reality when attempting to walk in to the centres listed as walk-in centres for unschooled/ homeschooled teens.
Contrary to announcements by the Health and Education ministries, my son did not qualify for a vaccine via walk-in and no attempt was made to give him an appointment via MySejahtera despite us declaring his disability in the app. Apparently we are to do more legwork on our own and secure an appointment at a government hospital, which would also be near impossible as for years now we have been following up in private care instead.
To make matters worse after he came home feeling angry and disappointed, we got vaccination notifications for his sisters to take place within days. Just because they go to a mainstream school. Just because they can stand up and walk and don’t have a disability.
But all three of them are healthy, all three of them are cognitively on par, all three of them are fully aware of the dangers of the disease.
So despite us parents being fully vaccinated, and his sisters too in five weeks, our family will still not be safe. How can we go back to the office or school knowing full well we could bring back the disease to the one member of our family who would be the most difficult to care for if he falls ill, and most likely to have the least positive outcome in fighting it?
So to the ministers in charge, please get your act together.
Make it standard that any disabled person eligible for vaccination should be able to get one at any designated walk-in centre. Let’s really care for the most vulnerable members of the Malaysian Family.