Fighting for Disability Rights, One Step at a Time
Diagnosed with cerebral palsy, Mr Alan Pek is also a parent to a child with special needs. Despite the challenges, Alan Pek has gone through this journey with tremendous tenacity and unconditional love.
Unlike his peers growing up, Alan had limited movement and verbal ability. He underwent countless speech therapy sessions, had to be piggybacked to primary school and ate home-cooked meals packed by his foster mother in the classroom instead of joining his peers at the canteen.
He persevered on and went on to study and work in the United Kingdom in the late eighties. In the mid-nineties, he went to the United States for training and worked on projects involving expert systems, marking the start of the artificial intelligence era.
Alan was in his twenties when he met his now-wife while volunteering in the youth group in the Residents’ Committee in their neighbourhood. It was his tenacity and sincerity that won her over, jokes Alan.
When his wife was pregnant with their second daughter, Ling Fei, their doctors discovered that the foetus’ brain fluid was over the normal threshold and advised to abort her. Rooted by their religious beliefs, Alan and his wife chose to proceed with the pregnancy. “We decided to keep her and give her a chance to come into this world and to let the world meet her. The most important thing is that we give her a lot of love,” he says.
Raising a child with special needs
In 2006, Pek Ling Fei was born.
The parents soon noticed that she was falling behind on her milestones, and she was diagnosed with Global Developmental Delay (GDD). She also had seizures and had to see a neurologist for a few years until her condition stabilised.
As a parent, raising any child has always been challenging, especially when the child has special needs, says Alan.
While struggling to communicate effectively with Ling Fei, the family also found it increasingly difficult to manage behaviours of concerns as Ling Fei got older and stronger. Loud noises from vacuum cleaners and grass-cutting, or crowded places like shopping malls can overstimulate Ling Fei, triggering meltdowns where she cries and rolls on the floor. Facing the COVID-19 pandemic brought unprecedented challenges for the family. In one instance, Alan and his family had to hold Ling Fei down while helping her take an Antigen Rapid Test (ART). They also sought help from a healthcare agency to dispatch a doctor and nurse to give Ling Fei her COVID-19 vaccination at home, which Alan described as “traumatising” for both Ling Fei and the family.
Alan acknowledges that while most physical structures in public spaces are largely accessible for a family with different needs, the difficulty lies more with staff who are not trained to support persons with special needs. For instance, during a visit to a public attraction a few years ago, the long wait for the tram caused Ling Fei to have a meltdown. The staff did not know how to respond, leaving everyone frustrated. On another occasion, Ling Fei had a meltdown crossing the security check and scanner at an airport, and the family had to carry her through without help from the ground or plane staff.
As parents, they must be very firm with Ling Fei and “manifest unconditional empathy”, says Alan.
It’s in the quiet moments that her beautiful spirit truly shines through, Alan shares. “When you meet her, she is very adorable and angelic. It’s very therapeutic to see her talking and singing to herself.”
Through the family’s perseverance and faith in her, Ling Fei has learned to help out with household chores like washing the dishes and cleaning windows.
Champion for Inclusion
Driven by his personal experiences growing up and raising Ling Fei, Alan, an IT professional with Deutsche Bank, is part of a voluntary advocacy group for Persons with Disabilities (PWDs) called dbEnable, which works closely with SG Enable. Deutsche Bank, alongside more than 20 likeminded organisations such as Singtel, Microsoft and Accenture, founded the Singapore Business Network on Disability (SBNOD) to advocate PWDs. Alan also sits on the executive committee of the Handicaps Welfare Association (HWA). Through dbEnable, SBNOD and HWA, Alan advocates for PWDs in the areas of disability, inclusive living, employability and workplace culture.
Recalling how he first started at Deutsche Bank 25 years ago, he remembers his colleagues’ doubt towards his ability to do the job despite his ability and qualifications. Wherever he went, he received “funny stares” from the public and people struggled to understand him.
Thankfully, people at work today are used to the way he talks, he says. The office is a “second home” and are flexible in giving him extra time off to go for medical appointments and recover when he falls ill.
On the home front, most people might not be able to understand Ling Fei’s extreme behaviour, though Alan says they were lucky to have patient and understanding neighbours.
“Recently, one of them came up and asked what happened, as Ling Fei had been banging on the doors in wee hours, far too often. We needed to explain that she had been extremely restless at home due to school holiday,” he said.
While Singapore has made strides in the last 20 years, social stigma towards PWDs still prevails. “The society must be willing to give this often-misunderstood group a chance and to befriend and understand them,” Alan encourages.
“To me, inclusion means not to be left out. The public needs to be aware that people with special needs are just another fellow human beings who need to be respected, accepted and to be understood, and to look at them as they have as much to offer. Those with special needs will need to be taught and they have to learn to best of their abilities on how to live like anyone else. Inclusion is being able to adapt and accept everyone, and live alongside each other, mindfully, meaningfully, peacefully, positively and patiently. We complement each other with compassion, (and gain) wisdom in support.”
As MINDS celebrates its 60th anniversary, we pay tribute to the individuals who have made a mark in building a kinder and more inclusive Singapore.
We encourage a deeper understanding and empathy towards the diverse spectrum of needs persons with special needs may have, and welcome educational institutions, corporate and community organisations to create platforms for meaningful engagement between the public and persons with special needs.