Doctors said it was unlikely for James Low Hong Ping to live beyond the age of two when he was first diagnosed with spinal muscular atrophy (SMA).
However, Low not only survived beyond that age, he defied all odds to become an exemplary constitutional law scholar and disability rights activist.
Sadly, Low – whose genetic disorder is characterised by weakness and wasting in muscles used for movement – passed away Wednesday (May 27).
A former St John’s Institution student in Kuala Lumpur, Low pursued his Bachelor of Laws at Universiti Malaya and was called to the Malaysian Bar in Sept 2016.
He was then awarded the National University of Singapore (NUS) Graduate Scholarship for Asean nationals and completed his Master of Laws in International and Comparative Law in NUS in 2017. Low was in the midst of his PhD when he died.
He was also a member of the Malaysian Bar Council Constitutional Law Committee and a strong advocate in WeCareJourney, an NGO that champions care and support for families with SMA and disabilities.
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The Manchester United fan was also co-chairperson of the Law Reform Group in Harapan OKU, an informal network for sharing disability-related resources.
Assoc Prof Dr Naziaty Mohd Yaacob, who served as co-chairs with Low, described him as “intellectually sharp, highly disciplined and hardworking”, yet soft-spoken, warm and gentle.
“James was well-organised and totally dependable. He had the most wonderful sense of humour, with a smile that charmed us all. He would throw out a challenging issue during our Law Reform Group meetings and then sit back bemused, watching the rest of us react, ” recalled the Universiti Malaya lecturer (Department of Architecture), when contacted.
“We had so many issues to discuss and made many detours in the process. Yet James would manage to steer us firmly back on track. Bear in mind that James was the youngest at our meetings. But what a magnificent presence he had!”
Also a person living with disability, Assoc Prof Naziaty added that Low was “tough and unyielding on matters of principle, firm in time management and ensuring task delivery”.
“When James spoke, he was always concise and to the point. Not one word was wasted, ” she said.
Low was also instrumental in pushing forward law reforms.
“James inspired us all with his strength and bravery, as his impairment was severe compared to many of us. Despite the difficulties, he managed to lead the Law Reform Group’s objective of delivering the law reform drafts.
“This meant that he shone a bright light for the way forward in our struggle to encourage harmonisation (alignment) of the Persons with Disabilities (PwD) Act 2008 with the United Nations Convention on the Rights of Persons with Disabilities (signed by the Malaysian government.)
“James did solid, painstaking work in producing a comparative analysis of the PwD Act and the Convention. In the almost 10 years that has lapsed since Malaysia signed the Convention, no one had undertaken that essential work to help move Malaysia forward towards harmonisation of its domestic legislation with the Convention, until James put in the hard work.
“That landmark document is James' gift to the OKU community of Malaysia, his legacy for us to build on. We shall keep the spirit of James alive by recommitting ourselves to Malaysia's harmonisation of the PwD Act 2008 with the Convention, ” she vowed.
In terms of social advocacy, Low also brought hope to children with disabilities.
“Medical specialists pronounced that it was very unlikely for James to survive beyond the age of two. By exercising incredible discipline in maintaining optimal health, coupled with his strong dose of common sense, James lived a rich and fulfilled life, with a vibrant community of friends and a loving family. The way that James managed that is a major legacy for children with disabilities, their parents, as well as for those with SMA. James gave hope; he showed possibilities, ” she said.
WeCareJourney, in a Facebook post, said Low was an active volunteer and advocate in the group.
“He used his best abilities, which was his eloquent speech and articulate writing in advocating and creating awareness for SMA and disability rights.
“He has given many parents of children with SMA hope and what it can be like when they reach adulthood. He has shown everyone that he crossed paths with the true meaning of living to your best potential and to do your best despite your challenges.”
On the National University of Singapore, Faculty of Law Facebook page, Professor Damian Chalmers, vice dean of research, described Low as “an inspiration not simply for how he addressed life and showed what was possible, but also for the humanity he displayed and offered to others."