We, members of Harapan OKU, an informal network of civil society organizations and individuals on disability inclusion and the rights of persons with disabilities, would like to express our deepest appreciation for the life and work of James Low. He was an exceptional lawyer, a gifted constitutional law scholar, a relentless disability rights advocate, a child of God, our brother and friend.
Amidst our grief we would like to share his life’s work and the impact he has made to Malaysian society and to our lives. Many Malaysians may not be aware of this remarkable young man and it is only fair that we pay a tribute to his life. James shows us that it is not the length of one’s life that matters but the depth of that life.
It is difficult to describe the life of anyone, especially someone like James with his significant contributions to persons with disabilities. James did not do all that he did as a disability advocate merely because he had a disability but in spite of it. He did not allow his disability to be an obstacle but rather used it for change. It takes courage to do this, courage that those not in his shoes may not understand.
James Low graduated as a lawyer from the University of Malaya. He was a Ph.D candidate on Constitutional Law at the National University of Singapore, member of the Malaysian Bar Council Constitutional Law Committee and Co-Chairperson, Law Reform Group, Harapan OKU. He was the recipient of numerous awards and scholarships including the National University of Singapore (NUS) President’s Graduate Fellowship and the NUS Graduate Scholarship for ASEAN Nationals.
He achieved all this while living with spinal muscular atrophy (SMA), a genetic disorder characterised by weakness and wasting in muscles used for movement. He made a special contribution to SMA families and was an advocate to raise awareness for SMA.
In James, we had a powerful torch bearer for law reform that would uphold and protect the rights of persons with disabilities on an equal basis with all others. James showed us, lawyers and non-lawyers, how to approach legal documentation from a disability rights perspective.
James had a quiet, gentle and spirited nature.
James had humour amidst the pain.
James had hope amidst darkness and setbacks.
James fought when others would let go.
In an interview for a study on the impact of living with Spinal Muscular Atrophy in Malaysia (by Dr Ch’ng Gaik-Siew et al), James said: “I am not worried about death ….. So as long as I am here I should be concerned about whether I live my life the way God wants me to. ….. So the question then becomes whether I am living out the purpose.“
James had his heart and soul and spirit set on the task, that all of us deserve equal rights, no matter who we were, where we came from and what our abilities. As God’s children were all deserving of equal rights and justice. James you have done so much wonderful work, given us all so much to carry on with. We learned a lot from you – your intellectual clarity, sharp focus, high motivation, and your wisdom and humanity. You inspire us. We thank you for your many gifts to us. We love and respect you. James, our friend and brother, we do not say goodbye. We send you love from all of us and will meet again.
James’s one final wish would be for the Persons with Disabilities (PwD) Act 2008 to be reformed. We hope this can be done as a gift in memory of James as well as for so many persons with disabilities in Malaysia who are seeking their rights and need a functioning redressal mechanism when their rights are violated.
As we grieve in losing him, we also rejoice in his life and remember and take heart that his life was not in vain but has blessed many, including us. He continues to live on in the work he has initiated, in our hearts and lives and in God.
This letter is signed by 46 members of the OKU Harapan Group (an informal network of CSOs and individuals on disability inclusion and rights in Malaysia)
- Dato’ Dr Amar-Singh HSS, Consultant Paediatrician, Advisor, National Early Childhood Intervention Council (NECIC),
- San Yuenwah, Harapan OKU,
- Naziaty Mohd Yaacob, Universiti Malaya,
- Mary Chen, Chairman, Challenges Foundation,
- Feilina Feisol, Chairman of NASOM,
- Ruzita Mohd Amin, International Islamic University Malaysia & National Education Advisory Council,
- Ikmal Hisham Md Tah, Universiti Teknologi MARA,
- Dr. Shyielathy Arumugam, Advisor of National Family Support Group For Children & People With Special Needs.
- National Council for the Blind, Malaysia,
- Esther Lim Beng Kwan, President, Malaysia Independent Living Association for Disabled,
- Maizan Binti Mohd Salleh, Founder and President, Kuala Lumpur and Selangor Albinism Association,
- Christine Lee Soon Kup, Harapan OKU,
- Law King Kiew, Paralympian, Vice President, Malaysian Spinal Cord Injuries Association (MASIA)
- Shakira Jami Fisal, President, Spinal Muscular Atrophy Malaysia,
- Dr. Tiun Ling Ta, Harapan OKU,
- Dr Toh Teck Hock, Consultant Paediatrician,
- Ai-Na Khor, Asia Community Service Penang,
- Senator Ras Adiba Radzi, Parlimen Malaysia,
- Hasnah Toran, Pusat Genius Kurnia,
- Muhamad Nadhir Abdul Nasir, University of Malaya,
- Chng Cheng Hui, Pertubuhan Keluarga Orang- Orang Bermasalah Pembelajaran (Perkobp),
- Mohammad Faizal Che Yusof, Pejabat Timbalan Menteri, KPWKM,
- Raaginee Shalesh, Founder & President of Pusat Jagaan & Latihan Insan Istimewa IMC,
- Sia Siew Chin, Secretary, Society of Chinese Disabled Person Malaysia,
- The SMAshing team, Persatuan WeCareJourney,
- Mohamad Sazali, University of Malaya,
- Seketariat Pelaksana Inklusiviti Malaysia (SPIM),
- Alvin Teoh, Advisor of National Family Support Group for Children & People with Special Needs,
- Francis Johen Ak Adam, Advisor, Pertubuhan Orang Cacat Sarawak,
- Dr Ling How Kee Harapan OKU,
- Meera Samanther, Vice President, Association of Women Lawyers,
- Saras Manickam, Harapan OKU,
- Dato’ Dr GP Doraisamy Govindasamy, Legal Advisor, Persatuan Orang Orang Cacat Anggota (Fisikal) Malaysia (POCAM),
- Siti Safura Jaapar, Paralympian, Medical & Research Exco of SMA Malaysia, Co-Director Adnuri SMA Research Center Sdn. Bhd,
- Murugeswaran Veerasamy, President, Damai Disabled Person Association Malaysia,
- Ong Puay Hoon, President, Dyslexia Assoc of Sarawak,
- Yoon Loong, Harapan OKU,
- Wan Zuraidah Abu, President, Malaysian Association of Sign Language Interpreters (MyASLI),
- Tan Kuan Aw, Harapan OKU,
- Silatul Rahim Dahman, Yayasan Orang Buta Malaysia,
- Ng Lai Thin, Project Officer, National Early Childhood Intervention Council (NECIC),
- Serenade Norman, Clinical Specialist Physiotherapist, Tasputra Perkim,
- Sangeet Kaur Deo, Harapan OKU,
- Prudence Lingham, Persatuan CHILD Sabah,
- Norazlin Bin Juarih, Presiden, Persatuan Catur OKU Negeri Kelantan,
- Mej Jen (R) Dato Yusri Anwar, National Education Advisory Council & Harapan OKU,
- Mohd Firdaus Mehat, Pertubuhan Kebajikan Pesakit Ichthyosis Malaysia (PEKIM)