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 characterized 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 humor 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 deserved 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)

1. Dato' Dr Amar-Singh HSS, Consultant Paediatrician, Advisor, National Early Childhood Intervention Council (NECIC), [email protected]

2. San Yuenwah, Harapan OKU, [email protected]

3. Naziaty Mohd Yaacob, Universiti Malaya, [email protected]

4. Mary Chen, Chairman, Challenges Foundation, [email protected]

5. Feilina Feisol, Chairman of NASOM, [email protected]

6. Ruzita Mohd Amin, International Islamic University Malaysia & National Education Advisory Council, [email protected]

7. Ikmal Hisham Md Tah, Universiti Teknologi MARA, [email protected]

8. Dr. Shyielathy Arumugam, Advisor of National Family Support Group For Children & People With Special Needs. ([email protected]).

9. National Council for the Blind, Malaysia, [email protected]

10. Esther Lim Beng Kwan, President, Malaysia Independent Living Association for Disabled, [email protected]

11. Maizan Binti Mohd Salleh, Founder and President, Kuala Lumpur and Selangor Albinism Association, [email protected]

12. Christine Lee Soon Kup, Harapan OKU, [email protected]

13. Law King Kiew, Paralympian, Vice President, Malaysian Spinal Cord Injuries Association (MASIA) [email protected]

14. Shakira Jami Fisal, President, Spinal Muscular Atrophy Malaysia, [email protected]

15. Dr. Tiun Ling Ta, Harapan OKU, [email protected]

16. Dr Toh Teck Hock, Consultant Paediatrician, [email protected]

17. Ai-Na Khor, Asia Community Service Penang, [email protected]

18. Senator Ras Adiba Radzi, Parlimen Malaysia, [email protected]

19. Hasnah Toran, Pusat Genius Kurnia, [email protected]

20. Muhamad Nadhir Abdul Nasir, University of Malaya, [email protected]

21. Chng Cheng Hui, Pertubuhan Keluarga Orang- Orang Bermasalah Pembelajaran (Perkobp), [email protected]

22. Mohammad Faizal Che Yusof, Pejabat Timbalan Menteri, KPWKM, [email protected]

23. Raaginee Shalesh, Founder & President of Pusat Jagaan & Latihan Insan Istimewa IMC, [email protected]

24. Sia Siew Chin, Secretary, Society of Chinese Disabled Person Malaysia, [email protected]

25. The SMAshing team, Persatuan WeCareJourney, [email protected]

26. Mohamad Sazali, University of Malaya, [email protected]

27. Seketariat Pelaksana Inklusiviti Malaysia (SPIM), [email protected]

28. Alvin Teoh, Advisor of National Family Support Group for Children & People with Special Needs, [email protected]

29. Francis Johen Ak Adam, Advisor, Pertubuhan Orang Cacat Sarawak, [email protected]

30. Dr Ling How Kee Harapan OKU, [email protected]

31. Meera Samanther, Vice President, Association of Women Lawyers, [email protected]

32. Saras Manickam, Harapan OKU, [email protected]

33. Dato' Dr GP Doraisamy Govindasamy, Legal Advisor, Persatuan Orang Orang Cacat Anggota (Fisikal) Malaysia (POCAM), [email protected]

34. Siti Safura Jaapar, Paralympian, Medical & Research Exco of SMA Malaysia, Co-Director Adnuri SMA Research Center Sdn. Bhd, [email protected]

35. Murugeswaran Veerasamy, President, Damai Disabled Person Association Malaysia, [email protected]

36. Ong Puay Hoon, President, Dyslexia Assoc of Sarawak, [email protected]

37. Yoon Loong, Harapan OKU, [email protected]

38. Wan Zuraidah Abu, President, Malaysian Association of Sign Language Interpreters (MyASLI), [email protected]

39. Tan Kuan Aw, Harapan OKU, [email protected]

40. Silatul Rahim Dahman, Yayasan Orang Buta Malaysia, [email protected]

41. Ng Lai Thin, Project Officer, National Early Childhood Intervention Council (NECIC), [email protected]

42. Serenade Norman, Clinical Specialist Physiotherapist, Tasputra Perkim, [email protected]

43. Sangeet Kaur Deo, Harapan OKU, [email protected]

44. Prudence Lingham, Persatuan CHILD Sabah, [email protected]

45. Norazlin Bin Juarih, Presiden, Persatuan Catur OKU Negeri Kelantan, [email protected]

46. Mej Jen (R) Dato Yusri Anwar, National Education Advisory Council & Harapan OKU, [email protected]

47. Mohd Firdaus Mehat, Pertubuhan Kebajikan Pesakit ichthyosis malaysia (PEKIM), [email protected]