LETTER | Using respectful and appropriate disability language

LETTER | This is an open letter to all media practitioners, especially editors, MPs and state assemblypersons, and ministers. We thank those of you who have demonstrated support for persons with disabilities.

With Malaysia’s aspiration to be a developed nation, it is time to consider the use of inappropriate language for referring to persons with disabilities and disability-related matters. How do we use terminology that shapes behaviour, to break barriers and exclusion? Not reinforce those.

Respectful and appropriate disability language in communication acknowledges the dignity and celebrates the diversity of persons with disabilities. It does not reinforce negative stereotyping and derogatory labels that connote pity and lesser value. Each time that respectful and appropriate language is used is a blow to discrimination on the basis of disability.

Respectful and appropriate disability language also recognises that disability is not the defining characteristic of a person, but rather one aspect of individual identity and experience.

We would like to share some general principles of respectful/appropriate disability language and hope that this will translate into better media reporting and comments/statements made by ministers, MPs and state assemblypersons.

First, it is important to respect the preferences and choices of persons with disabilities regarding how to be referred to. When in doubt, just ask the person with a disability.

Second, please avoid euphemisms or terms that are patronising, offensive or inaccurate. For example, do not use terms such as "special needs", "differently abled", "handicapped", or "mentally retarded."

These terms imply that disability is something to be ashamed of, to be hidden or avoided. It reinforces the medical model that views disability as “an anomaly” to be medically “fixed” and persons with disabilities as “damaged” and “incomplete.”

Instead, acknowledge the centrality of the person (see table below) and use clear and respectful terms, such as "disability", "accessibility", "accommodation", or "inclusion".

One common incorrect reference to the non-disabled population is “normal” or “healthy.” This reinforces the wrong view that persons with disabilities (the OKU community) are somehow “abnormal” or “unhealthy.” It is best to use “non-disabled” in place of “normal” or “healthy”. And use “neurotypical” instead of “of sound mind.”

Third, avoid terms that underscore a “victim” attitude towards disability, such as "suffering from", "afflicted with", "confined to", or "incapacitated by." These terms perpetuate outdated views that disability is a burden, a tragedy and a source of pity. Instead, use neutral or positive terms, such as "living with", "experiencing" or "has."

Some persons may prefer identity-first language, such as "autistic person" or "deaf person", rather than person-first language, eg, “person with autism.”

The table below offers suggested terms to use and words to avoid for some common disabilities; it is not exhaustive. It lists some suggested terms in accordance with international good practice – see the 2022 United Nations Disability-Inclusive Communications Guidelines.

Language is constantly evolving. The change happens as disabled persons change, as does the community's understanding of our relationships, rights, place in society and aspirations for the future.

The key is to remain respectful of each other, as we work towards ensuring that everyone’s place in society is enabled and we grow as an inclusive society. Using respectful and appropriate language empowers the individual and the community.

It is time that we as a nation change our use of demeaning terminology, to respect persons with disabilities. Let’s remember this: disability does not limit a person; it is the inaccessible environment that stops progress. And, our choice of language shapes that environment.

Signatories:

1. Dr Amar-Singh HSS, a person with dyslexia, child-disability activist, advisor for National Early Childhood Intervention Council (NECIC); member, The OKU Rights Matter Project

2. Yuenwah San, co-founder-member, The OKU Rights Matter Project; member, Harapan OKU Law Reform Group; disability rights activist-care partner; and honorary senior advisor (disability inclusion), Social Development Division, United Nations Economic and Social Commission for Asia and the Pacific (Escap)

3. Ng Lai-Thin, care partner, and Project Lead, National Early Childhood Intervention Council; and member, The OKU Rights Matter Project

4. Meera Samanther, disability-gender activist, parent advocate, and Committee Member, Association of Women Lawyers (AWL)

5. Anit Kaur Randhawa, member of the Harapan OKU Law Reform Group; vice president (legal), Medico-Legal Society Malaysia (MLSM); member, The OKU Rights Matter Project

6. Nori Abdullah Badawi, owner of We Rock the Spectrum Gym for All Kids, chairperson of Yayasan Budi Penyayang Malaysia and parent advocate for neurodiversity and inclusion

7. Senator (R) Ras Adiba Radzi, president Persatuan OKU Sentral; and president Persatuan Para Menembak Malaysia

8. Bathmavathi Krishnan, president of the Association of Women with Disabilities Malaysia

9. Noor Aziah Mohd Awal, Suhakam

10. Kaveinthran Palanthran, Independent Disabled Human Rights Activist

11. Dr Shyielathy Arumugam, Special Education Teacher, MOE & Parent Advocate

12. Beatrice Leong, autistic, filmmaker and founder of AIDA (Autism Inclusiveness Direct Action Group)

13. Dr Ikmal Hisham Md Tah, senior law lecturer UiTM/Disability Rights Law Researcher

14. Dr Lim Tien Hong, chairperson Communication Department, Advocacy & Human Rights, Society of the Blind in Malaysia

15. Edmund Lim, disability equity and inclusion activist for children, care partner, research officer, Persatuan WeCareJourney

16. Dr Alvin Ng Lai Oon, professor of psychology, at Sunway University

17. Mohamad Sazali Shaari, Persatuan Ibubapa dan Penjaga Anak Pekak Kuala Lumpur

18. Our Journey, migrants and refugee rights advocate

19. Centre for Independent Journalism

20. Joan Sim Jo Jo, vice chairperson of Sarawak Society for the Deaf

21. Desiree Kaur, Founder of Project Haans; vice president of Kiwanis Club of TTDI

22. Murugeswaran Veerasamy, president of Damai Disabled Person Association Malaysia

23. Ai-Na Khor, disability activist and service provider, Asia Community Service

24. Sha Roose, a person with spinal muscular atrophy, disability activist

25. END CSEC Network

26. Malaysian Association of Sign Language Interpreters (MyASLI)

27. Kemban Kolektif Consultancy - intersectionality of gender & disabilities

28. Faiz Shuhaimi, president of Majlis Belia OKU Malaysia

29. Annie Ong, president of the National Organisation of Malaysian Sign Language (NowBIM)

30. Sharifah Tahir, care partner, Teepa Snow Positive Approach to Care Certified Independent Consultant and Trainer, founder of UniquelyMeInitiatives

31. Make It Right Movement

32. Elijah Irwin, Officer, Malaysian Foundation for The Blind (MFB)

33. Family Frontiers

34. Prof Dr Toh Teck Hock, Disabilities & Child Health Activist; vice president of National Early Childhood Intervention Council (NECIC) Malaysia; Global Medical Advisory committee member, Special Olympics Inc; Consultant Paediatrician and Clinical Researcher

35. Association of Women Lawyers (AWL)

36. Mary Shanthi Dairiam, Founding Director, IWRAW Asia Pacific and Former UN CEDAW Committee Member, Human Rights and Equality Advocate

37. Leela Koran, a linguist with an interest in disability-related issues

38. Feilina Feisol, board member of the National Autism Society of Malaysia (NASOM) and Ronald McDonald House of Charity (RMHC)

39. Anthony Chong, Co-Founder-Secretary, Malaysian Sign Language and Deaf Studies Association (MyBIM)

40. Syed Azmi, PUAKPayong

41. Siti Aishah Hassan Hasri, SPOT Community Project

42. Tini Zainudin, child activist

43. Maalini Ramalo, Development of Human Resources for Rural Areas (DHRRA), Malaysia

44. Angie Heng, executive director of Kiwanis Down Syndrome Foundation

45. Dr Ling How Kee, Social work educator and disability rights supporter

46. Dr Ramanathan, CEO YAYASAN IPOH

47. Dunstan Lim, chairperson, Sarawak OKU Skills Development Association (SOSDA)

48. Dr Zahilah Filzah Zulkifli, co-founder of doktorbudak and chairperson of Malaysian Advocates for Child Health

49. Dr Wong Woan Yiing, consultant paediatrician, committee member, Network for the Needs of Children with Disability Perak

50. Childline Foundation

51. Toy Libraries Malaysia

52. Cathryn Anila, Vanguards4Change

53. Dr Julia Lee, Associate Professor (Education Sciences), Universiti Malaysia Sarawak

54. Anisa Ahmad, president Persatuan Pengasuhan dan Perkembangan Awal Kanak- kanak Berdaftar Malaysia (PPBM)

55. Ivy Josiah, Women’s Rights Advocate

56. ENGENDER Consultancy, a CSO advancing gender equality

57. Malaysian Association of Social Workers

58. NGOhub

59. Wong Hui Min, president of the National Early Childhood Intervention Council, Malaysia

60. Sin Tiew Cheo, chairperson of SPICES Early Intervention Centre

61. Izyan Nadiah Md Noh, Special and Inclusive Education Advocate

62. Women's Centre for Change (WCC)

63. Sherrene Teh, Registered Music Therapist, member of the Malaysian Music Therapy Association, ELITE@UM Fellow 2023

64. Tay Chia Yi, vice president of the Malaysian Association of Speech-language & Hearing (MASH)

65. Aishah Diyana, clinical psychologist and caregiver to a person with dementia

66. Prudence Lingham, speech therapist, parent, committee member, Persatuan CHILD Sabah

67. Sivasangaran Kumaran, Rare Disease Advocate

68. Alvin Teoh, National Family Support Group for Children and People with Special Needs

69. Lee Yu Ying, behaviour analyst and co-founder of Shining Star Learning Hub

70. Mary Chen, disability advocate, care partner

71. Srividhya Ganapathy, a person with ADHD, child rights activist, and co-chairperson of CRIB Foundation

72. Raaginee Shalesh, founder of Pusat Jagaan & Latihan Insan Istimewa IMC

73. Mabel Gong Siew Choo, care partner

74. Buku Jalanan Chow Kit

75. Cikgu Rahayu, children education activist

76. Goh Siu Lin, family and child rights lawyer

77. Sharmila Sekaran, Voice of the Children

78. Methodist Care Centre, Sarawak

79. Lam Saw Yin, president of Special Olympics Malaysia

80. Stella Chia Siew Chin, Pusat Jagaan Kanak kanak Ceria Murni

81. Kong Lan Lee, director of Persatuan Kanak-Kanak Istimewa Kajang Selangor

82. Saiful Abdul Hamid, a semi-caregiver for PWD and an avid lifelong learner

83. Tan Kuan Aw, an artist with multiple disabilities and disability rights activist

84. Maizan binti Mohd Salleh, founder and president of the Kuala Lumpur and Selangor Albinism Association

85. Christine Lee, a wheelchair user

86. Vicky Chan, Harapan OKU member

87. Hanizan Hussin, group founder of the National Down Syndrome Association, Malaysia; advocate/activist of individual persons with Down Syndrome; chairperson of Persatuan Warga Sindrom Down Negeri Selangor, dan Pertubuhan Pemulihan Dalam Komuniti Sindrom Down

88. Anita Abu Bakar, founder and president of the Mental Illness Awareness & Support Association (MIASA), president of Persatuan Advokasi Kebangsaan Kesihatan Mental (NAMhA)

89. Sisters in Islam

90. Malaysia Federation of the Deaf

91. Dr Choy Sook Kuen, founder of Oasis Place multidisciplinary intervention centre

92. Nik Nadia Nik Mohd Yusoff - mother of two autistic girls

93. Persatuan OKU Sentral

94. Dr Hasnah Toran, chairperson of Raudhah Autism

95. Ahmad Daniel Sharani, deputy chairperson of Persatuan OKU Sentral

96. Nazmin Abdullah, chairperson of Perlis Akreditasi Teens Centre (PESTEC)

97. Siti Khadijah Mohd Zamin, Pengetua, Akademi Remaja Autisme Islam (ARISMA)

98. Noradilah Abdullah, Nur Kidz Centre

99. Fakhruddin Zakaria, Presiden, Persatuan Pembangunan Orang Kurang Upaya Anggota Terengganu (POKUAT)

100. Prof Dr Ruzita Mohd Amin, head of Disability Services Unit, IIUM

101. Mohd Rizal Mat Noor, chairperson of Persatuan Advokasi Kecederaan Saraf Tunjang Malaysia (MASAA)

102. Zamri Mansor, chairperson of Persatuan Pengguna Kerusi Roda Malaysia (PPKRM)

103. Ch'ng B'ao Zhong, autistic, licensed and registered counsellor (KB08026, a PA07601), psychology officer (counselling) at the Health Ministry

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