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.”
ADS
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.
ADS
Signatories:
- 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
- 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)
- Ng Lai-Thin, care partner, and Project Lead, National Early Childhood Intervention Council; and member, The OKU Rights Matter Project
- Meera Samanther, disability-gender activist, parent advocate, and Committee Member, Association of Women Lawyers (AWL)
- 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
- 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
- Senator (R) Ras Adiba Radzi, president Persatuan OKU Sentral; and president Persatuan Para Menembak Malaysia
- Bathmavathi Krishnan, president of the Association of Women with Disabilities Malaysia
- Noor Aziah Mohd Awal, Suhakam
- Kaveinthran Palanthran, Independent Disabled Human Rights Activist
- Dr Shyielathy Arumugam, Special Education Teacher, MOE & Parent Advocate
- Beatrice Leong, autistic, filmmaker and founder of AIDA (Autism Inclusiveness Direct Action Group)
- Dr Ikmal Hisham Md Tah, senior law lecturer UiTM/Disability Rights Law Researcher
- Dr Lim Tien Hong, chairperson Communication Department, Advocacy & Human Rights, Society of the Blind in Malaysia
- Edmund Lim, disability equity and inclusion activist for children, care partner, research officer, Persatuan WeCareJourney
- Dr Alvin Ng Lai Oon, professor of psychology, at Sunway University
- Mohamad Sazali Shaari, Persatuan Ibubapa dan Penjaga Anak Pekak Kuala Lumpur
- Our Journey, migrants and refugee rights advocate
- Centre for Independent Journalism
- Joan Sim Jo Jo, vice chairperson of Sarawak Society for the Deaf
- Desiree Kaur, Founder of Project Haans; vice president of Kiwanis Club of TTDI
- Murugeswaran Veerasamy, president of Damai Disabled Person Association Malaysia
- Ai-Na Khor, disability activist and service provider, Asia Community Service
- Sha Roose, a person with spinal muscular atrophy, disability activist
- END CSEC Network
- Malaysian Association of Sign Language Interpreters (MyASLI)
- Kemban Kolektif Consultancy – intersectionality of gender & disabilities
- Faiz Shuhaimi, president of Majlis Belia OKU Malaysia
- Annie Ong, president of the National Organisation of Malaysian Sign Language (NowBIM)
- Sharifah Tahir, care partner, Teepa Snow Positive Approach to Care Certified Independent Consultant and Trainer, founder of UniquelyMeInitiatives
- Make It Right Movement
- Elijah Irwin, Officer, Malaysian Foundation for The Blind (MFB)
- Family Frontiers
- 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
- Association of Women Lawyers (AWL)
- Mary Shanthi Dairiam, Founding Director, IWRAW Asia Pacific and Former UN CEDAW Committee Member, Human Rights and Equality Advocate
- Leela Koran, a linguist with an interest in disability-related issues
- Feilina Feisol, board member of the National Autism Society of Malaysia (NASOM) and Ronald McDonald House of Charity (RMHC)
- Anthony Chong, Co-Founder-Secretary, Malaysian Sign Language and Deaf Studies Association (MyBIM)
- Syed Azmi, PUAKPayong
- Siti Aishah Hassan Hasri, SPOT Community Project
- Tini Zainudin, child activist
- Maalini Ramalo, Development of Human Resources for Rural Areas (DHRRA), Malaysia
- Angie Heng, executive director of Kiwanis Down Syndrome Foundation
- Dr Ling How Kee, Social work educator and disability rights supporter
- Dr Ramanathan, CEO YAYASAN IPOH
- Dunstan Lim, chairperson, Sarawak OKU Skills Development Association (SOSDA)
- Dr Zahilah Filzah Zulkifli, co-founder of doktorbudak and chairperson of Malaysian Advocates for Child Health
- Dr Wong Woan Yiing, consultant paediatrician, committee member, Network for the Needs of Children with Disability Perak
- Childline Foundation
- Toy Libraries Malaysia
- Cathryn Anila, Vanguards4Change
- Dr Julia Lee, Associate Professor (Education Sciences), Universiti Malaysia Sarawak
- Anisa Ahmad, president Persatuan Pengasuhan dan Perkembangan Awal Kanak- kanak Berdaftar Malaysia (PPBM)
- Ivy Josiah, Women’s Rights Advocate
- ENGENDER Consultancy, a CSO advancing gender equality
- Malaysian Association of Social Workers
- NGOhub
- Wong Hui Min, president of the National Early Childhood Intervention Council, Malaysia
- Sin Tiew Cheo, chairperson of SPICES Early Intervention Centre
- Izyan Nadiah Md Noh, Special and Inclusive Education Advocate
- Women’s Centre for Change (WCC)
- Sherrene Teh, Registered Music Therapist, member of the Malaysian Music Therapy Association, ELITE@UM Fellow 2023
- Tay Chia Yi, vice president of the Malaysian Association of Speech-language & Hearing (MASH)
- Aishah Diyana, clinical psychologist and caregiver to a person with dementia
- Prudence Lingham, speech therapist, parent, committee member, Persatuan CHILD Sabah
- Sivasangaran Kumaran, Rare Disease Advocate
- Alvin Teoh, National Family Support Group for Children and People with Special Needs
- Lee Yu Ying, behaviour analyst and co-founder of Shining Star Learning Hub
- Mary Chen, disability advocate, care partner
- Srividhya Ganapathy, a person with ADHD, child rights activist, and co-chairperson of CRIB Foundation
- Raaginee Shalesh, founder of Pusat Jagaan & Latihan Insan Istimewa IMC
- Mabel Gong Siew Choo, care partner
- Buku Jalanan Chow Kit
- Cikgu Rahayu, children education activist
- Goh Siu Lin, family and child rights lawyer
- Sharmila Sekaran, Voice of the Children
- Methodist Care Centre, Sarawak
- Lam Saw Yin, president of Special Olympics Malaysia
- Stella Chia Siew Chin, Pusat Jagaan Kanak kanak Ceria Murni
- Kong Lan Lee, director of Persatuan Kanak-Kanak Istimewa Kajang Selangor
- Saiful Abdul Hamid, a semi-caregiver for PWD and an avid lifelong learner
- Tan Kuan Aw, an artist with multiple disabilities and disability rights activist
- Maizan binti Mohd Salleh, founder and president of the Kuala Lumpur and Selangor Albinism Association
- Christine Lee, a wheelchair user
- Vicky Chan, Harapan OKU member
- 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
- Anita Abu Bakar, founder and president of the Mental Illness Awareness & Support Association (MIASA), president of Persatuan Advokasi Kebangsaan Kesihatan Mental (NAMhA)
- Sisters in Islam
- Malaysia Federation of the Deaf
- Dr Choy Sook Kuen, founder of Oasis Place multidisciplinary intervention centre
- Nik Nadia Nik Mohd Yusoff – mother of two autistic girls
- Persatuan OKU Sentral
- Dr Hasnah Toran, chairperson of Raudhah Autism
- Ahmad Daniel Sharani, deputy chairperson of Persatuan OKU Sentral
- Nazmin Abdullah, chairperson of Perlis Akreditasi Teens Centre (PESTEC)
- Siti Khadijah Mohd Zamin, Pengetua, Akademi Remaja Autisme Islam (ARISMA)
- Noradilah Abdullah, Nur Kidz Centre
- Fakhruddin Zakaria, Presiden, Persatuan Pembangunan Orang Kurang Upaya Anggota Terengganu (POKUAT)
- Prof Dr Ruzita Mohd Amin, head of Disability Services Unit, IIUM
- Mohd Rizal Mat Noor, chairperson of Persatuan Advokasi Kecederaan Saraf Tunjang Malaysia (MASAA)
- Zamri Mansor, chairperson of Persatuan Pengguna Kerusi Roda Malaysia (PPKRM)
- Ch’ng B’ao Zhong, autistic, licensed and registered counsellor (KB08026, a PA07601), psychology officer (counselling) at the Health Ministry
