KUALA LUMPUR, Sept 18 – Whenever she visits government clinics, Pauziah, a deaf individual in the Klang Valley, said the staff never takes into account her disability.
Despite informing them that she was deaf, her name was still called out via an audio-based queue system. After waiting for hours, she was chastised for not responding.
Mary, who is also deaf and from Sabah, said she avoids government clinics if she can help it.
Despite her disability she still has to withstand lengthy wait times. As a result, Mary said she’d rather self-medicate with homeopathic remedies than endure the uncertainty in waiting.
These are a couple of accounts from a report on barriers to sexual and reproductive health and rights (SRHR) that women with disabilities face in Malaysia.
A recurring theme across the experiences of the women interviewed for the report was the systemic lack of care and accessibility within Malaysia’s health care system, especially in government facilities.
Many respondents reported that unless a facility already had accessible systems in place, staff were often unwilling to make even minor accommodations.
Navigating Inaccessible Systems Without Adequate Support
This institutional inertia disproportionately burdens persons with disabilities, who are then expected to navigate inaccessible systems without adequate support, according to the report by the Asian-Pacific Resource and Research Centre for Women (Arrow) and The Datum Initiative.
Even when the need for a sign language interpreter was clearly communicated, it was routinely dismissed.
Health care staff assumed that deaf individuals could write or read Malay or English fluently, ignoring that Bahasa Isyarat Malaysia (BIM or Malay Sign Language) is a distinct first language, and literacy in Malay or English may be limited.
Pauziah recounted an instance where, in the midst of pain, she struggled to write her symptoms and was brushed off when she requested an interpreter.
However, she also recalled one rare positive experience with a female gynaecologist who used anatomical diagrams to communicate, demonstrating an inclusive and patient-centred approach, even without an interpreter.
Despite this, Pauziah noted that she was still commonly labelled as “deaf and dumb” in medical records, revealing the enduring use of outdated and stigmatising terminology in clinical practice.
Subjected To Medical Paternalism
Many of the women interviewed for the report also said they were subjected to medical paternalism, with participants across all disabilities (physical, sensory, psychosocial, and learning) frequently sharing that health care workers preferred to speak to caregivers instead of directly to them, assuming that they lacked the capacity to understand or decide for themselves.
Sometimes, this patronising attitude extended to caregivers and also included inappropriate information and advice.
During her childhood diagnosis, Mei, a respondent with a physical disability, said that doctors provided minimal information to her parents and painted a bleak future, telling them she was unlikely to succeed academically or live independently.
In comparison, a few respondents noted that private health care institutions, though more expensive, tended to be more accommodating and respectful.
Lakshmi, a blind participant, said that her experiences during pregnancy were markedly better at a private hospital, where she was treated with dignity and compassion, unlike her interactions in public facilities.
Shortcomings Of Government Health Care
The inconsistency of care from government facilities was a common concern. Farah, who lives with a mental health condition, spoke of a disappointing encounter with a substitute doctor during her scheduled government clinic appointment.
The temporary doctor lacked both interest and expertise, prescribing medication without proper consultation, which left her feeling dismissed and dehumanised.
In rural areas or smaller towns, the lack of specialised knowledge among medical staff exacerbated the issue.
Mei, a participant with a rare physical disability, explained that she was the only person in her region with her condition.
As a result, doctors had neither the knowledge nor the community infrastructure to support her, leaving her to “self-educate” and advocate for her own care.
Belittled For Not Having “The Autism Look”
Adults with learning disabilities were also repeatedly misunderstood. Many health care providers continued to view ADHD or similar conditions as “children’s problems”, often refusing treatment or medication.
Iman, a transmasculine individual, who is autistic was denied ADHD medication by a government psychologist, despite having a formal diagnosis from a psychiatrist. She was also doubted and belittled for not having “the autism look.”
Farah, who has a psychosocial disability, was subjected to ableist jokes by her doctor who didn’t take her condition seriously.
Meanwhile, Mary expressed her frustration at the communication breakdown with doctors who were unwilling to simplify medical explanations or ensure that she understood the information they were providing.
Medical jargon was used without translation or clarification, reinforcing the idea that disabled patients were not worth the time or effort.
Women With Disabilities Frequently Denied Vital SRHR Information
According to the report, the intersection of gender, disability, and cultural norms was most evident in how health care providers responded to sexual and reproductive health questions.
Women with disabilities were frequently denied vital SRHR information unless they were married, a practice based on heteronormative and moralistic assumptions that they were asexual or undeserving of reproductive autonomy.
One respondent said that she was explicitly told to only return for information “once she became sexually active or wanted children,” denying her proactive agency over her body and choices.
Overall, the respondent’s experience reveals a health care system that not only lacks the training and infrastructure for inclusive care but also perpetuates paternalism, stigma, and structural discrimination.
The system assumes that disabled women are dependent, passive, and asexual, reinforcing barriers to access and contributing to a wider climate of distrust, frustration, and health inequity, according to the report.
Policies Fall Short In Addressing SRHR Of Persons With Disabilities
The report pointed out that while both the National Health Policy and the Malaysian Health White Paper (HWP), emphasise universal health coverage, neither mainstream the rights of persons with disabilities (especially women and girls) in their SRHR provisions.
The HWP, tabled in 2023, aims to restructure Malaysia’s health care system through “whole-of-society” reforms. Yet, it fails to adequately address intersectional marginalisation, particularly at the nexus of disability, gender, and reproductive health, noted the report.
It highlighted that the HWP makes only cursory mention of disability inclusion, and does not have a comprehensive strategy to address SRHR for women and girls with disabilities.
Strategic Core 4 of the People with Disabilities Action Plan 2016-2022 (Teras Strategik 4 Pelan Tindakan OKU 2016-2022) outlines specific plans to expand access to health care for persons with disabilities, including increasing and expanding sexual and reproductive health care services for women with disabilities, increasing the number of health care professionals and medical practitioners trained in disability, and upgrading existing medical facilities to incorporate universal design, according to the report.
However, no information of the plan’s outcomes is publicly available.
Last month, the Ministry of Women, Family and Community Development said it is currently developing a new People with Disabilities Action Plan.
Urgent Need For Systemic Reform
According to the report, Malaysia’s fragmented policy landscape lacks coordination and transparency. There is no dedicated, cross-sectoral body tasked with overseeing disability-inclusive health planning.
This results in inconsistent data collection, policy silos, and the persistent neglect of marginalised disabled populations, including migrants, stateless persons, and indigenous communities.
The report highlighted the urgent need for systemic reform grounded in respect, agency, and the lived experiences of women and girls with disabilities.
