Autonomy and Informed Decisions
Persons with disabilities have the same rights as everyone to:
- Access and receive affordable, quality healthcare services without discrimination, including screening and diagnosis, rehabilitation and therapy services, treatment and medication.
- Make informed decisions that affect their health, mind and body, including medical treatment, therapy and clinical experiments, independently or with supported decision-making.
- Receive only healthcare services that they consent to.
- Access healthcare services within their own communities, including rural areas.
- Understand healthcare information that promote quality of life, prevent illness, help decision-making about treatment and ensure public health.
- Ethical healthcare services and clinical experiments, especially for children with disabilities.
Persons with disabilities can make decisions regarding their physical and mental health when they are adequately supported to do so. However, persons with disabilities are often excluded from accessible health information, not just in the dissemination of public health information but also how information is communicated to persons with disabilities by healthcare professionals during personal consultations.
The right to make informed decisions regarding their health and body are often taken away from persons with disabilities. Many healthcare professionals side-line patients with disabilities and communicate with the accompanying person instead. From history-taking, patient interview, discussion about medical/therapy procedures and treatment, obtaining consent for treatment or therapy, to explaining about medication.
Such practice is especially widespread for persons with limited or no spoken communication, persons who require more time to respond, and persons with perceived limited understanding. This is disrespectful to the patient with disability and undermines the capability of the individual to understand and communicate their own body’s condition and make health decisions. It also reflects underlying ableist perspectives towards people with disabilities.
Upholding Autonomy of Persons with Disabilities in Health
Persons with disabilities have the right and can make decisions regarding their health. Collective effort from everyone is needed to uphold the autonomy of persons with disabilities regarding their physical and mental health. Everyone, especially healthcare service providers and caregivers, has a role to play, such as:
- Promoting awareness of the rights of persons with disabilities to physical and mental health.
- Communicating health information in a language and modality that the person with disabilities understands or prefers. Alternative communication methods include: in writing, pictures and graphics, Braille, sign language (Bahasa Isyarat Malaysia), easy read format, accurately captioned videos, etc.
- Listening to health concerns of persons with disabilities and taking them seriously.
- Letting persons with disabilities make health decisions, independently or with supported decision-making.
- Respecting the health decisions made by persons with disabilities.
At the same time, all the above measures need to be supported with policies and action plans that support autonomy of persons with disabilities, enhance education and employment, eliminate poverty and discrimination of persons with disabilities. Unlearning ableist perspectives and practices in healthcare service provision is crucial to supporting persons with disabilities in making health decisions.
*Note: Resources linked are in English and pdf or webpage format, unless stated otherwise.
Research Papers and Reports
Report on the rights of persons with disabilities to the highest attainable standard of physical and mental health (easy-to-read version available) by UN Special Rapporteur on the rights of persons with disabilities
Bodily autonomy: Busting 7 myths that undermine individual rights and freedoms by United Nations Population Fund (UNFPA)
Why we need to stop dismissing bodily autonomy for children with disabilities by Lola Phoenix in Everyday Feminism
Making Healthcare Choices: Perspectives of People with Disabilities (video in English with captions) by American Civil Liberties Union
About Supported Decision-Making by Center for Public Representation (United States)
Assisted Decision-making Act in Ireland by Inclusion Ireland
Capacity toolkit by New South Wales (Australia) Department of Communities and Justice
Legislation – Malaysia
Mental Health Act 2001 (Act 615) (English)
Akta Kesihatan Mental 2001 (Bahasa Malaysia)