A/HRC/43/41
reduce internalized oppression and self-stigma and boost self-esteem. Peer support, in
particular, can help to counterbalance experiences of discrimination, rejection and isolation,
and can play a key role in building skills and empowerment.
61.
Inclusive education is one of the strongest tools for combating ableism. It is the
primary avenue by which persons with disabilities can obtain the means to participate fully
in their communities and challenge societal perceptions. 52 It is also an effective way to
build inclusive societies that value and embrace human diversity, helping children with
disabilities to develop a sense of belonging and children without disabilities to develop
positive attitudes towards disability. It is important that States foster an attitude of respect
for the rights of persons with disabilities at all levels of the education system, including
tertiary education. The renewal of the human rights paradigms in the training and practice
of health professionals is essential to respecting the rights of persons with disabilities.
B.
Rights-based prevention policies
62.
States must ensure that prevention strategies and interventions are respectful of the
dignity and rights of persons with disabilities. Viewing disability as a human rights issue is
not incompatible with the prevention of health conditions, as long as prevention policies are
not stigmatizing or discriminatory, for example through avoiding the use of language and
imagery that may convey the message that a life with a disability is not worth living. 53
Likewise, the investment in prevention policies must not lead States to waive their primary
obligation of promoting, protecting and ensuring all human rights for all persons with
disabilities.
63.
Prenatal genetic screening and testing should be implemented and made available in
a manner that respects the rights of persons with disabilities and values them as equal
members of society. Genetic screening must never be considered to be a cost-effective
alternative to providing the highest attainable standard of care or service for persons with
disabilities. The decision about having prenatal tests must be solely that of the pregnant
woman, regardless of her age, reproductive history or disability status. 54
64.
It is important that balanced and accurate information is provided, not just about the
risks and limitations of prenatal tests, but also about life with the condition that is being
screened for, in order to create a process for prospective parents to confront any personal or
societal bias to which they may have been exposed. The use of counter-narratives of
persons with lived experience could be important for combating the stigma and bias
experienced by prospective parents. For example, the campaign run by the Down’s
Syndrome Association of the United Kingdom of Great Britain and Northern Ireland, “Tell
it Right, Start it Right” offers an information pack, provides training to midwives and
related health professionals on providing balanced information related to Down’s syndrome
to prospective parents and includes individuals with Down’s syndrome and their parents in
the training.55 Ultimately, tackling ableism is a more effective way to address disabilityselective abortion.
C.
Respecting personal autonomy and integrity
65.
States have an obligation to review their legal and policy frameworks and repeal all
laws, regulations, customs and practices that discriminate against persons with disabilities
in the context of medical or scientific procedures, research and experimentation. Legislation
must expressly recognize the right of persons with disabilities to provide their free and
informed consent in such circumstances. Substitute decision-making regimes for medical or
scientific experimentation must be immediately repealed. Supported decision-making
schemes must be subjected to an appropriate framework of safeguards to ensure respect for
52
53
54
55
Committee on the Rights of Persons with Disabilities, general comment No. 4 (2016) on the right to
inclusive education, para. 10.
See World Health Organization and World Bank, World Report on Disability (2011), p. 6.
See Elizabeth R. Schiltz, “Finding common ground in the disability rights critiques of selective
abortions”, p. 140.
See www.downs-syndrome.org.uk/about/campaigns/tell-it-right start-it-right/.
15
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