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In its latest report, the UN Committee on the Rights of Persons with Disabilities notes with ‘concern’ that the ‘negative perception of persons with disabilities’ in Belgian society contributes to the ‘high level of selective termination of pregnancy’.
Published on 5 September, the observations of the CRPD (Committee on the Rights of Persons with Disabilities) are part of the periodic review of Belgium's compliance with the obligations contained in the International Convention on the Rights of Persons with Disabilities. Adopted in 2006, the Convention was ratified by Belgium in 2009.
In drawing up its observation report, the CRPD, which is made up of independent experts, takes into account the information provided by Belgium and the contributions made by a number of civil society organisations regarding respect for the rights of people with disabilities in Belgium in recent years.
Link between screening, abortion and rejection of people with disabilities
Among the points raised by the Committee is the issue of widespread screening for trisomies (in particular trisomy 21, or Down's syndrome) at the prenatal stage in Belgium, through the NIP-test.
In point 16 of the report, concerning compliance with Article 8 of the Convention on raising awareness of the need to accommodate people with disabilities, the Committee ‘notes with concern [...] that societal perceptions that people with Down's syndrome and other disabilities have less value than other people contribute to the high level of selective termination of pregnancy following prenatal diagnosis of Down's syndrome or other disabilities’.
The fact that the negative perception of people with disabilities leads to a high rate of abortions due to Down's syndrome is in practice linked to the widespread use of the NIP-test as a screening method in Belgium. This non-invasive blood test is routinely offered to pregnant women, and is fully reimbursed by the Belgian state. Although healthcare providers are supposed to leave the choice to couples faced with the news of a disability, more than 95% of pregnancies are nevertheless aborted in the event of a diagnosis of trisomy 21 in Belgium (see IEB 25/02/2021).
The need for ‘complete’, unbiased information for parents
This particularly high rate of abortions has prompted the Committee to make a recommendation to the Belgian authorities concerning the objectivity of the information that accompanies such screening: Belgium is invited to ‘ensure that future parents undergoing prenatal screening receive comprehensive information and non-directive advice that does not encourage stereotypes about people with disabilities or the values associated with the medical model of disability’.
For healthcare providers and the authorities, the challenge is not only to refrain from providing biased information that would encourage abortion in the event of trisomy screening, but also and above all to inform and support the parents concerned in an appropriate manner, so that they can genuinely welcome a child with trisomy in good conditions, from a material, medical, social and psychological point of view.
Other countries that emphasise systematic screening, such as the Netherlands and Sweden, have also prompted questions from the UN committee. This report is the first time that Belgium's policy on screening and support for future parents has been called into question by an official international body.
Should parents be made to feel guilty or should society take responsibility?
Paradoxically, the increasingly positive reception given by our societies to people with Down's syndrome contrasts with the assessment of the undesirable nature of the birth of these same people. There is a risk that, because their disability has been detected and their birth avoided, the parents of these children will be perceived or presented as all the more responsible for their care, or even their situation.
On the contrary, the observations and recommendations of the UN committee help to denounce such individual guilt-tripping of parents, by reminding us of the collective responsibility of society, but also of the political authorities and carers, in promoting the reception and integration of people with Down's syndrome, from the start of their lives.
Image by Gerd Altmann from Pixabay