Centre for Disability Law and Policy National University of Ireland, Galway University Road, Galway, Ireland Tel: +353 (0)91 495888, SMS/Text Phone: +353 (0)87 6660634, Fax: +353 (0)91 495569 Email: [email protected] Centre for Disability Law and Policy Submission to the Citizens’ Assembly on Repeal of the Eighth Amendment to the Constitution 15 December 2016 About Us The Centre for Disability Law and Policy (CDLP) at NUI Galway was formally established in 2008 and works in pursuit of equal opportunities and social justice for persons with disabilities in Ireland and around the world. Since its establishment, the CDLP has organised and participated in a number of key events regarding disability law reform. The CDLP’s operating philosophy is ‘scholarship in action’ which entails research that addresses the problems that ordinary citizens face and providing practical policy solutions. In the course of our work we have made submissions to national and international bodies advocating for policies and laws that best facilitate the free and full exercise of rights for people with disabilities. Introduction The CDLP welcomes this opportunity to make a submission to the Citizens’ Assembly as it debates an issue of critical importance to people with disabilities in Ireland – the Repeal of the Eighth Amendment of the Irish Constitution. This submission covers three main issues – the impact of the existing Constitutional position on abortion on people with disabilities in Ireland who wish to terminate a pregnancy, the need for better information and support to be provided to those who receive a diagnosis of a foetal abnormality in Ireland, and how a new legislative framework which simultaneously respects reproductive choice and does not discriminate against people with disabilities can be developed in Ireland once the Eighth Amendment is repealed. Finally, we suggest some areas of law which need to be revised once the Eighth Amendment is repealed, to ensure that the reproductive freedom of persons with disabilities is respected on an equal basis with others. Barriers to Reproductive Choice for Persons with Disabilities under the Eighth Amendment Article 40.3.3 of the Constitution reads as follows: “The State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right. This subsection shall not limit freedom to travel between the State and another state. This subsection shall not limit freedom to obtain or make available, in the State, subject to such conditions as may be laid down by law, information relating to services lawfully available in another state.” People with disabilities (women, intersex people and trans-men) in Ireland who want to terminate a pregnancy are obliged to travel in order to access abortion. The difficulties of travel for many people in these circumstances have been highlighted in cases such as Ms Y’s1 and via social media campaigns such as #TwoWomenTravel2. For many people with disabilities, travel is further complicated by accessibility requirements – including physical access to transport and services, as well as the support required to travel, such as personal assistance. Further, many people with disabilities may face additional barriers in accessing information about services available in another state – particularly where this information is not provided in accessible or alternative formats such as braille, sign language and easy to read versions. People with disabilities living in congregated settings can face significant barriers to accessing information about abortion, especially where the disability service provider responsible for their care operates under a particular religious ethos. The impact of being forced to travel was found to amount to a violation of Article 3 of the European Convention on Human Rights in the 2011 decision of the European Court of Human Rights in A, B & C v. Ireland 5 EHRR 13. Two United Nations human rights monitoring committees - the CEDAW Committee (Concluding Observations: Ireland (UN CEDAW/C/SR 1 Alicia Gauch, ‘Critical Analysis: Ms Y Tests Ireland’s Abortion Policy’, Denver Journal of International Law and Policy, 2 November 2014. Available at: http://djilp.org/5382/critical-analysis-ms-y-tests-irelands-abortion- policy/ [(last accessed 15 December 2016). 2 Twitter account: @twowomentravel Available at: https://twitter.com/twowomentravel?lang=en (last accessed 15 December 2016) and hashtag #twowomentravel available at: https://twitter.com/hashtag/twowomentravel?src=hash&lang=en (last accessed 15 December 2016) 440 1999) 185 and the Convention Against Torture Committee (Concluding Observations: Ireland (UN CAT/C/IRL/CO/1 2011) have emphasised the discriminatory impact of the requirement to travel for abortion. The CDLP asserts that this discrimination is amplified and intersectional for the pregnant woman with a disability. The CDLP is concerned that the amplified discrimination and risks for the pregnant woman with a disability, forced to travel to access abortion, have received insufficient attention to date. We ask the Citizens’ Assembly, in light of Ireland’s pending ratification of the UN Convention on the Rights of Persons with Disabilities’ (CRPD), to take a disability perspective, consider the second and third parts of Article 40.3.3. and consider how accessibility to the right to travel and to information in relation to reproductive rights will be secured for people with disabilities. All individuals should have access to the medical practitioners familiar with their medical history and preferences during and after pregnancy – this may be particularly important for people with disabilities. The limited availability of abortion in Ireland means that people with disabilities who wish to access abortion must travel abroad to do so, with attendant financial burdens and health risks. People with disabilities are not assisted financially in exercising their right to travel. The CDLP contends that the current law in Ireland fails to address unreasonable burdens on the body, health, life, welfare and dignity of people with disabilities imposed by the requirement to travel for abortion and that it is of heightened importance for persons with a disability to be able to consult with their usual doctor/s in these situations. Disability Sensitive, Human Rights-Compliant Information on Foetal Abnormalities Currently, there is no consistency in access to pre-natal screening in Ireland, a position which is partly due to the existence of the Eighth Amendment of the Constitution. There are fears that as screening becomes more commonplace, selective abortion will become normalised, creating challenges for informed consent and reproductive autonomy.3 In our view, antenatal screening must be scaffolded by scrutiny of informed consent processes and provision of comprehensive, non-directive information that is compliant with a disability rights approach. Current Medical Council of Ireland guidelines state that: “it is lawful to provide information in Ireland about abortions abroad, subject to strict conditions. It is not lawful to encourage or advocate an abortion in individual cases.” 4 Doctors may give diagnoses and information, but any counselling offered must be non- directive. The recent scandal around rogue crisis pregnancy agencies has given rise to proposed legislation for stricter regulation of counselling services. The existing Medical Council guidelines and stricter regulation of services should ensure that prenatal diagnoses arising from screening are accompanied by non-directive counselling and comprehensive signposting and resourcing of pathways of care. Robust pathways include referral to a clinical expert in foetal medicine, care from multidisciplinary teams with experience of supporting crisis pregnancies through and beyond the neonatal period, and where requested, referral to abortion services.5 Good practice around disclosure of a pre- or neonatal diagnosis of disability recognises the uniqueness of each pregnancy and emphasises the strengths and abilities of children born with a particular condition. The joint HSE/National Federation of Voluntary Bodies Informing Families project6 has been developed as a resource to assist health professionals to provide information to women about continuing a pregnancy and raising a child with a disability in a way that is disability-sensitive and respectful of human rights. Significant progress needs to be made more generally on the rights of people with disabilities in Ireland in order to 3 Antina de Jong, Wybo J Dondorp, Christine de Die-Smulders, Suzanne Frints, Guido de Wert, ‘Non-invasive prenatal testing: ethical issues explored’. European Journal of Human Genetics. 2010;18(3):272-277, available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2987207/ [accessed 3 December 2016]. 4 Medical Council of Ireland, Guide to Professional Conduct and Ethics for Registered Medical Practitioners (7th ed) (2009.) 5 Royal College of Obstetricians and Gynaecologists Termination of Pregnancy for Fetal Abnormality in England, Scotland and Wales: Report of a Working Party (2010), available: https://www.rcog.org.uk/globalassets/documents/guidelines/terminationpregnancyreport18may2010.pdf [accessed 14 December 2016]. 6 HSE/National Federation of Voluntary Bodies, Informing Families of their Child’s Disability: National Best Practice Guidelines (2007) available: http://www.informingfamilies.ie/_fileupload/Informing_Families_Guidelines.pdf