Sexual and reproductive healthcare issues facing women with disabilities

The United Nations Convention on the Rights of Persons with Disabilities sets out clear rights for people with disabilities and family planning, but Irish law is not in line with the Convention, suggests Sandra McCullagh.

  • Article 23 of the UNCRPD sets out the right of disabled people to marry, have families
  • People with disabilities have not traditionally been seen as sexual beings
  • Irish law is quite controlling of people with disabilities and sexual relationships
  • Women with disabilities are often seen as eternal children and have their reproductive health controlled or regulated
  • Irish laws relating to reproductive health in general are not in line with United Nations treaties

Article 23 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) focuses on respect for home and family. The Article reaffirms the right of persons with disabilities to marry and have a family, to have access to reproductive and family planning information and education and to have the means to exercise these rights. Both the UNCRPD and broader women’s rights treaties reaffirm the right of women with disabilities to decide on the number and spacing of their children. (The word ‘woman’ is used throughout the article for the purposes of brevity. The author also acknowledges that reproductive issues impact on transgender people).

Acknowledging the right of people with disabilities to marry and have children means acknowledging that people with disabilities are sexual beings. The history of disability and sexuality in this country is a sorry one. Forced sterilisation, the absence of sexual education, outdated laws controlling your sexuality (see the now repealed Criminal Law (Sexual Offences) Act 1993) , having your children removed from your care without first being offered supports; these are all part of the characterisation of people with disabilities, and in particular, people with intellectual disabilities as asexual or ‘eternal children’. (You have little chance of finding a condom machine in an accessible public bathroom, but hey, disabled people have no need of such things, right?).

Controlling the reproduction of women with disabilities

Throughout history, women with intellectual disabilities have been viewed as a problem when it comes to sexuality and reproduction. Trent, writing in 1994 called women with intellectual disabilities “the most serious threat to society”, and their fertility something that had to be ‘dealt with’. Non-consensual contraception and forced sterilisation have been employed with the aim of preventing conception. These practices continue to be used in many countries around the world, despite a litany of human rights committees and conventions explicitly declaring them to be human rights violations. The Committee against Torture, the Committee on Economic, Social and Cultural Rights, the Committee on the Rights of the Child, the Beijing Platform for Action and others have criticised States’ parties on this issue.

Women with intellectual disabilities experience multiple barriers to the enjoyment of good sexual and reproductive health. These include a hesitancy among service providers to provide information, limited exposure to sex education, a higher prevalence of sexual abuse, under-treatment of menstrual disorders, lower rates of screening, legal and systemic barriers and a general denial of their right to consensual sexual expression.

When women with intellectual disabilities become mothers, there is little support offered. While societal attitudes towards intellectual disability have changed over the past decades, supports for women with intellectual disability in pregnancy and motherhood remain mostly absent.

In Susan Doyle’s article that follows this one, the difficulties that parents with disabilities experience in childcare proceedings are illustrated. Despite the substantial body of evidence indicating that maternal IQ is not systematically correlated with parenting competence, and that parents with an intellectual disability can adequately care for their children, given appropriate support, negative attitudes towards women with disabilities having children still prevail.

While parenting with a disability can be fraught with issues, choosing to terminate a pregnancy is perhaps even more contentious. Some commentators have suggested that there is an inherent contradiction between abortion rights and disability rights. They point to statistics from some countries that indicate very high rates of termination where Down Syndrome has been identified. Such statistics are indeed worrying, and are symptomatic of a society that does not value the lives and worth of people with disabilities.

The answer to this is not found in limiting the rights of women (including disabled women). Denying women the right to make decisions about their own bodies will not result in a better society for people with disabilities. Writing in the Irish Times in 2015, Rosaleen McDonagh, who describes herself as a feminist with a disability, claimed that disabled feminists are “caught between being pro- or anti-abortion”. In her article, she referred to the use of disability rights by anti-choice groups as “manipulative and exploitative”.

The vast majority of the discussion around abortion and disability tends to focus on non-disabled women, and most often ‘disability’ only enters the conversation when the focus is on pregnancies where there is a diagnosis of a ‘foetal abnormality’. Focusing on non-disabled women feeds into a narrative that denies the sexuality of women with disabilities. There is a lack of acknowledgement of disabled women, their particular experiences of being pregnant in Ireland, and how Ireland’s abortion laws affect them.

In fact, as well as side-lining the needs of women with disabilities in the debate, the focus on foetal abnormality as a ‘legitimate’ reason for abortion also serves to reinforce the idea that disabled lives are of less value. The notion of justifiable reasons for abortion (disability, rape or incest being the most commonly cited) also reinforces the idea that women’s decisions on their reproductive lives should be open to interrogation by society. No woman should have to justify her reason for terminating a pregnancy beyond it being the right choice for her.

Moving beyond choice

In reality, women’s reproductive choices are shaped by the social contexts within which we find ourselves, where inequalities in power and in social and economic conditions influence our decisions. Access to supports and services, financial resources, and family circumstances all influence the choices women make.

Our understanding of what it means to raise children with disabilities is shaped by social and cultural attitudes, and by stigmas and stereotypes. It is influenced by the stories we hear of the dire situation in which families find themselves when they cannot access the necessary supports and services.

We need to recognise the role that such factors play in reproductive decision-making. All women should have the right to make their own reproductive choices. But choice alone cannot be the end goal. We must ensure that women are supported no matter what that choice is. Reproductive rights must encompass the right to end a pregnancy but also the right to have a child, to be supported to do so, and to have the social and economic resources to have a family. Abortion rights should go hand in hand with sexual education, accessible and affordable contraception, pre- and post-natal care, childcare and a range of community-based health, social care and disability-specific supports to enable women to raise their children well, no matter what their support needs.

The role of women with disabilities in the debate

Efforts have been made by pro-choice groups in recent years to adopt an intersectional approach and to be more inclusive of the experiences of a diverse range of people, including women with disabilities, ethnic minorities and trans men and women.

Speaking at the March for Choice in September 2016, Rosaleen McDonagh spoke eloquently of her experiences as a Traveller and disability rights activist:

“As a Traveller woman, many of us have been in very precarious situations. In our relationships with the law and the Department of Health, we have often been pushed around or ignored. We are not considered ‘important’ women…we have stood on the side-lines of feminism for too long…Irish feminism and pro-choice has to broaden and consider voices who are learning the language of liberation”.

It now seems certain that there will be a referendum on abortion in 2018. It is vital that a broad spectrum of women, including women with intellectual disabilities, are supported to engage in the conversation.

This means hearing the voices of women with disabilities. It means being open to challenge where our language around, or pre-conceived ideas of, the lives of disabled people, results in stereotypes being perpetuated. We must ensure that in our efforts to secure reproductive rights for all who need them, we do not devalue the lives of people with disabilities in the process.

We must ensure that the choices we want people with disabilities to have, in all aspects of their lives, extend also to making choices with regard to their own reproductive lives. Referring to her experiences as a woman with a physical disability, Louise Bruton put it so succinctly: “My body is my body and I don’t want that to change just because I’ve moved from the orthopaedic ward down to the maternity ward”.

Sandra McCullagh is an Advocacy Project Worker with Inclusion Ireland’s Campaigns and Policy Team. Sandra coordinates Inclusion Ireland’s research activities and supports the development of policy. Sandra holds a Masters in Social Justice and Public Policy from DCU.