‘The disabled experience is an inherent rebellion for we live against the desire that we should not’
Read Part I here
Edited by Dr. Roberta Francis Watene, Ph.D. and Umi Asaka of the Donald Beasley Institute
The disabled experience is an inherent rebellion, for we live against the desire that we should not. No matter how liberal a bubble is, the legitimacy of the disabled existence is thrown around without trepidation or second thought. Philosophical and legal ‘debates’ about eugenics and euthanasia, for instance, inevitably falls into highly insensitive and triggering discussions about the quality of living a disabled life. If feminism is ever to create a safe space for all women, it must acknowledge the history of eugenics, which, unfortunately (silently) rears its ugly head in ‘liberal’ discussions – most notably within euthanasia and abortion.
Womb Side and Earth Side – The Debate Continues
Don’t worry. I can sense your hesitation in continuing to read on. Correlating eugenics, euthanasia, and abortion is a technique frequently coopted by anti-abortion lobby groups like Family First. It reeks of articles aimed towards shaming people from making a personal choice about their body. It reeks of picket signs outside Family Planning clinics. It reeks of anti-feminism. I get it. I feel the same hesitation writing it. I always feel a need to disclose my belief that child-bearing individuals must have the choice to do as they please with their bodies, and that right is not up for debate. At the same time, however, I viscerally recall being set an assignment in Year 11 science class about prenatal testing. I viscerally remember stumbling across an article entitled, “I wish I had been aborted.” The author had the same condition as me. I recall using it as a legitimate source, a point of discussion with family, friends, and my teacher.
I also still recall the tears in bathroom stalls when my classmates would insensitively defend the ‘liberal’ euthanasia laws of European countries. I recall years of trying to undo my insistence that there was something fundamentally “not good” about me. We disabled people live our lives carrying the hurt, the pain, and the loneliness of existing in a world that rejects us. The only balm for my scars? Learning from disability activists about disability pride. Learning to blame the way society is structured, not myself. With the unlearning and learning came a need to refuse to pit my feminism against my disability pride.
Prenatal screening tests are commonly used to screen for chromosomal abnormalities in the fetus – namely conditions such as Down syndrome. The tests are simple and non-invasive. In Iceland, more than 85% of pregnant people take the prenatal test. Of the tests that suggest there is a chance that the fetus will have Down syndrome, the termination rate is near 100%. In Britain, 90% of women who learn that their child may have Down syndrome terminate their pregnancy. The statistics are undeniable: Down syndrome is effectively eliminated, or well on its way to be, in countries around the world, and Aotearoa New Zealand’s current trajectory is not far off. According to the president of the New Zealand Down Syndrome Association, one in 700 children were once born with Down syndrome in Aotearoa, New Zealand. However, since the introduction of the scans, it has become closer to one in every 1000, and the number is diminishing.
Abortion has finally been decriminalised in Aotearoa, New Zealand, and the Abortion Legislation Bill is currently undergoing Royal Assent, after which it will come into law. The Bill allows for a health practitioner to provide abortion services to a person who is not more than 20 weeks pregnant. If a woman is more than 20 weeks pregnant, an abortion may still be deemed clinically appropriate when considering physical and mental health. It was this decision that caused some anger amongst parents of disabled children, who claimed that Prime Minister Ardern had promised to protect disabled babies by not changing the time periods already set out in the law. Not only are parents concerned about the impact this might have on the disability community, but they also fear that women will be coerced into a termination by male partners who don’t want to have a disabled child.
Historically, Europe and the Western world, by extension, have had a preoccupation with eugenics, and it did not end with the Nazi regime. Interestingly, New Zealand’s Abortion Legislation Bill is not entirely silent on this elephant in the room. Under section 20F, the Bill firmly states that “This Parliament opposes the performance of abortions being sought solely because of a preference for the fetus to be of a particular sex.” However, there is a double standard in that feminists and policy analysts do not name the performance of abortions sought solely due to disability as equally unfavourable. We must acknowledge the story the statistics tell us: we see a eugenics-based genocide against certain disabilities. The inevitable question must be: how can I reconcile my sympathies with concerns about eugenics, with my pro-choice feminist stance?
Women must be free to make a choice about their bodies. However, feminism needs to recognise that choice never exists in a vacuum. The general census amongst potential parents is that they do not want their future child to experience undue pain and suffering in their life. It is this preconception that many lobby groups have fought against. For instance, in 2016, French courts ruled against an advert made to reassure women that children with chromosomal abnormalities could lead fulfilled lives. The courts ruled that the advert would unnecessarily “disturb the conscience of women” who aborted fetuses who screen positive for certain disabilities. However, the advert is not wrong. In 2011, a survey of 285 people with Down syndrome revealed that 99% of them are happy with their lives, 97% like who they were, and 96% like how they looked. How can women be expected to make an informed choice when they are only given half of the story?
I’m not here to deny that our world makes raising a disabled child difficult. I also know it’s not easy to be a disabled child in an ableist society. Patriarchy is responsible for some of these struggles, as patriarchal society puts pressure on mothers to raise children more than fathers. The patriarchy fails to recognise the need for equitable support, making child-rearing so much more difficult. Moreover, Aotearoa’s health and disability system has significant racial disparities, disproportionately impacting Māori, and Pasifika women. The welfare system is also woefully insufficient, racist, and dysfunctional. How can we possibly claim that women have the freedom of choice when these equity issues continue to be an invisible hand in the process? High abortion rates of disabled fetuses also contribute to a narrative that leads to the aforementioned self-hatred. According to research by Erik Parens and Adrienne Asch, disabled people fear that the discourse surrounding prenatal testing repeats and reinforces the tendency to minimise their identity in relation to their condition. It’s a narrative that slowly and surely chips away at self-worth.
Don’t get me wrong – at the end of the day, I’m glad that abortion has been decriminalised. I don’t think the Bill goes far enough in allowing women to choose what they wish to do with their own bodies without undue pressure or shame. However, I’m a staunch believer in informed choice. Freedom to choose is a lovely notion, but feminism must seek to avoid the neoliberal trap of denying the context we make our decisions in. We cannot forget that in more recent decades, it has been this neoliberal trap that has maintained the patriarchy.
To Bear or Not to Bear
Unfortunately, the conversation surrounding reproductive rights, choice, eugenics, and disability doesn’t end here. It only gets more complicated. According to Marsha Saxton, “There is a key difference between the goals of the reproductive rights movement and the disability rights movement regarding reproductive freedom: the reproductive rights movement emphasizes the right to have an abortion; the disability rights movement, the right not to have an abortion.”
Recently, I took a trip to the gynecologist (a fun way to spend an hour at 8.30 am on a Friday, let me tell you). While I was going there for an entirely separate issue to fertility, as a disabled woman, future motherhood came up. My Doctor told me that there was a new science that would potentially allow me to erase my condition from my family line genetically. I raised my eyebrows, nodding, impressed because scientifically, it’s a feat. Ethically? I’m not so sure…
Throughout feminist history, the choice not to have a child has been one of the most important focuses of the feminist movement. However, disabled people with child-bearing bodies face different barriers. No one ever looks at us and sees a potential parent. Instead, the thought of us naturally reproducing is considered immoral and cruel. Non-disabled women often report experiencing barriers when they want to undergo tubal ligation – a permanent form of female sterilization. On the other hand, disabled women (and people generally) have undergone forced sterilization since science has allowed it. Yet, it is rarely (if ever) talked about through a mainstream feminist lens.
Sterilizing disabled people exudes more than a whiff of eugenics. It recalls U.S. policies in the 20th Century that led to the sterilization of more than 60,000 people by 1960 and the infamous Nazi “Law for the Prevention of Offspring with Hereditary Diseases,” in 1933. – The Atlantic 2013
In 1928, the New Zealand parliament almost passed a law that would allow for eugenic sterilisation of the “feeble-minded” or the “unfit.” Thankfully, the law was not passed. However, eugenics-based sterilisation is not a stranger in Aotearoa, New Zealand’s medical history, and it continues to occur around the world. For instance, non-consensual sterilisation of people with intellectual and learning disabilities is still legal in many parts of the United States.
In 2019, British courts ordered the forced abortion of a pregnant woman with developmental disabilities and a mood disorder, despite the objections of both the woman and her mother. The mother, who was the primary caregiver for her disabled daughter, promised to assume care of the baby (her grandchild). However, the Judge held that while she was “acutely conscious of the fact that for the State to order a woman to have a termination where it appears that she doesn’t want it is an immense intrusion,” this case was different. The Judge decided to operate in the pregnant woman’s “best interests” and “not on society’s views of termination.” At the background of all of this is Article 16 of the United Nations Universal Declaration of Human Rights and Article 23 of the United Nations Convention on the Rights of Persons with Disabilities, both of which enshrines the right to have a family as fundamental and universal.
I’m not claiming that these issues have easy answers. They’re nuanced and complicated. But, they are still issues that should be seen as feminist concerns. They directly relate to questions about bodily autonomy and choice. Thus, feminism must be willing to engage with them, no matter how uncomfortable and complicated they are. The Nairobi Principles on Abortion, Prenatal Testing, and Disability may be a good starting place for discussion. The Principles seek to reconcile disability rights with access to safe abortion and the importance of sexual and reproductive rights. They advocate for the giving of neutral and unbiased advice to pregnant people and informed decision making. The Principles seek to affirm bodily autonomy amongst all people who become pregnant – disabled or otherwise. They also aim to recognise ableism and acknowledge the long history of disabled people being targeted by eugenics policies. While the Principles don’t offer all the answers, they are a starting place for conversation. Most importantly, the Nairobi Principles actively seek to include disabled women in conversation and affirm that “there is no incompatibility between guaranteeing access to safe abortion and protecting disability rights.”
Ultimately, feminism must be willing to engage with these difficult conversations. Without discussing issues that directly impact disabled women, feminism will never be a movement for all. We should be able to talk about disability rights issues in liberal spaces without fear of being labeled anti-feminist or anti-abortion. Listening is key. I know that I still have more work to do – anti-racism work, anti-colonialism work, anti-heteronormativity work. I also have anti-ableism work to do. We all must work to dismantle all forces of hatred.