Have I already written about this? I know I touched on it in the post around sterilisation… Hmm… maybe I haven’t… I think maybe I was avoiding it because it is such a huge and complex area…
Firstly, I am pro choice. I believe that women have the right to chose what happens to their body. For me, this is not a case of not valuing a fetus, it is a case of valuing the woman’s life more. I do not believe making abortion difficult will stop abortion. Making abortion illegal will just make abortion more dangerous. It will not stop abortion.
Secondly, language around this issue is full of emotion and controversy and I have done the best I can.
Thirdly, this is not a discussion about the morals and ethics surrounding abortion itself. It is about abortion and disabled or potentially disabled fetuses. I am making an assumption, for this post, that the society in which this debate is taking place allows women access to abortion.
Ok, now we’ve clarified that, what does abortion have to do with disability?
Here I am considering the right to abort a fetus which has a disability. The argument against screening for disability and then acting on the information is that it is a form of eugenics. As we’ve already seen on this blog, the eugenics movement in the early 1900s had a profound effect on disabled people and their rights and their lives. Here we are not sterilising or killing people who have a disability but instead are stepping in earlier and preventing a potential disabled person from being born. Society is allowing the reproduction of people with “undesirable attributes” to be stopped. This underlines the idea that all disability is bad and that everyone is better off not being disabled.
Adrienne Asch is one writer who finds abortion for “fetal indications” profoundly troubling. This is not because she regards fetuses as persons and abortion as seriously morally wrong. Her view is that abortion is morally acceptable if the woman does not want to become a mother. However, she distinguishes between abortion to prevent having a child (any child) and abortion to prevent having
this child. Why, Asch asks, would someone who wants to be a mother reject this pregnancy and this (future) child because of one thing about that child: that is, that he or she will have, or is likely to have, a disability? She believes that such rejection is likely to stem from inaccurate and prejudiced ideas about what it is like to have a disability or to parent a child with a disability.
It is important to know a bit about prenatal screening and the information available to parents who are going through this process. There are two parts to prenatal diagnosis; the first is screening which gives parents and idea of how likely it is their child would have a particular health problem, the second is then a definitive test. The first is non invasive, consisting of scans and/or blood tests and looks for things like infectious diseases, Down’s syndrome, or physical abnormalities. The second is invasive and carries certain risks but gives a more certain yes or no about whether the fetus has a particular condition.
One really important thing to keep in mind here is that these prenatal tests do not tell a parent that their child will be born healthy or without disability. There are many many many conditions or illnesses which cannot be screened for. This then creates a potential for people with certain disabilities being considered less worthy of life. There is a question of who decides what disabilities are screened for and what are the consequences of that (obviously science and technology plays a part but this is still all guided by people). For example if most fetuses with Downs Syndrome are aborted, we end up in a situation where there are fewer people with Downs and those that are alive may feel they are being told by society that they shouldn’t be.
Another consideration is the severity of a disability, just because someone tests positive for a condition does not mean they will be disabled by it. Take my condition, you can be severely disabled by it or you can go through life without too much impact. This approach is saying that anyone with x is inevitably going to have a difficult life rather than considering the severity of the condition and the society around that potential person. A millionaire with x will have a very different experience than someone who is unemployed – money buys support and equipment and such things.
The language used in the debate also assumes both that all disabilities are equal and the same and that there is no good life available for a person with a disability:
Disability in the context of a termination decision for a wanted pregnancy has been described as a “tragedy” and a “defect”— using the language of pain, suffering, and devastation. The focus is on the potential suffering a child with a disability will allegedly experience and inevitably bring on parents and other siblings. The fetus with a disability that is survivable post- partum is often considered damaged.
The paradox of disability in abortion debates: bringing the pro-choice and disability rights communities together
A key argument against abortion of disabled fetuses is that if society changed, there wouldn’t be a problem for that disabled person. As such, abortion is removing the need for society to change how it sees and supports people with disabilities.
But, what if the parents are in a situation themselves where they cannot cope with the additional things that come with having a disabled child. Is it then fair to insist they have that child and suffer the detrimental impact on their lives as well as the child’s? Here I’m thinking about additional financial burdens, especially in cultures where health costs are extortionate and parental leave non-existent. Whilst it is nice to consider what would be ethical in an ideal world, we do not live in an ideal world.
For Lippman, the rhetoric of choice is meaningless; to knowingly carry to term a baby with Down syndrome “cannot be a real option when society does not truly accept children with disabilities or provide assistance for their nurturance”
Keeping the backdoor to eugenics ajar
A further consideration is those parents who know there is a chance of an inherited condition who want to get prenatal screening not so that they can have an abortion, but so that they can mentally and physically prepare. Prenatal testing and finding out the child may have a disability does not mean that parents will inevitably chose to terminate the pregnancy.
Whilst it’s easy to talk in examples, it is unfair in some ways. We all find ourselves in situations where there is no good answer and stigmatising parents who have made incredibly tough decisions, whatever they decide, is not helpful to this debate.
“All decisions about screening and termination are difficult and can only be made by those people who have to live with the consequences”
Shakespeare distinguishes between population level eugenics (such as that during world war 2 and forced sterilisation) and individual level eugenics (those decisions made by individuals and families). I find this an incredibly helpful way of thinking about things. I am absolutely against population level eugenics but I know that if I got pregnant, I would want to have access to abortion. This is because there is such a high chance that any child of mine would have my genetic condition and whilst I do have a high quality of life, I don’t want someone else to suffer through some of the painful and difficult things I’ve been through.
Shakespeare also points out that whilst screening and access to abortion is not the same as historic practices, the culture and context in which decisions are made can promote the same outcomes. That is, if you are making a decision to have a disabled child in a society which does not value disabled people and which is not set up for or accomodating of disabled people then that free choice is very different to a free choice made in an inclusive society. Similarly, whilst parents have the choice about whether they get prenatal screening, there has become something routine about doing so, it is considered part of the normal path of pregnancy.
This complicated issue becomes even more so when you try and bring in political views and feminism. I am not even going to attempt to tackle that paradox here but if you are interested check out The Paradox of Disability in Abortion Debates who explain more coherently than me how “disability rights and reproductive rights can conflict and intertwine, particularly on the issue of later abortion.” Jenny Morris and Tom Shakespeare both write articulately on the subject as well.
The over simplification of the debate and the nature of the situation has led to a lot of misunderstanding and conflict, in particular in my bubble world between feminism and disabled people who would often agree on many other issues. This has the potential to become divisive and that often wipes out the opportunity for nuanced discussion and sensitive conversations. And these interactions should focus on society, not individuals. Disabled people, or fetuses, are not the problem here. The society in which we live is. If parents knew that their child would grow up in a welcoming, supportive, accepting and accessible world then their reaction to screening results or their interest in knowing at all could look very different.
I’m going to wrap up this intensely difficult issue with a couple of quotes for you to think about:
“Very few forms of impairment involve so much suffering that non-existence would be preferable… Prenatal diagnosis can be justified in terms of the effect on parents and other siblings, but cannot be justified in terms of the benefits to the lief which is prevented from coming into existence as a result, except in the most severe cases of impairment”
“If the responsibility is placed on the individual woman to exercise the choice whether or not to give birth to a disabled child then the responsibility for choosing to bring up such a child also rests on her”
Jenny Morris (discussing the arguments, not sharing her view)
If you want to find out more about Tom’s views and the future of prenatal screening and testing then his lecture at Harvard Law School is worth a watch.