Learning Disability Today
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In a new documentary, Disability and Abortion: The Hardest Choice, Ruth Madeley and Ruben Reuter explore the complex issue of whether the law on abortion discriminates against disabled people.
Currently, the law in the UK allows the termination of disabled babies up until full-term, yet for typical pregnancies, there is a 24-week limit.
Heidi Crowter and Máire Lea-Wilson recently took the UK government to court over this clause, arguing that there should be a 24-week limit for all pregnancies.
While they lost the case, it sparked a debate about whether disability is defined too broadly in the Abortion Act, and whether it could be altered so that it takes into consideration the varied lives disabled people lead.
Throughout the documentary, Ruth and Ruben speak to people with disabilities, their families, mothers who have lost babies with disabilities, healthcare professionals and charity leaders to explore the ethics of termination past 24 weeks.
Ruth, a BAFTA-nominated actress, has spina bifida, a condition that meant her spinal cord did not develop properly in the womb. Ruth is mobile and can walk short distances unaided, but mainly uses her wheelchair to get around.
Ruben has Down’s syndrome, meaning he was born with an extra chromosome. He has a girlfriend, a flat of his own and a busy career as an actor, news presenter and customer services assistant at his local leisure centre.
The pair both live happy and fulfilling lives, yet foetuses with both of their conditions can be aborted up until full-term. At the beginning of the documentary, Ruth and Ruben are both very clear that they disagree with this law, but they are determined to find out more about the topic by speaking to professionals and those with lived experience.
During the documentary, Ruth and Ruben speak to Natasha, who has experience of both terminating and continuing with her pregnancy following a disability diagnosis.
Natasha had to make the decision whether to continue with her pregnancy twice, after finding out on both occasions that her child was likely to have a severe disability.
At Natasha’s 20-week scan, she found out that her baby had inter-uterine growth restriction. This meant she would have to be delivered prematurely, which likely would have caused blindness, cerebral palsy and a risk of premature death.
As the pregnancy progressed, Natasha developed preeclampsia, and was told that her baby had a low chance of survival. At this point, after much deliberation, she decided to terminate the pregnancy.
When Natasha was told her second child would likely be disabled too, she didn’t want to consider ending the pregnancy. She decided to proceed, and at 29 weeks, Natasha gave birth to a baby girl by C-section. Sadly, Libby only survived for three days.
Natasha’s experience clearly highlights how the law allows women to choose what is right for them. It seemed that Ruth and Ruben both agreed that women should be able to terminate their pregnancies if their child is very unwell, and has a low chance of survival or poor quality of life. However, they struggled with the idea that every person with a disability is “lumped in together” under the same law.
Both Ruben and Ruth feel they have a great quality of life, and struggle with the idea that other babies with the same condition as them may never get a chance to live their lives because of the law.
They question whether the law could be tweaked so that it takes into consideration how severe the disability is and what quality of life the child will have.
The Abortion Act 1967 states that mothers can legally terminate their pregnancy beyond the 24th week if “there is a substantial risk that, if the child were born, it would suffer from such physical or mental abnormalities as to be seriously handicapped.”
Disability campaigners have long called for this clause to be updated with modernised language and for it to be altered so it does not homogenise disabilities.
To discuss this further, Ruben speaks to Tanni Grey-Thompson, a Welsh politician, television presenter and former wheelchair racer. Tanni says the law is problematic because it lumps all disabilities together and frames them in such a way that they are seen as inherently negative.
She argues that the law should be tweaked so that it recognises that many people with disabilities can live happy and fulfilled lives as opposed to lives of pain and suffering.
She said: “The abortion legislation can be written in such a way that it does provide some caveats and it does provide decision-making ability as part of it. But I think there should be equality in the abortion law, that it should be 24 weeks, because as it currently stands, the fact that it’s so different for a disabled foetus, it just devalues disabled people’s lives.
“There are some disabled people who have really difficult and challenging lives, but that’s about the fact that we still live in a world of inaccessibility and steps, and no ramps and no lifts and no [accessible] toilets and things like that. Actually, we should think about how we fix the built environment, not just how to eradicate disabled children.”
However, Dr Ruben Johki, a consultant in foetal and maternal medicine at Sheffield’s Jessop Hospital, explains that prospective mothers are not forced to go down one road or another, and are always given a choice of whether they want to continue with their pregnancy or not.
He says introducing a 24-week limit for all pregnancies would remove the right for women to exercise choice, something that could have a significant impact on a family’s quality of life.
This is particularly important given that some families may not have the financial means to support another child, especially a child with a disability, that typically costs more to support.
Indeed, research by Scope found that on average, a family with a disabled child would have to pay £581 a month to have the same standard of living as a family with a non-disabled child. For one in five families, these extra costs come to more than £1,000 a month.
“We don’t place value on life. It’s about providing the support for people so that they have a choice. Once you’ve taken away the choice of what they can and can’t do, whether it be with their body or how they want to live, then, what have you left them with?” Dr Johki asks.
However, throughout the documentary, we hear from various mothers about how their disabled child’s life was negatively framed to them by healthcare professionals.
Heidi’s co-claimant Máire Lea-Wilson, whose son Aiden has Down’s syndrome, was told during her pregnancy that her child would be born with a disability.
Máire said the doctor who delivered the news was very negative about Aiden’s outlook, and pressured her into terminating the pregnancy.
Máire was told it was unlikely Aiden would ever walk or talk and that he would have a “very difficult” life. She said she was made to feel that bringing Aiden into the world “would be a really bad thing”.
“We said that we didn’t want to talk about abortion, but … we were asked three times whether we wanted to abort him. The last time was just a few days before he was born.
“I did think about whether I was doing the right thing by continuing with the pregnancy and that made me feel really guilty for a long time afterwards. Now Aiden’s here, it’s really, really hard to look at him and to think that at one point I wasn’t sure if I even wanted him, because he’s amazing and he’s wonderful,” she said.
Ruth’s mother tells a similar story, as do countless other parents of disabled children. Anecdotally, it therefore seems that prospective mothers of disabled children are often given a poor prognosis, and doctors often portray the worst-case scenario. While it is important that parents are aware of the risks, they should not only be told about the negative outcomes for their child.
If there is a chance their child could go on to live a happy and healthy life, prospective parents should be told this too.
Each disability or condition comes with a range of outcomes. For example, some people with Down’s syndrome will be able to have a job and live in the community with support, whereas others will need full-time care. While doctors can rarely predict the specifics, parents should be fully informed about all the potential outcomes.
It is also important to note that foetal abnormalities often don’t show up on scans until 20 weeks into the pregnancy.
If terminations past 24 weeks were made illegal, this would leave many women with only a short period of time to decide whether to continue with their pregnancy or not.
Jane Fisher, chief executive of the national charity ARC, says that changing the law could therefore actually have the opposite effect of what campaigners hope for.
“The idea of stopping the law at 24 weeks, I think would backfire because it’s going to mean that more people perhaps make a decision quickly, because they can’t wait beyond that to gather more information.
“[Changing the law] would mean that there are people in positions after 24 weeks who are forced into continuing a pregnancy that they don’t want. I don’t think that achieves anything for people who are actually living with disabilities, to force parents to continue when they don’t want to,” she said.
Ms Fisher says the law does not insinuate that disabled lives are worth less than others, and it is simply in place to allow parents to make their own personal decisions within the context of their own lives.
The debate surrounding the abortion law is complex and nuanced, and there is a clear need to strike a balance between a woman’s right to choose and ensuring the law does not discriminate against disabled people.
Ruth and Ruben are both clear that the documentary’s purpose is not to explore the pro-choice versus pro-life debate, but is instead about investigating some of the complexities around the law, and whether it is ethical to terminate pregnancies beyond 24 weeks, purely on the grounds of disability.
In an interview with Matt Frei, Ruth said: “The last thing any of us want is for women to be left without choice and that just wasn’t part of our conversation. For us, it was looking specifically at how decisions are made when disability is involved and what factors play into that. And that’s not just to do with medical decisions, but it’s also about how society is equipped and how the world is designed for disabled people and we’re not there yet.”
In saying this, Ruth alludes to the idea that perhaps less pregnancies would be terminated on the grounds of disability if society was better-equipped for disabled people.
People with disabilities face barriers to inclusion every day, and this can make it harder for them to participate in everyday life and common daily activities compared to their non-disabled peers.
Society is structured without disability in mind, and while public services have a duty to provide reasonable adjustments for disabled people, this doesn’t always happen. Until it does, disabled people will feel marginalised and negative stereotypes about disability will prevail.
From this debate, it is clear that negative perceptions about disability must change and there should be greater awareness about the incredible achievements people with disabilities can make.
Disabled people are valued members of society and diversity should be celebrated. For this reason, what is needed is more information and support to allow prospective mothers to make a decision that is right for them.
A key part of this is ensuring that expectant parents of disabled children are equipped with all the information they need. Healthcare professionals should work with these parents to explore all the plausible outcomes for their child, and should signpost them to a variety of resources which offer a balanced viewpoint.
More challenging will be improving accessibility so that disabled people are put on an equal platform and can access everything in the same way that non-disabled people can. This involves providing reasonable adjustments, removing barriers to inclusion, and creating an effective care system that parents are confident in. Without this, parents may be worried what will happen to their child as they get older, particularly when they are no longer around.
Making these changes would help parents to be more optimistic about disability, and encourage them to consider all the amazing things their child could achieve.
But until this happens, Ruth and Ruben agree that while the law could do with tweaking to better reflect the varied lives disabled people have, it has “huge value” in “giving parents choice in unthinkable situations”.
They agree that focusing on changing society’s attitudes towards disabilities should be the main focus, so that parents don’t fear disability in the way many currently seem to.