Disability and Abortion Rights, Ethics in question

(Cover image by Manu Vega/Getty Images)

Many people are divided regarding something as controversial as disabled rights or abortion.

The issue is that current abortion rights here in the UK still allow abortions to be performed past twenty-four weeks pregnant if the fetus is found to have severe disabilities detrimental to its survival.

I interviewed Ella Glendinning, a disabled filmmaker, who had some experiences and opinions to share on the topic after the birth of her son, River. 

Controversially, disability comes into the conversation when people interviewed for the documentary who were polled by You.Gov in December last year would abort. Statistically, it is already known that ‘Fourty-two percent …think it should be legal to terminate for spine Bifida after twenty-four weeks, and thirty-six for down syndrome (to be aborted if a baby was discovered to have these conditions).’

This even includes the fifty-five percent of the population in England, who are disabled themselves, agreeing with the current law.

After the case re-appealing the changing of the law on abortions concerning babies and any disability they might be born with being aborted up until birth was lost, the survey revealed on the show that ‘Only sixteen percent, of people, agree that terminations for a disability diagnosis should be illegal after twenty-four weeks.’

With the law allowing such difficult decisions for parents of children who may be born without proper growth of essential things to live, like organs or abilities, it is complicated. 

The recent Documentary on channel 4, Disability & Abortion: The Hardest Choice, had actors Ruth Madely and Reuben Reuters having difficult conversations with themselves and family.

It started with Ruth finding that she didn’t know what to feel about the history surrounding the attitudes about disability.

‘I think having honest conversations about disability is, is always valuable. And especially with parents and family members. And it is really interesting too, for, for us, wasn’t it, to see how our parents, I guess, what were delivered the news that we had disabilities, but also what the attitudes were and how different they are from then to now.’

Similarly, Ella had conversations with her own parents and friends about this. She added that “Most disabled people that I've spoken to, who were diagnosed when they were in the womb, (their parents, like mine, were offered terminations) “They were given quite a bleak outlook.', or I say bleak, but they were given quite an extreme outlook, which I understand. Has to be done. You have to be; apparently, you have to be told, that sort of worst case scenario or most extreme version of this child's condition, but they were told I might never be able to sit up and speak and…”

“For me personally, again, if I were to become pregnant again and if I were told that they didn't think they would speak, or move or whatever... I think that they're still a whole and valuable person and that people can be completely amazing and not be able to move or speak. But anyway, in my case, clearly, I can speak and move.”

“It makes me sad that that was like one of the first things that was said to them was, 'you need to think very hard about what you want to do.’ The implication being to have a termination, but luckily my parents, they didn't, they didn't consider it, and they were already... you know, I think my mum was like twenty weeks (pregnant)  by then, and they already really loved me. They were very committed to having me, and I'm very grateful for that.”

In particular, it was a little upsetting to hear how Ruth’s mother was treated after her daughter’s disability was discovered because of how rude and outdated it seemed.

‘They were doing three scans then, and they found this (Ruth’s Spina Bifida) on the third. It was very negative. ‘Said that you wouldn’t really do much when I said I could feel you kicking; they said, well, she’s got arms, you know….’

Channel Four’s Matt Frei interviewed actors Ruth Madeley and Ruben Reuters, who are both disabled actors, making a documentary called Disability & Abortion: The Hardest Choice on the subject.

Both the actors are Pro-choice, but the topic of the Roe Vs Wade abortion ban in America creates ripples across the world. 

On the 24th of June this year, the BBC reported that The US Supreme Court had overturned the landmark legal ruling in the US from 1973.

Initially, the law was created because of a court case in 1969 when Norma McCorvey challenged Texas under the false name of “Jane Roe” because it didn’t allow abortion except when birth was dangerous for mother and child.

The defence lawyer was Henry Wade, who made part of the rule’s moniker.

‘In 1973, her appeal made it to the US Supreme Court, where the court heard her case alongside that of a 20-year-old Georgia woman, Sandra Bensing.

They argued that abortion laws in Texas and Georgia went against the US Constitution because they infringed a woman’s right to privacy.

By a vote of seven to two, the court justices ruled that governments lacked the power to prohibit abortions.’

They judged that the US constitution protected a woman’s right to terminate her pregnancy, which the UN considers a human right in most of Europe and England.

Reuben Reuters and Ruth Madely had an important point about the decision when it concluded birth and disabled babies or children.

Ruth said, ‘For, for this documentary? It wasn’t about being pro-choice or pro-life at all. …this was looking specifically at the differences in law when you have a disability and when you don’t- It was looking at…specifically how decisions are made when disability is involved and…what factors play into that.’

Reuben admitted that he thought, ‘-That’s not just to do with medical decisions, that’s to do with how society, how society is equipped and how the world is, is designed for disabled people. And, and, and we aren’t there yet.’ 

With the law seeming essential, however problematic, it seems to me that, unless a baby is missing quality of life expectancy or other essential parts of their body, such as organs… It feels wrong.

 The ability to terminate a baby or babies stops at a certain point unless they are found to have a disability. It’s very tangled up with the ethics of disability and human rights.

Ella, likewise, had a view on this, despite how tangled it is with disabled rights and ethics. In particular, the reaction of strangers to her pregnancy.

“-Another experience was that, that I experienced regularly was that when I did disclose that I was pregnant, people would have this really sad face and sort and ask, "is the condition- it is the condition genetic? Like, oh, is it, (The Baby)  gonna be like you and my condition's not genetic." And I knew that. I honestly got to the point that I said, "well, it's not, but I wish it was like, I hope so. I'd love to have a disabled child because to me; disabled people are just beautiful, you know, I really love myself."

“I love my disabled body and soul, and the disabled community is just the most beautiful thing to be a part of.  I didn't want people to be sad thinking, 'Oh, she's having a disabled child.' Like I would sing from the rooftops. If I found out I was gonna have a disabled child, that's not to say it doesn't come without challenges.” 

 “-You feel as if you, you would've been able to cope if your son had a condition that was similar to yours?”

“Yes. Because I feel, I feel like that's one thing that came up that most parents, like the ones that do kind of come to terms with my child might be disabled and I'll love them no matter what, but the struggle and the fact that there's, there's little to no support for parents as it is. And then you have, you know, parents with children who have, complex, needs complex disabilities. Then there's that guilt that parents have every parent probably has, but then the, "I made my child disabled or what if I can't cope if they're disabled?" And the way that the world views what disabled people are like, and, you know, there's sort of, "how could you let your child live with this disability?”

“You have to be like, well, this person also has a disability. They are taking care of their disabled child, perhaps the way they wanted to be cared for or making a good example of how a disabled child can be cared for because everything's changed so much through history. You know, we kind of have to create a new path.”

When it comes to this difficult topic of ethics, teaching others can be exhausting, and at times, even though it is needed, it isn’t the job of people like myself and Ella to educate. 

In particular, there are times when expectations or outdated views can be difficult.

“So was there anything that you were told by doctors or did anyone tell your partner, anything about your pregnancy, sort of negative attitudes or anything positive that you'd like to mention?”

Ella: “I had a really lovely obstetrician who, very kindly, looked, allowed me to explore my options because I wanted to have a natural birth.” 

“She, you know, she wanted to support me in that. And so she booked me an MRI scan, and she was just great.  I was very ill when I was pregnant. I had a blood clot, which is rare but  more common in pregnant women and more common for people who (have) less mobility.”

Ella: One horrible experience was when I was in hospital, and I was very ill. I was on a labour ward, even though I was twenty-six weeks pregnant. It was terrifying. My life was on the line. My baby's life was on the line.

And I walked past this woman who was with a friend, I think, and that she was about to give birth, and they like nudged each other and laughed at me, laughed at the way I looked, and it felt very unjust in the moment. I mean, I get that all the time and in normal life. But when I was a pregnant woman in a hospital, it just felt like going through this horrendous and life-changing thing, it just felt so cruel and bigoted, and it was just horrible.

Gregory: “Oh, Gods.

Like a nervous reaction that, you know, disability would sometimes have on people, but like at that time when you were vulnerable, it must have really hurt.”

“Yes.”

 “...and I think maybe you kind of pictured what the birth would be like, and then it wasn't how you imagined, I suppose. Because like you said, you had internalized ableism of what your birth should be, Because you're kind of basing it on maybe a woman that doesn't have a disability like you, and the way that it's portrayed in the media, you know, everything goes either amazingly well, or it goes terribly wrong. Obviously, when you're so anxious, and you don't know the risks, you're probably scared of that as well.”

“Yeah.” 

“I mean, I feel like that is kind of a sore spot for the disabled community. Because you have like, you know, particularly in the generations that we were born in, you know, you have all this... 

The medical model of how disabled people are taught. And maybe, you know, when you were younger, or, your parents were told one thing when you were born or your caretakers or something, you know, things that have been disproven now, but we still sort of carry them with us. -And they're very painful experiences sometimes. So you kind of felt like you had to reclaim your body almost in a way, I think. “

“So you had to, you know because it's your journey, but it's; also, it's the important birth of your son. So you had to go, "well, okay, there's this level. And then there's this, which is the disability on top. "This has to also work for me. This is my body. And it's different for every woman. Your friend is right there, but at the same time, it's different for you also due to your disability."

“It's so, such a broad topic,  even the documentary that we've both watched in order to prepare for this article, it is difficult for the women because they all have unique stories. They also have, you know, unique worries that I suppose almost every parent would have, but. It's just quite a broad, unknown subject.

The positive side to all this is that times are slowly adapting, and younger generations, like Ella, Scott, who is River’s father, and of course, River, who perhaps will make conversations on important topics like ethics, and understanding disability. 

“So River's only three, so he doesn't really have that understanding yet. I have tried to talk to him about disability and diversity generally. From like, you know, very young. He is very young.

“We have conversations. I don't think he's noticed a difference. I'm just his mum. Like he'll never do a double take when he sees me, and that's, that's an amazing kind of thing to be experiencing as a mother and as a disabled person.” 

“No, Because, you know.  He's your son, and you are his mum. That's all that matters. I think, I don't think I've realized I was disabled until I was like five ish and started going to school because it's, you don't really realize that you are different until you see other people. And then you're like, okay.”

“-And it's part of like the discovery of sort of around the age of like three to five. So. You know, you've done a film about this.  I think with family and friends, haven't you?”

“Yeah.”

Gregory: “The sort of discovery of when do you discover that you are disabled and that becomes part of your identity?”

(About the value of disabled people) “Obviously, it does. But ableism is the biggest challenge that any disabled person will have to face.”

“It is. Because there's still quite a lot of inequality. And I think, you know, sadly there are gonna be points where, you know, he might get bullied or people might, you know, because in the end, people don't understand, what they're afraid of and what they're afraid of they, don't understand. So, you know, disabilities come under that sort of 'great unknown'.” 

“They either fascinate people to the point where it becomes rude because they're asking all these questions or people just don't want to ask because they don't want to offend. And it feels very sort of awkward, especially when it comes to, abortion or disabilities or family, any of those important things that of course do need to be discussed.”

“...but they're very, very difficult. So was there anything said to your parents or your friends or you in person growing up that kind of made you think, well, I have to do something about this when I'm older because I don't want to be treated like this? I don't want anyone like me to be treated like that.”

“It is. Because there's still quite a lot of inequality. And I think, you know, sadly there are gonna be points where, you know, he might get bullied or people might, you know, because in the end, people don't understand, what they're afraid of and what they're afraid of they, don't understand. So, you know, disabilities come under that sort of 'great unknown'.” 

“They either fascinate people to the point where it becomes rude because they're asking all these questions or people just don't want to ask because they don't want to offend. And it feels very sort of awkward, especially when it comes to, abortion or disabilities or family, any of those important things that of course do need to be discussed.”

When it comes to the most important things that the disabled community faces, its general attitudes to our partners, or like Ella’s pregnancy, our life choices.

Ella wasn’t sure if anyone had treated Scott differently since she got pregnant with their son but had an experience to share about how he was viewed by friends and complete strangers.

“I'm not sure if anyone treated my partner differently when they knew I was pregnant. I'm not sure about that, but certainly, I a big theme in relationships and something that's often happened in mine. And my ex-partners’ relationship is that people think you're a total saviour.”

“If you are a non-disabled person dating a disabled person. So definitely people always. It was very clear. They thought I was very lucky to have Scott this like handsome, lovely, perfect man. ... and I was like, he's lucky to have me as well.  People definitely thought he was an angel, and that's so annoying.”

“I know, but like really gets to the point of like people asking questions, not because they're genuinely curious and what other, nor it gets to the point where it's not curiosity, it's almost bullying and it's kind of awkward.”

“-But you know, it seems like a mixed bag.  People will like, "oh, you are so brave. Your partner has a disability. Your child is disabled. Like you're amazing."  

“It's kind of putting people on pedestals, which isn't great. For one, they don't have ramps(!), so, you know, it's kind of difficult to get off them.  You know, we wanna be told that we're amazing for different things, but not for being disabled, for our achievements.”

 When it comes to River, who is at nursery, being only three at the moment, I asked Ella if she was worried about what people might say as he gets older, about having a disabled parent and being curious.

“You know that is my big fear. And certainly for me, spending more time in places with other children. That can be anxiety-inducing because, of course, it's gonna happen more and more when he goes to school. Of course, children are curious, and children do ask. 

Children, like everyone else in this society, are pummeled with the message that disabled people are worth less than non-disabled people or just less human.”

“So I am, I am nervous about the comments I'm gonna get, which I've already, I've already got, you know, I've already had kids say, say funny stuff to me, and sometimes it's funny, and sometimes it's fine. Sometimes I'm up for talking about it and explaining things to them. Other times, I'm not.” 

 “That's something I'm dealing with at the moment is I'm trying to come up with like a standard answer so that I don't have to be really vulnerable with these children who are just being curious. (So that) I'm not like shutting them down or shaming them for their curiosity.” (But I am looking out for my mental health with these questions.)

When it comes to the value of us as people and the value of an unborn baby who might be disabled, the law seems like a sore subject. On feels like disabled children are allowed to be aborted up to birth, whereas there's like a whole window on abortions for children who don't appear to or don't have disabilities. It feels almost like a violation of human rights as a disabled person.

Personally, I feel like that is what people feel uncomfortable with on top of everything else, making people uncomfortable with things like pregnancy and disability as well. That adds, as Ella has said, multiple times to emphasize important points in this interview, another layer of complexity.

 “Yeah. It seems like if there were a timeframe, I think that would probably pressure people to make the decision. So…”

“...but then having the choice is important, but taking it away seems like you have no choice but to have a possibly sick child that you might not be able to care for. And it feels like maybe that person is being punished. Whereas, like, even though it's quite complex for someone whose baby has been found to have some sort of disability to go, "I want this baby, but... I can't care for their disability." and then have an abortion.”

“-And then, you know, it's always that "You know, what- what if they could have lived a 'perfect' life, I could have had enough support, you know?” (Like some of the interviewees in the show, Disability & Abortion: The Hardest Choice)

“Yeah.”

 “Yeah, because it's a life; everyone has a right to live, but it's quite difficult because, you don't know, it becomes this whole debate on, you know, what if, and you won't know.”

“-But when it comes to decisions where like, like your disability yourself, there were just so many unknowns. Probably the doctors didn't know when it comes to a decision like that, where they're like, we don't know how disabled your child is. They might not be able to survive. And then, if they don't, there's that guilt.”

“I can see how that is quite important. Like, we both are people with disabilities. We are more than our disabilities. Obviously, we built careers and opinions and everything that everyone else has of like a general person in life. And, it feels almost violating to sort of all say,  you know,  you could have been aborted up until the moment you were born; it's almost as if they're saying, you know, you are not valued as a person." 

Ella: “I expected people to treat me with more compassion and kindness- with more respect...  And actually, people didn't even notice my baby bump, which is just so typical. All they see is a wheelchair.” 

When it comes to being respected and understood, attitudes are changing, with more of a positive, it seems like that is happening, albeit slower than the disabled community would prefer.

“...I think we are to some extent, but when it comes to maybe public awareness or public opinion, there still are those old-fashioned values. But maybe we aren't considered as valuable to society.

So it is a, it's a very complex subject, but it's definitely an important thing to discuss.

Yes, I was very glad when you said you would help with this because I know that you have very important opinions, as you said, on this topic, since your filmmaking explores the disabled identity and what that means to be a person with disabilities. So, thank you very much.”

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