We Must #flipthenarrative.

Just two or three days after hearing the play 19 Weeks on Radio 4 and feeling compelled to express my disgust at the inaccurate and dehumanising picture of Down’s Syndrome that the author presents, I came across an online newspaper article headlined:
‘Difficult Reason I Aborted My Baby – And Why Others Should Be Able To Do Same.’
My first thought on reading this was ‘Why is this news?’ Because if this was, as I suspected, a story about termination following a prenatal diagnosis, then it is the same situation that many other couples also face every day. This person’s situation is not unique, so what makes it newsworthy?
My second thought was to question why the headline included a plea for others to be allowed to do the same. UK law already allows termination of pregnancy beyond the usual legal limit of 24 weeks in cases where ‘there is substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’ (Abortion Act 1967 section 1(1)(d)). Is this, in fact, a plea for readers not to judge this person for making this choice? Are they signalling to us that this should be considered the right and proper thing to do under the circumstances, and that we should not stigmatise anyone else choosing to do the same?
I can tell you that there is no stigma surrounding Termination For Medical Reasons (also known as selective abortion) in the UK. The majority of people would agree that abortion is an acceptable response in cases where a prenatal diagnosis has been made. So poor is the perception and understanding of disability among the general population that they see it as ‘preventing suffering.’ The media are partly to blame for this.
I proceeded to read the article: and my heart sank. It did indeed concern a couple who had decided to abort a baby after receiving a diagnosis of Myelomeningocele Spina Bifida. No attempt was made in this particular article to give the reader a balanced factual overview of Spina Bifida. The baby girl’s condition was described using words and phrases such as ‘life of uncertainty’, ‘disappointment’, ‘worry’, ‘upset’, ‘fear and pain’, and ‘inevitable pain and suffering’.
The readership, at least those with no knowledge or personal experience of Spina Bifida, will forever associate those words with the condition, and by extension, with other disabilities: and no wonder — pick up any article referencing disability in almost any context and the chances are that it will be littered with similarly negative terms. People living with disability are inevitably described as ‘suffering from’ or as ‘sufferers’ (e.g. ‘Down’s Syndrome Sufferer’). The abiding impression we are left with is misery, that the disabled life is not worth living – a fate worse than death. Indeed, the same story covered in another newspaper almost explicitly says so: it begins with the words:
‘She Needed To Be Free.’
Does it come as any surprise that pubic perceptions of disability remain so negative and stereotypical when they are drip-fed ideas like this with their morning coffee?
There are some positive words in these articles. In both the parents are described as ‘brave’. Readers are told that the couple made the decision to abort ‘entirely for the child.’ Words such as ‘selfless’, ‘brave’, and ‘devoted’ are almost universally used by the media to describe the parents/carers of disabled people. Sometimes even abortion itself is described as an ‘act of love’.
Disturbingly, words closely associated with ideas of sainthood and martyrdom crop up in other kinds of articles about disability – when the media covers a story in which a parent has murdered their disabled child. We are invited to sympathise with the parent, but not with the disabled child who has been killed, even though the reality is that many of these cases involve extreme violence: the last moments of the victim’s life are spent in abject terror and pain, inflicted by the person they loved and trusted most on this earth. Read a newspaper article on the story and you will find that the killer is excused, and the person who has been killed ceases to be a victim and becomes, instead, the cause.
Journalists are often required to write under pressure on subjects about which they have no personal experience and little or no knowledge. They rely, therefore, on stock phrases and the ingrained stereotypes that they, along with most others, have unthinkingly absorbed throughout their lives. They may not have the time, or even see the need for, deeper research or to consider another perspective. Perhaps that’s why, when they are called out on what they write, they generally get defensive.
With regards to this particular article, I’m not sure who it is that needs to be called out. Who set the tone for this article – the journalist, or was it the parents? Most of the negative words and phrases used are attributed to the parents, as quotes, and right at the end of the piece we find out why the story has made it into the news. The parents are planning to undertake a sponsored challenge to raise money for charity in memory of their daughter – a very noble aim, but perhaps rather ironic given that they aborted her to spare her from ‘a challenging life’. So, I think it is likely that they contacted the press in order to publicise their fundraising efforts. Perhaps the journalist suggested to them that they phrase their words in this pitiful way in order to elicit reader sympathy to make them more likely to sponsor or donate. Given the harm that negative stereotypes do to people living with disability this certainly is not ethical, even if it is effective.
The couple were also quoted as saying they wanted to ‘raise awareness’. In light of the article’s tone I was left asking myself what exactly it was they were trying to raise awareness of – the realities of life with Spina Bifida, or something else? I had my doubts as to whether many people actually living with Spina Bifida would recognise their own lives in the description given. I think there is another agenda at play here, one set entirely by the couple.
Termination of pregnancy for medical reasons – selective termination – is a very traumatic experience, regardless of the foetal diagnosis or the stage of pregnancy at which the termination takes place.
A Meta-analysis published in the Journal of Obstetric, Gynecologic & Neonatal Nursing summarised a number of studies on the effects of abortion following a diagnosis of both fatal and non-fatal foetal impairments. The study found that following selective termination, not surprisingly, women felt great emotional conflict, for instance, they wanted to mourn but felt they didn’t deserve to. Among the strategies used by women to cope with and resolve their inner conflict are:
Denying the personhood of the baby (dehumanisation): During the course of her autobiographical play 19 Weeks author Emily Steel changes from referring to the child she is carrying as her ‘baby’ to her ‘would-be baby’. The child is effectively dehumanised following diagnosis, and from there it is surely only a short, but for these women perhaps necessary step, to dehumanising those who live with the same diagnosis, as Steel very effectively does.
Limiting the information they sought about the baby: Parents cling to the worst-case scenario and push away or deny any more positive information.
Transferring the agency for choice to others: Women will blame the diagnosis, saying ‘I HAD to abort because of (insert diagnosis)’, or ‘I lost my baby to (insert diagnosis)’. Or they might blame the child itself stating that it would be too difficult to look after, it would damage their career, or would ruin its sibling’s lives.
Adopting a stance of moral relativity: Parents will often assert that it was kinder to abort than to let the child ‘suffer’ life with a disability.
So, it is very likely that this loaded, negatively worded article, ostensibly a plea for help with fundraising, is also a coping strategy, a subliminal attempt by the couple to justify their choice to the world, and most importantly, to themselves, now that they have had time to reflect and are trying to come to terms with what happened.
‘What’s the problem with that?’ you might ask. ‘If they need to talk let them get it off their chest. It’s not good to bottle things up. Abortion shouldn’t be a dirty secret.’
The problem with it is, firstly, is that the couple are not objective – they have shared a very skewed view of life with a disability, and may also have presented an inaccurate picture of the condition their child was diagnosed with.
A couple of days after reading this article I was scrolling through Facebook whilst having a coffee. I came across a post from a casting/modelling agency whose page I follow. They had shared a picture of one of their models, a cute little girl. She was kneeling on the floor, smiling at the camera, eyes shining. I read the biography that accompanied the photos: her parents described her as ‘happy’, ‘cheeky’, and having ‘the best sense of humour’. They said she loves Peppa Pig, playing with toys, getting into mischief, going to nursery, and cuddles. They also said that she’s had a shunt fitted because she has hydrocephalus, and has ongoing bowel and bladder issues which are being ‘treated and managed’ — because this little girl, like the baby in the article, also has Myelomeningocele Spina Bifida.
Can you spot the difference? The description in the newspaper article was nothing more than a list of potential problems, a catalogue of miseries to be avoided, composed by people who had no experience of disability. The second was a description of a person with a personality and likes and dislikes, experiencing challenges but living a good life, nevertheless, and it was written by people with real-life experience of raising a child with Spina Bifida. The first appeared on a mainstream media website read by millions, and the second on the website of a non-profit organisation dedicated to representing models and actors with disabilities and differences.
The second problem with the newspaper article is that it is a very public, very thinly veiled justification for killing a person because they have a disability. You can argue with me till you are blue in the face about the personhood or otherwise of the unborn, but that is not the point here. The point is the attitude towards disability that is displayed and encouraged. We are told, in no uncertain terms, that the child’s life would not be worth living, that they would be better off dead than disabled.
And once you start to consider the Disabled unborn, the foetus, as unfit for life and needing to be freed from the burden of living with disability, then it is only a short distance to travel before you start to look at people actually living with disability in the same way, and say to yourself ‘What a pity their parents didn’t abort them’. In fact many Disabled people have already heard this, said to their face, online or in real life. And then what? Do we advocate euthanasia for disability?
A lot of people believe that euthanasia should be legal. They think it is the compassionate thing to do when someone is ‘suffering’. But suffering is a subjective concept, it means something slightly different to each of us, so who’s definition do we take? And voluntary euthanasia wouldn’t stay voluntary for very long.
We in the Down’s Syndrome community have a particularly acute perspective on this. The law grants women the right to terminate a pregnancy if that is what they want. It’s their ‘choice’. But there is a fine line between giving people the right to do something and imposing upon them the duty to do it – it is a line many of us have trod during our antenatal care. I, and many others, who have had a prenatal diagnosis have not just been offered a termination, but have been pressured to ‘choose’ it. We may be given falsely bleak prognoses that go far beyond the medical facts – my doctor said that having a child with Down’s would probably end my marriage. Others have been asked repeatedly whether they would like to reconsider and have a termination, even after they have explicitly stated that they are committed to continuing the pregnancy, and have asked for this to be recorded in their notes. Mothers going to hospital for induction of labour, looking forward to meeting their new baby, have been offered a termination instead. If euthanasia became legal the same thing would happen sooner or later. Not to mention what would happen to people deemed, by others in their prejudice, not to have the capacity to make decisions for themselves.
In these days when women are encouraged to ‘Shout Your Abortion’ we also need to acknowledge that there is a time and place for keeping quiet: because any discussion about termination for medical reasons –selective abortion — goes beyond the experiences, emotions and personal ethics of those who choose to terminate, and right to the heart of the negative and inaccurate public perceptions of disability which are so damaging, and which are further cemented in the public psyche by biased testimony such as this.
Now this couple’s skewed story has become part of the false, negatively-biased narrative surrounding disability. And as long as these inaccurate and dehumanising stereotypes are perpetuated then more couples will end up aborting planned and wanted pregnancies because they imagine that they have no other option, that their child’s life will not be worth living, because they imagine that they are releasing the child, and themselves, from a life of suffering when in fact none of that is true. The couple speak of their choice as ‘the ethical thing to do’. Was it ethical to publicly share an inaccurate and twisted view of someone else’s reality in order to justify to themselves what they had done? Is it ethical of the media to publish stories like this, given that the subtext they carry encourages misunderstanding and discrimination, not to mention the eugenic removal of Disabled people from society?
No. Neither party has behaved ethically. They have behaved in a way that is profoundly biased and discriminatory.
For as long as the negative and dehumanising stereotypes peddled in articles like this persist, people living with disability will be viewed as a problem: society will continue to perceive disabled people as THE problem, instead of realising that the fault lies with the way that we, as a society, wilfully exclude them from public life by failing to consider them, or to accommodate their needs when we easily could, unnecessarily throwing up barriers to their inclusion. And as long as society continues to view Disabled people in this way, they will be ignored, mocked, vilified, neglected, deprived of their rights, and sometimes even killed, with impunity.
Selective abortion (where abortion is carried out because of some characteristic identified in the individual foetus, rather than because of the mother’s circumstances) is not ‘the best thing’, it is not merciful, it is not ethical. It is the ultimate act of  discrimination. It is eugenics. It should definitely never be ‘shouted’ publicly, as it has been here.
That said, I do feel sorry for this couple. I feel sorry that, after undergoing several rounds of IVF, they have been robbed of their much-wanted child by a society that has brainwashed them into thinking that it is better to be dead than to be disabled.
It’s time to #flipthenarrative.

4 thoughts on “We Must #flipthenarrative.

  1. baxterluke

    As ever, an incredibly moving piece Kerry, thank you. Your writing is so good but the research you include makes the points you make all the more powerful. Yours is a voice that needs to be heard more widely. We have got even more suffering to put up with today what with the schools being closed! Ohhh no cuddles! Poor me… Though actually after a few hours of Bing Bunny, I might choose to terminate myself.

    Liked by 1 person

    Reply
    1. kerryfender Post author

      Once again, Thank you, Luke.
      Freddie’s school isn’t closed. I’ve got to suffer their bingo afternoon (a ‘numbers day’ fundraiser for the NSPCC)

      Like

      Reply
    1. kerryfender Post author

      Thank you. I think it needed to be said, though I know how a lot of people will characterise me for saying it, but I can live with that xx

      Like

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