On Virginia Ironside, suffering and pillows

This morning, I witnessed an extraordinary exchange on the BBC morning discussion programme, Sunday Morning Live (in the UK, you can watch it on iPlayer here), a somewhat cheaply produced affair in which various guests appear on a webcam (rather than in a studio with a decent camera which updates their image more than twice a second), in which the Independent’s agony aunt, Virginia Ironside, delivered a polemic in which she declared that life itself is not a gift and that aborting a baby might be kinder and more moral than bringing into the world an unwanted or severely disabled baby. The discussion also included the Rev Joanna Jepson, who brought a legal challenge to the abortion of a fetus on the grounds of its having a cleft palate (she had reconstructive surgery on her own jaw in her teens) and Clair Lewis, the Manchester-based disability and gay rights activist with whom I previously had a debate ([1], [2]) over whether Kay Gilderdale should have been sent to jail (you can read her announcement here and her write-up of the exchange here). Ironside came out with the extraordinary claim that she would be the first to put a pillow in the face of a child she thought was in agony. While the idea of aborting a potentially severely disabled fetus is not exactly new (unfortunately), this statement really made my jaw drop. (More: Secondhand Smoke, Tara Lynn Thompson, Clair Lewis again, Disability Voices.)

But first: the first third of the programme was on new laws the government is proposing which would make it a requirement of anyone marrying a British citizen and intending to settle in the UK to have some proficiency in English before they can get a visa. Of course, this only applies to non-EU foreigners, so if you marry a Portuguese person who only speaks Portuguese, they don’t even need a marriage visa, but if you marry a Brazilian who only speaks Portuguese, they do, and won’t get one (unless, of course, they are entitled to any EU citizenship due to recent European ancestry — not necessarily Portuguese, I might add). Quite why Portuguese is any more valid in the UK coming from someone from Lisbon than from someone from São Paulo is a mystery, but it’s not Portuguese-speakers they are targeting, of course; it’s those who speak Urdu or Hindi or Bengali — the supposed hordes of Pakistanis marrying brides from the village back home, but of course, everyone gets caught up in it.

The programme featured a young woman who had married a man in Syria but was unable to bring him to the UK as they could not guarantee that they could support him, and feared that the language barrier could be used against him as well. Several panellists brought up the inconsistency of the government claiming to be pro-marriage while implementing immigration laws which split up married couples. I do feel some irritation, as I’ve said before, when I hear white people complain that laws they think should only apply to others turn out to apply to them as well. Still, I don’t see why the laws cannot be formed so that they specifically target British Asians who want to marry semi-literate, non-English-speaking brides from back home in preference to people from their own community, and make sure that they don’t impact anyone else.

Back to Virginia Ironside and Clair Lewis, though.

Virginia Ironside gave her “Sunday Stand” from “a crowded corner of west London”, namely under a railway bridge in Shepherds Bush, and quite why she had to do it there and in an anonymous back garden rather than in a TV studio is a mystery. At least they used a proper camera. She claimed at the beginning:

“If a baby’s going to be severely disabled or totally unwanted, surely an abortion is the act of a loving mother. Life is only a gift if the person living it feels cherished, loved and wanted and sadly, the world is full of unwanted children. To go ahead and have a baby, knowing that you can’t give it some kind of stable upbringing seems to me to be cruel.

“There is an argument that parents will love a severely disabled child and that a fatherless child will get all the love it needs from its mother, and some argue that the parents of a disadvantaged child will become better people. We all love the feeling of doing good, but to create a child who may well be going to suffer all its life is very, very unfair and no good parent, and no good mother, would want to impose that suffering on a child.”

Of course, where a baby is unwanted and where one is likely to be severely disabled are two totally different situations, but the problem with allowing abortion across the board is that it could easily be used to get rid of babies that are found to be disabled, much as it is used to eliminate girl babies in some regions of the world. Many people are uneasy about using abortion to get rid of severely disabled children, quite rightly, but will not go as far as to accept that revising the UK’s liberal abortion laws may be necessary to make this behaviour more difficult. The kinds of conditions one can get an abortion for are not limited to the most extreme; they have included a cleft palate, as stated earlier, but also include physical disabilities that leave the child’s intellect intact, like spina bifida. The American philosopher Peter Singer has specifically mentioned spina bifida as a condition in which it was better that the children affected did not survive, and that doctors he had encountered in Australia had left them untreated such that they died before they were six months old. As William Peace points out:

The most severe form of Spina Bifida, Myelomeningocele, results in paralysis and life long urinary and bowel dysfunction. I will readily agree this is less than ideal but is it reason to end a child’s life? I think not and the National Institute of Neurological Disorders and Strokes points out that most people with Spina Bifida “are of normal intelligence” whose physical problems range from severe to minor. Essentially doctors, nurses, and parents are deciding to end the life of a child who is cognitively intact. Again, why? Why end a child life who has Spina Bifida? According to Singer, to survive such a child would need “multiple operations, would be severely disabled in various ways”. I do not have Spina Bifida. However, I did have a rare neurological condition [hydromyelia] that caused great pain and paralysis. I had dozens of spinal taps as a child, three massive spinal surgeries, and spent months on end in the hospital. This was in the late 1960s and 1970s when pediatric neurology was primitive at best. Yet no one suggested I should die. In fact, I am not be able to move well over half of my body, struggle to control my bowels and bladder but do not consider myself “severely disabled”. Long ago when I characterized myself as such my mother hissed at me: “You can use your mind, the most important part of your body, consider yourself lucky”. My mother was right and as a result I am alive. I have a family, a career and lead a happy life. If Singer were my parent I might be dead.

I should add that I have had quite a few friends over the years that have various disabilities, including blindness, quadriplegia (both, in one case), muscular dystrophy and M.E. (various levels of severity). It disturbs me to hear someone presume that they can decide whether these people’s lives are worth living, when they obviously think they are. Even if not, I am sure they would not want others to make up their mind for them, so to speak; even Lynn Gilderdale, who had severe M.E. and eventually chose to end her own life, was profoundly shocked when another sufferer in the UK, Sophia Mirza, died because of mistreatment:

I’m so sorry that reading about Sofia in my journal upset u so much, but I completely understand why it’s had such a big impact on u - it’s been a huge shock 4 me, too.

I understand all the “implications” hearing about the death of a severe M.E. sufferer has 4 other severely affected ppl like us….it’s all too real, isn’t it? Too possible….too near 2 our own situation….too likely that it could happen 2 us. This may sound awful (or u might feel the same), but altho I obv hate knowing that there are so many severely affected PWME (People With M.E.) - & I’d never belittle someone’s experience, or suffering - I have 2 admit that I don’t often get extremely upset when I read articles about PWME, because, 2 be honest (& I hope this doesn’t sound patronising), I’ve probably been thru what they’ve been thru & more (does that sound bad? I don’t mean it 2).

However, with Sofia it’s different - she’s gone that 1 step further, if that makes sense? And it’s a step that I’ve been SO close 2 (forcibly) taking SO many times in the past, & 1 that I could so easily be pushed over at anytime…..And I can’t help but think, if it happened 2 Sofia, what’s 2 stop it from happening 2 me?

Ironside put it to Rev Jepson, in the panel discussion, that she regarded all life as sacred, while she herself believed that life itself was only a gift if the person living it had some sense of security or being loved, and “to be brought up by people who hate you … is a curse”, while Jepson held that it was very dangerous to make the value of life contingent on someone else loving you. Kiran Bali, a “Hindu leader”, put her faith’s perspective that life begins at conception where “soul and matter” combine, and that abortion can only be justified where either the mother’s life is in danger or in cases of rape. Ironside also said she had been to eastern Europe and seen orphanages full of severely disabled children, and that one would not wish that life on one’s very worst enemy. The problem, of course, is that these situations arose either because governments harassed their populations into having more children than they wanted (as in Romania) and because those societies did not value the lives of disabled children. That, of course, has nothing to do with British attitudes to abortion or disability, rather it has to do with local attitudes, and our policy will have no effect on that, but really the change there has to come in terms of compassion and respect for those affected in those countries, not of easier access to abortion.

To be honest, I find Jepson a weak defender of disabled children in this matter; she seems incapable of coming out and saying that getting rid of a baby because it’s disabled is wrong, and all the more so if the baby is simply imperfect and has an easily-corrected deformity. Even after she launched the (unsuccessful) attempt to have doctors prosecuted for aborting a baby with a cleft palate, in interviews around the time she called for the law to be implemented properly (or something similar), rather than specifically condemning the abortion of babies for such trivial impairments and, maybe, calling for the law to be strengthened, as it was clearly not strong enough as nobody was prosecuted.

I also find Lewis’s case against abortion on these grounds problematic:

I do not have a view about abortions per say because I believe it is personal choice - I do not claim to know ‘The Correct’ date by which all terminations should be done. That is not my subject area, my subject area is equality and human rights. I do think the laws should be equal for all humans who are born here. If it’s ok til 24 weeks then it should be ok for everyone. If the law decides any time is ok, any time should be ok for everyone.

This issue should not be blamed on women, nor should women be hid behind by eugenicists. It is experimental science, not women which has demanded this. Women’s right to choose is about the right to choose whether stay pregnant or not, not about the right to commit social eugenics under social pressure (and then take the blame).

In her write-up piece today, she alleges that “those who choose to terminate usually do so under a medical and social pressure which is almost completely one sided and unfair.. it wrongly blames women for the neglect of people in society by making them responsible for the fix”. Like a lot of modern feminism, this absolves women of the responsibility they have for the decisions they make: they do not have to bend to a doctor’s suggestion that they get rid of a fetus, a doctor’s authority is nothing like what it was, and neither will society condemn them for bringing home a disabled child. There was a time when they would have been encouraged to leave a baby with Down’s Syndrome, for example, in an institution and go and have a normal life, but that was a long time ago, in most places. If a woman (or a couple) decides to get rid of a child because of a disability, that is their choice and their responsibility.

Towards the end of the discussion, Ironside claimed, “if I were the mother of a suffering child, I mean a deeply suffering child, I would be the first to want to put a pillow over its face”, and the shock of hearing this clearly registered on Rev Jepson’s face, and when challenged by the host, she said she thought any good mother would do the same. This is clearly a preposterous suggestion, and if the majority of mothers did that to their children if they were “deeply suffering”, we would hear about it far more. From my research into M.E., I’ve not heard of even one mother who, faced with a child who is suffering with extremely severe pain and sickness, cannot tolerate light or sound or bear to be touched, and cannot speak or swallow or move, sometimes for many months or years, has put a pillow over the child’s face. Not one. (No, not Kay Gilderdale either.) It’s actually a huge slur on mothers in general, actually. Many will fight for their disabled or severely ill children for years.

However, as many disabled people are painfully aware, many people will actually condone or seek to find excuses for a parent who does murder their severely disabled child, such as that the child was in pain or that the parent was under stress, when in some well-documented cases, the child was not suffering (or their suffering could be easily remedied) and the murdered child did not even live with the parent. At FWD/Forward, Anna details the litany of excuses made for the murder in Canada in 1993 of Tracy Latimer, who had cerebral palsy, by her father. She also mentioned that there had been a string of other killings of children with various severe disabilities by their parents or carers (in Canada alone), who often received lenient sentences, and a commenter noted that organisations that represented parents of autistics often jumped to the parents’ defence. This is of huge concern to actual autistic people.

An awful lot of research into various conditions is geared towards finding a pre-natal test so as to offer women the choice of aborting the pregnancy, rather than on curing the illness itself. When I wrote here in June that, to some autism advocates, “the idea that you might not want kids to be autistic is kind of like saying you want autistic people strangled at birth”, one woman with autism responded that this was exactly what it was, as much of the research was intended to facilitate abortion. The same is true, according to the same Anna at FWD/Forward, of much research into muscular dystrophy (and much money is being spent on this that could be spent on improving the lives of those already living with it). Abortion is a false cure, usually sparing the parents the difficulty and, maybe, the heartbreak of raising, and possibly outliving, a severely disabled child. Whoever they bring into the world to replace that child if they choose a termination is someone else entirely, their brother or sister, not a cured version of that child.

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