I’m not really sure what the point is – yes, it’s a good idea to teach girls that there are some difficult realities they will may face, but it’s also crucially important in my view to teach girls to explore and own their sexuality, have orgasms, seek sexual pleasure on their own terms.
Why do I even bother? Yes, there are problems with how men are portrayed in advertising. But I can’t even begin to address that, given the rest of this comment. First of all go here, then here, then try setting aside your male privilege and putting yourself in someone else’s shoes for five minutes.
Victoria Al-Sharqi, author of the article, replies
Thank you for your response to my article on The F-word. There is one paragraph in particular that stood out for me:
And while already living disabled people directly don’t suffer from someone somewhere aborting a disabled foetus, those women (who, unlike foetuses, are aware of what’s going on with their life) who will be forced into motherhood against their will – if we have the legislation Victoria wants us to have – will feel the pain every day of their lives DIRECTLY. A tiny difference, eh?”
Already living disabled people do suffer from ‘someone somewhere’ aborting a disabled foetus, as whenever such a termination takes place a particular set of harmful and negative ideas about disability is reinforced. The purpose of my article was not to compare myself to a foetus, or to argue that the rights of a foetus ought to take precedence over the rights of an adult woman, but to highlight the ways in which selective abortion affects disabled people. And it affects us in some very tangible ways. Current attitudes towards disability have led to a preoccupation with cures and prenatal testing, rather than a willingness to accept disabled people as we are and to provide support that respects our dignity and enhances our independence. When people look at your life, decide that certain aspects of it are miserable (usually without consulting you), and use these things as reasons for selective abortion, they are saying that your life isn’t worth living as it is, and that your existence is all about making the best of a bad job. Disabled people come up against this attitude in all areas of life: in education, in employment, in medical care, in relationships. The existence of selective abortion is not the sole cause of this attitude, but it is a contributor, and it is incompatible with disability rights.
“I wish grown-up people stop comparing themselves to foetuses, it doesn’t do any credit to their perceived sense of self-worth!”
As I have pointed out, I’m not the one making the comparison. It is grown people who look at the ultrasound scan, then look at me (or rather, dissect my symptoms – I don’t think they actually look at me as a person at all) and say: “This is what could happen if this pregnancy is carried to term.” I am a reason for selective abortion. Whenever this topic is raised in the press, I inevitably come across highly emotive descriptions of my symptoms and difficulties, calculated to evoke pity and/or revulsion in the reader. The supposedly private choice to have a termination on grounds of disability isn’t private at all, not when intimate aspects of disabled people’s lives are taken without our consent and reinterpreted as scenes from a tragedy.
The worrying thing is that people are so used to seeing selective abortion as a private choice that affects nobody but the woman in question that they can’t seem to comprehend the wider ramifications that I tried to outline in my article. Perhaps this is because people don’t feel those ramifications if they are cushioned by able-bodied privilege, as I can’t see any other explanation for the belief that the existence of selective abortion has no bearing on the lives of disabled people whatsoever.
I don’t believe that anybody should be forced into motherhood. But I don’t believe that disabled people should be written off as tragedies and used as illustrative material to support a stranger’s ‘private choice’ either, not when such choices contribute to the disabling barriers that they face in society every day. This is a dilemma that I have grappled with for years, and there are no easy answers. I don’t claim to offer instant solutions. I do, however, acknowledge that discussion and debate on this topic is necessary and long overdue – although I doubt that meaningful discussion will be able to take place until people realise that the arguments against selective abortion amount to much more than ‘woman versus foetus’.
Victoria Al-Sharqi, author of the article, replies
While I was genuinely interested to read your e-mail about my article (its purpose, after all, was to promote debate), I think that you have missed the point of most of what I was trying to say, and that your feedback addresses the article that you expected to read rather than the one I actually wrote. For example, you say that my use of the term pro-abortion reveals ‘my anti-choice stance’. But that phrase doesn’t appear in my article anywhere, and for good reason – like you, I don’t believe that anybody is pro-abortion. I have written about ‘proponents of selective abortion’, yes, because there are people (Minette Marrin amongst them) who believe that women have a moral and social duty to abort if the foetus has impairments. That is a separate issue.
You write that I assume that women who abort on grounds of disability are being ‘silly’ and ‘selfish’. I think no such thing, and have never written anything to that effect. I do think that they are prejudiced, but this is not intended as a personal slight on their decision-making capabilities. It is an indictment of the prevailing social attitudes towards disability. Prejudicial notions and stereotypes about disability are ingrained in society’s fabric, and ingrained so deeply that most people do not even realise they exist unless they have to bear the brunt of them. And that is what my article is about: how damaging and often dehumanising attitudes lead to selective abortion, and how the existence of selective abortion reinforces the negative ways in which disabled people are perceived and treated within society.
I wrote it as a disabled woman who feels those effects. You seem to have missed the part of my article where I state that I am classed as severely disabled, and you then go on to employ one of the silencing techniques that I condemn in my article: “Have you actually considered how grindingly difficult life can be with a severely disabled child? I mean severely disabled.” You are implying that my own disabilities are far too mild for me to have any understanding of such a life, thereby disqualifying me from writing about the issue. Then you go on to define what severe disability really is. (It takes a non-disabled person to be able to define it, of course.)
“I am talking about children who will never speak or respond in any way, never walk, never even sit up; who smear faeces around the walls, sleep for 2 hours max at a time, rampage around the house at 3am, attack family members. That’s the reality.”
According to my assessment reports I have the mental age of a seven-year-old. My performance IQ is 54. I poo myself on a regular basis. Until mid-adolescence, I did smear my faeces. I sleep as and when I can, which is rarely. I can’t be left unsupervised, partly because I’m prone to outbursts of the sort you describe. (Incidentally, such ‘attacks’ are usually my efforts to communicate extreme pain and distress when I have no way of articulating it orally and am unable to control my body. And along with a lot of people with my cognitive impairments, I find many seemingly everyday things acutely painful and disturbing, which is why outbursts are frequent.) My arms are covered in scars from my biting compulsion. I am a part of the reality.
I’m not saying that “disabilities are great, or do not exist”. I’m saying that I would like people to stop hijacking my everyday reality and using it as a justification for selective abortion, when the mere existence of selective abortion means that people are encouraged to see those of us with disabilities as objects of pity or tragedies who would be better off if we weren’t around – with some unfortunate consequences. This is seen most clearly when it comes to service provision.
You then go on to say, “You seem to object to ‘labels’ so I can only assume that you object to terminations for even the most profound disabilities.” Actually, I don’t object to diagnostic labels. They can be very helpful. I do object to the way that labels are distorted and misapplied. There are no clear boundaries between what constitutes ‘mild’, ‘moderate’, or ‘severe’ disability, as so much depends on the situation – and on the eye of the beholder. Regarding situation, I don’t consider myself to be severely disabled when I’m writing, thanks to the assistive technology that allows me to express myself. Going to the supermarket or using a public toilet is another question, as neither of those places are properly accessible to me and using them independently would require skills that I don’t possess. However, there are adaptations that could be put in place to make these places more accessible and significantly reduce the difficulties that I experience. That is what I mean when I talk about the level of disability being an interaction between the impairment and the situation.
Regarding other people’s perceptions, please look back to your own definition of what it means to be severely disabled. Others would disagree with you and state that your definition is too strict, that they themselves would terminate a pregnancy if the foetus were shown to have cleft palate or another impairment that you consider ‘minor’. I have friends who have tried to compliment me by saying that when they first met me they were unnerved, but now they “don’t consider me to be seriously disabled at all”. What they mean is that the sight of me made them uncomfortable at first, but that they’re desensitised now – so desensitised that they have changed their personal definitions of serious disability. Yet the nature of my impairment hasn’t changed at all.
This is the kind of labelling that I condemn so roundly in my article. It stems from the degree of fear that people experience when they think about a particular condition. It exists for other people’s convenience, as is evidenced by the way a doctor trying to have a child removed from its parents’ care might emphasise the severity of the child’s disability while the funding bodies that are meant to be providing monetary support will be keen to bracket the child as ‘moderately’ or even ‘mildly’ disabled. The arguments for selective abortion hinge on the judgements that strangers make about disabled lives, the assumptions that they carry about our labels, and the definitions that they impose on us. This is dehumanising. The fact that I acknowledge this and refuse to allow my everyday experiences to be co-opted and turned into a story of misery and despair does not make me anti-choice.
“I mean, if I fall and break my leg going home tonight, I may as well not go to hospital and get it set, because who cares about the pain and lack of mobility…it’s all social, isn’t it? Damn doctors, labelling me!”
This is a complete misrepresentation of the social model of disability. No disability rights advocate has ever claimed that disabled people should reject medical treatment or support. However, we do ask that the treatment and support that we receive be based on the needs that we actually have, and not the needs that other people perceive us to have. When I was assigned a mental age of seven, I was locked into limbo. The professionals involved in my care decided that I couldn’t progress beyond this point, and that the best option would be for me to move into a residential home. That is not the kind of help I needed, but the kind of help that they decided that I ought to have – based on a set of tests that aren’t reflective of how I think or what I think, but on how closely my thought processes tesselate with those of a ‘typical’ person. The equivalent would be your broken-legged individual being sent to the operating theatre to have the offending limb amputated instead of to the X-ray department for an X-ray and some plaster of Paris.
I work in a college for people with learning disabilities, primarily Down’s Syndrome, which is why I find your comments regarding manipulation and mental capacity particularly disturbing. The argument that a certain group of people ‘lacks the mental capacity’ to think something or feel something is an argument that has been used to justify some horrific events in the past. Anya Souza is an activist with Down’s Syndrome who has spoken out against prenatal testing on numerous occasions. Her views have been dismissed again and again, for no other reason that she can speak – and is therefore not qualified to talk. The fact that she talks at all is manipulative and disrespectful towards those people with Down’s Syndrome who can’t talk. She doesn’t represent their interests. Other disabled rights activists don’t represent their interests. Only non-disabled professionals and carers, together with the odd journalist and politican, are truly qualified to speak about Down’s Syndrome without being ‘manipulative’. I see that you defend Minette Marrin, who writes so emotively about the devastation that ‘damaged’ children inflict on their imprisoned families and who accuses women who deliberately give birth to children with Down’s of placing a burden on society. Presumably she isn’t being manipulative at all.
It is not manipulative to ask that people be treated with respect. It is not manipulative to ask that disabled people be included in conversations that up till now have been held about us, without us. It is not manipulative to ask that people try and acclimatise themselves to the notion that nonverbal individuals – yes, even those with learning disabilities – might have other ways of communicating, and that excluding them from discussion by either saying that they lack the capacity to participate or that they aren’t ‘representative’ of other people with their disabilities is just an excuse, and a prime example of able-bodied privilege to boot. Because it’s always able-bodied, neurotypical people who decide who is representative and who is capable.
“And WOMEN bear the brunt of it, women are expected to be noble, selfless carers, sacrificing their lives to the child, changing the nappies of their offspring of 20, 25, 30, 40 years old…never having that offspring so much as look them in the eye.”
Disability rights advocates don’t expect nobility or selflessness of anyone. As I wrote in my article, the idea that being disabled or caring for a disabled person requires heroism or sainthood is just another damaging myth, again the product of people’s fear. Your graphic snapshot of a woman having to change her 40-year-old’s nappy is a particularly common image that is brought out in the debate on selective abortion. Now, I wear nappies, along with millions of other adults. They are tools in the same way that sanitary pads are tools. There is nothing shameful about needing them. They don’t reduce you to perpetual babyhood. All they mean is that you have bowel problems or difficulties with recognising certain neurological signals.
And if people could come to accept this, and start providing practical help to disabled people and their parents instead of shuffling uncomfortably and looking the other way, the women you speak of might not be in such a difficult position. I recognise the truth of what you say in the paragraph above, but I don’t see disability as the cause of it. When I think of the cause, I think of the strangers who have stopped my mum in the street to congratulate her on her bravery in horrified tones. (It did not stop with strangers – the family’s thinly disguised uncertainty and revulsion left my parents on an island.) I think of the Minette Marrins of this world, who reinforce the notion that disability is such a dreadful fate that anyone with any sense should run away. I think of the politicans who state sorrowfully that severely disabled children are very expensive to provide for and that their parents are financially unable to cope. (The government can afford to replace Trident, but it can’t afford decent respite centres and an increase on Carer’s Allowance? Does the problem lie with severe disability or with mistaken priorities?)
If there weren’t such a stigma surrounding disability, and if people actually believed that respite, special education and assistive technology were more deserving of funds than the development of prenatal tests, the distressing situations that you outline might never arise. Unfortunately, I don’t see how the continued promotion of selective abortion as the de facto option is going to do anything to reduce that stigma, or to convince general public and government that disabled lives are worth investing in.
“You sound like anti-choicers whining ‘but Mozart/ Einstein/ whoever wouldn’t exist if his mother had had an abortion!’ Well, no, he wouldn’t. Someone else would do the great things he did, make discoveries, write music; or close enough; or maybe not, but the world would go on turning. The thing is that ghosts do not make an argument. Hypothetical babies with disabilities who will not be born if women have terminations do not exist and do not have rights.”
I’ve never made the Einstein argument, so I’m not going to reply to it. In fact, when I write about disability I deliberately keep away from geniuses – I write about ordinary disabled types, who, like their ordinary non-disabled counteparts, are never going to be the next big thing in physics or compose a brilliant concerto. Once again you’re rebutting the points that you think I’ve made rather than the ones that I have actually raised. And once again, my article isn’t about the rights of the foetus. It is about the tangible impact that selective abortion has on the lives of disabled people who are already on the planet. And as this article is about disabled people, I did not write much about the women involved. This doesn’t mean that I haven’t considered them; it means that the arguments in favour of selective abortion have been heard thousands of times before, whereas the voices of disabled people have not. Your objections remind me of the men who start squawking about the disadvantages and difficulties that men face and accusing feminists of being sexist if somebody has the temerity to devote a whole article to women’s issues.
The learning disability charity Mencap has been running a campaign called ‘Death by Indifference’, in which it highlights the stories of people with learning disabilities who have died in hospital as a result of deliberate medical neglect. One such story is that of nine-year-old Daisy, who was admitted with a tooth infection. She developed septaecemia and died. Later her parents discovered that the doctors had known that Daisy was dying. They had deprived her of water for hours at a stretch, even though dehydration is fatal in cases of septaecemia. And when her parents asked why this had been permitted to happen, the response was that the hospital had “misjudged Daisy’s quality of life”.
In other words, they had taken the unilateral decision that Daisy would be better off dead. They allowed a simple tooth infection to become the cause of her death. One doctor, comforting Daisy’s grieving mother, said, “It’s almost like losing a child, isn’t it?” Because of course Daisy was not really a child. She was a justification for selective abortion. When people talk about the misery experienced by non-speaking learning disabled children, they describe Daisy’s symptoms. The chilling question is this: if doctors present termination as an option in the case a foetus that has the potential to grow into another Daisy, where is the guarantee that an actual Daisy will be treated with respect when she is admitted to hospital for her tooth complaint? There is no such guarantee.
Daisy’s death was the result of the ‘quality of life’ mentality that fuels selective abortion. That mentality affects disabled people in numerous other ways, but this is one of the worst manifestations of it that I have ever come across. I wrote my article with people like Daisy in mind, people who have no guarantee that they will be seen as fully human. (I am one of them; somebody once asked me I felt upset at not being ‘whole’… My denial was taken as a sign that I am too disabled to know that I am disabled.)
You say that once disabled people are born, they should receive all the support and assistance that they need. Unfortunately, so long as selective abortion and the way of thinking that underpins it exist, I don’t think that this will be possible.
You state that I am not invisible, yet you have ignored or distorted most of what I wrote originally – including the fact that I am disabled, which you leave until the last line of your e-mail. Then you suggest that instead of writing about selective abortion, I put my supposed visibility to good use and start educating prospective parents about my conditions. Apparently I am only visible in certain lights, such as when I am prepared to be a self-narrating zoo exhibit for the benefit of certain other women. If I want to write about something different, such as selective abortion and the impact that it has on disabled people, I’m no longer worthy of being listened to. I am ‘anti-choice’.. I am visible only so long as I’m saying what people would like to hear, and sticking to the topics that are acceptable to you.
Unfortunately, at the moment I would rather speak about what is unacceptable to me.
Thanks for writing in. I just had to reply to the point you make about hobbies for girls and boys. Yes, most parents would probably rather have a daughter who was into karate or football than a son who was into ballet or horseriding. It’s seen as somehow understandable for women to want to emulate men, but almost freakishly unnatural for men to want to emulate women. Tomboys are tolerated, even celebrated; ‘sissies’ are not. As long as we keep elevating the traditionally masculine, whilst sidelining the feminine, society will remain an inequal and, dare I say it, rather dull place to live.
Thank you also for sharing your own experience. Unfortunately, I do not think that the lack of privacy afforded to you and myself, is rare. I think that it is country wide. There really should be better ways for medical facilities to organise their space so that people who wish to discuss such issues can do so with confidentiality. Private reception rooms, perhaps?
I will give you another example I have found of lack of privacy. A couple of years ago, I had to go to my local STI clinic for checks. There are seperate waiting rooms for women and men… however, the women’s is upstairs and you have to walk through the men’s to get to it! Imagine how embarrasing that must be for some women. And also, I imagine, quite intimidating to have lots of men staring at you. Imagine if a woman had previously been raped and then had to walk through a room full of men before reaching the women’s waiting room!
As you can imagine, I mentioned this to the staff who looked quite surprised that I would have a problem with this. To date, I believe it has not been changed. So thank you very much for your response; I have heard many similar stories.
Karen James, author of the article, replies
You make some good points and there are some I would like to address. First, I know you were unsure about the type of facility I went to to get the morning-after pill. Well, it was a general NHS walk-in centre not a family planning one. So there were people there with a variety of physical ailments. It was a weekend so I couldn’t go to my usual GP.
Second, I have absolutely no guilt or shame about the sex I had. This was never really an issue of sex. It was an issue of privacy. Every woman has the right to collect the morning-after pill and enjoy confidentiality and privacy.
Third, the nurse you mentioned did not act in a confidential manner, hence why people in the waiting room worked out why I was there. The nurse in question has since apologised for this breach and is in totalk agreement with my issues.
Fourthly, yes, you are correct that I should not have felt guilty when people figured out (and commented rudely) what I was there for. But you try not feeling totally ashamed in front of 40 people staring at you!
I am ganerally an extremely confident women who loves sex and my sexuality, but I have feelings too. And those people should not have had a clue why I was at the walk-in centre. The fact that they were given this knowledge is a clear breach of NHS rules – and my privacy.
My reactions to what happened are NOT the issue (and I reacted in a very normal way to being humiliated). And to be perfectly frank, the fact that you focus on my reactions sounds more like victim-blaming. The issue was always the totally inappropraite way that the NHS – and wider society – judges women and sexuality.