This is not eugenics — it is one mum’s tough decision
The slating of a British mother for asking doctors to give her disabled daughter a hysterectomy exposes today's deep distrust of parents.
If a politician were to announce that all disabled girls should have their wombs removed in adolescence in order to make them easier to care for, I would object: loudly, passionately, and endlessly. But when a mother asks for a hysterectomy to be performed on her own daughter, with a particular level of a particular disability, it is a completely different matter.
This is not a eugenic policy, a biologically determined crusade to improve the human race through breeding out less able individuals. It is a tough decision made by a mother about how best she can care for the daughter she loves. We should draw this distinction, and end the story there.
Unfortunately, that would require a culture in which parents were trusted and their privacy was respected – which is not what we have now. So on 7 October, the UK Sunday Times reported that 45-year-old Alison Thorpe, a mother based in Essex, England, has asked doctors to give her 15-year-old daughter a hysterectomy to stop her from starting menstruation (1). Katie Thorpe has a severe form of cerebral palsy (brain damage). She cannot walk or talk; she is doubly incontinent; and she has the mental age of an 18-month-old (2). Her mother argues that periods would confuse her and cause her indignity. ‘She is never going to develop and be a normal adult with the expectations of getting married and having children’, says Mrs Thorpe. ‘She is my daughter and of course there are doubts. But I feel the short-term inconvenience she will go through is nothing compared to the enormous long-term gain.’ (3)
Now the story has been spread across the UK media, which has been quick to draw parallels with the controversial American case of Ashley X that erupted earlier this year. Ashley was born in 1997 with a severe brain impairment that causes developmental delay, prevents her from sitting up, walking or talking; she also has to be fed through a tube. In 2004, Ashley’s parents gave her a series of treatments, including a hysterectomy, to prevent her growing and reaching puberty: they argued that this would enable them to care for their ‘Pillow Angel’ in the best way, as by keeping her childlike in size they would be able to cuddle her, move her more easily, and more easily give her the physical attention and affection that she needs.
Alison Thorpe with her daughter
Predictably, the international media and disability organisations jumped all over this story, causing a debate to rage over the rights and wrongs of parents giving their disabled child surgery for their own ‘convenience’. (By way of fightback, Ashley’s parents run an extensive blog dedicated to arguing their position (4).) Predictably, the ‘debate’ missed the central point – about parents pragmatically finding a way of caring for a much-loved, but forever dependent, child – instead pointing suspicion at the parents’ motivations and presuming that the world at large had to know better than they what was best for their child.
The same is true in this case. Mrs Thorpe, a mother-of-two who is separated from Katie’s father, has spent 15 years giving Katie the round-the-clock care that she needs: cleaning, dressing and feeding her. She has help from a carer for a measly ‘three to four hours each day’ (2). Katie’s mother knows her daughter ‘better than anyone else on Earth’, loves her dearly, and she – along with the doctor who has agreed to perform the hysterectomy – is best placed to make the decision about whether this operation would improve Katie’s quality of life or damage it. Moreover, as the person who cares for Katie day in, day out, Mrs Thorpe is entitled to think about her own needs – how she is best able to care for Katie, and what might make this more difficult. She is worried that periods will cause discomfort and mood swings, which will be unpleasant for Katie and make her mother’s caring role more onerous.
What Mrs Thorpe is not suggesting, as she continually emphasises, is that ‘there should be a blanket policy of hysterectomies for children like Katie’. She is suggesting the operation for her daughter, for reasons particular to her family. You may or may not agree with Mrs Thorpe’s decision, but we should recognise that she is the only person with a moral right to make the decision in this case.
To listen to the response of disability organisations, you would think Mrs Thorpe was manning a train to Auschwitz filled with millions of ‘children like Katie’. Andy Rickell, executive director of the disabled charity Scope, said: ‘It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie’s best interests. This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people’s human and reproductive rights.’ He added: ‘Scope is concerned that doctors are supporting parents in this case. If this enforced sterilisation is approved it will have disturbing implications for young disabled girls across Britain.’ (5)
Simone Aspis, of the UK’s Disabled People’s Council, went even further, condemning the operation as ‘unacceptable’ when Katie could avoid menstruation by going on the Pill, and arguing: ‘Katie, like any other non-disabled teenager, has the right to grow up with her body intact, and where she can have the same choice as anyone else to give birth to her own children. We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.’ (6)
Coming from organisations that purportedly support disabled people and their families, these comments are frankly despicable. Katie’s mother stands accused of not knowing (or caring) what is in her daughter’s ‘best interests’; of abusing her human rights; and of setting in motion a eugenic policy across the UK. Meanwhile, these organisations – which are not made up of doctors, let alone specialist consultants – think nothing of dismissing the proposed hysterectomy as ‘not medically necessary’, and proposing their own clinical alternatives, such as forcing a small pill down a young woman’s throat every day of her life. Who do Scope and the UK Disabled People’s Council think they are, to get on their high horse about a mother who is simply trying to raise her daughter in the way she thinks best?
The reaction of the disability lobby to this story says much about the way in which the priorities of the disability issue have become warped in recent decades. Debates about disability focus increasingly on issues such as images of disabled people, disabled rights and human rights, empowerment and self-esteem – all of which implies that disability exists in the collective mind rather than as a physical fact, and that the problems facing disabled people could be resolved if we all just pretended that they were not really disabled at all. But as disabled people, their families and carers know, disability is something very real, which causes a host of practical problems.
Not being able to walk, having developmental delays, not being able to feed oneself, never being continent – these are practical problems with which society should help disabled people and their families cope. And British society, for all its regulation over disabled rights and lobbying for greater empowerment and positive imagery of disabled people, seems to engage with these practical problems pretty badly. Disability really is one of those issues where talk is cheap. And the more fine rhetoric that flies around, the more families are left to fight over scarce resources and cope with a heavy burden of care with little in the way of practical help.
It strikes me that the most shocking thing about the Katie Thorpe case is that she has a carer for only a few hours a day; her mother knows that, until the end of Katie’s life, the physically taxing and emotionally exhausting work of caring for Katie will rest squarely on her shoulders. One might think that the disability lobby would have something to say about that – instead, they imply that her mum is a Nazi. With friends like those.…
Of course, as the UK Disabled People’s Council says, many disabled people ‘give birth to their children and are great parents’. But that is an argument for why the state should not routinely sterilise disabled people; an argument why, as Alison Thorpe very clearly puts it, decisions such as these should be made by parents, according to the circumstances of their lives and the level of their child’s disability. And of course, the issues raised by Katie Thorpe’s case – the impact of menstruation, the issue of consent, the extent to which delaying or preventing puberty can help a carer to cope – are interesting ones to discuss. Just because Katie Thorpe’s mother knows her daughter best does not mean that she automatically gains the moral right to be right. You do not have to be a disabled person or a carer to debate and understand the issue of disability.
But because Katie Thorpe’s mother knows her daughter best, because she loves her and cares for her and will continue to do so for the rest of Katie’s life, she does gain the moral right to make her decision, without facing a wave of condemnation from the know-it-alls sitting on the sidelines. As she says, those who are so free with their criticism should ‘come and spend a week with me, walk in my shoes’. Will they? It’s unlikely. It might involve extending some practical help.
Jennie Bristow is former commissioning editor of spiked. She is a freelance writer and researcher, and editor of the bpas journal Abortion Review. She is speaking at the session Demonising parents at the Battle of Ideas festival in London on 27-28 October.
Jennie Bristow discussed a lesson in conformity for parents and argued that our children are over-surveilled and underprotected by an interfering government. Helene Guldberg acclaimed Eve Herold’s book on the stem cell wars and Stuart Derbyshire insisted that scientists must push boundaries in their research. Or read more at: spiked issue Parents and Kids
(2) Why I want surgeons to remove my disabled daughter’s womb, This Is London, 7 October 2007
(3) Why I want surgeons to remove my disabled daughter’s womb, This Is London, 7 October 2007
(5) Mother seeks girl’s hysterectomy, BBC News, 7 October 2007
(6) Mother wants disabled girl to have hysterectomy ‘to give her a better life’, The Times (London), 9 October 2007
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