Hysterectomy on disabled girls? Disabled but above all women!

Today I read about a disability right issue, the story of a teenage girl from Billericay, Katie Thorpe, 15, with cerebral palsy whose parents wished an hysterectomy for her (this means have her womb removed). The parents insisted that a hysterectomy could improve the girl’s life quality, that it would “protect her from the pain, discomfort and indignity of menstruation”; that if she gets her periods, this would “confuse her and cause her indignity” and that for these reasons there was “a real need for Katie to have this necessary evil taken away”. The disabled girl is unable to give or refuse her consent because she cannot talk! Fortunately, the hospital refused to carry out the operation (The Guardian Article, BBC News Article) and said that there was no adequate clinical reason for a hysterectomy.

A young girl with cerebral palsy, Emma or “Wheelchair Princess“, writes in her blog: “I am pleased by this development but saddened that it’s not made more of a splash in the news – it’s HUGE. I also want to note that I think this equality issue becomes more and more of a feminist issue too as the stories come out. We’ve still heard nothing about boys having their growth halted prematurely or puberty prevented due to disability – but I’m sure we will someday and that they’ll be more of an outcry than there has been for Katie and for Ashley. Cos they aren’t just disabled, they are girls too.

Short note: “Ashley” (or “Ashley X”) is a young Seattle girl with physical and learning disabilities who illegally underwent a hysteroctomy, mastectomy and appendectomy in 2004 (her uterus, breast buds and appendix were removed), because her parents wished to prevent her from growing up sexually; they kept their daughter immature, so they can continue to care for her at home – “for her benefit”. The operation is known as the “Ashley Treatment”. More information in Wikipedia.

I agree that being a woman is far above disability and Katie, Ashley and every other disabled WOMAN, should have the right to decide things that concern their own sexuality, their body, their future life, their future happiness. They should retain the possibility of having sexual relations and bearing children, of taking the pill if they do not wish or if they (for any other reasons) should not have a child. What is “indignity” and “necessary evil” – menstruation / sexuality? or rather hysteroctomy? And for who is it causing indignity – for Katie or for her parents? Aren’t the parents projecting their OWN needs and their OWN wishes in thoses phrases?

I am an “abled-bodied” woman, but above all I am a woman, and I can imagine what it could mean to have your uterus removed and to lose the possibility of having a child! I’ve also read that hysteroctomy can cause lowered sexual desire and decreased pleasure. This is really scary, it’s an irreversible operation with irreversible psychological pain and irreversible results! If doctors had agreed to carry out the Katie hysterectomy, this would have been a human rights infringement and at the same time a women’s rights infringement.

Some reactions and comments I read about this issue show how ignorant the majority of able-bodied people are; disabled women CAN have children and can be great parents; the right to have a family cannot be taken away from them just because they were born disabled! They should be given more support to achieve it! A mentally ill woman has the right to bear children because she is physically healthy – then some of those mentally ill mothers kill their kids, abuse them or abandon them – but they still have the right to have children! Nobody came to the idea of removing the wombs of a mentally ill mother! A physically disabled woman who is caring and mentally healthy should have every right to have children and to receive every possible support to overwhelm the every-day difficulties that her disability is causing her.

I knew that many women have to undergo hysterectomy because they have cancer, or chronic pelvic pain, or fibroids, but I didn’t know that hysterectomy is now used to treat … disability! I didn’t even know disability was a disease! Hear, hear!

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2 Responses to “Hysterectomy on disabled girls? Disabled but above all women!”

  1. zellie Says:

    You are right that the current debate (which could and should be louder and more public) about the right to bear children concerns women with physical disabilities more than mental disabilites. However, as a young woman with mental illness and learning disabilities married to man with learning disbilities, I feel connected to the strugle of women with physical disabilities, for I fear that if society accepts nutering for women with physical disabilities, then we will have started down the slippery stroke back to eugenics and I or my family members will be next.

  2. Ina Mar Says:

    Dear Zellie, thank you so much for your contribution.
    You are and should feel connected to the struggle of women with physical disabilities. A child needs above all love, and you, or a physically disabled mother, can offer lots of it. You can also offer other things, that a non-disabled person will not be able to offer. As you will not be able to offer some things, that a non-disabled parent will be able to offer. The idea of eugenics is so wrong! We can’t compare the vitamins of an orange juice with those of a glass of milk – which one is more/less useful? There’s no comparison and there’s no means of selection! We should just stop comparing unequal things and start interacting them and mutually supporting them, so we can get the best out of both.

    In my blog post, I was not referring to all women with mental disabilities, and especially not to self-conscious women like you, who know and accept their weaknesses, who live with them and get support if needed.
    I was rather referring to some women with psychological illnesses or anxieties or depression, who refuse to get (medical or phychological) help to raise their child, or perhaps (as a part of their illness) they just DON’T KNOW that they need help. Their weakness is not “visible to a naked eye” so nobody complains, nobody knows they need help, so nobody offers help. And of course nobody would even think about taking away their right to bear children, just “for their benefit” (I am quoting Ashley’s mother).