The Ashley Treatment

I haven’t been able to write about this little girl because it brings up so many feelings and confusions. One of my very favorite bloggers bfp has put into words what some of us bloggers, who have no experience of disability, have been unable or even unwilling to say. So, thank you bfp for your thoughts and for inadvertently giving me the courage to do the same.

I want to say first of all that I have no experience of caring for a disabled child and I am not disabled myself. I lived with a woman who was severely disabled for 6 months, acting as one of her independent living “helpers”. The truth is I probably got more out of that experience than she did. One of the best things I learned was how to get totally drunk in the local pub together and ride shotgun on her wheelchair all the way home (It was downhill). Couldn’t resist that, Elaine !

Most people blogging this case have focused on how the parents are nice people and are doing this in the best interest of their “pillow angel“. Let me just say that I am sure her parents think they were acting in her best interests and, from what I read, they adore their daughter. I have been faced with making decisions about my child and it’s hard. I cannot imagine how much harder it must be when you are parenting a severely disabled child. I am not dismissing their difficulties. I am questioning the advice they were given by doctors and other professionals. I am questioning the choices they finally made.

I was offered the “chance” to circumsise my boy at three days old. I was told it was routine and would save problems occuring in the future, for my child and his future sexual partners. People told me it would be almost painless and (probably) without complications. I remember the confusing thoughts. If I said no and he had problems later, how will I live with that ? But my overiding feeling was “Is this my choice to make?” I don’t want to get into religious arguments here but as I do not have a one, that wasn’t a consideration. I decided the choice wasn’t mine.

How does this relate to this case ? Possibly, not at all… but that’s what came up…

Ashley was “given” a hysterectomy.

“Ashley has no need for her uterus since she will not be bearing children,” they said, adding that the decision means she will not experience the menstrual cycle and the bleeding and discomfort commonly associated with it

There are other ways to manage the discomfort or pain of the menstrual cycle that do not involve surgery and dealing with menstrual blood should not be a problem for the kind of caregivers the parents would want ?

Just because someone will not bear children, through choice or circumstance, does that mean they should have their wombs removed ? Should we be removing the wombs of infertile women ? Or women who decide not to have children ? No.

The parents also said that the operation would remove the possibility of pregnancy, should Ashley be raped ! Don’t you think we should be doing something about rape rather than removing people’s wombs ? It’s not our wombs that cause rape for goodness sake.

Ashley also had her breast buds removed. One of the reasons given was to avoid discomfort caused by lying down. I don’t know medically of course, but I have never heard of such a thing ? This kind of pre-emptive strike disturbs me. We will never know if she would have suffered discomfort because of her breasts? She will never have them.

Another reason given was that both sides of the family have a history of breast cancer (which is of concern) but there are monthly examinations and mammograms aren’t there?

Again, sexual abuse was cited as another reason for breast removal. And again… it is not breasts that cause rape and abuse. If that was the case, are we advocating that all girls should have their breasts removed to prevent it?

People without wombs or breasts are raped or sexually abused. In my humble opinion, this should not be part of the argument in this case.

Anyway, bfp says it far better than me

Is it ok to cut off a disabled woman’s legs because she’s not going to use them in traditional ways ?

I don’t know what else to say other than that I find this “pre-emptive surgery” very disturbing. She had her appendix removed just in case she got appendicitis. We do not remove the appendix of children just in case… even if they are unable to tell us what hurts and where. We have doctors and scans and all kinds of technology to find out what is wrong, don’t we ? Where does it all end ? Should we remove her teeth too because she might get an abcess or a cavity and she uses a feeding tube anyway?

It’s complicated. Much more complicated than I have suggested here. I know that. It’s hard. I know it’s hard and I cannot imagine what it must be like to have a severely disabled child.

But keeping this little girl suspended as a little girl is surely not the answer ?

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~ by deviousdiva on January 10, 2007.

One Response to “The Ashley Treatment”

  1. It’s a thorny issue, no doubt, Diva – but I have to say I agree with the parents
    here. Ashley’s static encephalopathy means she has the mental capacity of
    a three-month old baby…and, mentally, she’ll always be a three month old
    baby. There is no benefit to anyone in having that three month old baby trapped
    in a grown woman’s body.

    By having these procedures her family are ensuring they can continue to give
    her the same level of care and love throughout her life as they’ve always given
    her. And there’s certainly a benefit there.

    There’s no ‘good’ solution to this situation. As usual, in life, there’s only the
    ‘least worst’ solution. No one’s applauding it – but we shouldn’t condemn it.

    Because the bottom line is this – we are, none of us, fit to judge this case.
    The only people who are fit to judge this case are Ashley’s parents, and they’ve
    made the only decision which benefits Ashley.

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