Your opinion on the 'Ashley treatment'?

[crashdoll]

This article is about a teenage girl in America with severe disabilities. Her parents put her through a lot of treatment to prevent her going through puberty. To some extent, I can understand their motives but removing her breast buds and putting her through a hysterectomy? That sounds sound too far to me.

Sorry it's the DM.

www.dailymail.co.uk/health/article-2115904/Ashley-treatment-Should-parents-stop-disabled-children-growing-up.html

I don't really understand why they've done it, what difference do breasts make?

the Ashley part is an old story, but the 100 odd parents who have now done it is new.
it isn't easy dealing with puberty when your child is severely disabled, or them growing, lifting and stuff becomes impossible, but there are lots of aids9hoists ) to help with that. there are also ways to halt periods.
I know this as have recently chatted to dd's nurse about it.
this is taking it ot the extreme and making a person into something they are not, and tbh I can not see how it will in any way help the young person.

Kal, that article is amazing! I may have just had a massive change of mind!

I find this distressing in ways I cannot even vocalise.

Its awesome isnt it Outraged. Sadly Annie passed away not so long ago but at least she lived her life free.

Oh! I'm really sad to hear that. Thank you for bringing her story to my attention though. I think there must be a lot of people that need to hear what she had to say.

My daughter is physically like Ashley. She cannot walk or talk. She cannot move at all, she cannot hold a toy or use her hands or even see well. If it wasnt for the fact that I am pushy and we now have talking computers the assumption would be she has the 'mental age of a baby'. Turns out dd is one of the brightest in her mainstream class. Can you imagine what it must be like to have the assumption made you dont understand and then have people take away things from you and do stuff too you without your consent. Appaling.

not that intellectual capacity should be a deciding factor in imposing needless surgery on disabled people.

I remember the threads about this at the time.

tbh I started out with one view and ended up with another.

In the beginning I very much thought it was about playing God and wanting to do it for the benefit of the parents and not accepting that she would become an adult etc.

But then some parents of profoundly disabled children came on to the thread and expressed the fears that so many of us will never experience. The fear that one day their profoundly disabled child will probably have to go into residential care, the reality that periods for a child who has the mental capasity of a three month old baby must be deeply confusing and possibly distressing. One poster expressed how fearful she was that others would look at her daughter, would see her breasts, see her as a woman when in fact inwardly she was just a child and would for ever be a child. And the indignity of having to hoist your baby (because she is a baby) rather than being able to pick her up and cuddle her as you would a baby, iyswim.

And I was left not knowing what to think.

Is it wrong for parents to want to keep their child, who has the mind of a child and always will have, in the body of a child, so that they would always be able to care for her as they were used to doing? Initially I thought it was, but actually, I don't know.

I think that sterilisation isn't actually a bad thing in this instance. I think anyone against it should question why. Because in truth this girl is never going to have babies. she is never going to be capable of consenting to a sexual relationship, ever. No contraceptive is 100% effective, and whether we like to acknowledge this or not, adults with serious ld's are more likely to be abused than those without. Imagine the absolute devastation and trauma if this girl were to be sexually abused and end up pregnant as a result. It's a possibility that isn't worth thinking about. So while I do have some misgivings about some of the treatments here, I do actually think that sterilisation is a valid treatment here.

Annies book is out of print but you can still find it. Its called 'Annies getting out' by Ann MacDonald

Tbh, I can't even begin to imagine what it must be like.

I don't even know what to say in response to your post.

I am passionate about people being given the right support to enable them to achieve their potential despite disabilities, (do some voluntary stuff) and the thought of people being written off like that makes me so angry! But then that's what I just did when I first heard the story. I have a lot to learn, clearly, and I actually consider myself quite clued up about disability issues.

Thanks Kal, I'll have a look.

Wanna, I see exactly what you are saying, but how do we know that Ashley (and all the others) have been given every possible opportunity to be able to communicate? What if, given the right support, they would tell their surgeons to stop?

by that argument wannabe, women are more likely to be raped than men so should we sterilise them?

initially i read this and thought "what the hell did those parents do" but if you read the wikipedia article it is obviously not that straighforward.

kalskirata women are more likely to be raped than men yes, but most women are in a position to take decisions about reporting the rape, criminal prosecutions, even what to do about any resulting STD or pregnancy. Someone with the mental capacity of a young child is not. It is common for the parents of (healthy) young children to take action on their behalf. Its a very difficult area when an older child or adult has the mental capacity of a much younger child - how much autonomy should that person have and if they do not have complete autonomy who should decide for them? I think unless you argue for 100% autonomy, the parents are usually the best placed to take the remainder of the decisions.

In this case it seems, for example, that large breasts ran in the family, and large breasts would cause problems strapping Ashley into her wheelchair. Sounds like a mechanical problem to me, nothing to do with sexuality. Another mechanical issue was her parents ability to lift and care for her if she grew to full adult size.

I'm not saying I agree fully with what they chose for her, i'm just saying it isn't black and white and there were some non-sexual reasons as well as fears over dealing with menstruation and the possibility of future sexual abuse too.

'Another mechanical issue was her parents ability to lift and care for her if she grew to full adult size. '

Thats what hoists are for. My dd will grow to adult size. I cant lift her now cos I'm in a wheelchair myself. Its not my right to do anything to her to restrict her growth for my convenience.

The thing I don't understand is when people talking about how removing her breasts will mean she isn't at risk of sexual assault. People aren't only abused when they're adults. It wouldn't stop someone who is determined for one minute.

I'm also sad for this girl because the parents talked about wanting to help her avoid a life of more pain (from having large breasts and period pain) but surgeries do sometimes leave people in chronic pain. There can be nerve damage and lifelong skin sensitivity where the scar is. It was actually a risk to go ahead with the surgeries in that sense.

I have a lot of empathy for the parents, in that I can imagine that they feel they can give her a better quality of life if she's small long term, even with hoists existing, but it still just feels wrong and unpalatable and abusive. I can't support it.

yes I am a lot less convinced about the potential for sexual abuse arguments.... but again we don't have all the facts.

regarding restricting her growth for the parents convenience - yes on the face of it I completely agree, but again its not black and white. Was it in Ashley's interests to ensure she could stay at home with her parents at least until old age prevented them from being her primary carers? The parents seem to feel strongly that they could not have coped with her at home at full stature, even with hoists. So perhaps this is a choice between deliberately restricting her growth and staying at home, or "allowing" her to grow normally but being in residential care. grey grey and more grey.

I've just read the article posted by Kalskirata and the thing that shocks me most is the lack of attempt in her life to properly assess her intellectual ability, which first requires serious attempts to communicate with the person who is mobility restricted. There is something sinister (IMHO) about assuming someone who cannot move also cannot think. Again, only my opinion, but couldn't so much of this be resolved if a way to communicate was found first, and Ashley's wishes and cognitive abilities could have been factored in first. Maybe this was tried though, again there are only limited facts available here.

Hallo we have moved this out of AIBU into In The News
Thanks M Towers

hopefully it will be banned and not be used over here.
I would have thought the young persons human rights have been breached, so hopefully that mean it won't happen here/

Any CP/LAC SW will tell you that eugenics is alive and well, the difference is that we (as a society) just put women with LD's/MH etc through multiple pregnancies, to remove the child at birth, so i can see why a parent wouldn't want their daughter at risk of getting pregnant.

We need common sense answers, for women who have independance or semi independance, yet are vulnerable to getting pregnant/being used, but cannot understand pregnancy/birth or will never be allowed to keep the child.

I have also looked after women with disabilities that have become very upset before/when having a period.

There was an outcry when some years ago a mother campaigned to have her daughter with Downs Syndrome sterilised, but i could well understand her point,for some women a pregnancy could be life threating or their medication means that the baby willbe guaranteed a poor outcome.

this is nothing to do with pregnancy though, all to do with keeping a severely disabled child with no voice baby like.
imagine the out cry if this was done to an nt child.

It's the fact the parents then refer to her as their pillow angel gets me. I've been trying to work out all evening Whynthis makes me itch, and it's that.

I have been blessed with two healthy children so I cant put myself in their shoes. But it just feels so so so wrong. Horribly invasive surgery. Do people with less than average intelligence no longer have the right to become adults? Should we not be adapting their care to what they need, and not the other way round??