Your views: The Ashley X debate

Ashley X is a profoundly disabled little girl who cannot walk, talk, eat or raise her head.

Her parents have now halted her growth so she can remain easier to manage.

But should they?

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Here is the latest selection of your views:

S Mohanakrishnan

I think this is a decision that is best left to the parents. Depending on their circumstances including financial, they can decide how they want to care for their severely disabled children. When parents are responsible for healthy children and decide on their upbringing and values teaching on a daily basis, why not let them decide about these severely disabled children too? Unless governements can fund the care and assure life long abuse-free care for these children, the parents are the best persons to decide.

Marlene Ham

This has to be a very difficult decision for her parents to make. If I had a child that was so disabled that she could not speak, walk or care for herself, I would be feeling a bit helpless. I think that these parents deserve to have good friends that are there to support them during such difficult circumstances. Who knows? They say that when she is 60 years old, she will have the body of a child. But is that really true? If so, does that mean that every 9 year old child can not talk, walk or care for themselves? No. This girl will be a very different woman, but she wont be like a 9 year old child and she never will be. That is the sad thing her parents have to live with, not having a child that is able to do things with them like riding a bike, going line fishing off the wharf with her dad, cooking lessons with mum. And when she is 60 years old, science hasn’t proven yet what effects this operation will have on her later years. Will her skin wrinkle, will her hair go grey? Surely she will not look the same as she does today. The world is a big place with big problems. This one problem, unfortunately has happened to a good person with an innocent heart. The only thing she really has is her 2 parents who love her very much. I bet they are worried about what will happen to her when they are no longer here.

Turia Davis

Yes, if she remains a child, or at the least child sized, her parents will be able to physically care for her as they get older. I am a careworker, physically fit and strong, and it is not easy to gently handle an adult client who is unable to help with daily personal care even if they want to. I would make the same choice if it were my child.

Anthony Towler

I am a disabled person. I have mild cerebral palsy. I walk on a cane. However when I was born my diagnosis was progressive. Meaning I should have got worse. At one point I was in a wheelchair. In my 31 years I have achieved a lot. I played competitive indoor cricket. Four tournaments, Four finals. I have completed a very physical full time production course. I work for one of New Zealands top production companies managing two Sky channels. I have written and directed five short films working with many actors who have since gone on to Shortland Street. I have also played the very physical role of Robin Goodfellow in A Midsummer Nights Dream. Gosh imagine how much I would have achieved if my parents had the option to redesign their progressive child.

S Gibbons

I fully endorse the treatment of Ashley X. After 3 decades of nursing, and many years spent caring for profoundly intellectually disabled adults I believe it is a kindness, and is a practical solution. Lifting deadweight adults in and out of baths, wheelchairs and beds is a heavy business, and offers little dignity to the patient. In my experience, the smaller, doll like patients attract better care their baby like features keeping the mothering instinct alive longer in the carer’s minds. Although she is said to be in line for a fairly long lifespan, her immobility will put her at higher risk of blood clots/emboli and respiratory problems that may well claim her earlier. If I had a child with the same future, I would have no hesitation in taking the same path Ashley’s parents and doctors have chosen.

Dave Bousfield

Not in my opinion, it smacked of convenience. The Observer article was a crock. I did not much like that mean "equivocal love" jibe against carers, wonder why the weasel did not write doubtful. Watch out for the eugenics and pro-death brigades, disabled people may become endangered in the future.

Kylie Foster

I personally do not think I would have done it but I am not in their situation. I think it depends on the circumstances of the child and family. At the end of the day it is their choice and no one else’s business really.

Anne E van Duren

It seems intriguing that medical science is able to legally "disable" a person (perform hysterectomy surgery and proceed with injections to prevent physical growth) for conveniences’ sake (on behalf of relatives), when this is not supporting the traditional view of "quality of life" as perceived by the patient. Should we deliberately medically sustain a doll vegetable who apparently cannot do anything for herself including thinking, or be likely to naturally develop out of her predicament? In this case I sense, euthanasia is kinder, because here we are not manipulating a life just to relieve the burden of caregiving.

Jacqui Hopkins

Ashleys parents are doing what they consider will give her the best quality of life: being able to join in with family activities etc. With the level of her disabilities, I think they have made the right decision: Ashley is hardly going to miss out on a so called normal life as a consequence of what they have done. Instead, her parents will be able to include her in many activities, outings etc, which would become increasingly difficult as she grew bigger. They have her best interests at heart.

Collin

Coming from a family with a severely disabled member such as Ashley (with an inability to speak, walk, feed herself, or shower herself etc) I can understand why Ashley’s parents have chosen such drastic measures. When I first heard this story, I too found it shocking until I realised that Ashley is unlikely to have a normal life if allowed to fully develop, and will cause issues for her caregivers when she becomes a strong fully-sized adult. It is much easier for those who have not witnessed these disabilities to judge, particularly when Ashley’s parents are taking such drastic surgical measures to change their daughter’s body. However, it could be argued that allowing her to remain a small manageable size will not force her parents/caregivers to put her in 24 hour care at an early age and possibly for the rest of her life. At the size of a 9 year old, she could live with her loved ones for the rest of her life under their care and in a safe, happy, home environment. Which is truly better; forcing her body to remain nine, and allowing her parents/caregivers to continue looking after her, or allowing her to develop and then having to send her off to be cared for by others at both emotional and financial cost?

Liz Shaw

There was no reason for this particular surgery. The article does not mention any problem with the womb and the breasts or her mental age. This is so wrong and shouldn’t have been allowed to happen.

Darren

Why think in a few years time they will be able to do away with Ashleys body completely. Take one of Grannies favourite jars, place a few electrodes in it and plop in wee Ashleys brain. Bingo! We have managed to dispose of that bothersome body entirely. Great to take out on the weekend, perhaps a leisurely stroll in the park or a front row seat at the game. What more could a parent want! Washing and bathing Ash becomes a thing of the past, no more bed sores and little Ashley will be living in perfect comfort! What more could a responsible and courageous parent ask for. Perfect comfort, perfect convenience. Or just perhaps this idea is gross and degrades and shuts out any hope for poor wee Ashley. What yah think?

Tammy Hickson

A first glance I was horrified by this story of what sounded very much like a medical experiment. But as I read further I realised it was a story like no other, with no precedent and no guidelines to follow, I asked myself if this was my child what would I do?

I live with incurable bowel disease everyday of my life and have enough trouble trying not to have pity parties daily but if the suffering was my childs? How different would my attitude and approach to it be? Until you are put in this situation and until you suffer the daily happenings that this poor family do you cannot judge fully the hardship and determination it must take for this family just to function on a day to day basis. I can not say I agree with the extreme path they have decided to take to ensure their childs quality of life, yet I can say that if this was my child I know I would do anything to ease the pain, halt the disease and make sure they had as normal a life as possible and to my understanding this is all the parents and doctors are tying to do. No matter how controversial their approach may seem to others who do not have to live what they live each and every single day. Until you have stood in their shoes I do not think anyone can fully judge these parents decision to love their little girl and support her the way they see fit.

Jackie Hayward

I do not think we can pass judgement. Ashleys parents acted on behalf of their child and in her best interests. Parents can choose to circumcise their child or give their child drugs for conditions like ADHD which can make a child easier to manage and also stunt growth all without their childs consent. Ashleys parents are obviously trying to make Ashley as comfortable as they can and protect her from pain and a life of misery. What parent wouldn’t do the same?

Paula Barrington

Anyone who has taken care of a fully grown disabled adult will know how difficult it is to lift, move, and make comfortable that person. I believe the parents are doing the right thing for Ashley - by keeping her body small, they are making her more comfortable, more able to be easily included in family life, and keeping themselves safer and stronger by not having to lift large weights. Do not judge them until you have been in their situation.