Big issues from a small child
How far can a parent go in managing the life of their disabled child? Perhaps too far.
Shock. Even revulsion. These were the main reactions provoked by news stories about Ashley, a nine-year-old disabled girl who has been surgically and hormonally altered by her parents to forever stay the size of a small child. Is such treatment acceptable, asked the world's press. On instinct, my immediate reaction was "no".
Read the column here.
Comments
Things to note:
Ashley has irreversible static encephalopathy, has the mental age of a 3 month old, and has to be fed with a tube. She cannot walk, talk, hold her head up or sit up by herself.
All the above is from the article.
So what is the hue and cry about? Whom are we protecting here -- the kid or our own delicate sense of "morality"?
This brings to mind the reason we have elaborate funerals and eulogies -- surely the guy in the coffin isn't enjoying them; it's for us.
Ashely doesn't care whether she has a uterus or not; we're the ones shocked, revulsed and outraged and asking for a discussion of ethics. Fair enough; society needs to protect itself, too.
But where does society's concern about itself become intrusion and invasion of privacy and dignity of the individual? Should Terry Schiavo been kept alive? Should we not leave it to the parents, husband/wife, and immediate family to make such decisions? They are the ones who have to live with Ashley for the next 20 years, taking care of her day after day, while bloggers and commentators have long forgotten her case amid the next ten million such incidents.
The article talks about the "benefits" being less "confusion and inconvenience" and avoidance of sexual abuse. Inconveneince for whom? The parents, yes? Society, yes? Ashley is apparently a non-entity in this equation, and perhaps, rightly so.
The question to be resolved is whether the parents needs trump that of the society's; and till the time society takes up the full responsibility for Ashley, with the consent of the parents, the parents have the right, moral or otherwise, to take what they think is best for themselves and their child.
Posted by: Abler | January 8, 2007 06:53 PM
This is shocking and saddening both. Although you do tend to think that the parents are going too far, in this case.
Was watching this program on T.V last night about conjoined twins who are now 16 years old.
It's scary to see and hear about cases such as these, where surgery can overwrite nature so largely.
Posted by: Shweyta | January 8, 2007 07:34 PM
The thing that disturbs me most about this "issue" is the fact that, the government and the public, two entities who are in no way responsible for this child, nor are providing any care, are the ones that are acting as moral police. It is always easier to preach ethics when one doesn't have to uphold it. These parents are doing whatever it takes to ensure that the child with this unfortunate condition gets all the attention and care that it can get. Considering this the first treatment of its kind, one wont know of its pros and cons unless the treatment is given a chance. Physiological alteration isn't something new; where are these ethics when someone decides to get a sex change operation, or when someone even came up with an idea as skewed as breast augmentation; and these are done for no significant reason whatsoever. In Ashley's case we are talking about a life that is in someone else's hands, namely her parents, and if they are doing whatever it takes to make sure she gets the best even after they grow old, I think its a bold step that not only deserves kudos, but all the support and encouragement they can get. At the end of the day, people who aren't willing to take responsibility, shouldn't have anything to say in the first place.
Posted by: Raj Sarma | January 8, 2007 08:07 PM
Saying that the government should help to cover expenses is great. The problem is that the governement stops giving families as much support after these children grow up. I am a registered dietitian and have worked with families in similar circumstances. Frequently home health nurses quite when the kids get too big because their backs cannot handle the weight. Even if a family has a lift to get a child into and out of a bath, it may not fit in their house. Houses more than 5 years old are not built to be wheelchair accessible, so how is a lift going to fit. If you want to be critical of the family for chosing this treatment, maybe you should spend a few days in their shoes because it is not easy. I think that even 4 years ago, I would have found this situation appalling and unethical. Now that I have worked with families like this, I understand how much these families have to sacrifice for these children who will never even tell their parents, "I love you."
Posted by: Anonymous | January 8, 2007 08:51 PM
While I feel the child's condition alone justified the parent's action, having watched my mentally disabled cousin grow up, it disturbs me how quickly people deem serving the needs of other family members as morally wrong. It's a parent's duty to provide safety, health and happiness to all their children, not injure themselves caring for a disabled child because that makes the rest of the world comfortable. It is a parent's duty to make critical care decisions so that all of their children can thrive to their potential, and not to devote all of their resources to ensuring that their disabled child lives in constant bliss through back-breaking work while their other children are continually shorted.
This should make us uncomfortable, but we should also be realistic. A permanant infant is not going to 'miss out' on being a mother, is not going to feel slighted by her curtailed growth, or feel inadequate about her breast size. While it's human nature to project our own emotions onto the disabled, this is far more patronizing and demeaning than making the difficult decisions with a rational mind.
Posted by: A. Marciszyn | January 9, 2007 06:03 PM
This situation has highlighted the largely unquestioned bias society has in treating the human animal so differently from others, regardless of cognitive capability. It sounds terrible to say it, but it sounds like chimpanzees, even some dogs, are smarter and more capable of suffering than this child. I am not advocating some cold-hearted policy regarding the treatment of the mentally disabled -- rather, I would ask anyone considering this situation as immoral to also question how we treat animals of equivalent cognitive capacity. I'm also disappointed to find Nature's blog echoing this speciesist bias of society.
It never even occurred to me to fault these parents for their decision, I think they did the right thing. Unlike normal children, their daughter will never, ever be capable of making even the most basic decisions in life. They're doing their best to ensure their own ability to give her the best life possible. I admire them for making this decision, rather make the cowardly choice of doing nothing -- only to have both themselves *and* their daughter suffer as she grew into a body and sexual maturity neither could handle.
Posted by: Madeleine Price Ball | January 9, 2007 08:49 PM
As one who has professionally cared for adults with developmental disabilities, I think this is a promising procedure for future generations.
Most of the focus here has been on what the procedure may or may not do for the caregiver.
But, in my mind, the benefits for the individual far outweigh any benefits for the caregiver. In that it lowers the risk of decubitus ulcers, transfer injuries and sexual objectification gives it high ratings in my book.
Posted by: Doug McGee | January 9, 2007 09:47 PM
As the majority of controversial decisions, the management of severely mentally disabled children should be taken on a case by case basis. Ethical or moral judgment of this and similar cases is not possible without deep knowledge of the patients' and families' circumstances. Generalisation and arbitrary judgment are usually wrong and, most important, helpless for people who have to endure these unfortunate situations
Posted by: Pilar Lardelli | January 10, 2007 08:58 AM
I wonder if it's right to assume that the benefits of this decision are all in favour of the parents? For someone who will remain permanently an 'infant', maybe the tactile love and care that we give to infants will remain important to her. If so, there could be major benefit in being carried rather than hoisted. Setting aside any question of 'dignity', there's no love in a hoist. Having nursed a teenage daughter (50 kilos) through a neurodegenerative disease, I've experienced both, and I feel that the 'personal touch' may well outweigh many supposed indignities that Ashley will probably never be aware of. Of course, I don't know the details of her case, so it's not for me to judge. But it saddens me that society must always assume the worst when looking at parents' or carers' motives. If Ashley's parents have fully discussed the implications of their choice with her professional advisors, and they think they can love her better this way, then - right or wrong - they have my full support.
Posted by: Janet Gibbs | January 15, 2007 06:46 PM
My issue with this is the risks and pain. it seems cruel to inflict risks and pain on a helpless person just because our system doesnt allow for her family to get the help they need. The solution isnt uncessary surgery, it's more help for families.
Posted by: Laurie | January 15, 2007 11:10 PM
I believe the decisions taken by the parents and their physicians are indeed justified and I do believe that we should not make every particular case a universal symbol of something else. All the mechanisms in place for monitoring wrongdoing seem to have been used in this case. The parents are responsible caretakers. Their requests were discussed with a team of doctors. Hospital ethics panels of some sort seem to have been involved. If all these people are doing their job, then dilettantes from halfway across the globe clearly have less right to speak in this matter. If established procedures were not followed, then that may need to be discussed. In general, the people concerned are the best judges of the situation. In some cases, the local community may indeed err (systemically in the case of racist communities) but the family and local authorities are the default setting; anything else has to be justified, not the other way round.
Posted by: Omar Ali | January 16, 2007 04:45 PM
I have a feeling that a request originating from the family, from parents that obviously care very much for their child and are prepared to fight many obstacles in fulfilling her needs, deserves all respect. They are most certainly doing the right thing for her. I would not think of asking my daughter, who is mainly fed by tube, cannot walk, talk, hold her head up or sit up by herself, but that is my decision and another girl in a different context. I am surprised though that there hasn't been any comment on the judgement that the girl has mental age three months. I suppose again that the parents know, but if you think about it, such an assessment is plainly ridiculous if done by anyone who is not living with the girl. She apparently has enormous difficulties in controlling her body and the mental age is just guesswork. In a society where judgements like that propagate, and could become decisive, it would be very dangerous if similar treatments became standard.
Posted by: Bo Sundborg | January 17, 2007 03:41 PM
And always, in a similar manner…
Remembering the sound of a beautiful night,
and waiting for a pleasure, I see a delicate
leaf arriving alone near a golden portrait ; the
wind fades away, the care of a blackbird
discovers a dream and always, in a similar
manner, a sullen desire describes an emotion…..
Francesco Sinibaldi
Posted by: Francesco Sinibaldi | July 20, 2007 05:55 PM