Saturday, January 06, 2007

The Ashley Experiment

While I have been lamenting about my minor issues or creating issues where none existed, the new year brought to the fore a lot of stuff that took me by surprise. For one, the girl being molested at The Gateway of India, Mumbai on New Years Eve – an issue that Viva tackled in her blog. That something like this could happen in Amchi Mumbai left me fairly shaken. The city of dreams showed its ugly underbelly in this nightmarish incident.

Global warming on the other hand has left the entire north-east coast of USA unusually warm for this time of the year. Meteorologists talked about the El Nino effect leading to 2007 being accorded the status of the warmest year ever on record. Somehow its still not warm enough for politicians to come out of their holes and start thinking about the environment and climate.

One issue that really moved me – is what’s being dubbed as the Ashley experiment. Parents of a severely cognitively and physically disabled girl took some decisions which have left them open to criticism. The 9 year old has static encephalopathy, with marked global developmental deficits, and is reported to be non-ambulatory, with the cognitive abilities of a three-month-old child, and no hope for improvement. Simply put – she has the brain of a 3 month old with the body of a 9 year old. So she can’t get up, walk, or even turn over on her own. She smiles at her parents but doesn’t recognize them. What goes unsaid is – she needs constant care.

So what did the parents do? They decided to subject her to high-dose estrogen, a prophylactic hysterectomy, and breast tissue reduction surgery (to prevent familial breast cancer). The basic premise is that high-dose estrogen can inhibit growth and advance maturation of epiphyseal growth plates in order to keep the child's stature short. Put simply, she will not grow beyond 4 feet and 5 inches and will not weigh beyond 34 kg (70 pounds). Her parents reason that since she will need constant care – its best that she remain small so that they can carry her around. If she gains her full height and weight she will most likely spend all her time either staring at the ceiling or the TV.

Their decision has sparked off worldwide debate about whether it was a decision of convenience or compassion. Medical ethicists have criticized the parents' decision, saying that while it may make her care more manageable, it sets a precedent for the treatment of severely disabled children.

If motherhood has taught me anything it’s never to judge another parent. So I’m not going to get into the rights and wrongs of the decision. I can’t even imagine what the parents must have gone through to reach at this decision. How does one reach such a decision? Of course you would want the best for your child – but then how do you decide whats the best?

So far one has heard about disabled children spending their lifetimes at special care homes – existing each day – parents not being able to care for them. To me the decision is bold. And courageous. And full of resolve – to meet the future – no matter how strenuous it may seem. And it shows the love the parents have for their child – to ensure that they will be able to care for their child.

Yes, the question does remain about taking over the rights of the child. I mean for all practical purposes they have taken certain decisions which will ensure that should she recover – she will not lead the full life of a normal woman. While doctors have ruled out her chances of recovery, my religious beliefs prod me into asking “what if a miracle were to occur? What if He wills for her to recover?” Will the child understand the strength of her parents resolve? But then again haven’t her parents become demi-Gods, deciding a future for her?

Her parents are maintaining a blog about their decision for their daughter and you can see it here.

I couldn’t get this issue out of my mind all yesterday and today – and I still haven’t gone any further than when I began. What do you guys think?


At 1:46 AM, Blogger That Armchair Philosopher said...

I know exactly what you mean. It sounds barbaric. The fact that they would limit the experiences and freedom of what is ostensibly a beautiful girl. It sounds selfish when they talk about it being easier to move her and take care of her, et al. They even give her hormones to reduce her weight.

I thought quite a bit about myself, and frankly, its a tough decision. It does have inklings of sanity somewhere in there though - I can totally understand their perspective/pain and the girls' trouble when she matures.

Tough decision, which they'll have to live with and hope for the best. What would you have done though, in their shoes?

At 9:22 AM, Anonymous Coffee said...

I agree with TAP. Its a tough decision!!!!

At 11:32 AM, Anonymous Vi said...

This is sad. I didn't really 'attack' the issue, really. I was more resigned, and saddened.

On a related note: I read an article in the NY times where parents were *deliberately* choose defective genes for their children because they wanted them to know what it was like. THAT really disgusted me. People don't realize how amazing it is when a baby's born completely healthy. My best friend's mother is a special-education teacher, and she sees so many different children with something wrong...

Anyway: the weather here is absolutely GORGEOUS, I was sitting outside this morning in a tee-shirt drinking my tea.

Sorry for the ramble. =D

At 11:50 AM, Blogger Fuzzylogic said...

The mumbai incident was disgusting and really very disturbing.I can't even begin to think how the poor girl would have felt,shame on all those perverts who didn't even try to help her and stood there to watch the fun.Its just depressing how bad things are getting for young women out there.
As for the Ashley treatment I feel exactly same as you,its a tough decision.My initial reaction was how could they do that to the kid,but then when you really give it a deeper thought its really very hard to deal with if I were to have such a kid,we can sit in judgement now but if faced with similar situation what would we do?It's a tough call!

At 1:42 PM, Anonymous Vi said...

A related article, sorry if you've read it already!

At 9:08 PM, Anonymous NZ said...

Don't know what to say - just hope that they should be able to live with their decision. It must have been tough.

At 6:37 PM, Blogger Sanjay said...

With the Ashley case, what people are missing is the fact that out govt here does very little in terms of services for people who are parents of severely disabled kids. To me that is the big issue here.

The weird weather could be just that ...weird, but global warming is for real.

At 10:10 AM, Blogger Something to Say said...

TAP: its a tough decision TAP - i defi wouldn't want to be in the shoes of her parents. Its like Sanjay says - in the absence of care options - its their way of caring for her.

Coffee: Tough and different - and probably thats whats causing all the uproar.

Vi: O yes, weekend was gorgeous - felt like spring. it was 72 in Boston.

Fuzzy: i think thats what most parents think - its a tough decision.

At 10:16 AM, Blogger Something to Say said...

Vi: There are so many issues rolled into the decision here - the need to keep Ashley safe from sexual predators, the need to constantly provide quality care, the need to give her some of life experiences while denying her some others..... its just too difficult to comprehend how huge their issue is. But this was a gr8 read - thanks!

nz: Tough tough tough - thats the wod almost all parents are using.

Sanjay: You're right Sanjay - their decision has its roots in the fact that - they and they alone have to care for their lil angel - and so they are doing what they think is the best. No government aid or programmes forthcoming - they are doing what they think is best

At 10:47 AM, Blogger Orchid said...

Paula Zahn did a segment on the same a couple of nights ago-did anyone catch that?

At 4:01 PM, Blogger Orchid said...

my bad...the show is on tonite. And i forgot to add this ealrier...I so agree with "not ebign judgemental about other parents" I used to be amused to see kids on a leash at aiports earlier..lets just say I don't think it is bad idea now.

At 10:00 PM, Anonymous OrangeJammies said...

this is going to run through my head several times during the course of the day and i don't know what i'll think of it even then. i only know i'll be hugging the kids i work with just that much thanks and gratitude. And I totally agree with you, far be it for us to judge the parents' decision. God knows it must be agony beyond description already.
Thanks for sharing..
And about the weather, yes, my notebook is still set to EST and I have Boston weather up on my page, so I've been following how wonderfully warm it is! :0) And if anybody asks me if it's time to cut those strings after almost a year of being in India, my answer in an emphatic N.O. :0)

At 1:43 AM, Blogger itchingtowrite said...

the decision for th eashley experiment must have been really tough but at this poin i think we must look at the parents poin of view. they hav been extremely courageous and hav kept the best interests of the child in their mind. i hav seen people take care of thei desabled children and belive me its tough when u hav a full grown child who cant even do the basics by themselves, it's v tough for the by then aged parents to do the stuff.

At 7:06 AM, Anonymous artnavy said...

Really tough decision- very easy to be judgemental.

At 4:52 PM, Blogger noon said...

Thought provoking. I just cannot imagine what the parents are going through with this. It is hard enough to go through something of this nature in they have to listen to public judgement on top of all the pressure they are facing in their lives. Well yes, public pressure helps keep a check on some things. But I wonder where one draws the line. I am sure as parents they would have thought of all possibilities and are doing the best they can. If there was a chance, they may have given her a chance. I would probably collapse into a heap in a situation like this. God! Why are some children created only to suffer till their death. Why are some parents punished like this! Every healthy child is such a miracle really.

At 11:30 PM, Blogger Usha said...

I think every parent decides what is best for their child under the circumsatances without being selfish _ so we have to believe this was the best in their circumstances although I cannot understand why some people have to be put through these. The child actually has no life and it is a constant pain for the parents to watch this day in and day out and medicine is far behind finding solutions.

At 1:55 PM, Blogger Something to Say said...

orchid: Didnt catch the show. Could you?

OJ: The one handed man realised he had the gift of one hand - when he saw a man with no hands. We just need to count our blessings for our healthy children. Touchwood.
And cold weather is back in Boston :( bah!

itchy: i suppose this is their way of caring for their child.

Art: Tough is the word!

noon - every healthy child really is a miracle. Touch wood for all our children's health.

usha: Why does God make some children suffer so? Who knows?

At 10:56 AM, Blogger tpraja said...

Have you seen the new India search engine they added all the cool features of popular products like MySpace, YouTube, Ebay, Craigslist, etc. all for free to use and specifically for India. Anyone else try this yet? First to Blend Search, Social Network, Video Sharing and Auctions Into One Seamless Product for Indian Internet Users.

At 4:17 AM, Blogger Gauri said...

The Mumbai incident was really despicable. As a born and brought up Mumbaikar I really felt ashamed that no one - despite there being such a large crowd - even tried to help the girl in question.

This, in a city which normally prides itself on having a very helpful populace.

And as far as the police go, I would say they make no diff whatsoever - if at all they do - it is in the negative. A while back, there were reports of policemen having molested a girl in custody.

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