Autism, Deafness, Down's Syndrome, and more: Are these children broken and in need of fixing? A Hump Day Hmm for July 9, 2008

When Patience was a baby, her colic didn't end at three months like everyone promised it would. My mother and sister, both more experienced at mothering than I, insisted I ask about reflux, again, despite my doctor's continual waving of her hand dismissively. I finally got the doctor to listen and we did get a reflux diagnosis. Ah blessed quiet, blessed sleep. Unfortunately it took over six months and by then we were half delusional from stress and exhaustion. But never once did I question medical intervention because something was wrong and that created a quality of life problem, therefore it needed to be fixed.

I watched a friend from playgroup get a patch for a lazy eye for her child, another get glasses for her toddler, another baby needed a helmet for a skull not growing correctly, that baby needed surgery to correct a hernia, this toddler was getting tested for developmental delays...from birth, we learn of human imperfection.

Here, in our culture, we don't rely on superstition or belief to deal with that imperfection. We rely on science and medicine to fix it.

Every now and again, that reliance runs into an ethical snag. I can think of two examples that illustrate this well: Lakshmi's story and autism.

Autism
The big debate in the autistic world is the word fix.

There is a large movement---with Jenny McCarthy as spokeswoman, fortunately or unfortunately depending upon how you look at it---that speaks of curing autism.

For many, this brings hope. For many others, it brings frustration. Some parents believe their child is as he or she is, and the best they should do is help their child learn to manage as they are.

Every parent I know who has an autistic child pursues every therapy that seems reasonable and that they are advised to do to help their child. All parents want to help their child, whether it is minor or major.

The debate point comes when parents have different ideas about when that help and intervention is needed.

I won't go on and on about this, largely because it's its own topic.

But I pause and think of autism, of deafness and the movement to not use Cochlear implants, and also of cosmetic surgery to correct Down's syndrome facial features, when I think of how people define broken, and determine what needs fixing. That involves cultural issues and beliefs, just as Lakshmi's story does.

Lakshmi's story
In the end, it's a matter of Lakshmi's health. The parasitic twin ultimately would have compromised her ability to survive, so they did do the surgery, successfully, and the story is everyone is very happy. She's walking on her own now, and living the life of a pretty normal little kid.

Kyla posed two interesting questions in her comment (some amazing comments, by the way, thanks all): Do her parents want to keep her this way for her own good or because of perceived favor of raising the reincarnation of a goddess?

I replied: I'm not sure her parents distinguish those two questions. I believe, from what I saw and heard in the documentary, that her parents believe the goddess came this way for everyone's good. I believe her parents believe the child was the reincarnation of the goddess and thus was born as she was for good cause, and came as she should be.

Medical science may be able to explain the how, but for them, the why was more important and their faith explained that.

Even in Western culture, we can revere and hold fast to the idea that things happen for a reason.

From a pragmatic point of view, you can argue this child came into a life that was hard, and any other deformity might have meant death instead of reverence.

However, there is no disputing the good her birth brought to those around her, because of faith.

I approach these sorts situations with such a Western mindset that it was intriguing to consider that sometimes the why and the how, and most importantly, the what now? are not always that clear cut, and what might be best for an individual might not be best on the whole. The difficult question is: what weighs more?

I don't have any answers, not clear cut anyway. In fact, the documentary was a bit mind-blowing due to the ethical question and "open your brain up to a broader perspective than your own narrow one" point it conveyed. In fact, I stopped my last post at the philosophical tipping point for me---before the decision had been made and action taken about what to do---for good reason: to provoke discussion without playing the "but it could kill her" card, which ends all pondering since nothing trumps that. In that case, it is life and death, not just welfare or quality, which are elastic to some degree.

In and of itself, I think the clear right thing to do was operate on Lakshmi and do the best thing for her. But the Western mind is truly all about the individual, and sometimes we barely pause to consider these things within the continuum where it does, in fact, fall.

Lakshmi's story made me pause and ponder that continuum. To my mind, in a way, once that happens, it's almost irrelevant what I think about her getting the surgery (I'm glad she did, for the record).

I don't know what happened to the village or the prosperity.

I imagine, in the end, once people believe in her, it might not matter that much that she now has just the normal number of limbs. I think once you let yourself believe something like that it's really mind-opening and even if that thing isn't the belief any longer, you know you are willing to believe.

So the spiritual prosperity probably remains.

It's chicken-egg, but you know, she clearly had a special destiny.

What do you think?

Link to this post or blog, and come add in the link to your post on this topic below:



Copyright 2008 Julie Pippert. Do not reprint or reproduce without permission.
Also blogging at:
Julie Pippert REVIEWS: Get a real opinion about BOOKS, MUSIC and MORE
Julie Pippert RECOMMENDS: A real opinion about HELPFUL and TIME-SAVING products
Moms Speak Up: Talking about the environment, dangerous imports, health care, food safety, media and marketing, education, politics and many other hot topics of concern.
MOMocrats