Wednesday, July 09, 2008

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?

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24 comments:

Robert said...

It would be extremely difficult not to want the surgery for any parent who knew the failure to provide it would mean death. What if she were a brilliant child, someone who could perform high level mathematics, speak many languages, and perhaps already begin to understand something of science in a way that could help the whole planet... but at age ten it was discovered all these abilities stemmed from a life threatening brain tumor? It's always a quandry, should the one be willing to sacrifice for the good of the many? I agree with your perspective on autism, as I covered in my post, some autistic children have a special brilliance that they might not if they were "cured". Wouldn't it be horrible if they were, only to find they became functionally retarded... but wait, the cycle starts over.

Orson Scott Card, in his newest book, had a short story where he pondered what might happen to mankind if we ever found a way to live forever. He posited that human intelligence was the "disease" that kept humans from living forever, and once it was cured, they could be immortal. It was an interesting twist on the Garden of Eden, and I wonder how many people would be so keen to live forever if they had to do it without their mental faculties intact.

Enough thoughts for now.

Stephanie said...

Hi Julie,

I hope hope hope I get to write a post about this today. I've been thinking about it since you asked the question. I teach (taught) kids with disabilities, and the idea of what normal is, and what success is, came up all the time. A child who is loved and thriving, but will never graduate high school or live independently - is he normal? Is he happy? If he is not in pain, and enjoys his life, is his life successful? It depends on who you ask.

When Asher was born he had mild nerve damage in one arm. My pediatrician told me it would heal itself, and it did, but it took about six months before it was no longer noticeable. I thought a good bit then about what I wanted for him, how I could teach him what success was in light of a possible permanent impairment. I also thought about how I would handle watching my child struggle. I guess every parent wants their child to be comfortable, but as another blog pointed out yesterday, comfort is the enemy of change. Do comfortable children grow up to be empathetic, hard-working, compassionate adults?

I have more questions than answers. I hope I get to put all of this on my own blog this afternoon. It depends on how well the circus (I mean, my house) is running by naptime ...

wheelsonthebus said...

Great topic this week.

There was an article about 6 months ago in *Brain, Child* about the drive to fix autism. OK, maybe longer ago than that -- not sure. ANyway, you'd love it -- I'm sure you can find it on their website.

Mad said...

Back at the height of the Great Depression, a miracle happened in Northern Ontario. A mother gave birth to quintuplets: 5 girls born too soon but all of whom survived thanks to medical intervention and a transfer of custody to make them wards of the state so that their care would be paid for. Their lives were a metaphor for hope during one of the darkest times of the 20th Century. People came from all over the world to see these little miracles. The hospital created a pen so that the girls could be displayed to the public. The gov't sold tickets for years. The girl's lives became forfeit because of the symbol they represented and because that symbol allowed a community to prosper financially.

When I read about Lakshmi's story, I see a comparison to the quints more than I see a comparison to the realities that face the disabled. Whether we, as a society, decide it is right and proper to diagnose and treat disorders is one thing and the ethics around that fall on a sliding scale. I certainly would not give my daughter drugs to cure her shyness but if she were low functioning autistic, damn straight, I would seek every therapy I could find. It is, however, another matter altogether to treat human beings as metaphor. The quints lives were reduced to metaphor as was Lakshmi's. Now whether prosperity comes to a community because of faith or state, the principle that a person's life has been co-opted remains the central issue.

I am not a religious person and so I guess I find it hard to handle the goddess argument, just as I find it intolerable that a society would garner revenues from selling tickets to see 5 little girls who were taken from their family.

And yet, here I am trying to swallow the bitterness surrounding my own fertility. I see pregnant women at the grocery store and my heart lurches a little and I want to reach out to them and say, "Is this your first? Enjoy it. It is special. There is nothing like it on earth." In the end, it is almost impossible to not see certain people as metaphor at certain times but such moments of faith and longing should not be reified in such a way by society such that we restrict a person's ability to live according to the same cultural norms that others have access to. Doing so simply becomes another dreaded -ism (e.g. racism, ageism, class-ism...)

Mad said...

BTW: if you want to know more about the quints, you can look them up on Wikipedia or elsewhere online. They were called the Dionne quintuplets.

And yes, that comment likely should have been a post but I am lazy.

Melissa said...

I like the comment that comfort is the enemy of change. Kind of fits what's going on in my house right now.

As for Lakshmi, I've been sort following this and I'm just amazed at all of the opinions on it. I just don't know what to think anymore.

Great topic, as usual. Thanks for making me use that dusty ol' thing at the top of my neck this morning. :)

Gwen said...

Damn, I have to follow Mad?

One of the things I thought a lot about when we were in Europe is how different cultures value the individual, and how that value has changed over time, based on our scientific and technological abilities to prolong and improve life. It's only relatively recently, really, that *individual* life has gained such ascendancy, and even then, that's not true in every culture and society.

Just because we can fix everything doesn't mean we should, but the dangers of taking science too far also don't mean that we shouldn't fix what the thoughtful individual deems ethical.

I can't draw other people's lines for them, even if I believe I've staked out some moral high ground. I can only do what I've determined is best for my own very small sphere of influence.

liv said...

amen to what Gwen said: just because we can fix everything doesn't mean we should.

i wouldn't ever "fix" who my son is. he is my own delightful, special creature.

Mama Luxe said...

I always hesitate to venture into these discussions where I have little familiarity with the issue.

I agree that when it is life or death, it changes the equation.

I also think that whether or not there is a "fix," and whether the "cure" is more risky than the "disease" is another issue that needs to come into play.

The idea of plastic surgery to correct features that result from genetic abnormalities, when the child him or herself is largely unaware of his or her different features, bothers me a bit. Is this done to improve the child's life or the family's comfort? And what are the risks of the plastic surgery (to which that child cannot really give informed consent). That said, I have not had to walk a mile in their shoes, yet.

With autism, I think that there are so many complex issues at play. One is the fact that there really is no "cure" available at this time. So, I imagine I would personally find it easier to focus on accepting and celebrating my child for who she is. The other issue is that we aren't sure about the "cause" yet either. Is it something that is just a deviation from the norm? In which case, should we embrace it as another unique expression of being human? Or is it triggered by something we've introduced to the environment? And to what extent can we now, or ever, determine whether or not the child would want to be otherwise?

Right now my daughter has a scar from her open-heart surgery. No doubt having a heart condition will influence who she is in some way--possibly in very positive ways. But if I could make that condition disappear so she'll never need another surgery or have to worry about her heart, I would.

The scar, though...It goes fairly high and is visible in many of her clothes. The heart condition was a medical issue. The scar is cosmetic. If, one day, she wants to do something to reduce the scar, then we'll discuss it. But I would not do anything about it until she came to me.

EdT. said...

Your question is slightly different from the way you phrased it on Monday, but I like the additional example(s) - I think they help to frame the discussion better.

I also think a suitable follow-up could be to explore what are the boundaries of "reasonable accomodation" - where do we draw the line on allowing for differences between abilities/characteristics in individuals.

~EdT.

Robert said...

Yeah, Edt's comment goes to "slippery slope" concerns of "Well, since my child won't be six foot three, blond hair, and blue eyed, I need to have all that genetically altered... unfortunate what we do to fit an ideal.

thailandchani said...

I'm having a hard time with this, simply based on the fact that I come from a different philosophical backdrop than most people here.

Hanging on to life at all costs, trying to create an ideal at any cost, seems truly bizarre. So bizarre that I can't even frame it enough to discuss it intelligently.

It seems as though that lends it some credibility.

I've talked with people who have a basic eugenic viewpoint, that science or anything else available should be used to create the best human being possible.

It sounds like a combination of Hitler and Mengele.

Unless something is truly life-threatening or creates an untenable life situation for someone, leave it alone.

Accept imperfection and perhaps even find commonality in it.

We're not all that different.

Different cultural bias, I know...

Blogversary said...

Great discussion.

I think it is okay to do things medically and with therapy that will provide a bit more ease and comfort for anyone.

But, how for does one go? Is a question that will always be at the forefront ethically and morally.

I find these discussion most interesting because our own beliefs play such a big role.

Robert said...

Wall-E certainly seems to have something to say about where humans are headed. I wasn't terribly pleased with the movie because it didn't seem to be terribly "kid" oriented, but it does paint a dire picture of what we might become if consumerism rules the day forever. Wanting everything to be perfect in every way goes right along with those thoughts.

Gina Pintar said...

Why is it ok to use science to "fix" cancer, heart problems, abnormalities or broken bones for that matter but not autism? Autism has some medical issues that go with it that if treated greatly increases the quality of life for these children. If I sat back and just accepted the psychologicaldx of autism my son would still be in pain, have diarrhea, not be bathroom trained, be zoned out and not in a state for any learning. By treating all of this he is happy and able to learn. I love him for who he is and what he can do but I will not sit back and not treat him. I am not looking for a cure, I am not trying to FIX him. I am trying to help him be the best child he can be. Isn't that what the rest of you are doing for your children?

Robert said...

Gina,

I think what you're talking about is wonderful. The idea of helping your son learn to deal with the world through his own perspective seems very much in line with what most of the people here are talking about. Trying to find a cure, though, that is what disturbs some because it does not appear to have one. I hope none of my comments on the subject have offended you.

Mamma said...

I may have taken my post in an entirely different direction, but the thought was just what I needed to find my words again.

thank you! thank you!!

jeanie said...

As usual, I had lots of interesting blog posts whirling in my head to your prompt, saw something shiny and totally forgot.

I am often afraid of who the "normal police" should be. If there is a medical issue, then fair enough, Western values have their place - but there are charitable institutions in place who will fun your breast augmentation if you are willing to flash them - is that normal? To some, it is the higher aim.

Silverstar said...

My disabilities can't be fixed. Well, one of them could, maybe, but my doctor feels I would endure the surgery only to have increased rather than decreased pain. So I live with them. I have no choice.
I would fix them if I could be reasonably certain I would end up with more mobility and less pain.
I live in a building designated for disabled people. I know their struggles. It's true that what doesn't kill you makes you stronger. Sure, we should fix things, but only if it will make life better for the person. But maybe we should take away the barriers that affect the person, (because they probably affect a lot of people) instead of fixing them.

Kyla said...

I think that at the point of intention, whatever decisions are made should be in the affected person's best interest.

KayTar isn't autistic, but she shares some qualities of it, and the Cure Autism thing kind of chafes me. I don't want to CURE her, I want to do everything in my power to help her be the best her she can be through therapies and such. I love the quirky little person she is, I love discovering new things about how she sees the world and functions in it. In no way do I want to cure her of that.

And of course, I don't mind sticking her hearing aid in to help her hear...if she needed CI, I'd do that too. Not because I don't want her to be different, but because I want her to have EVERY opportunity she can.

The things I wish I could "fix" for her are the episodes, which are so terrible for her...and the feeding problems, because that can be dangerous medically, too. But I don't mind her being her own special sort of person. I quite like her and her wee quirkiness.

le35 said...

I really struggled with this. But I have posted a Hump Day, and through it, in some ways, I have just created more questions. Thought provoking and well done, Julie.

we_be_toys said...

I went and read the story on her and watched the videos, thinking of what you had said about intervention, modern medicine, and our need to "fix" everything. I got so far in, I think I forgot to come back and comment!

I think if it hadn't been for the fact Lakshmi's health was compromised by the conjoined twin, her parents wouldn't have had the surgery. For them, she was perfect, as is; she was the embodiment of the goddess. I kind of envy them that assuredness of faith, that all is as it should be. From the western point of view, where we nip, tuck, enhance, botox, liposuction, etc. it might seem an aberrant(sp?) choice, but I think her parents' acceptance of her as she was is something we should take a page from, and apply to our own warped societal need to fix or change to acheive some false perfection.
(Whew! Did that run on long enough for ya?)
Good set of posts - very thought provoking!

TwoSquareMeals said...

I'm a day late, but I was really excited about this topic. My husband and I have been talking about it a lot lately. I do think medical intervention to improve quality of life is a good thing. I don't think medical intervention to make people fit our mold of normal or acceptable is was medicine is intended for. In fact, it is a corruption. Thanks for the great food for thought!

Angela at mommy bytes said...

I'm finally in a week late, but it's now hump day again!
http://www.mommybytes.com/2008/07/autism-revealed.html

I'll be checking out all the other posts now.