8/13/2010

Tone Deaf: Finding Ways to Honor the Dead and the Living

This isn't a topic to be snarky about. It isn't. Gods, and we should try to avoid being holier-than-thou about it, too.

It's a serious matter, as on it rests the heartbreak of far too many families. I think it is important to see this heartache within the larger context of the larger society, and to place it in perspective, so when certain places have used the tragic deaths of children or adults on the spectrum to push their own agendas, I've tried in previous posts to tie those death to the larger population.

I am not philosophically opposed to a site that is a compassionate tribute to those who have lost their lives. There are many such sites out there and they can and do serve valuable purposes in allowing families to offer tribute to their lost loved ones, for readers to show compassion.

There is yet again another divide. One one side, well, the usuals line up, and on the other, of course. It's like we're on teams, just waiting to suit up and engage in battle.

I could quote from both teams. I could. I could rip into the other team. I won't.

What is obvious is that both teams can be tone deaf at times. Both bring out the extremist in the other, or at least allow it to go on full display. It is often not a pretty display. Oh my.

Here is what I'll say about Ginger Taylor's attempt to honor those with autism (hah, well, it's not really that, is it, when one of the latest additions is about someone with autism killing another person) who have died: see in the parenthetical you've seen the problem.

The site is called Lives Lost to Autism. And along with the tone deaf addition of autistic individuals who have killed, children with autism who have been murdered by their parents are included. And we see that either there is this incredible tone deafness or intentionality, the belief that if the children weren't autistic, they wouldn't have been killed, hence their autism is to blame for the deaths.

I've already given some mathematical reasoning for the supposition that the number of filicides involving autistic children doesn't exceed 1% of the number of children murdered by their parents in the same time span.

Let's assume that the thought, the feelings, the agenda behind Taylor's site was genuinely to do good.  In fact, let's assume that none of the parents on the other team intend harm, that they are not the bad guys. Let's assume that their intentions are good, that they are scared shitless that vaccines are killing people and causing illness and that they are frantic to get the wider world to realize this. When you view their actions from their position, what they say, what they do, how they act all make logical sense.

Yes, we think they are incorrect in their assumptions and oftentimes beyond the pale in their actions. And we have good reasons to believe so, we even have empirical evidence to back up our reasons on most of their assumptions.

They, believing their logic and the sites that feed their mistaken assumptions, are overcome with a fervor that grows over time, especially as the mainstream pushes them farther into the fringes. They grow even more certain of their convictions.

There isn't a damn thing we can do about this. We cannot reason them out of these beliefs. We cannot conciliate them out of them, either.

We work to contain them, to not allow the metaphorical contagion to grow. Yeah, well, that may not work either.

We can not change them. We can not join them. Yelling at them does no good, except to make them more sure of themselves and more hostile.

What do we do?  If we can not change them, can we lessen their hostility? Hmmmmm. I don't know.

What I know is that those on the extremes of this issue will go on hammering each other, trying to obliterate the other. We can choose to be a hammer. Some days, perhaps there's no choice.

Or we can try not to react to their extremism with extremism of our own. We can try to find the middle way. Yes, we're going to get off that path, as we are human, but we can try to get back on it. We can actively work to be compassionate to all people, to see the beneath the angry rhetoric to the pain that ultimately guides their actions.

Consider how you would feel if you believed as they did, if that were really your world view? Oh my, you would be filled with rage, with fear, with despair. You would need to lash out, to take swipes at, to make someone hurt for what they had done. It doesn't matter that we reject their explanations; that only increases their despair and their rage.

I'm not suggesting accepting their version of reality. I don't think that would lessen their pain. Or their hostility. I guess what I'm suggesting is what my good friend Louise suggesting last year: that we consider the source, that we examine closely the person and his situation before attacking and ridiculing, that we show compassion.

Thelma and Louise named their site Even Dumbasses Have Feelings for a reason: the realization that people we think are dumbasses: misguided, misdirected, and mistaken individuals, still have feelings, and we ought to be able to find a way to remember that, to display compassion and acceptance of their personhood even as we go about demonstrating why and how they are misguided, misdirected and mistaken.

Perhaps, perhaps it's possible that this (the lives lost to autism site) site reflects some of their deepest fears. Maybe to them autism is a dark entity that robs everything in their lives of light. Yes, they are tone deaf, at the very least, with no apparent concern for the actual living, breathing autistic individuals who identify with their autism and will see that site as a fundamental rejection of their humanity. Maybe they don't see that this site, a collection of news reports and photos of individuals, real people, could cause surviving family members tremendous pain.

Obviously, hammering away at them won't get them to reconsider their actions; it only serves to entrench them.

We should honor those who have died. We should show compassion and respect for those who survive. And we should remember those who are alive and witnesses of our actions. Our children watch. And they see, and they process, and it is for them, ultimately, to judge us. Did we serve them well? Did we make the world a better place for them? A safer place for them? Or did we help to make the world a little bit uglier? A little bit meaner? A little bit darker?

11 comments:

kathleen said...

I don't know what the answer is..I don't like that site..I'm wondering if there is any other site on the net that promotes the same type of idea? I really hope not. I agree lining up and yelling at each other-well, no one listens. Everyone feels good for having yelled. It is a repetitive cycle in which nothing is accomplished...sigh..

Sirenity said...

I do hear your words Kim. I think though, that trying to sugar coat and be nice sometimes gets in the way of being honest. When dealing with the sort of mentality that one can find at the icky place, trying to be kind is crippling.

Options are limited.

We can ignore them. I don't believe that is a good idea. Such hatred and misinformation needs to be countered.

We can rebut them gently and hope that the truth hidden amongst the flowers comes across.

Or we be honest and blunt. Which gets the idea across but creates more rifts.

Open to suggestions, I really am. But in all honesty I have no desire to make peace with a group of people that work so hard to make others believe that autism is the root of all evil-that children on the spectrum are lesser.

It's plain wrong, regardless of how their feelings get hurt hearing us say it.

lifewithasperger said...

I understand what you're saying. We should try to be empathetic to the pain and fear that drives them. But truthfully I don't think they want empathy. They want compliance, and acquiescence to their ultimate rightness. And I'm not sure that if they suddenly got that, that they would then be less vitriolic. I think even if they were proven right they would be self-righteous "I told you so's"..still not offering any hope or solutions. I mean, after all, what's the most common theme in the threads? "Autism is hard beyond belief, and dark, and ugly and everyone needs to start recognizing that." Well what is that really? It's "I'm right, and everyone needs to acknowledge my rightness." Not very productive IMO.

KWombles said...

All great comments. I'm not suggesting singing kumbaya with the worst of the worst over at the angry place, nor of ignoring the damage their words can do. Nor of making peace with them.

I'm all for bluntness and honesty and I don't believe in sugar coating.

I guess what I'm trying to suggest is that, lest we become mirror images of the angry places, we remember their humanity. We're asking society to accept, appreciate and accommodate for our children, for people with differences, for compassion and respect for their humanity.

If we then turn to the people who spew the vitriol, who darken the world with their very rhetoric, and we treat them in the same way, with vitriol and hate, we are not walking the walk.

If we fail to demonstrate compassion for our enemies, and some of these people are indeed our enemies, then how are we different?

I'm not concerned with giving those individuals what they want; I don't believe they want empathy, compassion, or respect. Those folks on the extreme edge want victory. Want submission. Want our utter surrender.

I'm not even really talking in this post about Age of Autism and the bloggers on the other edge. I'm talking about the folks closer to the center, the ones who think maybe it was the vaccines, who turn to alternative med and quacks because they don't know where else to turn. I'm talking about reaching out to these people specifically.

If folks are interested in making the world a better place, in respecting the innate humanity of all people, then I guess I'm trying to say I can live with a little bit of woo, that I don't have to hammer my point down their throats.

I'm suggesting that contemplation, deep reflection, these are good things. That avoiding knee-jerk reactions to the angry places is something we ought to aim for, that when we can't and we feel we must go on the offense that we consider our words and focus on reason and rationality and see where and when that is the best course. And hell, when it's not, let the snark fly, just remember, as T and L do, that even dumbasses have feelings.

Sirenity said...

Kim,
You are my hero. Where you get your patience and endless compassion I do not know.

Hugs and laughter

Roger Kulp said...

I think you're all missing the point here.I went to the blog in question,and I think it's a great idea.I didn't read it that much,but all I see are a bunch of news stories,about autistics who died,as a result of either being killed by their parents,being trapped in fires,or died while "running".I think it's a good thing to have all these news stories collected in one place.I know there are some whose whole aim is to "celebrate autism",but we need to be a little more realistic here.When ASAN publicizes a news story like those saved here,everybody thinks its a good thing.

Such an archive can only be what you make of it.We know the people at The Angry Place are going to use it to further their agenda about autism "stealing" their children,and a "fate worse than death",and all that crap.That is to be expected,it's what they do.It's every bit as predictable as a politician,or a corporation breaking their promises.We need to have such an archive,especially one as unbiased as possible,so we can see what the problems are,and how to solve them.Whether it's helping parents learn to better cope with an autistic,or other disabled child,helping to raise awareness of autistics among police and firefighters,so they can learn how to properly treat them,or to make people more aware of eloping or "running",and hopefully find as many was as possible to prevent it.

As you know I am a former "runner" myself.In some cases,maybe most,running,or eloping is due to an underlying neurological problem.Something physical going on in the brain,as it was with me.I can tell you it began,when I was three years old,right at the time I learned to walk,and continued up until July of last year.It was episodic,like seizures,as is often the case.I would start walking,and then black out. During these episodes I was non verbal,and often had no idea what I was doing.I would come around hours later,with no idea how I got where I was. Very much like someone with Alzheimer's or dementia.

As you also know,last year,I was found to have this MTHFR/folate metabolism disorder.It is somewhat similar to those seen in Down Syndrome.Down Syndrome patients also elope..MTHFR disorders are known to cause dementia like syndromes.Years before I would go on to develop heart failure (In my late teens.),megaloblastic anemia,metabolic strokes,arteritis,and homocysteinemia all would come later.All are due to MTHFR/folate metabolism.But I now know these episodes were no doubt the first of my problems.The eloping stopped very soon after I started on both MB12,and folinic acid.That was a year ago.

They believe as they do,because they are closed minded,and willfully ignorant.It's just that simple.If they were wiling to drop the vaccine nonsense,the belief "autism stole their perfect child",and accept the fact they have a child with birth defects,they might be able to find both some peace of mind,answers,and begin to build a better life for themselves and their children.

/Sorry for the long rant.

kathleen said...

actually Roger, I think that you missed a very important point..Kim was saying that a tribute to those people was a nice idea-BUT that saying those children were murdered BECAUSE OF AUTISM was not.That in fact it was wrong...

Big said...

Arguing with extremists is like teaching a pig to dance. It's a waste of your time and it only irritates the pig.

Unfortunately, when the extremists start to exert some power and influence, then this hands-off approach sort of fails.

I know my son is a beautiful addition to this world. He poses no danger to anyone and I couldn't imagine anyone wanting to hurt him.

Autism is not the cause of the violence in these recent news stories - violent people are the cause. The narrative could have played out exactly the same if all the parties involved were left handed or cross eyed or blonde. Just as it is not hair color that caused these calamities: its not autism that caused these horrific events.

Hope that made sense. If not, I'll blame my son's autism - seems to be a pretty popular excuse these days

Clay said...

I've pretty much had it these people's belligerence, willful ignorance, arrogance, deception and self- promoting propaganda. I just can't stomach it anymore. I won't go around attacking them and making a bad situation worse, I'll just ignore them and mind my own business. I'm sick of it.

astridvanwoerkom said...

I agree with Kathleen - it's a very good thing to have a memorial site for autistics who died, but not a good thing to have their deaths attributed directly to autism. Joel Smith used to have a memorial page for autistics murdered, which didn't blame the deaths on autism. Besides, a memorial site ought to include more than news stories - what about condolences to those left behind? It may be my lack of empathy, but I fail to see how a site like Lives Lost to Autism can be a good memorial. Maybe it was meant to instill fear, which I hope it won't.

Clay said...

I think the site gives any reader the impression that "NO good comes of autism", only these terribly tragic deaths. Given what's there, I can't see anyone coming to any other conclusion.