7/13/2013

Thoughtful Dialogue Instead of Sanctimonious Tearing Down

This is a tale about a normal day in the autism community online: someone bares her/his vulnerable self in a gutsy post that gets people to consider all the things we keep buried inside because it shows the human side of us, the part that's frail and not always noble. This post divides people into two groups: those who appreciate that the blogger has expressed a truth we share and those who see the opportunity to show how much better they are than the blogger.

I know both sides of this. I'm not ashamed of my vulnerable, weak human side that feels jealousy at times. Right now, for example, many of my childhood friends  are watching their children leave home, go to college, fall in love, get married, and become parents, making my friends grandparents. I'd be lying if I said there isn't a sorrow I feel and twinges of jealousy for experiences my oldest isn't experiencing. I'm human, so it's to be expected. I acknowledge these feelings so that I can set them aside and focus on what I do have: the blessings of being close to my son, of seeing him everyday, of talking to him, of watching him play for hours with his sisters, all of them entangled in each other and being incredibly joyful in their play, and when I do that, the jealousy slides away and I am grateful. I am all the more grateful because I  went through that process.

As I said, I know both sides of this, as a blogger, as a person. I've laid myself bare and been eviscerated for it. There's a visceral reaction to seeing someone take your words, your emotional reality, and either misrepresent it or just flat out tear you apart. Your gut is twisted in knots, your heart feels constricted, there's a lump in your throat, and you look around for cover, alternately wanting to hide and attack the person who has done this to you.

I've also been that person to do that to you. This I continue to be ashamed of. Because we disagreed on vaccines and I thought the treatments you were using and the language you used to discuss your child was appalling, and because you wrote at Age of Autism, I felt obligated to point out to the world how awful you were. Hubris.

Instead of recognizing where you were in your journey, how much you were hurting, how desperate you were to help your child, yourself, your family, and respecting your emotional reality, I attacked and made your life worse. I made your body react in that same visceral way.

I felt entitled since facts were on my side, and I'll be honest, I felt morally superior, as I would never be desperate enough to put nicotine patches on my child, put mining chelator on their cereal, or use a product that promised a miracle cure but was in reality bleach.

We should be horrified at quack treatments and work hard to warn people, but we shouldn't do that on the backs of parents who've believed in the lies of the snake-oil salesman.

We sure shouldn't cloak ourselves in our perceived moral superiority and go on the attack, taking people apart, line by line, word by word, until they are left in a crumpled pile with the decision to either give up or get angry.

I've been on both sides. Despite the potential pain involved in being the one to make myself vulnerable and admit my humanity, I will always choose to be the first type of blogger rather than ever being the second type of blogger again. That doesn't make me morally superior, nor does it make me a saint. I just can't be that second type of blogger, knowing what it does to the very real people on the other side of the computer screen.

There has to be a way to have thoughtful dialogue where we can discuss how something we've read makes us feel without tearing the other person down, where we can work on our common humanity and frailties and find a way to build each other up, to soothe the pain, to lessen the distrust, to make all of us feel we really do have a place at the table and that our words, our realities, matter. Maybe that way, we'd have a chance to explore the places we feel most vulnerable and ashamed and let those things go so that we can move forward, cleansed.

7 comments:

maternalinstincts said...

I blame you for my not napping right this minute. But this was worth staying up to read. :-) Love it.

Phil Dzialo said...

You truly express a reality simply as it is...wonderful post!

farmwifetwo said...

They've been attacking each other the entire 8yrs I've been in "autism-land" online.

Yawn!!!!

farmwifetwo said...

Oh... and google chrome kicked me out of your ABD... one of the bloggers is a distributor of malware... or that's what it said.

K Wombles said...

Thanks, @maternalinstincts and @Phil.

fw2, I figure the arguing will keep going on long past us.

I've gone to abd on google chrome several times since you posted, and it hasn't popped up malware. If it happens to tell you what site is the problem, I'll try to resolve it.

Roger Kulp said...

I only started reading your blog again on a regular basis a couple of weeks ago,and have been wanting to post something.You are taking this blog in a better direction,and may be helping a lot of other parents.

I'm sure you read Harold Doherty's blog,where I comment frequently.You then know that I have a diagnosis of cerebral folate deficiency syndrome.Your post here made me think of the angry uproar I caused last year in the Yahoo autism groups where I posted and told everyone I officially had CFDS.I eventually left all but one of these groups.Instead of getting people tell me how wonderful it was that I had suffered so many years with so much horrible s**t,finally found a cause,and one that could be treated,there was an awful lot of angry jealousy,a lot how implied how dare I,an adult,get such a diagnosis,when their children did not.Never mind that I had been posting all along about all of the other positive metabolic and genetic tests I had that had found serious folate problems.Tests for almost three years leading up to this diagnosis.

It was then when I said screw these people,I don't need them,or their attitude.

I don't know just how old your son is,but when I was 19,my mother,my sister and I moved from Florida to New Mexico.I had gotten my first autism diagnosis some years earlier in a school setting It was an especially traumatic thing for me for some reason,and it was the only time I had a regression not caused by sickness.Something happened in public,and it led to my having my having an evaluation. It showed I was functioning on like a six or seven year old level,but without ID.To the those who don't know about neurometabolic autism,that may sound as weird as it seemed to people who evaluated me in 1980.

I lived with my mother until she died last year,as I suspect your son will with you.I see a lot of positives in families that choose this rather than dumping their kids in a home.Because my mother chose this,I was able to live long enough where medicine had advanced enough that I could find a cause and treatment that allowed me to live on my own.

Yaumara Lindo said...

Wow! I am new to your blog and a follower. I am blown away by your words and honesty. Thank you so much for sharing your feelings. I am sure we can all relate some way or another.