Thursday, April 28, 2011

Community, What's a Community?

Surgeon Generals Warning : Reading this rant might be harmful to your health.  If you are easily upset, really picky about negativity, or suffer from high blood pressure you may not want to read this.

Let me say up front that this post is me being just ever so-slightly petty.  If you don't want to read what I write when I am at my, ahem, "best", I suggest that you skip right over the body of the post and just read the last little bit, my single serious point is there.  Or better yet, don't read any of it and we can pretend that this post never happened.

Still here and ready for a good rant?

OK, lets talk about ideas and being right or wrong.

I am willing to keep an open mind on just about any subject and I always try to stay open to the idea that I could be wrong.  I try very hard to be consistent in what I say although, to be honest, you will sometimes hear logic sobbing softly in the corner as I tie it up in knots trying to remain consistent with myself.

I also tend to advocate strongly for what I think is the right idea.  Sometime I do a good job of it and other times, well, lets just say the result aren't pretty.

Nobody's perfect, right?

Having said that, nothing gets under my skin like hypocrisy.  I don't particularly care what you think is true as long as you stick to your beliefs.  Nor do I really care if you decide to change what you believe in.  I am not one of those people who think that you can never change your mind.

But what really drives me nuts is when someone pays lip service to an idea but then their actions show that they don't truly believe it.  It also drives me nuts when someone gets up on their high horse only to resort to mudslinging.

To use a very bad example, it is like when someone claims to be a good christian and then turns around and is the most intolerant person.  Its like saying I treat everyone with love and respect, except him, he's a homosexual and that's a sin.

Wow, how many bad stereotypes did I use just then?  If the PC police are out in force today I might be in trouble, but hopefully you got the point.  (And no slight to christians intended)

Your statements and actions need to agree with each other.

Anyway, all of this is a (slightly convoluted) prelude to put what follows.  For the context of what I am about to talk about (and my own less than ideal performance in this matter), see the comments here and here.  It might take you a while to read through the first set of comments, so I will wait.

Done reading yet?

OK, I am posting my final response to Kim's comment here because I think it is important to understand just why the autism community is divided and how nasty the divide can be.  That and Kim promised to delete my comment there (yeah, I got banned, again).

The community is divided because we all believe different things about autism.  I personally believe that is a profound medical disorder that needs to be cured.  Others believe that it is a natural part of who a person is.  And then there are the sixty other view points as well.

But we all want the same thing which is a better life for our loved ones who have autism.  And sometimes we get so invested in our own positions that we forget this.

Since I am currently quite invested in my position (and decently annoyed), I am going to break one of my own rules and make my some personal comments against someone who I feel is hypocritical.  I really don't like to do this, but every once and while you just have to rant.

(Wait, doesn't that make me a hypocrite too?  Note to self, write angry rant about angry rant, decry self as double hypocrite.)

So here you go, me at my best.  Kwombles, this is for you.


Aw shucks.

The problem, Kim, is the difference between actions and words.  You write that you believe something but then your follow up comments show that you don't.

You say "I'm all inclusive" but then follow it with something like "I can't believe those dumbasses think that GI problems could be related to autism", that you aren't interested in "speculation".  You say you prefer "I don't knows" and then immediately label everything that falls into the grey area where knowledge is lacking as "woo".

You say you welcome opinions and then immediately launch personal attacks on people who have different opinions.  I think that the PBS did a good job with their Autism Now series in spite of the fact that no person with autism was directly interviewed, you say that means I lack empathy for people with autism.

You say that you keep an open mind and then reject everything that isn't "proven" via science.  Science isn't black or white and it isn't about absolutes.  That goes double for soft sciences like medicine and quadruple for even softer sciences like psychology.  Science is about seeking knowledge, not about wielding isolated facts like a club to silence those you disagree with.  It certainly isn't about a question being "asked and answered".

I think my favorite thing was how you like to promote this image of having an open discussion about ideas and then immediately turn around and label everyone who disagrees with you a dumbass.


If you made it this far, let me ask you two questions.

Does the part about hypocrisy make sense now? It seemed to be a little bit of a stretch when I was writing this so I wasn't sure if it made sense.

And more importantly, do you think this post would come across a little less harsh if I posted some pictures of flowers in the middle of it?

No?  Ok, I didn't think that would come across too well for me.

Ahem, now that I am done being an ass and feel better worse, lets get to the serious point.

Serious voice

The above sorts of exchanges are all too common in the autism "community".  Everyone is guilty of doing it to a greater or lesser degree.  I know that even though I try and avoid it that I sometimes get roped into it as I did above.

It is very hard to read something that is the complete opposite of what you believe and to not comment angrily.  When it is a loved one or yourself that you are arguing for that gets even harder and accusations start flying at the drop of the hat.

I think the thing that set this all off was the use of one word - "offended".  Kim was "offended" that the PBS show didn't include interviews of people with autism.  I thought the show was excellent as it was and assumed that Kim was attacking it simply because she didn't like what the show had to say about autism (p.s. for some of us, its called the reality of autism).

But, after listening to some of her reasons, I have to conceed that having an interview with a moderate functioning person with autism would have been a good addition.  However, that lack certainly didn't make the show "offensive".

Wait, who am I kidding.  I still think that she called it "offensive" because she didn't like the side of autism that it showed.

The show was a ground breaking look at what life can be like when your children has autism.  It reflected a lot of what our family life is like - the challenges, the worries, the "other" medical issues, the fighting for appropriate supports, and the stress for the future.

Autism isn't just about the people who have autism - it changes the lives of EVERYONE in the in the family - and these other people have a right to have their own opinion of it without being told that it is somehow wrong or "offensive".  We should be able to talk about how autism can truly fucking suck some of the time without people jumping in and telling us we shouldn't say bad things about autism.

Maybe if the general public had a better picture of what autism can do to people who have autism as well as their families we would be able to get some better help.  Instead we have the autism community tearing itself apart with some of us saying "wow, this sucks" while the other side saying "shhh, you can't say anything negative about autism because that would give the wrong impression".  Its no wonder we can't get along.

P.C. Editors Note : Saying that autism sucks is in no way, shape, or form implying that people who have autism are defective, broken, non-human, or any of the other typical BS that gets assumed.  A persons is a person, not a disability.  Nor is this a denial that people with autism have a right to speak on their behalf, either.  Nor is it saying that I don't love or accept my children for who they are.

Oops, a little bit of the rant managed to find its way into the serious section.

So if you go back to the "offensive" word you might see were the problem came in.  I didn't realize it myself until I stopped to think about my own reaction.  Show = Offensive, My Life =~ Show, My Life =~ Offensive.

I am (mostly) sure that she didnt mean to imply that but it is an example of how easy it is to take offense at something without realizing why.  I still think she is way off base with the idea that the PBS show was "offensive" (did I mention I am stubborn too?) but perhaps I should have approached the subject differently.

You live, you learn, and you move on.

So, consider this a plea for civility from someone who is equally guilty of not always being civil.

Except you Qwibbler, you can bugger off.


  1. Such a well mannered and yet passionate rant. Anyone would think you were British :)

    I'm beginning to think meaningful friendships, discussions and communities are virtual impossible in the virtual world...

    One step forward for technology, two steps back for humanity.

    It's time for both of us to hit the Jack Daniels.

  2. Your portrayal of Ms. Wombles is spot on. She laughed at me when Clay Adams mocked and ridiculed my disability, then tried to put spin on it.

    Anyone who does not agree with her is called "dumbass" "asshat" or similar variations.

    I suspect Ms. Wombles is so unhappy about having a severely autistic son has driven her to this and her attitude and finds offense at trivial things. This has also likely caused her to embrace neurodiversity in what a Freudian would call reaction formation which is a defense mechanism I have written about on my blog.

    It is interesting that you use christians as an analogy here because I think that something that Jesus said in the new testament may apply to Ms. Wombles.

    There is the old saying "Don't cast your pearls before swine" This old christian saying may apply to your post and Ms. Wombles.

  3. Autism Sucks! OCD sucks! Anxiety Sucks! Migraines Suck! My kid has all of the above and that just sucks.

    I have had anxiety in the past and don't even get me started on my chronic migraines. It really sucks!


  4. Don't.Fudge.With.Kim's.Flower.Pictures, AJ...that's all I'm sayin'. I don't wanna hurt you.

    Y'all are stubborn as mules. Just like me, so it's an equal opportunity expression.

  5. On numerous ocassions, I have written about the hypocrisy present in the online autism advocacy movement. Kim has been the subject of more than one of my posts, as well. Much like you, MJ, I cannot stand hypocrisy, and she is most certainly full of it.

    So, she banned you? Is that right? But she's for the open exchange of ideas? I read your comments over there and noticed that it was a bunch of self-professed aspies taking your words out of context, building strawmen on what you said, and then attacking you for something you didn't even say. It was downright silly, to be honest with you.

    Kim is probably at the top of the internet hypocrites. This is someone who claims that she is open and inclusive to everyone, but then mocks someone for their disability (like Jonathan), or laughs at a parent who wrote about his son's first word in 5 years (me). It's easy to dismiss her because of her rampant hypocrisy. And in the end, she really is a nobody who so very badly wants to be a somebody.

    My grandmother had a saying,"if you want to wallow with the pigs, be prepared to get dirty." She leaves the impression that she is all high and mighty and above all of the mud-slinging going on. But she is right there in the middle of it throwing the mud and shit.

  6. Hi MJ
    The situation is a no- win in terms of interaction. I surrender long time ago: what you say is twisted by so many posters of the ND, if you share (painful) personal experience- a bit only- you are doing the pity party, if you ask for consideration pointing to certain conduct you dismiss the autistic person, sematics and rhetorics is the name of the core of the situation - you have to talk to autistic people, not about them , and for many real life like the PBS shown is simply not in the radar on the interpretation and so on and so on.
    Autism affects every aspect of a family life and every life in the family of an autistic person. Parents have the responsability of the decisions on children, autistic or not, in every aspect of their lives (health, social integration, school, education, nurturing and so on). My son is going to ask me what I did , how, with what basis, not to some autistic adult doing activism in ND.

  7. The second article by Kim talks about empathy. The lack of empathy towards the parents of physically ill children doesn't disturb her at all, does it?