Hate the Month, Love the Month, or Flat Out Don't Care

The Autism Blogs Directory has approximately 1,000 blogs, websites, and forums representing autistic bloggers, family members, professionals, and other disability-related bloggers. It's grown so large that as blogs move up on the feed with new posts, I'm often surprised by a new-to-me blog (yes, Kathleen and I add them all manually, but I don't always get to read everyone and there's no way I could read every blogger anymore). Our directory continues to grow, with a handful of blogs being added each week.

The diversity in bloggers is often astounding to me, and never more so as we officially kick off Autism Awareness or Autism Acceptance month, depending on who we are and what we want to accomplish. There is no way, given the breadth of experiences and emotions, that as a community we will ever be united when it comes to this month, unless it's in saying one month of effort to help autistics live the lives they want to and help families raising autistic children cope adaptively is not enough, not close to enough, and that awareness alone is woefully inadequate. Of course, even that belief, that we could be united around that, probably demonstrates more that I am Pollyannish than that there is actually a united belief in the community.

One thing's for sure: it will be an interesting month, as the various sides go up against each other, as  some parents argue for their right to say publicly they hate autism (and technically they are right--freedom of speech means they absolutely can) and others argue that once you've been told something is painful, if you're a sensitive, empathetic person, you stop using rhetoric that hurts others, at least publicly. And cue people talking over each other rather than in a constructive dialogue.

In other words, little is likely to change as long as people approach this as their bully pulpit rather than a thoughtful exchange on how we can best serve the community and create real, lasting, and beneficial change in the real world.

Hot air on the internet without deliberate effort on the ground to effect changes that make abuse of the disabled illegal and a hate crime, to be prosecuted in the fullest; that limits severely the use of restraints and provides significant and real oversight of all restraint used (not covered up and hidden like in Florida schools); that gets legislatures and communities to take safe housing and fulfilling employment for the disabled at living wages seriously and as an absolute must; that makes the training of direct care staff a priority; that finally gets the Judge Rotenberg Center closed, shuttered, emptied, and those who abused the clients prosecuted; well, it's game-on as usual, then, isn't it?

Real change in the real world. Without that, this is all an exercise in circle-jerking.


Elise said...

Having been one of those bloggers having words with people in the last few weeks, I have to say that I do resent someone telling me what to do and what to say. It isn't even so much freedom of speech, but freedom to feel how you feel. I for one began to blog as an outlet for my feelings because I had noone to really talk to and those I could talk to really didn't understand.

Its also not an issue of being insensitive on my part to those who don't like my verbiage. I can see what they say and how they express themselves. I understand their points. Honestly I reject that they think they have the right to tell me what to do and what to say. There is no arbiter of how to feel and how to express those feelings in this world. While the self-advocates demand the right to be heard, which is very important, they then turn around and negate everyone else's feeling and deride your right to feel how you feel. I do not have to accept their version or anyone's version of events for myself and my children.

For some reason the autism community thinks that there should be set rules as to what is an "autism advocate" and what you believe, accept and think. Sorry but no. I reject that when it comes to my politics, its why I am an independent. I reject that when it comes to the women's rights movement, that is why I do not consider myself a feminist but at the same time write about women's issues worldwide. I will not be told I cannot be an autism advocate unless I accept a particular set of rules, which includes how to think.

Talking past each other? Perhaps. Or it is simply not really caring what someone else thinks? I personally do not accept that if I disagree with another somehow I am a danger to my children and part of the ignorant in society. Perhaps if they disagree with me, it is they who are lacking?

I am sorry if people think of me as awful. I have finally come to the conclusion that I don't care anymore. But I have fought for my boys for the last twenty years and noone is going to tell me how to go about it in any way shape or form.

farmwifetwo said...

I'm waiting for someone to ask about the blue lights etc and say "is it prostrate cancer awareness month?"

I simply don't care. If you truly want people to sympathise with the autistic you are going to have to meet them half way. They will not tolerate disabled that verbally or physically abuse others.... everyone has to learn proper social and behavioural skills. That is the biggest complaint you read about online in the news articles or in the classrooms. The more children like mine that prove that social/behavioural and education can be taught not only to the severely autistic but also the mild one that can be "cured" you will find the system and other people less and less sympathetic. I don't sympathise with the Aspie's and their parents that are coming up behind my eldest son in school. Since they now know it can be done... the school will have little patience for the "my poor Johnny" comments.

It's like the Occupy movement... whining initially gets you noticed... constantly whining and no actual answers or refusing to being part of the answers, gets you ignored. Autism, has moved into the "ignore" part and off the media's radar.

The players haven't changed over the years... but the message has since been lost to the general public. All the blue lights in the world won't change that fact except for one day it'll get noted in the news. Like most "awareness" days, it'll be promptly forgotten the next day by the general public.

Lexi said...

I can't believe the infighting in the autism community. But I guess it happens everywhere. Just because our kids have the same diagnoses does not mean that we all approach it the same way. At we all believe it was caused by the same thing or should be treated the same way. Just as we expect for people to accept our kids, we need to be the role models in acceptance. Especially with each other. We shout from the rooftops that it's okay to be different, but then fight with others when their views are different from ours. It's not ok.

Ps, I cant find my blog in the directory!

K Wombles said...

Lexi, don't know what happened to it! I added it under the second feed listing in the second column, so you're good to go again!

Anonymous said...

I personally think a lot of the fighting comes about because of interest groups trying to control and set a single narrative; trying to paint a single picture of autism that is meant to encompass the in-fact very wide difference between types and experiences of autism.

I think the way forward with that in mind is to get people to understand what it means to say autism is a spectrum; that it differs hugely from person to person and you simply cannot and should not generalise from one individual's story to the entirety of the spectrum.

I do not think there is enough awareness of what autism actually *is*: Too many people think it's the savant or the person who rocks in the corner, without understanding it is both. It will be interesting to see what - if any - changes to the diagnostic definitions of autism make to the public's (mis)understanding of what autism actually is and what it looks like.