Oh, how I hate "awareness." I hate how people buy magnets or specially-colored lights, or post their bra color in their Facebook status in the name of "awareness." Are they really "aware" or are they just doing something easy to make them feel as though they "helped?"
There are a lot of different conditions: acute, chronic, fatal, developmental, degenerative. There are some with "cures" and others with "treatments" or nothing, just "acceptance." (And then there are those differences that shouldn't even be thought of as being "negative" even if the world at large believes they must be "cured.") There are people who are "different" in some way that is more than just the traditional different. Some of these are "acceptable" differences, and others are not. (Think about how you treat someone who looks "sick" but is articulate and calm versus someone whose behavior is deemed disruptive.) There are so many conditions about which to be "aware" that each individually loses its significance.
Similarly, there are "causes." There is that teenager with a "Free Tibet" bumper sticker on her car, thinking it is just the cool thing to do. There are the "green teams" around town that give away fliers (that's paper, people!) about changing people's habits. (Seriously, STOP making and giving out reusable bags - we ALL have plenty of reusable bags now, so the energy in production and packaging of those bags is starting to outweigh the benefit.)
And then there are plenty of "causes" that are also about "awareness." While I applaud some people for being dedicated to their particular concern, many more people think of such things as being "trendy." They feel good about themselves for "donating" in some way.
Yeah, I've become pretty jaded. Because in many cases, the very person who happily buys a cute pink purse to benefit breast cancer won't have the time to make a meal for a colleague who actually has cancer. Or the school that preaches tolerance and diversity will expel a child on the autistic spectrum. The neighbor who takes up a collection for cerebral palsy (because it is a church mission activity) will look away when she sees someone in a wheelchair.
But, just maybe there can be a little bit of benefit in "awareness."
You see, I've been hurt enough by the negative that I have forgotten about the positive.
Just a few months ago, a friend announced her daughter had been diagnosed with autism. I had suspected the girl was on the spectrum for years, but it was one of those delicate situations where I didn't want to overstep my boundaries. After all, I've been in her shoes where well-meaning people would ask, "Have you considered getting help?" when the answer (in my head) was "Of COURSE I've 'considered' it - in fact, for the past X years I've been consulting different doctors, trying out different schools, and being slammed. I've been accused of being a bad mother and worse."
Because one of the things most people aren't "aware" of is that just having a diagnosis doesn't magically mean everyone's problems disappear. A mother or father cannot just say "Hmmm, my daughter's behavior isn't 'normal' so let's do something about it!" and have the world suddenly accommodate their child.
So back to my friend...
Since her daughter's diagnosis, she's put her heart into the autism community. She took her daughter to meet Temple Grandin and she's proudly displaying a blue light on her porch and has gotten some of her neighbors to do the same. She is feeling supported by her neighbors. She is feeling supported by the resources she's found in her area. For her, this first Autism Awareness Month and World Autism Day since her daughter's diagnosis has actual meaning.
So yes, I'm burnt out by the very things that are giving her hope - but I certainly don't want to take away that hope!
This morning I read a terrific post by a fellow blogger asking the question "Does Autism Awareness Day matter?" My heart softened just a little.
Meanwhile, I frequently find articulate, wonderful posts over at The Thinking Person's Guide to Autism. I hope that some of the people with questions about autism find their way there.
And then last week I found the "Autism Support Group" video from Rethinking Autism. From there I went to the Our Voice page, and my tears flowed.
This is the sort of "awareness" I wish was more widely publicized.
Unfortunately, the Grinch in me still believes that it is like preaching to the choir: the very people who are considerate about such things will be those who find such resources, whereas those who are hurtful and prejudiced wouldn't consider such sites.
But... just maybe, someone trying to find a "cure" for autism will come across the powerful Rethinking Autism video or land on one of the other sites that aren't one of those widely-publicized money-machines *cough*autismspeaks*cough*
And so I thank those people who are trying to create awareness in positive, productive ways. Regardless of the "condition," it is all about understanding. I may not personally know what it feels like to have cancer or lupus, but reading about others' experiences at least shows me a glimpse beyond the stereotypes. It isn't about supporting someone in a condescending way; it is about supporting them, period. It is about being "aware" that something you may not understand isn't necessarily "wrong" or begot by negligence, but might be coming from an uncontrollable situation.
Awareness isn't about gimmicks or trinkets; it is about thinking a new way. And yes, I guess I've changed my thought pattern a bit about the benefit of having such things as World Autism Awareness Day. So there!
Comments (5)
It's hard to dedicate just one day to awareness of an issue when you live it day after day. I think our lives bespeak autism awareness. That is the reality and quite frankly quite enough for me.
Posted by aspergers2mom | April 2, 2011 11:31 AM
Posted on April 2, 2011 11:31
I do love your picture :)
Posted by Casdok | April 2, 2011 11:42 AM
Posted on April 2, 2011 11:42
On one hand, it's true that it's the least you can do to show support, right? Wearing a button, turning a photo blue, or in our case as a military family, waving a flag outside your house.
But on the other, I do try to see it as an opportunity to educate, perhaps as you've done in your post, but saying "It's nice, but here's what you can REALLY do." I think it's also a great starting off point for talking about it with kids, though like you said, it's one thing to wear a button, it's another to be understanding of a kid with autism on the playground.
Of course, I speak from a person who worked with kids with autism professionally, not as someone who is raising one in my home. So I can only speak from a place that says when I turn something blue or purple or pink, it's because it's a small something to say that I do care and support a good cause.
Plus, I look really good in those colors. heh.
Posted by Kristen | April 2, 2011 11:47 AM
Posted on April 2, 2011 11:47
(@Kristen) Yeah, I get that - and I do love the color blue - I don't think people are trying to be mean with all the "awareness" but it is frustrating when someone says "Oh, well I got this button, so I support you" but then is horrified when someone with autism starts flapping their hands. Interestingly, I LOVE the idea of tying a ribbon on a tree or flying a flag outside for the military, because it is a symbol of belief and hope. Funny, I don't see the autism things in the same way, even if was intended as such! (Maybe because I cannot myself bring someone back from war safely, but I CAN be understanding of someone with autism?)
Posted by Karianna | April 2, 2011 12:01 PM
Posted on April 2, 2011 12:01
Hi, Karianna. Thank you so much for the kind words about our video. We're so glad you liked it.
All our best,
Michael Broderick and Dana Commandatore
RethinkingAutism.com
Posted by Michael Broderick | April 4, 2011 10:08 PM
Posted on April 4, 2011 22:08