Saturday, April 02, 2011

Autism awareness and the blue light special

Today is World Autism Awareness Day. Homes and buildings and landmarks around the world are shining blue lights in its observance. All across Facebook and other social media, links are being shared, videos are being posted, status updates are being written, and avatars are being changed to shining blue lights.

But so what?

Does it really matter?

In a world full of wristbands and ribbons and tinted avatars and status updates that that try to inspire through belittlement – “Most people won’t have the courage to post this as their status for even one hour...” – is the Light It Up Blue campaign just the next phase in our slacktivist culture? Is it simply another version of posting a bra color for breast cancer awareness or a favorite cartoon character to combat child abuse?

I’ve thought about it a lot. And I’ll tell you the truth: I’m not sure.

But I don’t think so.

I had a great conversation about it with my friend Wonderfriend today. Wonderfriend does not have a child on the spectrum, but as a Speech Language Pathologist, she is a fierce advocate for the cause and she works tirelessly with her clients with autism. She’s also smart and media-savvy, and as such, she eyed the flurry of blue light bulbs through a lens of healthy skepticism.

We held our conversation in a somewhat public forum – via our Twitter streams – and we got good feedback from mutual friends who had seen it. Too often, I think, we folks in the autism community approach controversial issues from one of two postures: offensive or defensive. And all too often, regardless of the outcome of the conversation, we feel exhausted by the battle itself - defeated, sometimes, even in our moral victories.

But I don’t think it has to be that way. I was so glad to have an opportunity to talk through my perspective with Wonderfriend – a woman I know to be smart and thoughtful and committed to the cause. I appreciated the gentle challenge and the opportunity to try to give shape to my thoughts – and, to some extent – to clarify for myself what it is that I think.

With Wonderfriend’s permission, I am posting our exchange here. It is, of course, written in 140-character chunks and, therefore, like most Twitter exchanges, it reads more like haiku than like conversation. And since we weren’t always logged in at the same times, the flow isn’t always there. But the open exchange of ideas is there. The respect is there. The thoughtfulness is there.

And really, isn’t that what any awareness day should be about?

Here it is:

wonderfriend Friends, help me understand...are the blue lightbulbs for autism different than stating your bra color for breast cancer? Trying to get it.
16 hours ago

wonderfriend I keep thinking of @whymommy's essays (here & here) about social media awareness events. I feel uncomfortable.
16 hours ago

wonderfriend Everyone's heard of autism now, where do we go next with awareness/education? Resources, orgs that are doing good research?
16 hours ago

momnos @wonderfriend I think it's different from bra meme, which was FB only. This is FB promotion of real-life campaign.
13 hours ago

momnos @wonderfriend More akin to pink ribbons for breast cancer.
13 hours ago

momnos @wonderfriend I don't think the awareness is really there yet. In some circles it is, of course. But not as widely as it needs to be...
13 hours ago

momnos @wonderfriend ...in terms of it translating into choices at the ballot box. House of Reps here just voted for MAJOR cut in services. Devastating cuts.
13 hours ago

momnos @wonderfriend I think the outcry would be greater if people truly understood the impact. It starts w/ knowing just how many kids are affected.
13 hours ago

momnos @wonderfriend On a more personal level, it felt pretty great when one of my staff members texted me to ask where she could find a blue bulb.
13 hours ago

momnos @wonderfriend It gave her a tangible way to say "I'm with you."
13 hours ago

wonderfriend @momnos Yes, this makes sense. Good examples of the difference. I feel more comfortable about it. Thank you!!
12 hours ago

wonderfriend @momnos Were you at protest rally yesterday? My friend was there with a UU contingent.
12 hours ago

wonderfriend @momnos I fear these cuts are coming in every state, from what I'm hearing. Social services, education, disability services. Devastating.
12 hours ago

wonderfriend @momnos I just think it's so serious that I'm probably overly concerned/sensitive about where our energies are placed right now.
12 hours ago

momnos @wonderfriend I wasn't at the rally because it was during the work day. SO grateful to those who were. One of the most unsettling aspects...
5 hours ago

momnos @wonderfriend ...was the pride House GOP seemed to take in passing their cuts in the face of protests. Almost frightening.
4 hours ago

momnos @wonderfriend I hear you re: energies. I think of it this way: the best candidate in the world can't accomplish anything unless s/he gets...
4 hours ago

momnos @wonderfriend ...elected. So while big money for campaigning seems ill-spent (i.e., why not redirect it to people who really need...
4 hours ago

momnos @wonderfriend ...it), it's actually an investment toward a much bigger goal that will ultimately be more far-reaching in its effect on...
4 hours ago

momnos @wonderfriend ...people's lives. I think the blue light campaign is similar. Blue Empire State building = Springsteen at an Obama rally.
4 hours ago

momnos @wonderfriend I did write to my House reps before the vote, & was delighted to see they both voted against the cuts. Will follow w/a thanks.
4 hours ago

wonderfriend @momnos This is the kind of connection that makes sense to me. I wish that in the [few] references I've seen to the blue lights...
4 hours ago

wonderfriend @momnos ...there was more of a connection made as to its political or bigger-picture goal. I looked at it and was not sure what ppl want.
4 hours ago

wonderfriend @momnos I don't love Autism Speaks, so raising more $ for them isn't enough for me personally.
4 hours ago

wonderfriend @momnos thanks for having this conversation with me, I didn't intend to challenge anyone's intentions but I think it's so important
4 hours ago

wonderfriend @momnos ...to look carefully at some of the "post this for one day", "share your bra color!", "turn your twitter avatar green", etc...
4 hours ago

wonderfriend @momnos ...kind of "soft activism" that I am extremely wary of. I'm not a pink ribbon gal, either. I get this better now, appreciate it!
4 hours ago

momnos @wonderfriend Absolutely. Pseudo-activism can lead to complacency. Feeling like you're doing something is not the same as doing something.
4 hours ago

wonderfriend @momnos That's it. And when I see a large group of ppl putting a lot of energy into sthg that is temporary in nature I get nervous.
4 hours ago

momnos @wonderfriend I don't love Autism Speaks either, but the reality is, they have the spotlight. I can either lobby the House reps I have or...
4 hours ago

momnos @wonderfriend ...I can sit home and hope for a better outcome in the next election. So far, lobbying has been more effective.
4 hours ago

momnos @wonderfriend Same with Autism Speaks. I try to partner, but shift the conversation (had a blog post yesterday aiming to do just that).
4 hours ago

wonderfriend @momnos Lobbying House reps is hugely important. If this blue campaign gives ppl a platform to do that & increases that then I get it.
4 hours ago

wonderfriend @momnos These are the types of things that reach more ppl and are very effective, I believe.
4 hours ago

momnos @wonderfriend I think the FB platform can be really helpful. I have FB friends who are not in my everyday life - people from grammar school...
4 hours ago

momnos @wonderfriend ...etc. They don't know my son and they may think they don't know anyone w/autism, so 1 in 110 may not mean much. This helps...
4 hours ago

momnos @wonderfriend ...start the conversation. People tend to be more open-minded w/real-life contact.
4 hours ago

wonderfriend @momnos Right. But Devil's Advocate: does posting abt this campaign help more/differently than you posting your amazing blog posts on FB?
3 hours ago

momnos @wonderfriend I think so. Tho I'd like to believe everyone rushes off to read all my posts, I don't think they do. But if 30 of their FB...
3 hours ago

momnos @wonderfriend ...friends have a blue light avatar, maybe they will today. Hundredth monkey and all that.
3 hours ago

momnos @wonderfriend I only have a lot to say abt this bc I come from a similar perspective & have been having this internal dialogue for a while.
3 hours ago

wonderfriend @momnos I can't tell you how helpful the conversation is for me!
3 hours ago

wonderfriend @momnos I'm only seeing references to it thru you guys, my online friends. Not at all in my client community, and I've missed any...
3 hours ago

wonderfriend @momnos ...references to it in local media. I see no blue. I think such a small proportion of parents are taking an activism role.
3 hours ago

wonderfriend @momnos But perhaps if it's done year after year more ppl will catch on and take the time to do it.
3 hours ago

wonderfriend @momnos I'm sure communities with strong leadership are more active. Here, it's *crickets* abt it so I prob don't have good sense of...
3 hours ago

wonderfriend @momnos ...how big it is.
3 hours ago

momnos @wonderfriend I think it will. I resisted it last yr, but then my colleagues came to work wearing blue on 4/2. Moved me so much, and made...
3 hours ago

momnos @wonderfriend ...me understand the power behind the symbolism.
3 hours ago

wonderfriend @momnos That's beautiful! I didn't know it existed last year. Ok, gotta walk this dog & get this party started!! Thx again! xoxo
3 hours ago

momnos @wonderfriend Enjoy your day! (Wear blue!) ;)
3 hours ago

wonderfriend @momnos Ha! My internal rebel is not ready for that! But I'll work my ass off for autism every damn day!!!! :-)
3 hours ago

momnos @wonderfriend Yeah, that'll do. :)
3 hours ago


My thanks to my good friend Wonderfriend - for her tireless efforts and advocacy for our kids, for a great conversation, and for her gracious permission to re-post it here.

My thanks, also, to my district's members of the state House of Representatives – one a Democrat and the other a Republican – who both voted against the devastating budget cuts that won wide approval in the House this week. I’d written to both of them about a month ago, urging them to vote against the cuts, which would significantly diminish support to children and adults with developmental disabilities. I read today that my Representative was one of only twenty Republicans in the state who voted against the cuts. He was quoted in the newspaper saying that his first priority was to the people in his district, his second to the people in the state, and his third to his party.

I wrote both of my Representatives again today – World Autism Awareness Day - to thank them for their votes. I also thanked my Republican Representative for his courage, acknowledging that in the current climate, it is a risky act to vote against one’s party. He replied personally within a half hour, saying he shared my disappointment, giving me hope that the tide might turn in the Senate, and encouraging me to keep the faith.

And I am keeping the faith – but I’m also Googling the e-mail address of my state Senator, so that I can make sure that he knows where I stand.

Because, yes, I believe that awareness is important today – World Autism Awareness Day.

But I think it might be even more important tomorrow.


17 comments:

toddlerplanet said...

Amazing post. I saw Wonderfriend's note about it on FB and came over to read about the blue lights. I hadn't heard about the 4/2 events, but I do remember the campaign to turn the White House blue last winter.

I love that you question HOW this campaign is linked to action. In BC as well as autism, it is time to move beyond awareness and into action. How can we help the cause today?

(and thanks for the shoutout- I was not expecting that!)

Susan

kristenspina said...

I agree with Susan. I think it's time to move beyond awareness. I think you'd be hard-pressed to find someone who isn't AWARE of autism, people know the word, they are aware of the word, but they have no idea what it means. (If the autism community can't even agree on the subtleties of the definition, how do we expect the general public to understand?)

I think education is so important now. And maybe education is awareness. But I think we need more than blue lights. I'd vote for greater efforts on real honest to god education, which comes, in part, from sharing our stories. Blog posts and memoirs and FB statuses that do more than ask people to buy a blue light.

I admit to a lot of mixed feelings about all of it, and so appreciate Wonderfriend having the courage to question it and you having the thoughtfulness to respond. :-)

MOM-NOS said...

I hear you, Kristen. But on the other hand, even the most thoughtfully written blog posts and memoirs are powerless if nobody reads them. I think that's where awareness campaigns play a critical role. I do think that everyone has heard of autism; I'm just not convinced that everyone thinks it matters. Politically speaking, I mean.

And TOTALLY with you on Wonderfriend. The name definitely suits her.

Lapin d'Indigo said...

Thanks for the post - very thought provoking. I think that in this day and age, any campaign to combat a disease, condition or even political injustice has to have a "Slacktivist" element an easy way for people to dip their toes in and think that they are contributing and to help take advantage of this country's celebrity culture.

The trick is how to move from that low level of activism/color of the month into real education and cultural progress. I have seen so many organizations try to carbon copy Komen and the breast cancer community's approach that I fear that people are filtering it out like they learned to do with advertising. (I swear there is a standard "Awareness Walk" package that you can pick up at City Hall. With Breast Cancer, MS, Alzheimer's, Autism, Mental Illness and others doing the same walk route at the same location within a few months of each other, you can show up on any given Saturday during spring in Tucson and "participate" in a cause).

For my part, I am fighting to ensure that there is true inclusion in the schools - start the education with the younger generation. I am optimistic that the kids will educate their parents - because I have seen my son's classmates do it.

kristenspina said...

And yes, definitely agree on educating the younger generation. I've also seen huge gains with my son's classmates, all of which stems from a school-wide approach that speaks to awareness, inclusion and education.

We need to teach our kids that there is no "us" and "them", it is only "us".

MOM-NOS said...

Blogger should have a "like" button. I really like these comments.

Maddy said...

I also think awareness can be just soft activism. I'm also not so sure that EVERYONE has heard of autism. Even now, after all these years I'm caught short by someone who clearly has not heard about autism.

Budget cuts seem to indicate that we're up against the wall politically too. There are so many needs and so few cents [even in the richest country in the world] - sorry, I'll get off my soapbox now.

Kelly said...

Thanks for the food for thought, particularly the "bigger picture" perspective. I blogged about this yesterday, but from a personal, inward focus. I hadn't thought much about it outside of that.

Stimey said...

I think this is such a great conversation to have because I am also on the fence about the blue lights. Yesterday I was in Seattle and saw local coverage of some building that had been lit blue, which was great, but the story was more about the fact that something was blue, rather than what autism is.

I wish the story was, "Building XYZ lit up blue to remind parents to check for these early warning signs" or "in support of legislation to fund IDEA" or something action oriented. Or even to remind people that "autism is a developmental delay affecting 1 in 110. Be nice to the different." Mostly I just heard, "lit up blue for autism awareness."

This, of course, speaks more to the failure of any in-depth coverage at all by the media.

Anywho, I think blue is cool especially when coupled with activism and information.

Kim said...

Thanks for sharing this conversation. I actually still meet people who have NO idea what autism is, haven't heard the word, or if they have it went in one ear and out the other. I just wish there was more education with the awareness. Being aware that autism is affecting so many people is one thing, what to do about it/how can they change things is another.

kim mccafferty said...

Awareness, particularly at this stage, is just as crucial as action. I admit I would have liked to have seen more media on this, with action-oriented steps linked to the stories. Ideas for next year...

Genenut said...

Awareness is crucial at this stage. Most who dont live with autism think everyone on the spectrum is either rainman , the kid from st elsewhere , or Temple Grandin. They don't see the millions of "shades" of autism and to them its invisible. The blue light shows them just how many are affected by autism and makes it a little bit less of on invisible disability. I'm alright with arm chair activism for a few years to get people to see the light, then we can work on getting them up and moving towards enlightenment.

mamachron said...

Hello! First let me start by saying thanks for all of the thought provoking posts - and this one truly was. As autism awareness month quickly approached, I kept wondering how I could do my part to make people aware. Yes, those of us living in the autism community are very aware - yet to many there is little to no awareness. It's the classic case of being on the outside and looking in - many don't understand.

I decided this year I wanted to educate people, so I started with those around me: my neighbors. One weekend in late March, I spent the day knocking on doors and talking to my neighbors - talking to them about Emma - my nine year old daughter, about autism, about autism awareness month and about the light it up blue campaign. 44 out of the 48 homes on my street turned their lights blue on April 1st and 2nd - many of them still have them shining... day and night!

Basically, my personal campaign snowballed into an entire community becoming aware, news stories being run and a week devoted to autism on the local news.

I do believe it makes a difference - because through awareness, we are beginning to educate those looking in!

I have posted this story in detail on my blog, as it was truly amazing how one person can make an impact. if you would like to read the story, please visit - although i think you will have to type in the url to find it. (www.fastenherseatbelt.com)

You're My Unsung Hero said...

Hey MOM-NOS.
It even got a mention over here in Australia. We lit up our Sydney Opera House blue! ;)
http://www.autismawareness.com.au/events/current_events_and_campaigns

So, it's getting the word out there... I guess it's juts "lucky" that because it affects so many - now there's probably no-one who could say that they DO NOT know someone on the spectrum.

Meg said...

9.It is one of the reasons why I too now don’t like the Autism Awareness Month. My life is alot more than autism. I explaned it here:

http://megiswritingonthewall.
wordpress.com/2011/04/19/
i-want-nothing-to-do-with-the-autisticautism-community/

Lisa Nelson RD said...

As an FYI there's a teleclass this Thursday (August 18th) you may enjoy participating in. Dr. Shelby-Lane and Dr. Flynn will be discussing autism - http://conversationswithdrshelbylane.com/

All the best,
Lisa

paulabaten said...

I think awareness is really important, especially when it comes to autism. I knew close to nothing about autism until my daughter was diagnosed two years ago, providing a reason for her not talking. As we encourage my daughter to see the importance of conversation, I find that sites like http://onlineceucredit.com/edu/social-work-ceus-pcs provide good information about autism and advice on handling these kinds of situations at home.