Monday, April 11, 2011

The five-minute activist

I'm at Hopeful Parents today with an easy way to affect the political landscape in five minutes or less.

Click here to get started...

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.


Friday, April 01, 2011

When autism speaks to me

When autism speaks in my life, it doesn’t come through a single channel or through the filter of a single organization. Often, it doesn’t even use words.

When autism speaks in my life most powerfully, when autism speaks directly to my heart, autism speaks to me through Brooke, and Miss M, and GP, and Andrew, and Nik, and Ben, and Oliver, and Charlie, and John, and Sam, and Charlotte, and Isaac, and Rooster, and Foster, and Dev, and Rocco, and Fluffy, and Evan, and Boo, and TH, and Kyan, and Buddy Boy, and India, and N., and Leo, and Nat, and Megan, and RM, and Caleb, and Rhema, and Jesse, and Elizabeth, and Ray, and Jaysen, and Sweet M, and Christopher, and Connor, and Keegan, and Katie, and Kate, and Ian, and Brian, and Brandon, and Adam, and three Jacks, and two Henrys, and so, so many others, who have touched my life in indelible ways.

When autism speaks in my life, it speaks to me through Bud.

That’s why I love this video from Rethinking Autism.

It’s also why I’m lighting it up blue tomorrow for World Autism Awareness Day.

To me, their goals are not mutually exclusive.

And to quote my friend Jess (again), "Awareness is not the goal, but the means by which we will achieve it."

Happy Autism Awareness Month, friends. Thank you for bringing your children into my life. Thank you for helping them speak to me.