Our Year of Barely Blogging

Actually it's more than a year that we've been barely blogging. When last I posted, dear readers -- if any of you are still out there reading — I promised so very much more than I could deliver.

I promised I'd write about how our girl's dad helped her increase her Regents* exam score by 22 points. I promised I'd write about her fledging friendship and her trip with her class to the Grand Tetons. I promised to write about our work doing neighborhood organizing. And I didn't do any of that. Nothing. Not a word.

I'd say that I let you down, except I probably didn't. You'd probably figured out long ago that I just wasn't going to be blogging much. You'd watched my blogging dwindle to one post a year over several years' time. There'd be the weeks, and then months, of dead air, with any new post an apologetic explanation of absence, like this one — sweeping leaves off a nearly abandoned site.

It wasn't just the time-consuming work of fighting the
construction that has stolen our sunshine
and disrupted our sleep.

Where did we go? It wasn't just the time-consuming work of the neighborhood organizing. Or the full time job. Or continuing the work of getting our girl through high school (she's a junior now). Or the visits to Dementiaville (aka LA) to take care of my 89-year-old mother. All that that might have been enough to induce this silence, but that wasn't it. It was other things. 

Or the flying back and forth to LA to deal with my
mother's declining memory and cognition.

There was (and is) the nagging feeling that things are different now that she's a teen. It's not just that she can read whatever I write — that's been the case for years now — but also the feeling that I want her to be telling her own story. You know the disability rights motto of "nothing about us without us." 

The goal is hearing the autistic person's story, not just the autistic's parent's story. I take that seriously. And she has started telling her story, with an Instagram account. But I don't know if I should link to it or not. There is her privacy. And besides, she has more than a hundred followers there anyway: other folks who love Pokemon, My Little Pony, and Hello Kitty. It seems also that there is a place for our voices — for parent and caregiver voices — even as we cultivate our girl's voice. 

And then there was (and is) the occupational hazard of over-thinking things. 

Some of the colleagues that I've been reading argue that the work we do of sharing on the internet is just a way of participating in communicative capitalism, or platform capitalism, or what other people have long called the spectacle. The argument goes like this: We write, post, share, click "like" and engage via social media that capture our attention and our affect — our love itself — and sell them to marketers. Every corner of our electronic lives helps someone turn a profit. The logic of these analyses is irrefutable: fortunes are being made off of our free content, off of our desire to connect, off of our desire to share.

But still, do we want to share less, live less,  love less, just because Google, or Facebook, or Twitter or Instagram or Tumblr executives are riding high on the profits they turn from our attention?  

I don't have an answer to that question just now, but I'll be working on it this year, writing here and elsewhere. I don't know if the gift economy of blogging has any chance of succeeding when the platforms are siphoning off so much at the top, but I'm going to see where the gift of writing with and about our girl takes me in the year ahead. If I pick up any momentum, I hope you'll come along for the ride. We may stall, or sputter, or just run out of steam. But let's see how far we get in the year ahead. 

*Regent Exams are the standardized tests that New York's kids have to take to get a high school diploma. 

No Normal Blue Light Bulbs Could Be Found

I went to the hardware store around the corner from the playground to buy a blue light bulb.

It's April, so it's autism awareness month. Even though we're more an autism acceptance family than an autism awareness family, I figured I'd get with the program and light something up blue.

I was hoping for one of those old-fashioned, normal looking light bulbs.

But they didn't have any of those. Instead, they had this extraordinary twisty blue coil. Not even our autism awareness light bulbs are normal around here.

When I got it home, I said to the sweet girl's dad, "Look, I got a blue light bulb for autism awareness month."

"What's a blue light bulb going to do for us?" he asked.

He's got a point there.

A month or so ago a group of autistic people petitioned Google to change their search completion algorithm. Seems that the auto-complete function of a search for "autistic people should" came up with these as the most frequent searches:

When I saw this online – it came to me through my Google news feed on the topic "autism" – I was destroyed. And I was angry. And I was puzzled.

I wondered how anyone – let alone the majority of people doing Google searches – could think this way about my dear girl. About my friends' dear sons. About all of our kids and our friends who are on the spectrum.

Who are these people that think that 2% of the population should be exterminated?  Who are these people typing hate into the syntax of the internet that my girl loves?  I guess we won't know who they are, but we do know they were the majority of folks searching this phrase that month.

Google changed its algorithm – it no longer reflects the majority view. Rather it aims to shape the majority view. This is what it generates today:

And I got a blue light bulb – an energy efficient one, at that.

I don't know what it's going to do for us. I don't know what Google's altered algorithm will do for us either. But it's a start.

BlogHer 2011: Unpacking the Special Needs Swag

The swag bags of new product samples that I hauled home from BlogHer 2011 were nothing compared to the real takeaway: the powerful sense that disability rights will be at the heart of any 21st century social justice movement.

Don't get me wrong— I'm thrilled about my new Post-It Note sample products, my 3M damage-free wall hooks, the Ziploc lunchtime plasticware with a special compartment for salad dressing, and especially about the Dr. Scholl's arch supports custom-fitted with their new computerized footmapping kiosk. But all this stuff I'm carrying back to New York is nothing compared to the germ of the idea that disability rights will be the social justice and civil rights movement of this century.

The BlogHer 2011 convention, where nearly 4,000 bloggers gathered to learn more about honing their craft and expanding their readership bandwidth, may seem an unlikely place to launch or relaunch a movement for social justice for person of all abilities, but that may be exactly what happened at last Friday's Special Needs Mini-Conference.

Organized by Julia Roberts, founder of Support for Special Needs, and featuring bloggers Shannon Des Roches Rosa, Robert Rummel-Hudson and Aurelia Cotta, the Special Needs Mini-Conference was nestled in the middle of the BlogHer convention, in the middle of the middle day, at lunchtime.  In short, special needs were at the center of the BlogHer schedule.  It was certainly at the center of my schedule, as I'd not have made the trip to San Diego for the convention were it not for the Mini-Conference.

And the trip was well worth it.  Each of the panelists brought a particular perspective to the conversation, but Robert Rummel-Hudson was most outspoken about the need to launch a reinvigorated disabilities rights movement in the face of the coming battles over budget cuts.  Rummel-Hudson, who blogs at Fighting Monsters with Plastic Swords, called on bloggers to step outside of the special needs ghetto (my word, not his) to reach the millions of people who fancy themselves unaffected by disabilities.

The army of advocates and allies that disabilities activists will need in the coming budget battles will have to include those folks who have not yet faced up to the reality of their own human fragility and vulnerability. It may even need to pull in those people who think of our kids as burdens on the system. Bloggers, Rummel-Hudson argued, can contribute to building a disabilities social justice movement by doing what we're already doing, but doing it better: by telling our stories so well that everyone, special needs parent or not, finds themselves embracing our struggles as worthy of their support.

Gathering these political allies for persons with disabilities ought to be the easiest of tasks. As Rummel-Hudson pointed out, disabilities know no political party. Disabilities impact families as politically disparate as the Kennedys and the Palins. But, on the other hand, as I commented from my seat in the audience, disabilities are frightening for people who aren't around them. There, in the person of the wheel-chair-enabled or the cognitively-different is the specter of dependency, of vulnerability, and of deviation from some ideal of a normal life.

Of course we're all on a continuum of abilities. Somewhere in the back of our minds we know that we're all just one serious illness or one accident or one gene deletion from the ranks of the disabled or differently abled. And if we live long enough to become old, frail, incontinent, and infirm, we'll all get to be disabled eventually. The trouble is, that's a hard sell. Who wants to contemplate the reality that disability is a category we may all inhabit at one point or another, especially as rights and services are so paltry already?

Disability civil rights strategy is ever so slightly different than that of other civil rights movements. Other social justice struggles have relied on alliances built across difference. For example, very few of us move readily between racial categories (though some people argue that we do and should). Similarly, very few people, save M2F transgendered folks, go from benefiting from male privilege to living in a world circumscribed by gendered stereotypes. But civil rights built around disability rights are somewhat different in that we can all enter the realm of the disabled.

That's not to say that we can't be othered, or treated as other by persons who imagine themselves superior and invulnerable. There were groans of recognition from the mini-conference audience as people recounted the looks of stricken pity, and the "I don't know how you do it's" that we all hear from people who imagine that our lives are horrendous and our children are some sort of pathetic freaks worthy of a 19th-century sideshow. Usually such expressions of pity, however ingenuous, come without any concrete offers of support. This tendency to make us the distant and undesireable other limits our allies, advocates, and alliances, even if a good pity party may help raise funds at the charity ball or annual telethon.

Disability activism necessarily fractures the American fantasy of the heroic individual who rises from nothing to the pinnacle of success. In its place we foster the ideal of persons supported by, and supporting, each other. Disability activism requires that we all embrace our own limits, our own vulnerabilities, our own profound potential for incapacity. Like the Buddhist meditation on one's death as the path to the fullest possible life, disability activism requires that we all face up to our own finitude, laugh, and get on with it.

I'll be working on that, and telling our story as well as I can, and thanks to Blogher 2011, enjoying a new community of blogging compatriots and some custom arch support from Dr. Scholl's.