Monday, August 15, 2011

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.


Julia Roberts said...

What a great glad to hear you thought it was worth it! Thank you for this feedback, it's SO important for BlogHer.

Thanks for letting us share it with the community and beyond!

MothersVox said...

I'm so glad that I came out to San Diego and met you and your BlogHer posse. It was an amazingly powerful mini-conference and I hope you'll do one in my hometown of NYC next summer! August 4-6, isn't it? I'll mark my calendar!

Robert Hudson said...

Oh wow, this is perfectly stated.

MothersVox said...

Rob - That's how I felt about everything you were saying last Friday. Was also thrilled that you are reading Jean Vanier as L'Arche communities offer a valuable model. He was a colleague and mentor to my late sister-in-law, who worked with cognitively-impaired adults.

audball said...

Sounds like a great must be wonderful to finally meet some of these bloggers face to face. Empowering, to say the least!

I often wonder what "(autism) activism" looks like to others in our neighborhood. I feel like we live it everyday, putting our El in social situations within our community. I'm afraid I'm not as vocal, nor active, as I should be, but sometimes I don't know if I have the energy (when my DH is out of town, we have a lot of Subway and cereal - haha!)). I stay in touch with bloggers and people who assist the differently - abled because at some point I would like to do more. I guess by reading/hearing about other people's experiences, it helps me stay engaged on some level.

MothersVox said...

I think living autism activism every day - in everyday life - is one of the most important and most difficult things to do. I laughed at the Subway! We were more likely to have plain pasta with olive oil and parmesan cheese . . . same difference! That was one of the things that parents at the mini-conference spoke eloquently about -- about being too tired for activism. I get that. When our girl was in the throws of her worst episodes, activism was just a far off fantasy. Survival was top of the list. Getting from Monday to Tuesday to Wednesday and so on. But things do change as they get older and we get more settled with what's going on.

MarfMom said...

Excellent summation of everything! You are so right about people being afraid, and I wish I knew the best way to make typical people feel invested in our cause without them doing it out of pity/fear. I believe we can figure it out though!

shelley said...

it was so nice to meet you for the short time i was at the special needs summit! i was so excited to see that they had put this together and unfortunately i had a meeting slamed in the middle of it and i had to leave, but i would very much like to keep in touch with all who were there, maybe next year we can have a whole pathfinder day!