Monday, July 29, 2013
The special needs community: united or divided?
The special needs community: Is it united or divided? That question's been on my mind since I got back from the BlogHer conference, which was the usual wonderful whirlwind of mingling, musing, chatting, connecting and squee-ing. I ran a town-hall type meeting with the awesome Jen Myers on HealthMinder Day, part of the Special Needs and Caregiving track and please, won't you come next year?!
One topic that came up in conversation in discussion and on my Facebook page is the divisions that people feel exist within the special needs community. If we share similar purposes and goals, people wondered, why does the community feel so divided at times?
I've felt that as a parent blogging community, we are united in our goal of advocating for acceptance and inclusion. We speak out when celebs like Drake use insulting words about disability. We write openly and fervently about our wishes that people would spare our kids the pity and see all their abilities, not just their disabilities. And we are very united in celebrating our children's progress and achievements. While I was at the conference, Max's teacher emailed me to say that during a school fire drill he led his class to their meeting point, and then back to class. I shared that on Facebook, and got a whole other rush of bliss from the "Go Max go!" responses.
As parents, we also share a goal of bettering our children's lives. Of course, it makes sense that some of us rally around associations and foundations for our children's specific disabilities. But perhaps we could be doing a better job of sharing resources. As Meriah Nichols of With A Little Moxie said on Facebook, "I'd love to hear more talk and ideas on cross disability collaboration and community building—including more collaboration between people with disabilities and parents who have kids with disabilities...."
I knew what she meant. As the parent of a child with special needs I tend to feel as if I don't have a rightful part in the adult disability dialogue, and I'm always grateful for whatever feedback and insights I get from adults with disabilities I've connected with online. Meriah is deaf, and has a child with Down syndrome, so she inhabits both worlds. Louise Kinross of Bloom, another online friend I met up with at BlogHer, has a 19-year-old with a rare genetic syndrome and manages communications for Holland Bloorview Kids Rehabilitation Hospital, so she also has a good handle on the topic. As she noted, "The disability community itself needs to look at how it discriminates between different types of disabilities—instead of uniting to achieve human rights for all."
(I had to smile when Louise emailed to say she'd stopped by a BlogHer workshop called "Rocking Your Otherness" that she thought had to do with differences—except it was about style and beauty.)
Me, I've felt a divide when I hear about programs geared toward one type of special needs. By that I do not mean the fundraisers or awareness events, I mean efforts like the "autism-friendly" Broadway performances. By name, they're exclusionary to kids with other special needs who have sensory issues. Calling them "sensory-friendly" would be far more welcoming.
What are your thoughts on the topic? I wish you could have been with us at BlogHer to discuss, but by all means, have your say here.
Posted by Ellen Seidman at 6:40 AM