- Share This Post
- Pin It
- 1
- 9
-
Sparkle (0)
Before I was Leo's mom, I would have been likely to choose defenestration over confrontation. But kids like my son, who has intense autism, require advocacy, and advocacy requires standing up and speaking out on matters that conflict with his best interests. We parents and caregivers who want real change, real results, and real information for our children with special needs have to be smarter and stronger than perhaps we ever imagined. Here are four approaches to the advocacy our kids deserve.
1) Get Informed.
Parents of children with special needs gather information about our kids' diagnoses obsessively. But how do we know if our information is legitimate? How do we know which sources to believe? I suggest modeling information procurement techniques on those of investigative journalist Amy Wallace, who gave the following advice after researching the anti-vaccine movement:
"Challenge your own assumptions and be open to all points of view. Talk to lots of people and be willing to ask dumb questions. Then, take care to get every detail -- big or small -- right in print. And when I say right, I mean it in both the micro and macro sense. Context is everything."
Thoughtful information-gathering is trickier than it might seem, especially if one relies on the unfiltered Internet. The autism spectrum disorders community is particularly overpopulated with "experts" spinning misinformation into reasonable-sounding claims, as they did with the recent National Vaccine Injury Compensation Program (VICP) award to the family of Hannah Poling. Because Hannah's family's initial suit was filed as an autism claim, the antivaccination sector of the Internet interpreted last week's award as evidence of a vaccine-autism link. Sharyl Attkisson's headline at CBSnews.com even read, "Family to Receive $1.5M+ in First-Ever Vaccine-Autism Court Award."
That headline is inaccurate (euphemism). Lucas Laurson at Nature.com actually read the Poling VICP proceedings instead of gleaning them for keywords, and determined:
"However, the payment does not acknowledge a vaccine-autism link. The payment was made for a mitochondrial disorder and encephalopathy which fall under a category of so-called “Table” injuries for which parents do not need to show proof that the vaccine aggravated the condition as long as it appeared within a certain amount of time after vaccination. The VICP, which was established in 1988 (US Court of Federal Claims), has made thousands of such payments since its establishment."
It's important to dig beyond the headlines and keywords if we are to differentiate the valid information from the skewed. It's also helpful to find a community whose information-gathering skills we respect and trust, who will bounce ideas and share information sources, and who will discuss contentious matters without resentment. And we need to avoid flocks of parrots who all squawk the same squawk -- that situation is called an echo chamber, and once the squawking gets loud enough, it could permanently damage our hearing.
2) Speak Out.
It takes chutzpah to speak out, even if our hearts are fully invested in a cause. But we need to call out those who are wrong, offensive, misinformed, or ignorant about our special needs children -- especially when our kids can't speak for themselves. It is through such advocacy that the casual pejorative "retard" has become distasteful (though apparently no one told Jennifer Aniston), and I suspect the still-widely-used "lame" will follow.
We need to speak out for our children -- loudly, and more cleverly than those with whom we disagree. Especially in prominent arenas. As Catherine Connors wrote on speaking out against hate, we can't "let those be the voices that define this kind of story in the media."
Which is why I admire Penn and Teller's (NSFW) Bullshit! episode on autism and vaccinations. Their thirty-minute exposé -- shocker to no one, trigger to many -- included a lot of profanity, as well as some satirical nudity. But along the way P&T used well-researched evidence to deconstruct autism myths, trotted out effective visuals to illustrate the critical role of vaccinations, and allowed misinformed antivaccination activists to self-impugn. It is a masterful piece of advocacy.
Note: I'm not giving you a free pass to attack anyone with whom you disagree. Speaking out requires skilled judgment, especially if your goal is to showcase solid information. That means you don't get to go on a smackdown spree because you believe your cause justifies any means necessary. You also need to train yourself to think past trigger keywords and
