reflections related to disability advocacy, family and (needed) cultural change
Tuesday, October 14, 2008
Unexpectedly Effective Advocacy Skills: Strategic Use of Information (Part 1)
Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.
Information and perception are always working—either for us or against us—with some attention and a few skills you can make it one of the most effective tools in your toolchest.
I have a few impressions: • It is from Wasilla—a few short months ago I had never even heard of Wasilla. • It’s a transition program—sounds quite community-focused. Lots of good skills taught and some success. • But: WHAT IS UP WITH THE DISCUSSION ABOUT THE GUY’S HAIR?????
This sounds like a good program. And I found this part of the article upsetting.
If this article were written about me I would be mortified (though I almost never forget to brush!) If it were written about my older two children the screaming at my house would never end—and neither would the harassment they would get from their friends. Yet, it is almost expected that these remarks will be written about our kids with disabilities.
Some will say “but it’s accurate.” And it is of course. Truth be told, most all of us have used the bathroom and performed some personal hygiene today (or if we haven’t, we certainly should have!) Yet, for most of us, our success or failure in this area won’t make the papers.
The reporter was looking for a story that illustrated that the program was supportive. The program (accidentally, I’m sure) gave her an easy way out by holding conversations that should have been private in front of her.
There were choices. It is not that they HAD to humiliate somebody in order to get their point across. The program probably also showed the reporter a client who was using much support and many repetitions to learn a job skill. Same story about needed support—dignity intact.
The reporter chose the more sensational angle.
See, the program showcased what they wanted to say, they just weren’t as vigilant about not showcasing what they did not want to say.
We want the world to look at people with disabilities and “Presume Competence” as writer Kathie Snow says. We can support this by Presenting Competence.
And if this can happen with experienced programs it can happen to any of us, and it often does.
The trouble is we look at where we are and what’s next, not at the bigger picture.
We're like sheep. Yes, sheep.
Sheep keep their heads down and munch their way along from the hunk of grass they are eating now to the next tasty hunk. They don’t look up to notice that they have strayed far from their path, to see the wolf, or to see that they are on the edge of a cliff until it’s too late.
Lucky for us we aren't sheep. We can minimize these occurrences with some planning.
Start by planning your underlying message. Set some parameters that don’t really change no matter what you are trying to achieve.
Having standards in place helps keep you from making as many unknowing blunders.(There will still be some and they will make great blog fodder, but minimize where you can!)
This could keep you from presenting your child as totally pitiful (in their hometown where you someday hope they will get a job) in order to make $$ for your parent group for example.
Now you may want to raise money for your group and your child can certainly be a part of it—this only makes you think about how.
Decide where you intend to go: My family believes that our kids—all of them—are valuable, they belong, and their weaknesses or struggles do not cancel out their strengths.
Equally important: Decide where you will not go: We will not embarrass each other. We all have dignity which we will defend. Details are shared thoughtfully. Privacy applies to all of us.
Compare your current situation with your planned message frequently to stay on track. Also check in with others. I run some of my blogposts by my friends or my kids to make sure I am on track and not humiliating anyone.
This doesn’t mean I can’t tell most stories—it just sets some parameters around how I tell them. For instance, I can mention that I am doing lots of laundry because of a stomach bug, but can’t detail exactly HOW the laundry got so dirty (somehow I think my readers are ok with this!)
I can showcase the funny, the frustrating, the wild, the weird, the quirky and the sloppy, good, bad, and downright icky—I just can’t make my kids look pitiful, stupid or less—ever.
Not even for a good cause.
Setting the internal parameters is the first step. Over the next couple of Tuesdays I will talk more about using information strategically to affect the situations you face. Have a lovely week!!!!
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.