reflections related to disability advocacy, family and (needed) cultural change
Monday, November 23, 2009
Advocacy is a Lifestyle
My kids have a friend who has trouble with anger management. When things are fine with this kid, they're fine. But when he gets angry, he loses control--and this is a serious problem.
Not too long ago my daughter told me that this young man was no longer going to have this problem. He had decided. From now on, no blow-ups. My kids were very upset when I didn't seem convinced.
"You just don't believe in him!" they said.
"Actually I do," I replied, "but I don't believe in his method."
My kids were mad, but finally asked what I meant. I made an analogy (I'm like that!) I asked them if they thought I could bench-press 200 pounds... they of course said no and rolled their eyes.
"But what if I tell you that I have made up my mind that from now on I would be able to??? Now can I?"
Of course, there IS a way I could become able to lift heavy weights, but willpower alone won't do it.
If I want to be a weightlifter I need to have a habit of daily lifting--starting with the small weights, and this guy needs to start a habit of dealing with frustrations--also starting with the small ones. (And I do believe he can do it!)
Well, some people approach disability advocacy the same way this young man wants to manage his emotions.
These folks see "ADVOCACY" as a specific set of tools and a linear process that a person implements only during certain (bad) events.
They believe that advocacy begins and ends when a problem arises. They look up a bunch of laws, march in, beat the opponents with a stack of regs, and walk away. They don't like advocacy because battles are painful and draining. While they succeed at punching a hole in the armor of entrenched systems, it results in a lot of turmoil.
While I believe in full-blown legal advocacy when the situation calls for it (and have fully used it when necessary)I also believe strongly in advocacy as a daily building process.
I hold the belief that disability is fine and does nothing to diminish a person's value or rights.
I assert this belief in big and small ways every day, and my little relationship-building-while-I-advocate steps are every bit as important to my child's success as anything that was ever written in a lawbook.
If I am effective sometimes I can prevent the big battle (without capitulating either,) And when I must have the big battle it's these smaller, more connective efforts that help the battle-scarred team become functional...
It's almost impossible to succeed by just forcing a system to do what you say and walking away.
Getting to know your school's systems (can't just stop at the PTO, I have found!), engaging in your neighborhood, speaking up in the check-out line, writing letters, fostering relationships, correcting misinformation, writing e-mails, helping people understand your child or yourself, blogging, nurturing relationships with other people with disabilities and their families (even when there is no trouble), and more, all count.
Each daily effort not only makes you a stronger advocate it strengthens your child and their position in the world.
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.