I have not been sure just exactly how to start this post. Words and questions have been circling around in my brain, and sorting through all the noise is sometimes difficult. But as I’ve been reading articles and other people’s posts, a phrase mentioned by a coworker keeps getting louder: “Should we?”
This is a really important question for most people, and one that all too often gets lost in the noise and chaos of daily life and in the desire to “do good things”.
I should probably back track a little so that this makes more sense. A lot of conversation happens daily around various treatments, therapies, and courses of action for people with disabilities. Up until fairly recently, the only voices being heard and given any credence whatsoever were voices belonging to parents, therapists, and other types of providers.
Take a moment to let that soak in. Who is missing from that sentence? Yeah. The disability community itself. Like many other communities, it is widely varied. But it has something really vital in common, no matter what diagnosis you are talking about. This is a group that is highly marginalized and is abso-freakin-lutely determined to be heard.
[As you have read before, my place in that community has greatly evolved. The thing preventing me now from seeking validation regarding my diagnosis is the fact that we’re also saving for a down payment on a house (we do a lot of hard decision making about spending lately). But I know me better than literally anyone on the planet. So really it would only be a validation of what I already know. ]
I am proud to be in the fray, as hard as it is some days. It’s important to ensure that the world hears the voices of the people most impacted by any treatment, life decision, goal.
Which leads me back to the question: should we?
Before a service is provided to someone with a disability, are we asking that person what they want?
Before a behavior is changed to something “socially acceptable”, are we asking the person being treated whether this is important to THEM?
Before we add a goal to their service plan, are we asking people what their goals are (and then supporting those goals)?
(a little louder for those in the back)
S-H-O-U-L-D W-E ?
Hang on, I might need a bigger font. Except that I can’t do that in WordPress. Dang.
Look, I’m not going to delve into one specific example of a therapy or another. All I ask is that those of you making these decisions look deep into yourselves. Ask yourselves why you are making the decision and then go from there.
For what it’s worth, here’s an example of how it should go. Speedy was present for his recent Individual Service Plan (ISP) meeting. He was asked what he wants. He was asked what his goals are. What his dreams are. In a room with seven adults all potentially put in the position of making decisions for him (since he’s 8), he was asked what he wants. That is how it should go.
Wonder Boy was also present for his ISP, and opted to curl up in a chair and read. And that’s just fine! He did participate some, and that level of participation will increase as he gets older. At age 6, a room full of adults really isn’t all that interesting.