G & S Walking and Talking on a Sunny, Spring Day
For as long as I’ve been a part of the disability community there has been an ongoing debate. Well, there have been many ongoing debates, but one in particular speaks to the fundamental nature of how folks with disabilities — especially intellectual disabilities — live in our society. What’s the debate?
Choice versus Safety
See, there’s this belief that they are mutually exclusive realities. Somewhere along the way we decided that either an individual can lead a self-determined life — a life of their choosing — or they can have a safe life where they are protected from bad choices — their own and, presumably, others’.
And then we started seeing the reality of this “safe” life option. The exposure of the horrors at Willowbrook and similar institutions began the slow shift toward the empowerment of individuals with disabilities to make choices in their lives. Some might argue that the pendulum swung too far and opened up all sorts of dangerous realities. Others will argue that no one is truly safe in this world — that getting into a car is inherently dangerous and most of us make that choice every day.
So, we debate it endlessly. How much choice does an individual with a disability get to have? When do others have the responsibility to step in and protect them? Who is liable if they make a choice that risks their health or costs them money or ostracizes them from their community? Do they get to vote in our elections? And around we go.
I’ve spent about 25 years listening to these conversations as I have worked with folks with a variety of labels — some of them disabilities — in a variety of settings. And as luck would have it, I’m raising several kids and have innumerable family members, colleagues and friends with labels of their own.
It’s my intention to share more of this background as this blog develops, but the end result of all of this experience is the solid belief in two essential elements for a well-lived life. The first thing that people really want and truly need is to be happy. As Michael Smull often says, “While alive and unhappy is unacceptable, dead and happy are incompatible.” We have to pay attention to both — choice and safety. The second essential element is to be included — to be seen as and to feel like a person of value, as someone who contributes to and is a welcome part of their community.
Now, defining those terms — happy and included — is about as individualized and as universal as it gets. Getting to those definitions and then making them reality is where the real work comes.
Ah, but it’s wonderful when we get it right and it’s pretty great when we get it close to right… and it sure beats arguing over semantics.
About Gina Lynette
Hello Gina,
Your site is terrific! Your compassionate balance is evident in each word you write. I, too, have an exceptional child, now an adult. Your perspective on focusing on B’s talents and gifts is a strong element to parenting any child. I commend you for taking the necessary steps to ensuring B gets the best education possible. While a strong fan of inclusion, I am a better fan of making sure our kids are happy, productive and well educated.
Your site was forwarded to me my Liz Fussell, who works for the University of Tennessee and is a long time colleague and friend. I look forward to hearing more from you via your newsletters and twitter feed.
If you get a chance, check out our new website focused on 21st Century Rehabilitation Strategies including building communities of possibilities which doubt limits. http://www.TheTangoCommunity.com Tango in our world means Take Action N’ Go with passionate persistence.
Best to you,
Katherine Carol
Thanks so much for your kind feedback. I do try to get to a balance in just about everything, but it eludes me from time to time. Making the decision to bring B home was one of those times until just recently.
I love Liz and have known her for years. I’ll have to thank her for sending you my way. I’ll also have to go take a look at your site.
Gina ;~}