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.