MIA’S SPACE: Building a Currency of Choice

By Pat Nobbie, PhD, Mia's mom

Andrew Solomon, author of Far from the Tree: Parents, Children and the Search for Identity, writes, "I believe choice is the only true luxury, that the striving inherent in decision-making gives decisions value. In modern America, choice is the aspirational currency ... I'd like to imagine a future in which we would be able to choose everything."

If choice is the currency, or a true luxury as Solomon says, who is holding the bank on choice? Where is choice stocked up? Is choice something you lose if you don't use it? Do you have to earn the right to make choices? Who has the power to grant us choice or take it from us?

There could be great debate about this, but let's think about who gets the luxury of that debate. The service system we have constructed for people with disabilities is holding the bank on choice. We created the terms by which people needing support get to choose – or not. We are concerned for their health and safety. They may not choose wisely. They may be influenced or taken advantage of.

So we say they can choose from this list of things we have decided are "safe." Or we authorize someone else to choose for them. We have a hard time supporting someone who has challenges in communicating to choose anything – where they want to live or work, what they eat, who their friends are or if they even get to have friends. We aren't very skilled at this, so we've created a system for deciding very important things for people.

It's hard to make choices when you can't picture the outcome. How often do the rest of us pick where to live from a list? How many of us would move in with people we had never met? We want to see the places and meet the people because not doing that is risky. We feel more vulnerable when we are less certain of the options. Yet this is standard practice for other people whom we consider to be more vulnerable than we are.

A couple of weeks ago, I spoke to a group of advocates about how this is the furthest I have lived away from Mia and it was scary to cede the risk to her for taking more control. But there she is with her great life, and here I am trying to figure out how that works for other people like her. I keep thinking about the power of person-to-person movements.

When people get to make real choices, and others see the result, they begin to picture something different, and begin to ask for it themselves. Later that day, one of the advocates in the group thanked me saying she can now picture possibilities for her daughter's choices that she hadn't pictured before – just like another mom had shown me something different for Mia's life long ago. Just like Mia's life shows possibilities to her group of friends.

Person-to-person movements show that we can bank a currency of choice so more people living in the community get to draw on it.

Tags: Making a Difference