Candice wrote a beautiful post on choice/work the other day. Make sure to check it out.
Her last line was powerful: “allow them to choose with, not be chosen for.”
This is the sentiment that underlies all of our best values: Self-determination, independence, empowerment, and personal choice to name a few.
A few months ago, Candice, Bridget and a few of us were introduced to the concepts of Social Role Valorization, which has been championed by Wolf Wolfensberger, among others. It was a powerful experience for me, and I will never look at my life and work the same way. That’s a good thing. We’ll have to get into Dr. Wolf and how he and his theories have been marginalized (after all, they strike at the heart of the status quo) at a later date. But for now, I’d like to talk about one particular concept presented through a discussion of SRV: The Perpetual Child.
It’s pretty simple, really: part of SRV is simply PR for people with a label of disability.
- How are they viewed by others?
- In turn, how does that view translate to our society’s values?
- Finally, how does that value encourage (or in most cases, discourage) inclusion in life, love, work, homes, etc?
So in the case of the perpetual child, we would ask: How are people with disabilities portrayed as children trapped in the body of adults? Are they given coloring pages at restaurants? Do they carry around stuffed animals? Do they participate in juvenile games as a regular part of their day (as opposed to the occasional silliness we all try to incorporate in our lives once in a while)?
The week after we returned from the SRV conference, Starfire was hosting a birthday party for everyone who had a birthday that month. I watched the party unfold with a new SRV-colored filter. Everyone arrived and seemed excited, meeting new people and talking with friends, and then the festivities started. I cringed as I watched 20 adults with disabilities play Hot Potato with a group of volunteers from a local high school. They played pin the tail on the donkey and bean bag toss, and then went on to have cake and open gift bags where everyone got a brightly colored pencil and notebook, and a crazy straw. It was literally a scene from a birthday party I had just attended a few months prior…the difference was that that party was for a group of four and five year-olds.
The next day, we started discussing how we could offer more grown-up birthday parties. Some people didn’t think it was a problem, and that we were making too big a deal of it. Others thought birthday parties in general were for children, so we’d never be able to offer one for adults. We ended up deciding that we still offer the birthday parties, but we’d split them up so that they were smaller groups (4-5 instead of 20) and would do things that were more like what adults do for their birthdays: go to dinner, volunteer somewhere, snacks n’ board games or attend a show of some sort.
After we made the change, I had a staff challenge me and ask me why I was limiting the choices we offered. I explained SRV briefly and told her how important it is to help our members avoid the image of the perpetual child.
“Oh yeah!” she said, “I get that. When we go out to dinner, if someone asks for a beer, the waiter always looks at me and asks me if it’s OK. I tell him ‘Of course! They’re adults!'” She seemed pretty indignant that the waiter would commit this egregious offense of treating an adult with a disability like a child.
I asked her “And where on Earth would that waiter get the idea that adults with disabilities should be treated like children?”
A look of “a-ha” dawned upon her face and she said: “Because he volunteered at a Starfire birthday party in high school and we played hot potato.”
Personal choice is important. But it can be used (just like “independence”) to relieve supporters of people with disabilities of the responsibility to help them think about the long-term impact of their decisions, both on them individually and the future generations of people with disabilities coming after them. It’s a cop-out. It becomes an excuse to not have to think and work harder to find a new way: “Well they enjoy playing hot potato.” Didn’t we all? But eventually, we had to trade hot potato for more grown-up forms of interactions.
I definitely think people with disabilities can enjoy childish pleasures, just as many adults do! My brothers both get all geeked up about comic books and toys, and they’re in their late 20’s. But they are a policeman/husband/homeowner and a zookeeper/boyfriend/homeowner (in addition to being giant nerds!), so they’ve got status to spare. And there are lots of adults who enjoy comic books and toys. So far, Google has been fruitless in finding me any references to an adult “Hot Potato” club.
If a member of Starfire really wants to play hot potato, though, and it’s their passion, then let’s find a group of adults that also love hot potato, and start the first “Adult Hot Potato Championship.”
Until that happens, we’re going to have to work harder and think deeper to find a new way.