Labels. They are everywhere we look…on our food, on our medicines, on our clothing. Labels are descriptive, informative, sometimes even life-saving but they are also limiting and narrow. They can help us navigate the world and they can help us make informed choices but labels also prevent us from forming our own opinions and being open to new things. When labels are assigned to people, they can predispose us to judgment and can prevent us from seeing someone for who they really are.
The students in my visual and performing arts programs have to live with labels that are assigned to them by our society…relatively innocuous ones like different, disabled or developmentally delayed and offensive ones like retarded, odd or weird. These labels are based on the diagnosis they’ve been given. Roughly 20% of the US population has special needs and for them, a diagnosis is a useful thing to have – a diagnosis gives them access to services that improve their lives, can prepare organizations like mine to meet their needs and can help educators assess them for appropriate placements. But the labels that accompany the diagnoses are never useful.
Our society claims to celebrate diversity, to embrace the differences between us and yet we rely on labels to categorize, stereotype and pigeon-hole each other. I want to know why. Is it just convenient? Does it make it simpler for us to avoid people or things that might make us uncomfortable? Do we label folks so we can decide who to let in and who to exclude from our lives?
I’ve had to learn a lot of acronyms over the past six years like PDDNOS – pervasive developmental delay not otherwise specified. This is a mouthful that basically means that a person is not developing at the rate of his or her typical peers and their symptoms don’t match up to any existing diagnosis. Some of my students don’t even have this diagnosis – some just don’t learn or develop the way most of us do and there’s no way to explain why. Not having a diagnosis presents its own challenges to my students and their families. Even one as vague as PDDNOS is better than no diagnosis at all.
Take Cami, for example. Cami is 14-years-old and has been with JSAP for five years. She attends an alternative school where she is in a classroom equivalent to a 5th or 6th grade class in a typical school. There is no medical explanation for the delays in Cami’s development so, like a lot of people, she falls into a category that’s basically like, “We don’t know what’s wrong, we just know that something is.” In the absence of a diagnosis, the labels kick in on overdrive.
I could use a lot of labels to describe Cami that tell you a lot about who she is – teenager; female; brunette; visual artist; stage performer. I can’t even let myself think of the negative labels that some people might use to describe or categorize Cami. I thought I knew Cami pretty well but last weekend I discovered something about her that I didn’t know – something that has given me a new, better label for Cami. Cami is a philanthropist.
Cami and her teammates in Project UP were in Atlanta at the NRG Dance Project Competition. During the awards ceremony at the end of the evening, NRG founders Nick Gonzalez and Rustin Matthew announced that they were about to do something unprecedented and exciting. The 200+ dancers who were sitting on the stage leaned forward in anticipation, holding their breath to hear what this great thing would be. Nick and Rustin told the kids to look to the ceiling and count down from five. After everyone counted down “5, 4, 3, 2, 1,” 2,000 $1 bills floated down from the ceiling! As it rained money on them, the dancers reached for as many bills as they could grab. No one was too aggressive about it but it was clear that all 200 kids on that stage sure did want to catch some of that free money.
When the competition was over and the last award had been handed out, Cami found her way to me, holding out two $1 bills and smiling sweetly.
“Wow,” I said. “Congratulations, Cami! I’m so excited for you that you caught two dollars!”
“I caught it for you,” Cami answered.
“Yes ma’am. I wanted to catch some money for you to put in the donation box at Merrimack Hall.”
Knowing Cami the way I do, I know it took a lot of guts for her to join in the fray and attempt to catch those dollars. I’m sure she was overwhelmed by the noise, the crowd, the other kids who were grabbing for the same prize she was. Other kids were probably trying to catch the money because it was fun, or because they are competitive, or because they wanted to buy a frappe at Starbucks. Not Cami…she wanted to catch some money so she could give it to me to use at Merrimack Hall.
According to Webster’s, a philanthropist is “a person who seeks to promote the welfare of others, especially by the generous donation of money to good causes.” That label fits Cami – and many of her teammates who have asked for donations to our program in lieu of birthday gifts – much better than of the other labels she has been given. Until we get to the point where we actually do celebrate our differences, wouldn’t it be nice if the labels we gave to each other described who we are on the inside instead of what color our skin is or where we worship or what our sexual preference is or what we can or can’t do?
The people with special needs that I know live with labels that predispose others to judge their abilities before they ever have a chance to show someone who they are. In an effort to provide services, mainstream and include, our society tells us right off the bat that a person with a disability is different from the norm – physically disabled or developmentally disabled are the first labels my students are given and those labels follow them for the rest of their lives, everywhere they go and in everything they do. It didn’t take me long to realize that none of these labels is accurate and if you spend a little time around people with special needs you’ll realize it too. Once you start thinking about the negative nature of labels for one group of people, you’ll find yourself noticing the negative nature of labels for any group of people.
Labels on people should come with their own warning label, something like, “WARNING – this label is not adequate to describe the person it is being assigned to and is possibly being used to facilitate exclusion, bias and discrimination.” If a label carries with it a negative connotation, we should mark that label “expired.”