Labels Don’t Serve Our Children

I consider my own identity using many labels: woman, mother, advocate, policy wonk, etc.  The trouble is these labels only serve to describe a small part of who I am.  I learned this lesson the hard way as I prepared to send my 11-year-old son off to two weeks of overnight camp for the first time.  My sonlet’s call him by his nickname “Doodle Bug” and let’s also agree to not tell him I’m using this nameis many things: smart, kind, funny, tall, goofy.  We all have labels.

The Doodle Bug also has a label of Asperger’s Syndrome to go along with all of the other labels, and I made the mistake of using that label to describe him to the camp staff BEFORE I talked about all of the rest of the words that could be used to describe him.  The conversation with the camp staff started like this, “Doodle Bug has Asperger’s Syndrome…”  Their eyebrows went up, they raised their chins and nodded slowly.  It was almost as if they were saying, “Ah, yes, I know this kid” without hearing another word about him.  Then they started the rapid fire questioning: “Does he have any behavioral outbursts?”,  “How does he react to loud noises?”, “How much support will he need during transitions?”, “We can get him a 1:1 staff person if you want”.  Oh dear, this had gone seriously off track.  They had made up their minds about who my child was and what his needs were based upon the words “Asperger’s Syndrome”. The kind of support that my child needed at camp was rendered irrelevant because they had a preconceived notion of who he was based purely on his DISabilitybased purely on a label.

While I was at once struck by their eagerness to include the Doodle Bug, I was simultaneously bowled over by the impact that my use of labels had had on these professionals.

The Doodle Bug doesn’t know that Asperger’s Syndrome might be used to describe him.  In my house, we don’t talk about disabilities. We talk about the fact that everyone has things that they are good at and everyone has things that they struggle with.  My daughter gleefully contributes, “That’s right Mama; you’re no good at running.” I can’t argue with the kid, she’s absolutely correct.  We have these conversations intentionally in an attempt to teach ABLEness, an attempt to normalize the natural differences that exist within our world, an attempt to glorify diversity in all of its dimensions.  And here I wasleaving my kid at camp with a bunch of strangersand I had just broken my cardinal rule.  I had used a label to describe my son and now I was back-pedaling as fast as I could to make sure that the camp staff heard ALL of the other things that I had to say about my child.

The lessonnot just for me, but for everyonewhether it’s educators, swimming instructors, summer camp counselors, or religious community leaders is LABELS DON’T SERVE OUR CHILDREN. They evoke false images of a child’s abilities; they speak half-truths about who we are as humans. Labels reduce us to a list of symptoms, they clinicalize who we are, and they allow us to view each other as uni-deminsional.

I challenge us all to use words that describe each other more fully. Better yet, I challenge us to say, “Have you met my son Doodle Bug? He’d like to spend some time with you before he comes to camp for two weeks,” and let people experience our children without the perceptions of someone else mucking up the works.  We would all be better served by this concept of ABLEness.

P.S. The Doodle Bug had a fabulous two weeks at camp and he is already planning how he can subsidize the tuition for next summer so he can go for all eight weeks.

– Jenny Stonemeier

Photo of blog author.Jenny has spent her career working with and on behalf of children and adults with disabilities. After graduating from the University of Iowa, she began her work as a music therapist with children and adults with disabilities in educational and community settings. In searching for an outlet for her advocacy tendencies, and strategies to more immediately address the needs of her clients, she completed a Master’s degree in child and family law through Loyola University Chicago School of Law. In addition to learning that she did NOT want to be an attorney, she became deeply involved in supporting families as they navigated special education, which eventually lead her to working for a Parent Training and Information Center. Through the PTI she gained hands-on experience in public policy, grassroots organizing, and systems change efforts resulting is the passage of substantial legislation affecting the use of seclusion and restraint in schools. Her primary philosophy is “Use Your Power for Good”. She currently serves as the Director of Education Policy with TASH, where her work focuses primarily on TASH’s partnership with the SWIFT Center to build school wide inclusive practices that improve the academic and behavioral outcomes for all children. Jenny describes herself this way: An advocate for people, some of whom have disabilities. A mom of two, one of whom has disabilities. A policy wonk. And public education evangelist.