I think my daughter was about 3 when I snapped this photo of her. Look closely at her feet. You’ll see she is trying on my high heels she found near the front door even though she isn’t even really dressed for the day yet. Doesn’t every kid do that at one time or another? My shoes look so big on her feet. As it turns out, those shoes and that role became her dream. I’m sure those are the heels I had on as a taught that day. Kelsey attended the school where I taught, so it wasn’t such a stretch to understand why she wanted to grow up to become a teacher.
But life did a reversal on us and today I try to fill her shoes. You see, Kelsey was diagnosed with brain cancer when she was only five. The brain radiation required for her to survive, altered her IQ significantly. Radiation that kills cancer cells also kills healthy brain cells. So not only did Kelsey battle cancer she was changed from having an above average intelligence to becoming what society politely calls “special needs.”
Watching this happen to her changed me dramatically as a teacher. I learned what it feels like to sit on the uncomfortable side (the parents’ side) of the IEP table. I experienced how it felt to see her friends begin to turn away from her. I helplessly watched her social loneliness during the high school years. This changed me as a mom, a person and especially as a teacher.
So what did I do about it? I’m not a celebrity. I can’t challenge big stars on TV to dump buckets of ice water over their heads even though watching Kelsey’s battles felt like ice water being dumped on me daily. Celebrities wouldn’t answer any challenge from me. Day in and day out, what did I do? I’m a teacher. So I talked about Kelsey in my classroom. I made students understand her battles. I made them think about what it would feel like to walk in her shoes.
In one way I was very lucky. I happened to teach high school students who wanted to become teachers. I assigned each of them to write an essay about what it would feel like to walk through a day of high school with a disability. I made them put into words what it would feel like to walk into a cafeteria full of typical kids if they had a disability. How would it feel to walk in the hallways or go to a dance? I made them share those essays out loud. They hated this assignment because it made them feel so uncomfortable, but they did it…for a grade. Before they wrote these essays I read an essay that I had written about Kelsey. I wrote it in Kelsey’s voice even though she didn’t actually write it. I used exactly the words she had shared with me about the rejections she experienced. To hear her true story made them squirm in their seats.
When I spoke at teacher conferences, I used to give out my essay to other teachers. I’ve received letters and emails from teachers all over the country who have used this essay in their classrooms. The title? ‘Nobody Wants to Have a Disability, But I Have One.” I made each of them start their essay with the words, “My name is (and they had to use their own names) and I have (name a disability). Then they had to write about a full day of school with that disability. I made them focus on their feelings, not just the facts of the disability. How did it feel to walk through a day of school with that disability.
As they read these essays orally one after another, I could feel a shift in my classroom. They hated the activity but they won’t ever forget it.
Then I had my Teacher Academy kids (high school juniors and seniors who wanted to become teachers) start a Friendship Club with the high school kids in our school with disabilities. We planned monthly shared activities with them. I watched true friendships form. No matter what subject they planned to teach in their futures I wanted them to understand how it feels to be excluded. I wanted all of them to become teachers who included everyone. I wanted them to change the culture within their future school buildings. I believe once we actually have to face the feeling of being excluded, once we can link a personality and an actual person to a disability it can’t help but change us inside.
Often I am invited to give speeches to special educators and I enjoy those invitations. But I MOST like to talk to what we call “regular educators.” I like to share stories with teachers who haven’t been specifically trained to work with kids with special needs. Those are the teachers who most need the messages Kelsey shared with me. I’m a “regular educator” myself and Kelsey experiences first had to change me.
A strange and unexpected thing happened as I shared Kelsey’s message. This is something I didn’t plan at all. As a direct result of hearing about Kelsey’s experiences, an amazing number of my students became special educators themselves. (Today we call them intervention specialists). Let me repeat, this wasn’t at all my goal, it just happened. Without even trying I dumped buckets of ice all over them. Just putting a person’s name and face to the experience drenched them with new understanding. They now wanted to become change agents themselves.
Sadly Kelsey didn’t live to fill my shoes and become a teacher herself. She died at age 16 after an eleven year on-and-off battle with brain cancer. Today I still attempt to fill her shoes as I share her story one student at a time. We teachers sometimes have more power than a celebrity. One day at a time, one student at a time, one story at a time, we change the world. We have the power of a thousand buckets of ice if we just recognze it and use it for a positive purpose.
One day while teaching some aspect of child development in the classroom, I told another story about Kelsey. A student asked with impatience in her voice, “Why do you talk about Kelsey so much?”
Now you know. I have big shoes to fill.
TEACH…To Change Lives
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