Do you remember how there was a section on my heart map that was marked with a band-aid? Today we’re going to do a little exploring in the “painful” section of our hearts. How deeply you explore is up to you—only go in as far as you feel you can today. Or skip it and come back another day, when you want to. This is your journey—you choose the path you want to take.
But if you feel ready for a little trip into band-aid land, I’ll start you out with a visit to one of my own Shadowland destinations. Then we’ll do an activity to explore one of yours.
When I was in second grade (back in the dark ages before whiteboards), we used to do something in Language Arts called “sentence lifting.” The teacher would look through our papers and pick out sentences that needed to be corrected. She’d “lift” the sentences from our papers and write them on the blackboard, and then we’d copy them down and make corrections.
I never minded sentence lifting—my sentences rarely made it to the board. But one day, a sentence appeared on the board that made me want to crawl under my desk and disappear. The sentence read: I feel sorry for Frances because her brother and sister are retarded.
I felt like someone had slugged me in the gut.
My breath squeezed out of my lungs, and my face got all hot. I stared down at my green lined paper, and everything went out of focus. I remember the teacher walking by my desk and asking if I was okay. I got back to work after that, but I felt like everything was moving in slow motion.
To this day, it’s hard to separate out all of the complex emotions I felt when I saw that sentence staring at me—and at all twenty-five of my classmates—from the front of the room. I’ll try to sort them out.
1. Anger—I was furious that anyone would feel sorry for me for anything—let alone for having Bobby and Jeannette in my life. Now, this was back in the days when kids like Bobby and Jeannette were usually sent away to live in institutions, and there weren’t many disabled kids living at home with their families. Other people weren’t really used to the idea of having kids like Bobby and Jeannette out in the community, and they thought it was bad for “normal” kids like me to grow up with such a “burden.” Good thing my parents knew better. And even though I didn’t know much about institutions when I was in second grade, I knew that I could never imagine living my life without Bobby or Jeannette. So I was practically shaking with anger at the thought of someone pitying me for living with the siblings I loved so much.
2. Embarrassment—That sentence glaring at me from the board was like a blaring neon sign that said, “Frances is DIFFERENT from everyone else in this room. Her brother and sister are DIFFERENT from everyone else’s siblings.” Now, I was not the kind of kid who wanted to be DIFFERENT. I was proud of the fact that I was half Japanese—that was a kind of “different” that I didn’t mind at all. But “different” because other people thought there was something wrong with my family? Not okay at all. That was the part of me that wanted to crawl under my desk and disappear. Because I realized that Bobby and Jeannette really did look DIFFERENT to everyone else in the world, even if they didn’t look so different to me.
3. Confusion—I knew that whoever wrote the sentence had to be one of my friends. My brother and sister went to school in another town, where there was a program for other disabled kids—that was the way things were back then. So most of the kids at my school didn’t know I even had a brother or sister. Only the friends who had been to my house would have met Bobby and Jeannette—so how could they possibly feel sorry for me when they knew my brother and sister? I just didn’t get it. I loved my friends. I loved my brother and sister. How could my friends not see Bobby and Jeannette the same way I saw them?
4. Gratitude—Who would have guessed that in a weird way I was grateful to whichever friend wrote the sentence for caring about me? I realized that they recognized that things weren’t simple living with two disabled siblings. So, even though most of my emotions were strongly and fiercely opposed to the idea of being pitied, a tiny portion of my brain realized that someone wrote the sentence because they wished my life were simpler. Easier. Less complicated.
5. Pain—It hurt to see the label “retarded” written on the board to describe my brother and sister. It hurt because I knew, even as a seven-year-old, that people would see the label and not see the people behind the label. I knew that “retarded” meant other people could dismiss them as being something less than a whole person, that they didn’t have to think of Bobby and Jeannette as individuals any more, but could lump them into some vague idea of what “retarded” was. And since the word “retard” was such a common schoolyard insult, it meant they could lump them in with the lowest of the low. It meant they were too dumb to matter. And nothing could be further from the truth. So it hurt—a lot.
Since it happened over forty years ago, you could certainly say that I lived through that moment and was able to put it behind me. But the truth is, that moment had a profound influence on me. It made me realize that not everyone sees my brother and sister (or even me!) the way I do. I think it may have been a turning point in my life—a moment that made me realize that I wanted other people to see Bobby and Jeannette as important, valuable human beings, and not just as “burdens” or “retards.” I wanted them to see me as a regular kid with a regular life, not as some kind of saint or a long-suffering, overburdened sibling.
So, today I’m going to ask you to make a list of the things that you would like other people to know about you when they learn that you have a disabled sibling. The stuff that makes you a real person, and not just someone’s idea of what the sibling of a disabled person must be like. If you want, you could also make a list of things you want them to know about your sibling, too.
At the time of the "Sentence Lifting Incident", my list would have looked something like this:
I love to read, and read and read.
I take piano lessons, and I HATE practicing.
I can be bossy to my brother.
I love toads and frogs, and I like to make terrariums.
I am good at school stuff, but I am not a very fast runner.
I wish my mom would not yell at my brother when he gets upset at the grocery store.
I wish my little sister could walk.
I wish I had white-blond hair like my good friend, Beth.
I want to be a marine biologist like Jacques Cousteau when I grow up.
Sometimes when I get mad, I go into the closet and shut the door and scream.
I hate people who stare at my brother and sister.
I am scared of “The Wickerson Brothers” from the movie “Horton Hears a Who” and I hate the flying monkeys in “The Wizard of Oz.”
Tyrannosaurus Rex gives me nightmares.
I am shy around strangers, but I am LOUD at home with my family and friends.
I am a regular kid with a regular life.
For my brother at the same time, I would have included things like:
Bobby loves to watch Captain Kangaroo.
He brushes his teeth better than I do.
He is good at shooting baskets.
He loves to ride on his Big Wheel bike.
He shares everything with me.
He likes to laugh at jokes even if he doesn’t understand them.
He cries if he gets scared or if he can’t have something he wants.
He works hard in school and he has neat handwriting.
He remembers everybody’s birthday in the whole family, and all our friends’ birthdays, too.
He has the TV schedule memorized.
He has a kind heart.
He is a good big brother to me.
You can leave your lists and be finished with today’s activity, or you can explore further. Are there times when you’ve felt that people judged you or your sibling without really knowing you? How did that feel? Have you had complicated or mixed feelings when being confronted with your sibling’s disability? What were the different feelings that surfaced? Did any of them surprise you? What do you want people to see when they look at you and your disabled sibling? What don’t you want them to see?
