down syndrome othering, girl with down syndrome looks down

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This is an essay about an experience that I had with my daughter’s camp last year.

Last year my daughter attended a theatre arts camp. It was a day camp, and she was the only teen there with Down syndrome. She was surrounded by other children, tweens and teens, mostly without any type of apparent disability.

All three of my kids were in the camp. They did not interact a great deal with each other due to differing groups. When my younger two did interact, they sometimes squabbled, but everything seemed to be going well at the camp. Overall, all my kids seemed to be having a good experience and seemed to be learning and welcomed.

I wasn’t prepared when, right before I was scheduled to see a client for mental health therapy, I received a call from the camp. The person calling me was in a tizzy, upset about my daughter. He was not making a great deal of sense beyond the fact that he wanted me to come down to the camp immediately. I told him I was scheduled to see a client but could cancel if necessary. He said it was necessary – an emergency! –  and I duly cancelled my client’s session and ran down to the camp.

The person who had called me was not there when I arrived, so I went in search of the camp counselor in charge of my daughter’s group. Finding the counselor, I asked him what was going on. The young man, also a teacher at a local high school, turned to me with concern and stated that my daughter had been talking to, flirting with, and trying to touch a boy in her group, and that they didn’t know what to do.

I feel I should state at this point in the story that my daughter is affectionate but she’s not a huge hugger. She’ll typically only try to hug boys she has a crush on. If the counselor was telling me she was trying to hug a boy, then clearly, she had a crush on him and was trying to explore that.

 “Well,” I said, shifting my bag on my shoulder and looking at the counselor in the eyes, “she’s 13. What would you do in your classroom with a 13-year-old girl who was behaving like she is?” The counselor continued to look concerned and with sincerity in his voice said, “I would talk with her about it.” “Well, have you talked with her about it?” I asked, nodding my head encouragingly. “No,” he said. There was silence, some gazing at the floor. Finally I asked, “did you not talk with her about it because she has Down syndrome?” “Yes,” he said looking back up at me with what appeared to be relief, “I didn’t know if there was something I should do because of her…. special needs.” “You mean “disability,” I said, and he nodded, diffidently trying out the word himself, “disability.”

It hit my suddenly. He did not see my daughter as a 13-year-old girl exploring a crush. He saw her as an ‘other,’ someone who was so fundamentally different that, despite being an active participant in this camp, he couldn’t talk to her as he would any typically developing 13-year-old student of his. He thought that the only person who could talk with her was a specialist, or her mother. He had alerted the camp administration that there was a big problem, and because she has Down syndrome, the “expert” – aka, “mom,” was called, mom’s work had to be cancelled due to this “emergency”, and mom had to come to deal with the behavior.

All of this, over a teen crush.

They didn’t understand that people with Down syndrome are human, not an ‘other’. They didn’t understand that people with Down syndrome have crushes and behave inappropriately sometimes. People with Down syndrome aren’t angels. They didn’t understand that if my daughter disrupted a practice by flirting with a boy, they were supposed to do what they’d do with any other girl her age – talk with her about it. Ask her to stop.

The first step is really that simple.

Somehow in the folds of her eyes and the physical expressions of her extra chromosome, her humanity was lost to them. Somehow in her difference, the very elements that connect us were lost.


The second part to this essay is linked here: A Story of Othering, Part Two

Down syndrome and othering, image of a girl looking down, in purple sepia tones

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