"Mildly Retarded" is Not a Punch Line

This true story goes under the category of "Oh, Scheeez." I've been off the blogosphere for several days while attending an education conference. I attended a terrific session where the presenter was upbeat, funny, and passionate about his/her subject. I'm smiling and laughing with the rest of the group when something in the system is that is not working and the punch line to the clinician's description was "And that's just mildly retarded." The group of 100+ participants all laughed. I felt like I had been stabbed. My smile was gone. My eyes began to sting, and I was in a panic. I thought about leaving, but something kept me glued to my seat. My body began to warm and then burn with anger. The tears subsided, and instead of continuing to take notes, I began to write the clinician a letter. Here is that letter exactly as I wrote it with brackets for explaining my thoughts more clearly here:

Dear [Name],

As the mother of a child with Down Syndrome, I'm asking you to re-think using "mildly retarded" as a joke line. This was so painful to hear a group laugh [around me], although, not directly about the use of the cognitive challenges of those with DS [it still hurt]. I can hear you are a passionate and caring educator and you know the power of [your subject] for all children. Please, reconsider.

Because of that extra chromosome my daughter's heart and digestive system were also retarded physically. These challenges contributed to her death at 11 weeks. I recognize this note is from a bereaved mother and perhaps some believe I should understand the ease some use this word for a smile. However, I must honor my daughter and voice my concern. Thank you, for considering my plea.

I signed it and spent much time sitting and staring with feigned interest as I contemplated whether I would deliver the letter. The pain had eased for me as I wrote the letter, but did I need to deliver it? I've been a presenter many times, and I would not have appreciated such a note because, I would not have had an opportunity to personally apologize. But, could I voice this objection and request in person? I knew I couldn't do it publicly; I didn't want to become someone others would gossip about through the rest of the days of the conference. "Were you there when that mother started crying and got so upset about something the presenter said?" "Who was she?" "What's her problem?" "I feel bad for her." That would have made it about me and not about educating someone who educates another to think carefully about the message he/she sends about individuals with special needs.

But, it was about me. It was about the real pain I felt when words were used that had the effect of dishonoring my baby and others with DS. It was about the need to advocate for sensitivity in this educational setting, after all, I hadn't paid a fee to see a stand-up comedian. I looked down at the session hand-outs and saw that one of the suggestions was to "be a risk-taker." And so I decided to take a risk.

Risk, being known as oversensitive.
Risk being known as "crazy bereaved."
Risk being a conversation topic.

Upon choosing vulnerability after the session, I patiently waited to talk with him/her. And I shook his/her hand and didn't let go. I pulled myself closer to him/her and said the words that I had concisely practiced throughout the rest of the session.

"[Name], I have a personal request. I'm wondering if you would reconsider using "mildly retarded" as a laugh line. I have a daughter with Down Syndrome and this was . . ."
He interrupts with a hug, "Oh, I'm so sorry. Of course. Of course."
But, I had more that I had rehearsed.
"Not only was she retarded, but she was physically retarded as well, and so her DS contributed to her death."
Another hug with an "I'm sorry" but this time I can see a true human connection.
"I'm taking a huge risk in asking you this, I know. But I think that it was because of the kind of person you have presented yourself in this session, that let me know that you might be receptive. After all, I am an advocate for Arts education, but I'm also an advocate for children with special needs. Thank you."
He hugs me again, and I leave.

There may be gossip. There may be talk. I hope there is. People ought to consider how easily they marginalize others with their words. People, especially educators ought to think carefully about how seemingly innocuous "jokes" can hurt and send a message to others that it's OK to use another's life challenges (such as mental retardation) to make themselves or others feel better through laughter. And people ought to make their voice heard when they feel the hurt when the ones they love are marginalized.

Now, some will read this story and want to know, "Who was that?" "Where did it happen?" I believe from the presenter's words and actions, that he/she was receptive and his/her response was sincere, and I was most appreciative. So, I ask that you don't go there--to focusing on details that blur the purpose of telling the story. Because, I'm certain that who and what is not what's important here, this is not a newspaper story. To my mind what's important is that we think about our words, and the intended and unintended messages we send to others.

Back to Basics II

I guess I'm calm enough to explain. It just irritates me that our education system continues to sell accountability to parents with the "back to basics" and more recently the "standards-based education."--as if the score on a test would make a child's life better.

No-one escapes the pain of grief and the challenges of life and when the basics fail you, what sustains you, I believe, are the those intangible, seemingly "frills" of education--music, visual art, dance, theatre, poetry, and literature. This struck me on a personal level, when I tried to respond to a prompt to use some visual art as a medium for expressing my grief, but I don't have any skills. I have no education to draw from; no understanding of perspective, light, or color, and instead of rendering an image from my mind's eye, I wrote in CAPS, my protest. It just seems that there is so much "putting in" and not enough providing of the vehicles we need for "letting out." There's no money in providing youth with the tools to enhance their lives---much better to "sell" comfort, enjoyment, and fulfillment. Ha.

When you're gone, no one cares about your score on a reading test, but they will remember if you sang a loving song to them as they grew, read a story with the excitement of an academy award winning actor, or helped them see the beauty of a sunset or sunrise. And that's back to the basics that count.

There, I said it, and I'm glad.

Back to Basics