Sunday, March 15, 2009

"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.


  1. I'm so sorry. I feel the same way about people using that word so freely. I think it's great that you had the courage to let them know how you felt instead of just keeping it bottled up inside.
    Your daughter is beautiful.

  2. Oh, that took so much courage! Caitlin surely helped guide you to find your voice and speak out.

  3. i'm proud of you for taking that risk. it's so important for us to share our truths.

  4. I'm glad you said something. You spoke for my baby too and I thank you.

  5. You are so brave, and true to your beautiful daughter. I admire your strength. I feel you were speaking for me, and for my daughter as well. I sincerely thank you.

  6. I am so grateful for your encouragement and validation. Sometimes, I think about this incident and I feel so "sanctimonious" and that's not my intent, but it is my intent to not be silent when words hurt myself and others. That you feel I spoke for your babies too, made my tears flow--in that good way, we know so well. Thank you.

  7. Wonderful that you spoke your mind and did so thoughtfully and graciously. Thank you for sharing this story.

  8. Good on you for being so brave. I'm so proud of you.

    I read so many sad posts and these days it takes a lot to upset me. This one has me crying great big fat tears.

    'Redtarded' is not a word I use lightly either. People need to understand what it really means to the people directly affected.


  9. This picture of your little girl is adorable! Thank you for sharing it. It makes me smile to see her. I'm so sorry that she's gone.

    I hate that word "retarded." It's a grade-school word that kids shouldn't use, let alone adults.

  10. You handled this with such grace and charity. Thank you for doing that. Simply requesting that he/she consider how labels and offhanded comments can cause hurt and anger was likely incredibly enlightening for the speaker.
    And, your daughter is absolutely beautiful. I love her cheeks. I love her arms. Just perfect.

  11. Good for you! That takes a lot of maturity and strength to calmly share concerns like that with such deep emotions attached. I'm glad you shared this--I think I will handle similar situations better in the future.

  12. Bravo Bravissimo
    I bet the presenter was humbled and provoked by your response. Good on you for standing up for your daughter, and for the many in this world who face challenges every day because of their disability, (alot of the challenges being others disrespectful response to their disability).

    From a spec ed teacher


  13. PS - That is a beautiful photo of your daughter. I am sorry she is not here.

  14. I admire your courage. Thank you for sharing your story.

  15. BRAVO!!! That is so well said, and you should be proud of yourself. I am very humbled by the stand you took in your daughter's memory- and for your love of her.

  16. Followed your link back here.

    This was TRUE courage. To stand up for yourself and your beautiful daughter and risk being called out or ignored.. True, true courage.

    Your daughter is amazingly beautiful.. I was touched as I read the letter, but when I reached her picture, the tears spilled over.

    I'm so sorry for your loss.

    Thank you for your words on my blog.


  17. I followed this link from today's post and just want to commend you. That was in no way sanctimonious. It is important and true. People need to understand how very powerful words are, not just to us, but to children who hear adults allowing words to take on ridicule. Thank you.

  18. I am SO GLAD you said something. I, too, am an art educator and an advocate. I work with people with disabilites and am an advocate for them, and I create programs for this wonderful community within a museum environment- the BEST job in the world. I never ever let people get away with saying/joking about "being deaf, blind, or retarded." I politely explain the correct way to say something ("people first" terminology) or why what they said is hurtful. I would have done what you did. BRAVA to you!

    I am so sorry for the death of your beautiful daughter.

    You now have a reader to your blog!

    (here from Creme)

  19. I landed here from the crème de la crème list.

    I'm very sorry for the loss of your daughter. Having salt rubbed in the wounds like that, out of the blue, is an awful experience.

  20. I think you handled it very well and I'm glad the speaker was open to not using those words anymore. It would've stung me too to here that person say that.