Tuesday, January 6, 2009


I read the letter detailing Willa’s many current and future (potential) symptoms due to her syndrome and came upon this sentence: “Willa will be mentally retarded.” Now I grew up in Massachusetts and can spot a Scarlet Letter when I see one and at that moment I saw it, the large R emblazoned across her onesie, the final diagnosis of her mental capacity and perhaps even of her as a person.

As I have enumerated before, Willa has a lot going on, she’s our baby with extras but this one, the “mental retardation” piece has been an interesting one for me as her mother. When we read “The List” I felt a cold chill go through me when I saw that she would be “retarded.” (I keep putting the word in quotes because it is so profoundly not my word. I will stop but please place them there at your convenience.) Why? Why was this the thing that so devastated me? Willa has a 17% chance of getting cancer for God’s sake and yet this nasty ugly word was the thing that made the tears run hot and steady.

I saw the faces of future kids in her future school, mocking or ignoring her. The people on the street looking away from the family that had such a cross to bear. I hear the second person addresses changing to third person addresses, from “How are you baby?” to “How is she?” I saw my future embarrassment and shame, the shocking and constant assault to my vanity and in that the memories of our own childhood treatment of these kids, our adult inability to see what is in front of you.

When I was a young Girl Scout our meetings were held in the special education room of the local small public school. When we, ablaze with badges and hopped up on cookies entered this room we did not make eye contact with the other kids in the hall because they would call us retards for just going in there. We were tainted. And the children with special needs who inhabited the room during regular school hours? I was terrified of them. They were the ultimate other and it appeared that people did not like them. And so, I kept my distance for fear of their stain and the unpopularity it signaled.

As an adult you want people to ooh and ahh over the very devastating cuteness that is your offspring. I was picturing Baby Gap adorable and wanted the world to feel likewise. VANITY! My God, I am ashamed to even admit it but I have to, it’s true. You want people to sneak photos of your kid on the street, steal glances at their perfect form and claim that they have never ever seen a more adorable child, how can I even bare being the mother of such a perfect example of the human form?

Instead I have doctors who do not look at her, do not engage with her because what is the point? At hospitals I see parents of children with Downs who look away and are amazed when I make eye contact and smile. Their faces betray their habitual treatment, people do not do this, strangers do not make contact. The parents smile back at me with deep surprise and my heart breaks. For all of us.

Now let’s flip this coin over. There is the other side too.

We just watched Tropic Thunder. After the controversy I needed to see what the hubbub was all about. So we watched. We also watched the Public Service Announcement that appeared in the DVD extras at the very end of all browsing, the equivalent placement being in a shoe box, placed in a larger box, buried under furniture in the basement of an abandoned house. A cute little montage of children and adults with mental disabilities with an uplifting message about acceptance and respect. (My God, you could see the meeting where this was discussed and approved. It made my stomach turn.) And I was struck by the feast or famine nature of this whole thing. Either you are maligned, dismissed or ridiculed or you are canonized as a living saint teaching all us mentally proficient people a transformative lesson about love, and the way to a fulfilled life. It’s insulting.

Willa is no saint. She’s no retard either. The word is such a black mark because it functions as an indictment, of her future and of her potential. It attempts to say who she will be and what will happen to her. Rules accepted only by the uninitiated. And this is the important secret that no one tells you. It’s all a lie. It means, and I am understanding this more and more, it means absolutely nothing at all: ash in the wind, a fallacy.

What does this mean for my intelligence? The fact that I have a nine month old running my house, getting me to wash her, carry her everywhere, entertain her at will, live for her favor… This kid knows what time it is.

Thanks Willa, for teaching me about this word. It’s important. But you are a little devil and all the more wonderful for it. I promise you will always be my beautiful and completely untainted, unblemished, unbowed perfect daughter in my eyes, nothing less, nothing more.


Chrystal said...

Wow. What a great post. I can so appreciate this.

IIRC about that PSA, it was made by a parent of a child with Down syndrome living in VA. How it ended up on the DVD, I don't remember exactly, but at least it wasn't created for the sole purpose of the DVD, signed off on by some "suits." I think that in and of itself, it's nicely done. I can only imagine what it's like to see it for the first time the way you did.

Do you care to share your thoughts about the movie? I haven't seen it.

justin ogden said...

i can definitely say that since willa became a part of everyone's lives (although i've only really MET her once) i've given a lot of thought to my former use of the r-word and taken steps to eliminate it from my vocabulary. steps that proved way more effective than that time we had the jar at work i had to put a quarter into every time i said the f-word. i know you remember that one haha.

Colin said...


What a great post. I have added your blog to the Blog Roll on the Costello Kids News web site.


It would be reat if you wanted to add some posts to this site as well, if you do, let me know, you know the email address.

hang in their, you will be amazed at how willa will develop and grow over the next few years.

take care



daisymama said...

Here in the UK no-one officially uses the word "retarded" (similarly the word "handicapped" is not pc anymore) - however the docs now say learning disability to say the same thing. Me, I just say that I have four children who are each special, time consuming, fantastic, unique individuals - everyone else can stick their labels where the sun don't shine!
Steph x

TUC said...

Thank you for your honesty... it cut through me like a sharp blade and broke something that has been knotted up for a while. I feel like throwing up everytime I read the big MR on paperwork concerning my daughter.