Saturday, January 27, 2007

Thank you, Amanda Baggs

Amanda is the woman who is portrayed in the video below. In the past two days, I've read Amanda's Blog from beginning to end, including all the comments that have been left for her since she started writing.

I am hypnotized by her beautiful voice in the beginning of her "In My Own Language" video -- when I play the video, Paige comes running to hum along with her. Perhaps Amanda's next adventure should be to put that voice to a cd that we could soothe our babies to sleep with.

I don't want to use words such as inspirational or amazing, as I suspect that Amanda does not see herself as particularly extraordinary, but rather understands the limitations of those of us whom society labels "normal."

Indeed, I deserve the "handicapped" label much more than Amanda does. Because Amanda's limitations are more visible to our society, we judge her with many labels that do not even begin to tell us who she is as a person. But my limitations are much more hidden, and much more acceptable to the world.

We perhaps foolishly assume that Amanda needs to be fixed, and set out to fix her. I imagine many people over the course of her lifetime have tried to train her into being a more "normal" person. We go so far as to assume she would be happier, better off, if we could just achieve this state of normalcy for her.

Many of us do indeed see her as an unperson, as she assumes. We fall into the mistaken belief that what you see is what you get, and that, because she looks and acts differently than we do, that she does not have a full range of intelligence, human emotion, and personhood.

For about two or three months, I have been trying so hard to put into words the things that Amanda is telling us. I have been so bothered by the feeling that we are missing something in our "inclusion" quest for our children.

We want so badly for our kids to be a part of the big world that we spent inordinate amounts of time teaching and training and showing them the 'ways of the world' -- and while I fully understand why we do this, and also believe that it is a good thing that we do this, I am also worried that we will spend too much time trying to "normalize" our kids, and not enough time enjoying them for the unique, wonderful human beings they are too.

Five years ago, I would have insisted that Paige be fully included in a classroom of her same age peers for the entire day. I would have fought for that in any way I had to.

This year, my heart and soul have been leading me to a softer approach. Paige needs to be with people who are both different than her and who are like her as well.

She is not broken; she does not need to be fixed. Paige deserves educational opportunities similar to those of her peers. She is a smart little girl, who is classified as "low-functioning" by anyone who wants to label her. But she learns, and she learns well. I can see her observing her world, and trying to understand some of the things that still puzzle her.

She has many friends at school. And I think the majority of those friends are ones who just see her as she is...simply Paige. We have developed a sort of "reverse-integration" plan for Paige this year, where part of her day is showing the children in her classroom about her world as well. The children fight to be the one to spend time with Paige -- to do projects that are perhaps way below them cognitively, but are Paige-led and allow them to really know this wonderful little girl.

They are getting it -- they are understanding what Amanda has shown us in her video -- that we all excel in some way, and we all fall short in others.

Thank you, Amanda, for putting into words something that I could not, even though I am supposed to have a command of the one and only language I use. Thank you for translating it in a way that this limited brain of mine could understand. Thank you for showing the world your value, and shame on any of us who would have otherwise missed it.

Be patient with us, Amanda -- we still have so much to learn.


jennifer said...

Thank you for the post, it's terrific. And I too love the video. I couldn't agree more with your post about her touching lives.

Say I have a blog for parents of children with Down sydnrome and I'd like to link to you. If you want to check it out before you decide I'm at:

I came across you at Neonatal Doc a time or two, and also through Rebecca at Quiet Storm.

Let me know if it's okay?

Tara Marie said...

Thank you Betsy.....this whole discussion has challenged me.

JacquieR said...

Thanks for your post, Betsy. I recently attended an autism conference in Edmonton Alberta and got to hear very thoughtful comments made by Amanda Baggs (with her computerized vocal program). I was blown away and have been searching the internet to learn more about this remarkable person.

I was not impressed by the “drive-by-sniping” post from Fore Sam though I am not surprised. In my research I ran into several examples of this kind of insulting comment from him regarding Amanda. Consistency doesn’t appear to be his strong point though. This was the first "LSD-at-school" theory comment I encountered from him. I thought the following site offered some insight on where he is coming from:

Thanks Betsy. I really like your blog site and will read more of your thoughtful words.

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