Tuesday, October 8, 2013

Awareness ---> Acceptance

It is October, Down syndrome awareness month. With that should come some obligatory posts about how awesome ordinary my girls are. The idea is that if you could become truly aware of what it means to be a person with Down syndrome, you would not treat people who have it any differently than people who don’t.

gotya

I’ve never been quite sure how to make that happen, and last night—during the middle of the night while I was supposed to be in deep repose—it dawned on me: I can’t make that happen. That is because we both have a role in this process. It is my job to bring awareness to you and your job to accept people with Down syndrome as fully human, like you are. And I cannot force that.

Yesterday a woman from the Office of People with Disabilities called to share some program information with me. We talked for a bit and it came up that I actually have three daughters with Down syndrome and she said, "You are such a good person." What can I tell her about Down syndrome that would make her understand that I am no more good than any other woman who has five children at home?

A while ago I was at a Pampered Chef party and as I chatted with a stranger, I mentioned my three daughters with Down syndrome. A very serious look came upon her and she said, "Oh, I’m sorry." How do I explain Down syndrome in a way that lets her know there is nothing to be sorry about?

In early September I sat in a meeting with Masha’s Kindergarten team. Her new teacher was visibly nervous. The team asked a lot of questions about behaviors. What could I say to ease their minds?

Sometimes I feel like a walking Down syndrome commercial. Over and over I find myself saying, "They are just like my other kids except they learn more slowly." (Except for Kimani of course, who really is not like anyone else I have ever met, and in her case I am continuously explaining that "this is not what Down syndrome is like. She suffered brain insults as an infant and has neurological damage." But Down syndrome is what they can see on her, so despite my denials, it gets the blame.)

If you could see Masha and Jade together, you would believe me. While they are miles apart in their academic progress, they are evenly matched in their life skills. In fact, though she is six months younger than he, she is more helpful, gets ready for school more independently, and follows routines better. When it comes to fighting over an iPad, they are even-steven, and it is a toss up as to which one will come crying to me. She rides his bike, pulls him on the wagon, chases him down the slides. He reads stories to her, and gets insanely jealous when she gets one of his sight words right during our games of Word War (an M & M prize is at stake here folks.)

chase

Yes, if you could spend an afternoon with my children, you would know what acceptance looks like. When my boys look at their sisters, they don’t see Down syndrome at all... they see only Masha, or Autumn, or Kimani. They see people not a syndrome, and when that happens for you, I will know that I have done my job well enough that you have been able to do yours.

Tell me, could you ever imagine yourself screaming with joy into the face of a person with Down syndrome?
inyourface

4 comments:

S Calcano said...

I love this. Every. Single. Word. Thank you.

Extranjera said...

Next I think I'll have to ponder 'acceptance' since it seems that there are such varied understandings of what it means in relation to Down syndrome. Sometimes people seem to equate it with like, befriend, or even loving unconditionally, while others see it, as I do, as more of a state in which everyone, regardless of their attributes or chromosome count is granted the same rights and allowed the same space for 'existence' for them to inhabit as they choose. A state in which Down syndrome doesn't denote something akin to a different species.

I don't have to like, love or agree with a person to accept them as fully human and an equal. So within this framework I demand acceptance for my kid, but I don't expect anyone to be her friend or even like her if they so choose, while I don't want her existence to be bulldozed over by 'awareness' that focuses on that which is "associated with Down syndrome."

Lisa said...

This: "Yes, if you could spend an afternoon with my children, you would know what acceptance looks like. When my boys look at their sisters, they don’t see Down syndrome at all... they see only Masha, or Autumn, or Kimani. They see people not a syndrome, and when that happens for you, I will know that I have done my job well enough that you have been able to do yours."

Yes.

Monique Spinzerella said...

Yes! Exactly! Do not say sorry, we are BLESSED! ♥ Love, Love, LOVE this article!!!! Thank you!

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