Showing posts with label Intellectual Disability. Show all posts
Showing posts with label Intellectual Disability. Show all posts

18 February 2014

More Alike or Just Different?

I've been thinking about this for some time now (actually, for longer than I care to admit - *sigh* how I've neglected this blog this past year), but I felt that this post needed to be crafted very carefully. My words needed precision. I couldn't just come out with it. But honestly, it needs to be said.

I am sooooooooo freaking tired of this "more alike" thing. Not only tired of it, but when I really think about how the message "we are more alike than different" frames and positions people with Down syndrome, my son, anybody with an intellectual disability, it makes me angry. And sad.

But honestly? I do it all the time. I'm constantly managing those perceptions. I tell the same story (maybe not with those exact words, but with the same intended meaning). Because systems are set up in a way that I have to, and I have to help other families do the same to ensure our children are included fairly in a public education. And, well, let's face it... most of us do it every day to "show the world" how great our kids are. Correction: the real reason we feel compelled to do it is convince the world our children, loved ones, friends with an intellectual disability have intrinsic worth as a human being.

That's what this boils down to. A way to convince the general public (and teachers, and community sports organizations, etc.) that people with disabilities are just like us so we should give them a chance. Include them. Value them. And, of course, in many regards the message is true. Our children are similar in many regards, and we want people to recognize that. But that has become the primary tool in our advocacy box. That's how we raise awareness and advocate for our loved ones. It's how we tell parents facing a new diagnosis that everything is going to be ok. It's the face of Down syndrome to the world.

But the very act of pushing Sheridan as more like his peers than he is different from them sets up an inherent juxtaposition to his differentness. Sure, we all celebrate diversity. And at the same time, very few segments of our population are still marginalized for who they are - are forced to prove their worthiness of existence. People with Down syndrome and other cognitive disabilities are one of them. Because people with cognitive impairments are often viewed as less human. Intellectual ability is one of the things most valued in people - I know, because I've had to face my own biases around that.

Focusing on the "more alike" message forces our children to measure up. Measure up to the mythical normal. Measure up to non-evidence-based state standards for education. Measure up to people's acceptable parameters for what it means to be human. Measure up to a whole host of other things that in the end don't matter. 

Sheridan is just... different. And I am angry and sad and sometimes feel truly helpless as a mother and advocate thinking about the void that exists in terms of acceptance of his differentness. How his very existence is questioned. "You know, there's a test for that" a (former) friend once told me when she learned Sheridan has Down syndrome. We have plenty of messages in our lives celebrating diversity with regard to race, ethnicity, sexual orientation... but the real issues around how people with intellectual disabilities are (not) valued are captured with a sickening "but wait - we're like you!" 

Let me say it again: Sheridan is JUST DIFFERENT. But not intrinsically less than.

And I will continue to send the message about his similarities, because he's that, too. And because our current paradigm requires that I make people see that he's more alike. 






24 October 2010

Please, God, Let Her Be Smart

This weekend Sheridan and I took a trip to the grocery store (who am I kidding, we go almost every day). As I was lifting Sheridan out of the basket to put him in the car, I overheard three women in the parking lot talking (loudly) about their children, and about their pregnancies with said children.

One woman offered up, laughing, "My sister wanted her girl to be pretty. I didn't care about that. I just wanted my daughter to be smart. Please, God, let her be smart."

The other women laughed in agreement.

My heart sank a little. I was so disappointed to hear her say that. I might have even been a little mad, because of the inherent importance and superiority it displays of "smart" children over "not-as-smart" children.

But really, who doesn't hope for that? I had to check myself and cut the woman some slack.

Those women all had very natural, expected desires for their babies. I mean, really, who proclaims, "Please let my child have below-average intelligence"?

I know for a fact that Gary and I hoped - expected - our child to be intelligent. Most people do. Just like everyone hopes to have a "healthy" baby (which means overall general health, and also means no spina bifida, no Ds, etc.). Can I blame them (and us) for that? Absolutely not.

But it is an example of how we, as a society, place importance on - even rank order, if you will - human life.

And here's the kicker...

Sheridan is smart. He's very clever. He's certainly earned Gary's new nickname for him: Mr. Mischievous.

But most people will not see Sheridan as smart, they will only see his diagnosis. And his intelligence doesn't even matter. He's brilliant in many ways... his musicality, his empathy, his kindness, the list goes on... and so many people will miss all of it.

Yes, it is their loss, but in some ways it's ours (and especially Sheridan's), too. How many opportunities will he be denied because of traditionally narrow definitions of intelligence, and society's easy dismissal of those who who have an intellectual disability? It hurts me to the depth of my soul to think of others marginalizing Sheridan. Pushing people with intellectual disabilities into invisible shadows.

I have no doubt that if the woman in the parking lot had a child with Ds, she could rise to the occasion and would have a different perspective on her comment.

And just to keep it real here... as I mentioned, I'm not immune to these perceptions myself. On Sheridan's very first IFSP (when he was only a few weeks old), we were asked what our biggest concerns were. What were our biggest priorities? Here was our response, as written by Sheridan's service coordinator:

cognitive development

A whole big box full of room to list concerns, and that was it. Two words. The biggest concern for us at the top of heap.

The telling thing is, those two words haven't made the top of the list (or even been written in that box at all) since then.

[As an aside, all these thoughts, observations, and realizations remind me of a great post and the discussion that ensued (read the comments following the post).]