the invisible child

Last summer, I wrote about social exclusion from a mom’s point of view in a piece called The Invisible Mom.  It was originally published on the Bloom blog and then picked up by Huffington Post and Seleni Institute.  It still gets retweeted on occasion.  I know that the topic really hit a nerve.

Liz Lewis, an anthropologist, writer and sister of a woman with a disability, published In the Community, but Alone on the Bloom blog today.  I’m still in my pajamas and nursing a cold cup of coffee, but her essay made me outraged.  Not because I disagreed with her sentiment, in fact the opposite:  I was outraged at a society who continues to happily exclude people with disabilities in their world.  Our loved ones are ‘allowed’ to go to community schools, or live in the community, but are they actually embraced by the community as one of their own?  In Liz’s sister’s and my son’s experience, the answer is no, no, no.

What the Invisible Mom was about was about having an Invisible Child.  True, my son’s disability is also manifested in a physical way – you can look at him and know he is different.  So he gets stared at a lot (which I’ve learned to tune out over the years), but is he welcomed and included in the community?  No, he’s not.  My husband tells me that it is tribal:  that people fear people who are different.  But it is 2014!  We have committed to inclusive education so that he IS included – and that to me doesn’t just mean the school tolerates having him sit in the classroom.  Inclusion includes social inclusion, but here’s the stark reality:  while the teachers do their best to ensure he’s included in all activities, including recess and gym class, the sad fact is that the other children do not include him socially, in a meaningful way.  Number of birthday party or playdate invitations from school?  Zero.  As an assistant principal said to me:  we cannot force kids to be friends with your son.

I think we need to turn this issue upside down.  I’m tired of being told to be the super fun mom so kids want to come over to our place and be friends with Aaron. (Um, which hasn’t worked lately anyhow). I’m tired of hissing at Aaron to ‘behave’ and ‘not to be weird’ when we are in public, for fear of the stares and judgement.

How about we stop using the word ‘society’ and start saying you.  

How about you, parents of typical children, work hard to teach your children not to be afraid of all of those with differences?  How about when you talk about diversity, you include children with disabilities in your formula?   Why is it up to us to always beg and plead for you to remember our child when you are crafting birthday invitations?  Why is this my responsibility and not yours?  Do we all not want to teach our own children to contribute to a kind, welcoming and diverse world?

Change is never going to happen unless we start talking about these issues honestly.  Thank you, Liz Lewis, for introducing the important topic of social exclusion in a reasoned and rationale way.  I hope that it hits the mainstream, because that’s where these hard conversations need to happen….

EDITED TO ADD:
My husband constructively suggested that this post was mostly venting and contained no practical advice.  What’s the solution to the issue of social exclusion?  I’ve thought about that, too!

Here are some tips and hints about talking to kids in the classroom about a child with Down syndrome (or any other difference):  The Down Syndrome Talk.  And for families teaching their children about diversity and differences?  How to Become Part of Aaron’s Village.  It starts as simply as smiling and saying hello.

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