Tuesday, November 27, 2018

Weight or Burden?

Yesterday we were at an event with Ruby and Sadie and their mom. It turned out not to be a really 'safe environment' for me. I was subject of both whispered comments and stares. There wasn't a moment, the whole time, even when the main activity was going on, that I wasn't being examined, probed and judged by intense stares of others. It was also an environment that it would have been totally inappropriate for me to confront any one, or indeed, the room as a whole.

But what I noticed wasn't so much what was happening to me, but what was happening to Ruby and Sadie. They were there with me and as such were also stared at. The questions the eyes seemed to be asking of them, "Why are you with that big thing there on wheels." I state it that way because I don't believe I was fully human to any but mine during that time.

But the kids bore it all. It didn't deter them from spending time with me, posing for pictures at various spots in the room, laughing, joking and posing and just being kids.

But I could see that it was work.

I could see that it was intentional.

They knew better, and therefore behaved better, than anyone could have expected them too. I was proud of them for their courage, their defiance and their characters.

Difference brings with it challenges.

For the Different.

And for those who dare to love them.

My difference can be a weight on their shoulders but that doesn't mean I'm a burden. There is a difference. A weight is simply carried and burden is resented.

And so they carried me.


That's not true is it.

It's what we tell ourselves.

And so they carried the weight of other people's prejudices. They stood tall refusing to be bent under the pressure of peers.

They are not exceptional kids.

Loving or caring for someone with a difference or a disability doesn't make someone exceptional.

They are, in stead, kids with fully functional hearts and minds and souls. They are kids who decide for themselves what they will and will not accept. Me the accepted, prejudice they did not.

When I got home I relaxed into the comfort of our home. No stairs or stares in my place. I'm safe. But I took a moment to think about what happened.

One can get used to the courage of those who surround you with love, one can forget the courage it takes to stake a stand every time, every place, every occasion that they are out with you. i don't want to get used to, or forget this. I want to SEE the whole experience of disability and difference and I can't do that unless I see my experience in relationship to those with whom I am in relationship.

Disability makes a difference.

But not just for me.


clairesmum said...

I remember hearing you tell the story of Ruby announcing 'MY Dave" to some rude folks at a swimming pool years ago....you are loved, Dave.
and also by folks in the blogosphere.

Ron Arnold said...

As I've read your blog over the course of a few years - a thought has been forming in my head about what it is to be privileged. It hasn't been clear to me as an able-bodied, hetero-normative, CIS gendered, white male. (I use those terms with utterly no sarcasm.) It seems to me that privilege is: being able to afford to not give two shits what other people think about your opinions, your ability to do something without recourse, or in regards to your presence anywhere.

I have seen people that pretend to not give a shit - but you can tell they do. You just can. The pretending is a veneer. When it's not a veneer . . . you can tell that too.

Your story makes it very clear to me that privilege's presence and its absence are VERY clear to those that DON'T have it - and is a virtual blind spot to those that do. Privilege is a taken for granted "given" - so much so, it's an unseen / unspoken "right" to those that have it.

I'm glad you are helping to open my eyes Dave. Thank you.

Jasmine said...

Wow. You captured that feeling so well. I also live in that place of gratitude for the relationships around me. Even when I'm not in a "safe space," my people can create safety around me and that makes all the difference. Thanks for using your words so well to explain all the complexities of living in a disabled body. I love the way you write.