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BADD 2011: A Glimpse of Success

  • Posted on May 1, 2011 at 6:07 PM

Perhaps it’s the timing, perhaps it’s my unpreparedness, but I’m going to share a recent, deceptively simple success story.  The Goldfish hosts Blogging Against Disablism Day on May 1st every year, as she has for several years now.  So, you’d think I would be prepared.  You’d think I would realize that BADD is coming up fast.  Unfortunately, considering my hiatus and the time it’s taken me to get back in the swing of trying to keep track of all the blogs I enjoy reading, I find myself caught a bit unprepared.  Normally, I would take this as an opportunity to veer away from the easy-come-easy-go of family anecdotes, and concentrate on something deep and important.  But, maybe, I can do both.  Either way, yesterday (Saturday, April 30th), is worth writing about.

As some may know and many probably don’t, I’m the mother of three children with autism, I’m the wife of a man with a diagnosis of bi-polar disorder, I have diagnoses of depression and OCD myself, and both my husband and I are somewhere near the autism spectrum too.  Our disabilities are not physical.  You cannot look at us and say, “Hey, now those people are disabled!”  (For those who don’t get the point of this who BADD thing, you shouldn’t be saying that anyway, but that’s not my point.)  The point is, in big ways and in small ways, I find myself constantly advocating for the need for accommodations and for advocacy itself.

{I’m not, by any means, trying to suggest that people with physical disabilities have it easier.  I am well aware that just because a need is readily apparent, doesn’t mean it will be considered or accommodated.  I still remember, quite clearly, and in part from expanding my personal blogging community to a wider array of disabilities, the moment I looked at one of those bathrooms—you know, the ones with the sign—and realized that no matter how accessible it was inside, there was no practical way for someone in a wheelchair to OPEN THE DOOR independently.  I remember the light coming on in my head.  I remember that moment of insight, and the indignation that followed, with “How dare they advertise this as accessible!” reverberating through my skull.  And, while that incident was special for me, in the sense that it got my mind to shift, it was far from an isolated incident.  So, I’m not belittling the advocacy needs of those with physical disabilities.}

I do, however, get so very tired of having to justify over and over and over and over again why my family has advocacy needs to people who just don’t get it.  It is tiring.  It is exhausting.  And sometimes small moments of ease are the only things that keep me going, keep me hoping.

So, what does that look like?  Success?  Ease?

Yesterday (Saturday, April 30th), my husband had some friends over to do some role-playing.  This is something they try to do every weekend.  Like a guy’s night in, instead of a guy’s night out.  So this, in and of itself, was nothing extraordinary.  One of the guys is a long-time family friend.  He was at our wedding.  Our kids are good friends; they’ve grown up together.  His wife has been a therapist for our children.  They’ve babysat.  Or, to be brief, he knows what he’s getting into when he comes over.  The other two are newer.  They’re both a bit odd (for me, that’s a compliment), but they’re odd in ways that are not our ways (which is just fine with me).  And so, again to be brief, they still really don’t know what they’re getting into when they come over to our house, but they’re willing to risk it.

We usually have a bit of preparation for these nights.  We know the day is coming.  We build up to it.  It’s usually on Fridays.  And, well, this time we really didn’t and it wasn’t.  Or, to be brief, it was not an ideal situation.

Mark’s sleep-cycle was wonky and the kids were a bit wild.  Usually, this would be a problem.  For your random individual (or group), this would be a problem.  Surprisingly, this time, it was all okay.  It worked.  The night was a success.  (The gaming was not so much, but that’s a whole ‘nother thing for a whole ‘nother blog, which I’m not going to write, but hey—role-playing can be tough.  It is, after all, storytelling, but with free will.)

This is not to say there weren’t problems.  Mark fell asleep twice during the night.  The boys’ had issues that needed to be dealt with, including Willy not wanting to play anymore, including Ben trying to push a chair down the stairs, including Alex pinching our guests.  And, well, a complete list isn’t the point.  There were issues.

But they weren’t a problem.

Novel, I know, but it’s true.  The boys’ needs were discussed, as they often are around people who haven’t known them long enough to be fully versed, but they weren’t an “issue.”  Everyone just sort of went with the flow and it worked.  When explanations were necessary, they were given, they were accepted, and we moved on.

It wasn’t:  WOW!  YOU PEOPLE ARE WEIRD!  It wasn’t even:  MY FAMILY IS DIFFERENT AND THAT’S OKAY.  It just was.

And, for me, that’s success.  Explanation.  Acceptance.  Move on.

Maybe it’s lack of imagination, but I really don’t envision a time where everyone just understands.  I communicate with a lot of people with a lot of different kinds of differences, from disability-related differences to faith-based differences, cultural, racial, life-style…and on and on.  I try hard, but I don’t just understand.  I need things explained to me.  I need the stories.  I need the shared-experiences.  I need those moments of insight.  And I expect that I always will.  I don’t think that’s just me, either.

The thing of it is, I do believe there will come a time when everyone—or at least the majority of people—will be open to having things explained, to listening to others’ stories, to sharing experiences, to moments of insight.  I think that will happen.

And it’s going to look a bit like last night did.  An easy, comfortable exchange; welcome to my life, beware of the pinching; yes, we have alarms on our doors, because our children will go out to look at the cars…the ones that are moving.  This is our life.  We’re open to sharing it.  But it’s so nice when our differences are not a big deal.  They just are.