Tuesday, April 30, 2013

My BADD

I've been so busy this year I almost missed posting on BADD.  Hard to believe it's already May 1 and even harder to conceive that this is the eighth year that Blogging Against Disablism Day is being held.

This year is a 'by the seat of my pants' post, but that's okay because it's written in the true spirit of BADD.

I called it My BADD because the truth is I've been too busy dealing with living with a disability to write about it.  That is true for a lot of folks.  When we're in the midst of dealing with disability issues, we often don't have the luxury of saying 'Wow, let me create a post about that'.  A glance at my blog shows that the number of posts I've been writing has decreased and, although I could quip about quality over quantity, the truth is that balancing a job with  a host of other disability-related tasks  has made this a challenging year.

I'm not alone with this, yet amazingly enough I can't tell you have many times I'm seen as 'sitting around doing nothing' by folks.  Their disablism shows as they demonstrate blatant ignorance at how time consuming it is to live with a disability such as quadriplegia. I may not move much physically, but I'm a mover and shaker all day long.

A typical day in my life is longer now than it was prior to acquiring my disability.  There's my job, the every day 'stuff' of life and then....well... there's hiring, training and supervising aides for my care, taking care of my wheelchairs and other medical equipment, ordering supplies, finding information about what is needed,  figuring out how to get around less than perfect access, training on computer equipment  and assistive devices, upgrading and maintaining those - and the list goes on.  Basically, the disability 'stuff' is on top of the the rest of what others do.  The schedule is not for the weak of heart, mind or body.  I'm up at dawn, split my day in ways I never had to do when I was able bodied in directions I never anticipated I'd have to go, then pull myself back in again numerous times during the day to attend to what I need to do - and a lot of what I have to do depends on who shows up, who does what and when.

And for those who see having aides as having a maid or think it means that I sit back and eat bon bons watching them work - that's a whole 'nother post dealing with disablism.  The truth is it only works when I work to make it work no matter what may happen in any given day.  In my experience, it was a lot easier to just do stuff myself when I was able bodied - but that's a physical impossibility. So, although it may be  more time consuming and certainly more frustrating to train others and depend on them to do things, that's the only way it's going to work and, more importantly, the only way I can work to do the work I want and need to do.

In the end everything works out. I don't have the time or energy to explain how right now. Nor do I have the time or energy to do all the volunteer things I'd like to do or write all the things I want to.  But that's okay.  Some folks get it and others never will.  I'm willing to say "My BADD" from time to time when perhaps I don't figure things out exactly right or do things in the most optimal way with disability-related stuff.  I'm not willing, however, to subject myself to misguided advice from folks who never had to deal with all of this and make assumptions that are - well - plain wrong.  And often based on assumptions that bring us back to - you guessed it- disablism.

This has all taught me to stretch myself, to believe in my gut reactions, to learn about interdependence, and a myriad of great things I don't have the time or room to write about now. In the end, my life is good.  I wouldn't trade it.

As for disablism, it's here like it was eight, seven, six, five, four, three, two, one year ago.  So we keep writing.  We keep advocating.  We keep reaching out to each other.  It matters that we do that.

I hope you find time to go over to read other posts from BADD 2013.   It's not about being clever, witty or the best writer.  It's about being real.  That's why I take time every year to  join in.  I want to hold hands in solidarity with so many others from all over the world who are dealing with the same issues and find a moment to reach out to let others know we're not alone. As I go through my day tomorrow  I'll be thinking about BADD folks and hoping that every post written gets read and that folks take the time/make the time to leave comments.  Every voice deserves to be heard.

I hope that this year, like others, brings many newcomers and they learn how great - and important- participating in BADD is too.

(If you're new, leave me a link in my comments so I can find your post easier.  I'll be traveling around checking out as many as I can.)

2 comments:

Never That Easy said...

Oh yes: the bit about it doesn't work unless you make it work? Mmhmm. And how it's extra work on top of what other people are doing? Yeah - I so get that (even though I'm not 'working' right now, the 'shift' of managing my healthcare needs is neverending). So glad to see you again this year.

Ruth said...

Thanks for stopping by!! So many great posts this year :)