Friday, January 09, 2015

Confiding about Confining and A Shameful Plug

On the first day of Spring, which is hard to even imagine right now in the depths of winter's grip, Joe and I will be on an airplane headed to Heathrow. We've not done a lecture tour in the UK for a couple of years and we are really looking forward to going back. First, we love the work. Second, we enjoy the culture and the atmosphere of being in the UK. Third, and maybe most compellingly, we get to see people and places we've come to love. So, we're excited.

This life of being 'confined to a wheelchair' just isn't that confining is it?

I know I come back to this theme often here, but to me it's an important one. The fears I had for my future and for my life when my wheelchair first rolled into my hospital room were ill founded. Those same fears were exacerbated by the attitudes of professionals and, sorry to say, of friends, who kept wanting me to 'understand' that my life had changed and that I had to change with it.

But my life hadn't changed.

How I got around changed.

It's not the same thing.

Let me say that again.


I had to adapt, we had to reorganize and restructure, there were changes made - but not the one's I was told I would have to make. No wonder people experience depression and suicidal thoughts when, after seeing grave face after grave face after grave face they begin to long for the grave yard. There are truths to be told, hard truths about disability, but there are also myths to be demolished and destroyed. I got very little truth and myths were built up into a fearful size.

I didn't think I'd be travelling.

But I'm going to the UK!


Wheelchair and all.

PS Anyone interested in booking a lecture date - contact me and I'll put you in touch with the lovelies who are organizing this for us.


Danni said...

I wish I could come see you! Unfortunately I can't, as I'm too ill to use my wheelchair so am confined (actually confined) to bed.

To me (and my husband) a wheelchair represents freedom. In my wheelchair I was able to do so much more than I'd have been able to do without it. I was able to continue college for much longer (it was too far for me to walk, then I couldn't walk at all), see friends, go on trips. I even went to a theme park and went on most of the rides (the only ones I had to skip were the ones with no back support as I couldn't stay upright without it). Neither of us drive so we used public transport, and though there are definite improvements needed for access I was able to do pretty much everything I wanted until I became too ill.

With a few exceptions, I've now been in bed for over 2 years. I'm waiting for a hoist so I can get back into my wheelchair. I know about confinement. A wheelchair isn't it.

Shayne Kawalilak said...

I don't miss my wheelchair, i was only in it for 6 months... but i am having fun reading your blogs...