Monday, 2 December 2013

"I Wish I Knew How It Would Feel to be Free"

Wow, I see from my last post that it's been nearly a month since I've been here! I do not like being away for so long. I do have a good...well, a reasonable...excuse, though. Readers from last year may remember that I pulled a disappearing act in November as well. November is National Novel Writing Month - a month where crazy writers like myself from all over the globe set a goal to write a 50,000 word novel in one month. It gets a little hectic, especially since for the last few years my workload in November has gotten progressively larger, but I managed to do write the 50,000 words for the the third year in a row this year, with the support of friends and a couple of weekends where I wrote almost 10,000 words. It's a crappy novel, because I can't edit when I'm writing when you're writing that fast...but I did it!

But NaNoWriMo is done now, and it's time to get back to important things that I've let slide - the blog, Facebook and Twitter updates, and commenting on other peoples' blogs. I miss writing here and I want to get back to it.

Lots of things happened in November that I immediately thought that I needed to blog about: John Elder Robison's departure from Autism Speaks, the recent FBI findings about the surge in disability-related hate crimes in America, and a particularly disturbing story about the bullying of autistic child that I did link to on the Facebook page. There's been no shortage of stories that have caught my attention.

But today it was a post from fellow blogger Roya Rafieyan that both caught my attention and brought tears to my eyes.

I've written about Roya before. She's a music therapist in an institution for intellectually disabled people. I'm fascinated by her work and so thankful that she's there to give people who often have a great of difficulty communicating and who have very little control over their lives and choices a chance to express themselves.

Roia was talking in her blog about the challenges of working with an autistic man who doesn't communicate using speech:

"I think, understandably, his feelings about communicating and being heard are deeply conflicted. Even if he were to begin pointing at more words and letters to communicate, the likelihood he'd be listened to is...well...slim. The people in his life are largely committed to seeing him as severely disabled. Period...Aside from trying to come to terms with the whole idea of actually communicating with me and having me understand him- overwhelming in and of itself for him, I think- there's the fact that it probably won't change his life in any appreciable way."

I've thought about Roia's blog all day, and why it affected me so much that I burst into tears after I read it. And even going back and reading it now, I feel tears coming again. It's puzzling to me, because I am certainly in a different place in this man - I can make myself heard and understood. I can take actions that change my life. I am not in in an institution where I am told what to eat and when, when to get up and when to go to bed, who will be my support system (whether I like it or not)...

But when Roia talked about how her interactions with this man brought to mind the lyrics of  Billy Taylor's, "I Wish I Knew How it Would Feel to be Free", I found myself wanting to cry again

Because sometimes I do feel like my disabilities, and some of the ways that they've come to impact my life, in ways too personal to put out in a blog, have left me stuck me in spaces out of which it's difficult to move. It's a different sort of "stuck" than Roia's client experiences - less visible, despite my physical disabilities. Less visceral. I think that up until just recently, if I'd thought about it carefully, I'd have dismissed my experience as less valid -  and maybe it is.

Or maybe it's just different. I'm not quite sure yet.

But I don't feel very free most days, these days.  Sometimes it feels like, no matter how hard I try to position myself so that maybe some I can feel that way, it won't happen. It feels like I've entered another cycle where my disabilities feel like a weight...not something with which I'm at peace. I don't like being there again.

But then again, maybe this has nothing to do with disabilities. Maybe this is how everyone feels by the time that they're my age and it's time to just suck it up and get on with it. :)

I'm writing a second book about disabilities, by the way. This sort of thing's going to come up in it, I already know...

It's nice to be back. I hope you're all well.

If you'd like to read Roia's blog (and I highly recommend that you do!), you can find it here:

(By the way...please don't take this post as trolling for sympathy. I'm perfectly aware that I've got it waaaaaay better than most people in the world. Just trying to work some things out...)

And for more information on National Novel Writing Month, in case you'd like to write with me next November, visit their website.


  1. That brought tears to my eyes.

  2. Sarah, please forgive my sludge-like slow response! I think I'm finally able to settle down long enough to send you deep appreciation for sharing your thoughts on my post. I think there's a part in all of us that feels...bound (I'm not sure if that's the right word to use- in my effort to find one that says "un-free"- but it's the one I'm coming up with right now). I wonder if we relate to this song, this story, because universally, there are parts of us that aren't ever shared. I wonder (since I've been conscious of Brene Brown's work/research of late) if it's connected to some kind of internalized shame that so many of us carry. Either way, thank you for being patient until I could respond properly!