This blog now seems to have an audience that is made up of travelers, people with disabilities and parents of kids with special needs/disabilities. This makes sense to me, because, after all, living life in a unique way is something that all three of these groups have in common, right?
We travel to experience the world, for the thrill of the new. We travel to stretch ourselves, learn, have fun, see new things, eat. We travel to change landscapes, push ideologies, see, taste, experience, be.
When we have a disability, we venture forth into the world in a unique way, from different vantage points off the mainstream. Our senses, limbs, organs or thinking are wired up in a way that allows us to live life from a place that not everyone can experience. Living with a disability has much in common with traveling: they are both avenues of experiencing the new, a different way of doing something.
Parents of a Child with a Disability
A parent of child with a disability – or “special needs” as it’s becoming popular to say – is forced to venture forth into this unknown, this different way of doing things by virtue of the fact that their child is on this road. Like it or not, their child is on this path and if they want to help their child or allow their child to be all they can be, they need to learn to travel too.
We’re all on this road together. Some of us chose it. Some of us didn’t. Sometimes it’s framed in more sexy ways than others – “beaches in Baja” sounds way cooler than “brain injury” might, but you know what? In the end, you are sitting there and a butterfly passes you and you swear it winked. Which is to say: Your perspective on this world is going to shift dramatically with either travel or disability and that’s just a fact.
But even for the people that wanted change – the travelers among us – even for them, things can get hard. Culture shock hits, you get to this point in which you want to fling the new food at the wall or scream that you don’t give a shit about cross cultural understanding, or peace, love and ecosystems.
You just want the electricity to WORK, you just want the water to RUN and you want frickin’ wifi ACCESS, is that so much to ask?! Or people to quit pointing at you, quit mocking you, quit treating you like a goddamn walking dollar bill.
So what’s it like then, for the person with a disability? The travelers who travel the world in their body, who experience life in a way that is unique but which they often didn’t choose? It can get hard too – culture, only it’s your OWN culture here – slams you up and kicks you in the face, tells you that you can’t participate, you don’t belong, you can’t work, you are good for nothing but some happy photo of a meme that will get passed around Facebook, you have a “good attitude”.
You just want to WORK, you just want the opportunity to RUN, you want some frickin’ ACCESS, is that so much to ask?! Or people to quit pointing at you, quit mocking you, quit treating you like you are going to cost them a goddam dollar bill.
It ends up being very, very similar, you see.
We are experiencing things in a really unique way and we are going to move forward and we are going to bust through this with so much life under our belt, you guys! We are moving along this river of our lives with speed, with some fierceness, with moxie!
And that brings me to this, the Living With Moxie piece. A continuation of the conversation started last weekend (was it only last weekend?).
About sharing our stories of living with moxie, about trying or doing the things that are NOT easy but which will allow us to ultimately grow.
About facing our fears. Whatever they are.
And allowing ourselves to be set free. Just like this says: sometimes what you fear the most to do is the very thing that will set you free…
Last week, I lied.
Well, not really, but I did, sort of. I told you that I was going to commit to speaking Spanish every day. I know this sounds like a bona-fide goal because speaking any language isn’t ever easy for a deaf person and learning a new language when you are 40 isn’t either. But that was a cop out and I know it, so I admit it.
Choosing that as a goal to commit to was easier than another one that I think is probably more worthy of claiming here: getting published.
I’m not talking about getting published on the friendly, free sites that have welcomed me (and that welcome just about everyone). I’m talking about getting published on big sites that have a professional bent, sites that usually pay, sites that demand that I pull my sentences in and articulate with grace.
I get really nervous about trying to get published. Thoughts along the lines of, ‘why would anyone want to read what I have to say?’ bloom inside my head with ferocious abandon. And it’s not easy figuring any of this out: who to submit to, what email address, what post, what’s worth it, is any of it worth it? Why try, am I crazy, I must be crazy, I have brain injury after all, haha. And then I get distracted – I have 3 kids, I really do have brain injury, I try to get my calendars moving, try to get something written and LO!, some widget is broken on my site and I need to figure that out and the entire publishing thing takes a back burner…. and you know what?
I end up being kind of relieved that it is because it’s easier to not try.
It’s easier to not try because then I never fail.
I never get rejected.
But I’m not going to do that anymore. It may seem like I’m not failing by not trying but it’s really the ultimate failure, isn’t it, never trying at all? Never going to that place of being vulnerable, never stepping into a zone of discomfort because it is well, uncomfortable. It’s not secure.
That reminds me of this quote,
Security is mostly a superstition. It does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than outright exposure. Life is either a daring adventure, or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.
– Helen Keller
Chills up my spine.
To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable
With that, I’m going to make my goal here, get published.
I’m going to get published and I’m going to pull together a book proposal to boot.
Two things. Two goals that flip my head around and make my heart beat faster and put me in that space of discomfort because they are two things that I care about and would like to succeed in. Two things that rock my boat of safety, of security.
See? I’m scared already just writing that. I’m nervous just putting that out there. I think that’s a sign that it’s the right goal.
How are you guys doing? What’s floating your moxie boat? What are you up to? What are you doing that scares you and pushes you?
Our first guest post is coming up next on a Story Developing Moxie – if you want to share your story, I’d love it – just email me your story (see below), we’ll put it on up next week.
Seriously, everyone is welcome. So, let’s share.
Use a fake name if that makes it easier. Or none at all. Your email address is for me only, it won’t be published or shared. I’ve added the story-sharing boxes to both the right side bar and to the bottom bar, so you can access it pretty much anywhere on this blog – and I’d love it if you would.
Oh man, would I ever love it. I want so badly to hear what you guys are doing to push yourselves outside of your comfort zone, what you are doing to live with moxie, what it’s all about for you.