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Life Unscripted

~ Living Life as I see it… or Don't

Life Unscripted

Monthly Archives: March 2019

An Open Letter to Those who Get it

23 Saturday Mar 2019

Posted by blindbeader in blindness

≈ 2 Comments

Tags

acceptance, belonging, gratitude, intuition, open letters

Click here to listen to a reading of this postDownload

If you’re reading this and think you might recognize yourself, you probably know who you are. If you’re reading this and wonder why I’m writing this about you because this should be common sense, you probably know who you are. If you’re reading this and know I’m writing about you… I’m probably not.

 

I’m a person with a visible disability. You are somehow part of my life. You could be a colleague, a teacher, a friend, a stranger in line at a coffee shop… less commonly, you could be a family member or a romantic partner. Your life could’ve intersected mine in a hundred different ways. Before meeting me, you’ve usually had little to no experience with the day to day realities of living with a disability.

 

And yet… you get it.

 

You get it in ways I can never put into words until I fumble and falter and try and thank you for just understanding so I don’t have to explain at all. When I stammer out the words of joy and gratitude I feel from deep in my soul, more often than not, you remain still for a moment, eyebrows raised, and ask me with all seriousness what the big deal is. Because more people should understand. You think that more people should stop asking intrusive questions. You believe that nobody should grab my body when “trying to help”. You think I belong at the table just like everyone else, and you’ll quietly move heaven and earth to level the playing field so I’m part of your group and not just a token participant. You understand why some ideas are so harmful. You may not know what my life feels like, but you leave me plenty of open space so that I can fill in the gaps – not because I owe you an explanation, but because you know that so few people leave their agendas at the door.

 

You may be a new friend, or a colleague who got to know me on that project one time. You may be a stranger who offered assistance when I was standing in line at a coffee shop and just knew how to help and let me be when it was no longer required. You may be a random group of people who regularly play board games. You may be a part of a group of musicians. You may be a member of a sports team or other club. You could literally be anybody. Often times, you intrinsically understand me – and my life with disability – better than many of my family members, partners, or friends. As much as we love them, there’s always been a growing experience, an adjustment period, a drawing of boundaries. With you… that’s never once been there. You’ve always just… known. You’ve never called attention to my disability, but you’ve never neglected its presence either. You’ve never asked questions unless they directly flowed out of a conversation we’ve been having. You’ve understood – with no input from me – why little things that many people say shouldn’t “get to me”… get to me. You’re furious on my behalf at intrusions into my privacy, and yet you’ve given me space to fight the battles myself. You’ve presumed me competent when I’ve spent so much time trying to convince people that I’m not just a child in an adult body. For all of this, you have my undying gratitude.

 

You get it.

 

All of it.

 

And you’re right, more people should. But maybe, just maybe, if more people did… I wouldn’t be so aware of the rare and precious mystical belonging places. It’s more than the absence of negatives; you’ve given me something that so few people have… the gift of true acceptance. Thank you, from the bottom of my heart.

 

Go ahead, raise those eyebrows. If you think I might be talking about you – if you remember some stammered, incoherent conversation about thankfulness and gratitude toward you – I probably am. If you don’t remember this conversation… that’s OK. I’m probably not writing about you directly right now. But I could be… or someone else could be down the line. Read this post again. And again. And again. And let it sink in. It’s not hard to “get” disability; it’s a leaving behind of preconceptions, a listening to what’s being said, an opening to a change in script. I’m eternally thankful for people who intuitively “get it”, and also for those who want to get it, own their missteps, and don’t lay all the emotional labour on me. It’s never too late to move forward, to be that person that doesn’t understand how something so simple can be so profound.

 

And yet, it is profound.

 

You get it.

 

And these fumbling, faltering words are the only ones I can come up with to adequately express myself. But maybe, just maybe, they are enough.

Ask me to Dance… better yet, Play my Music

06 Wednesday Mar 2019

Posted by blindbeader in blindness

≈ 3 Comments

Click here to listen to a reading of this postDownload

Let’s get this out of the way.

I have the physical capability to dance. But I can not dance. My rhythm is off and my body doesn’t cooperate, so I have the coordination of the Tin man from the Wizard of Oz. I am in no way asking to be invited to a real dance party, largely because… well… I cannot dance.

And I play music. I sing a lot (now that I realize it’s in my blood). But I don’t literally want you to play anything I’ve recorded in my presence. I hate how I sound; two days ago I found recordings of songs I wrote and recorded in my teens… and while I can’t bring myself to get rid of them, they sound objectively bad. And I still have nightmares about recording sessions that produce phantom neck pain from staying in one position for long periods trying to get perfect vocals.

So why am I contradicting myself now?

I’ve heard a saying over the past couple of years: “Diversity is being invited to the party, inclusion is being asked to dance.” I’ve always liked that phrase, but felt it went further. In fact, research for this post brought me to a continuation: “Belonging is playing my music.” I could not agree more.

Most of us crave relationships. We want to feel like we’ve met people who “get” us on a bunch of different levels, particularly the deep ones. But even casual, low-key environments can be powerful in the relationships, because of the “music playing” in the background. Finding that acceptance can prove difficult; yet when you do it’s both so powerful and so quiet that you don’t want to draw attention to it. As my friend Meagan wrote in her brilliant post on this subject:

But when I have been fortunate enough to stumble upon an inclusive environment—my current workplace is an ideal example—it’s never been joyless or contrived. A lucky convergence of factors makes me perfectly comfortable, long before I realize it’s happening. By the time I become aware that I have found that rare sense of belonging, it’s too late to pinpoint precisely why it happened that way. All I can do is sit back and enjoy it, hoping I find it again elsewhere, and knowing there’s little I can do to reawaken the magic.

 

Over the past couple of years, I’ve stumbled into belonging. My workplace believes in my skills and experience, and trusts me to advocate for myself if I need it. My running crew treats me like a runner who’s blind (not a blind runner) with a seriously badass guide dog; I don’t get cheers for just showing up in the first place, but I’m encouraged as a runner, full stop… and yet I’ve been told more than once that Ed’s and my showing up for runs and coffee most weeks brings more runners out for post-run coffee. Are we, by our presence, creating an inclusive place, a place to belong, building our own magical “safe space”?

 

Maybe we are.

 

People who are part of someone’s “tribe” – the individuals and groups in which they feel most safe and accepted – don’t seem to think twice that they are creating and building something beautiful and mystical. Anytime I’ve brought it up to my tribe – or “my people”, as I call them – they shrug and think it’s nothing. And I don’t have the words to adequately describe the magic, the music, the dancing… because it just… is. There’s a regular board game meetup I’ve attended for the past six months, and I’ve literally had to explain nothing about blindness, never had to push the point that Pictionary isn’t an inclusive game, never had to enforce rules about interacting with Jenny, or find ways to include myself. Even when I hit a glitch with AiRa one night when it was my turn to read Taboo clues, my people refused to take the cards I tried to pass to them. One even thought of texting me the clues and the Taboo words, and I was able to continue being clue-giver – and no one complained about the length of time it was taking, because we were all just sitting around and joking and laughing anyway. They were playing my music, and I didn’t dare pinch myself in case it was all a dream.

 

Falling into belonging is unexpected, and beautiful, and life-giving. Rick, my running instructor, calls it the “absence of negatives”. I like the phrase, but I don’t think it entirely fits here; The absence of negatives is filled with something I can’t quite describe, and trying to do so seems to cheapen it. Having been met with such understated and seamless acceptance has freed me up to offer the same in return. It’s as simple as inviting someone to a party, as joyous as an enthusiastic dancer with two left feet, and as beautiful as your favourite soundtrack on the speakers. And more magic in the world brings more parties, more dancing, and more and varied music… and I think we all could use a little more of that.

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