If All you Have is “Good Intentions”, Keep them

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I’m a visibly disabled person, navigating my life the best way I know how. I have hobbies, a job, a partner, a home… I buy groceries and commute and sometimes overspend and meet friends for coffee and despair about things that are going on in the world. Some things make me laugh, others make me cry, I avoid some activities and concepts at all costs because they terrify me.
In many ways, my life isn’t that different from anyone else’s.
But what’s frequently the only thing most people – particularly strangers – address about me?
I’m a visibly disabled person…
And I’m tired.
SO VERY TIRED.
It’s like this switch flips in the brains of many people that says “DIFFERENT!” and all propriety gets thrown out the window.
And if someone’s called on it – being politely and then firmly asked to stop asking personal questions, to stop grabbing and manipulating my body, reminding them that a particular action wouldn’t be welcomed if directed at them – I hear the words “But I just meant well” or “I just care” or “I didn’t know…”. As if this gives an automatic free pass.
Because DISABILITY!
And the armchair quarterbacking I’ve experienced on this issue – from people who weren’t there – “They talked to your companion because they aren’t comfortable with you” or “Disability brings out the compassion in people” or “people just want to connect with you on some level…”
NO!
I want to think that people have good intentions, but the reality is that violence against disabled people is far more prevalent than that experienced by non-disabled people. If I just go along, not making waves, thinking that people have good intentions, I am literally putting myself at greater risk (like the time three strangers tried to badger me into taking an elevator instead of the stairs, because they “would feel better” if I did so).
So that idea on its face needs to die, and right now.
But that’s not why I’m writing this.
I’m writing because intentions alone aren’t free passes. “Good intentions” aren’t enough anymore.
Because the impact of “good intentions” is cumulative. At the end of the day, underneath “good intentions” generally lies discomfort with disability, and a complex of superiority – that the non-disabled person is more informed about the world, more entitled to invasion of personal boundaries, and more knowledgeable about the disability experience than a disabled person.
NO!
Someone else’s “good intentions” means that they can walk away from an experience with a disabled person and go about their day. They can pat themselves on the back for doing a “good deed” (which, for the record, is SUPER condescending, and that thought also needs to die); they can walk away annoyed or hurt because their offer of help was declined because the disabled person didn’t need help at all… or they can walk away defensive after being called out because their “offer” of help or interaction crossed physical or emotional boundaries that are generally accepted as universal (except DISABILITY, so rules don’t apply).
But they can walk away and tell their partner about that ungrateful person they reached out to and were told they weren’t needed – or weren’t needed in the way they thought they should be. They can lump all disabled people together because of one interaction with that wheelchair user who asked them to stop pushing their wheelchair, or that blind person who told them they really didn’t want to discuss what made them go blind… That interaction took 30 seconds out of their day and they can move on.
But I can’t.
Because ONE person’s “good intentions” affect that one person for 30 seconds, or maybe a bit longer if they’re self-aware enough to understand their impact and actually make an effort to do better (this is rare, but this does happen).
But I can’t move on from the impact of one person’s “good intentions” because there’s another person’s “good intentions” right around the corner. I struggle to accept true compliments anymore because I receive so many that are based on low expectations of me. I have to forcefully deflect personal questions about my disability itself because politeness rarely works. I have to make a choice between drawing more attention to myself or shutting up and getting along when I’m physically grabbed and directed, when the person doing the grabbing was never given consent to do so.
One person’s good intentions impact them and me. Another person’s good intentions impact them and me. A third person’s good intentions impact them and me.

Impact is more important than intent. One can intend well and still have a harmful impact. And I’m impacted over and over and over and over and over and over and over again.
It’s never one person’s action alone, but the cumulative impact that has me – and others – so tired.
And every single person tells me they have “good intentions.”
Those aren’t enough. If that’s all you’ve got, skip them. Good intentions mean nothing when they come from a place of entitlement and superiority.
Do you really mean well, or is it that you want to feel better about yourself?
If you really mean well, take a split second and actually think about the impact of your comments or actions. Would you appreciate the comment or question if directed at you? Would you like to be physically grabbed, or would you prefer to have autonomy over your body? Would you like to spend the rest of your life talking about one personal topic, or would you prefer to talk about sports or the weather or local politics or…? I truly believe that a split second of reflection could have immeasurable positive impact on my experience and – by extension – yours.
And if you just want the warm fuzzies?
Move along… You don’t mean well at all.

Reclamation – A Poem

I stand in a doorway

Waiting to be invited in.

But the invitation doesn’t come.

You tell me you’re too busy

Or I’m asking too much.

Or you would rather I just go away.

You don’t say these things, of course,

But in every breath and movement

I feel your annoyance at my presence.

But that’s not what you meant?

How else am I supposed to take

Your heavy sighs and simple words?

You talk over me,

Telling me that my perceptions of your (in)action

Are all in my head.

But how can that be?

Impact trumps intent.

And I am being told in word and deed that I am not welcome here.

I take a deep breath and push through the door.

I’m making space here for myself

Since you don’t see fit to.

I rearrange boxes, pull up a chair.
Finding – or carving – a place at the table.

Because I belong here.

I say it out loud:

“I belong here!”

And even if I don’t feel it, it is still true.

I feel like I’ve worked my fingers raw

Moved around furniture and set up shop.

Because the truth is I have.

And I do this too often,

Either standing uninvited on the outside

Or muscling my way in to too many spaces.

But today, I claim this space mine.

I have every right to be here.

And I just need to remember

I always have

The right to exist

To be here

Just as I am.

An Open Letter to Those who Get it

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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

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.

“You’re doing WHAT in this weather?”: Digging Deep for the Hypo Half

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Five months ago, I ran my first half-marathon. On a whim, I decided to see what races were going on while I was traveling on a journey that would change my life. I paid for my race fees, then crossed my fingers that I would have a guide runner on race day and a bus ticket to get there. My guide runner materialized months before I bought my ticket.
That race had perfect weather, with sunny skies and a light breeze and not too much heat. Even though my training program went completely sideways due to my guide dog’s emergency surgery – and later the thick smoke from wildfires that blanketed Edmonton for weeks – I’ll never forget it, and never regret it.
No sooner did I write the words “I’m never doing this again” than I started looking for my next half-marathon. Less than a week after arriving home, I signed up for what Edmonton Runners call the Hypo Half. It’s a half-marathon, run in February, in Edmonton – where temperatures can range from -40 to something above freezing… and you never know what you’re going to get.

I had no idea.

Spring and summer running are relatively easy. You get motivated by the opportunity to spend time outside, enjoying the neighborhood or trails or wherever brings you running zen. I knew winter running would challenge me in the motivation department – it’s cold and dark and sometimes snowy and gross. So I signed up with a training program through the Running Room, and started running with them three times a week. Over the course of the next four months, magical things happened. I found my space with a group of people who never once made me have to adapt to how they did things. There was always someone running with me, because you always run in pairs in the winter. Rick, our instructor, was always up to provide fascinating information (who needs Google with a Rick around?) or trying to talk all the runners into sticking around for a post-run coffee. Ed, who would later guide me and Jenny on race day, often joined me for coffee and was generous with his time, fuel, and date bites on long runs. I don’t think I had a single inappropriate question asked of me (the first person who asked anything about my vision promptly ran into a pole). The super fast runners still cheered for those of us who brought up the rear. Anyone who’s rarely had to insert their way into a given space may not understand what it feels like, this instant knowing you belong somewhere. And I was lucky enough to just fall into it.

Over the next four months, training was HARD. We ran on icy sidewalks, down hills that required traction devices on our shoes, in the cold and snow and wind, through three inches of snow that felt like running through sand. More than once I wondered why I was doing this – sometimes, the shocked response to my running in winter was enough to make me smile and keep going. We ran fast, or we plodded along. I mixed and matched my winter clothes, and had more than one fellow runner leave gloves in his car for me because I finished most of my runs without them. I learned more than the importance of good form or nutrition, I learned a few things about life and about myself. At low emotional moments, I discovered the somewhat magical healing properties of running the 109th Street bridge. And I had to really learn that staying upright and uninjured was better than logging the speed and mileage (because kilometerage isn’t a word) that my training plan demanded. This was a whole season of my life where the universe was trying to tell me to just be OK with just being.

And then, the first Hypo Halfers ran their race in early February. It was -30 Celsius, with the windchill making it 10 degrees colder. One of them gave us late Hypo halfers a pep talk – what worked, what didn’t – and I thought I was ready…

And then, February 17, 2019. It was just like any other Sunday morning. My alarm went off at the same time it does every Sunday. I drank my coffee, ate my bagel and eggs (after spending the previous five days eating more than two teenage boys could pack away), and got myself ready to run. Ed, my guide and friend, picked me up at the same time he has every Sunday morning for months. It could’ve been any other Sunday… except that day I held a race bib and a couple of obnoxious safety pins. The temperature was a relatively balmy -18 Celsius. “Not too bad,” as Ed wrote on Facebook before we went outside to wait by the start line.

Ed, Jenny and I found a few of our other runners, we wished each other well, and we started running. There’s something magical about the cadence of multiple pairs of feet – the rhythm in the light dusting of snow – that I can’t adequately put in to words. it finally felt real – we were really running! After several kilometers, it just felt like Ed and Jenny and I were alone on the course. And still runners – some we knew and some we didn’t – and volunteers cheered us on. Our speed was flawless, and I felt like I could take on the whole race… until 12 kilometers in. I didn’t wanna do this any more. I slogged through four kilometers of mental mud, swore at Ed when he “tried to be encouraging” by helpfully reminding me we’re 17 weeks out from a full marathon, and pushed… and pushed… and PUSHED. Finally, I got a second wind, and found my motivation – two of our runners were running with injuries; they wanted to run this race so much that they didn’t care if they had to crawl that finish line. I ran those last three kilometers for them, thinking of their grit and determination, and finding some of my own. When we crossed the finish line – 2:28:22 after crossing the start – I felt proud and tired and ready to eat! Jenny just felt tired, but looked REALLY cute with her own finisher’s medal.

 

The brunch is one of the biggest draws of the Hypo Half in Edmonton – that and winter running badass points – and it didn’t disappoint. I stuffed myself on bacon and fruit and potatoes while Jenny snoozed contentedly under the table. Many of our running crew came by to congratulate and commiserate, to high-5 and to compare notes, to laugh at the error in my chipped time, to ask the question we’ve been asking for weeks – “What’s next for you?” Some of us are training for another Half, others are preparing for a full, and some – like Ed and I – are straddling both worlds because of the dates of our next races. But I couldn’t think about a full marathon – I just had to soak in the successes of that morning, and all the people who helped to get me there.

 

It’s been four days since that race. I’m a little stiff and sore, but ready to get back onto the road to log the distances that will lead me to another goal: my first full marathon! This journey will be unlike anything I’ve done before, and yet I know some familiar faces – some of my people – will still be with me, training and cheering and dreaming their own dreams, and helping to make my own possible.

The Day the Music Died

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I used to say that music was in my blood…

Until it bled me dry.

 

I used to sing. A lot. All the time. In the car, at home, with friends… I’d literally get together with people – those I knew and those I didn’t – to do nothing but sing. I practiced singing – I had to work at it – when I was alone, just so I could perform better. Whether or not I could hit the notes, I’d try and try and try again – probably to the dismay of my long-suffering parents, particularly when I couldn’t quite reach the high notes. I fronted bands, sang karaoke, provided background vocals. From the time I was about twelve, you’d find me gathered around the piano at summer camp with my friends, or walking down whatever hallway singing songs I liked – and every now and then songs I couldn’t stand but couldn’t get out of my head. During free periods in high school – when I didn’t have homework to do – I’d sit on a bench in the hallways and play my guitar, because of course it came with me to school even on days I didn’t have guitar class. I wrote music, for those times when merely speaking words wasn’t enough and I had to express my fear, faith, anger, pain, hope, or what I thought was love. When I was sixteen, I taught myself the guitar, scraping raw the fingers on my left hand and making it impossible to read braille for months. I fell back in love with the piano in Bible college because there were too many guitarists and no one else would play the piano. Between classes at that Bible college, I’d sneak into the chapel for a few moments of solace, where the music from that old out-of-tune upright would mingle with my voice, echoing slightly in the empty room. I’m glad I didn’t know until years later that people would sometimes sneak in and listen. I would have stopped playing if I’d known.

 

I used to say music was in my blood…

Until it bled me dry.

 

I remember the exact moment when I made the decision to step back from performing – even though I didn’t realize that decision would remain steadfast for over a decade. I was standing in a church in La Crete, Alberta, singing a song while combating a terrible cold. My voice was hoarse, and I was thrilled that no one I knew – beyond my Bible school classmates – could hear me like this (and maybe not even them). I remember thinking “No one knows me beyond the fact that I can sing and play… I can’t do this anymore.”

 

Over the next few months – that eventually turned into nearly twelve years – I jammed a few times with classmates, played alone on that old upright in the chapel, but I don’t remember singing and playing publicly much after that. I did karaoke with friends once or twice over the years, but that felt awkward to me. I jammed a handful of times with friends on the piano I insisted Ben and I buy when we bought our house, but the house was never filled with music the way we hoped it would be. I played a piano here and there, wrote a song a couple people I trusted heard and liked (eight years after that church service in La Crete), and made some noncommittal noises about joining a friend any time he asked or cajoled or badgered me to go for a jam (he always asked again)… But I was done, burned out, had nothing… Music had let me down. It had taken me in and spit me out and I wasn’t ready for the merry-go-round again.

 

I used to say that music was in my blood…

Until it bled me dry.

 

I haven’t written a complete song in over three years. And before that, I hadn’t written one in seven. It’s not that I had nothing to say – in fact, I’ve had a lot to say – but I feared what I would say, what I would have to acknowledge to myself if no one else. And I felt that I could never find the time and space to explore new musical frontiers without feeling the unintentional pressure to perform by those around me. That’s another reason I have been extremely reluctant to sing publicly. My vocal “gift” is not raw talent. I literally had to teach myself to sing. When I was young, I loved to sing but couldn’t carry a tune in a bucket. When I started buying tapes and CDs, I’d play them for hours, pitching my voice to match the artists – first country, then pop/rock – and somehow, magically, I could sort of sing. And people responded to that. I soaked up the attention, and in many ways it was a great thing.

 

Until it wasn’t.

 

Until I became known as the girl who sang with conviction and passion (if not technical perfection) and could maybe accompany you or front your band. And then it was an obligation, not a joy. I’ve silenced my voice for over a decade, because I knew on some intrinsic level that if I didn’t, I’d spend years playing and singing songs I didn’t feel, or writing songs I could perform for no one but myself, or writing “performable” songs that would steal a piece of my soul. And I’d hate it. That’s why I have been extremely reluctant to sing in churches or karaoke bars, to play at functions, or even to write. Because one such event always always leads to another.

 

Over Christmas, I visited my parents. There’s an annual tradition my Dad attends – a Christmas morning brunch with a bunch of folks who may or may not have somewhere to go for the holiday. After we’d had our fill of food and coffee, we all headed in to the living room for some caroling. My Dad performs a solo every year – Six White Boomers – and his friend with the guitar didn’t know the song. I offered to get her a key to play in, and somehow – with shaking hands and an unpracticed ear – ended up accompanying Dad on the whole song. No one made a big deal when I handed the guitar back, leaned back on the couch, and sang along with the others on the next song.

 

I loved it.

 

Because it wasn’t about me.

 

I was part of a collective, not a show monkey being paraded in front of a group of people. And that one experience told me that it was time to steady my hands and hold the music again. It paved the way for a solo New Year’s Eve – just me and a guitar and a seriously out-of-tune upright – opened the door to bleeding fingertips and aching wrists and a voice I didn’t realize I had.

 

Even so, after so much reflection and work and a few tears, I started to wonder
if music was really in my blood, or if I was just kidding myself. Of course my skills are rusty. Of course I need to practice. It’s been so long since I sat down and wrote that I forgot the process (for the record, there is no “process” beyond sitting and writing). Of course I have things I want to say… But does music coarse through my veins? Do I need it like my morning coffee, or a hard run, or a good night’s sleep?

 

Absolutely, yes!

 

I used to say that music was in my blood…

 

And I’ll start saying it again.

 

Because it is.

The Intrepid Journey 2018: Retrospection

Four months ago today, a plane from Denver touched down in Edmonton. I grabbed my backpack and started walking between the rows of seats, Jenny restless at my side. A member of the cabin crew welcomed me home, and I stopped for a moment and cried tears of joy and relief and exhaustion, realizing that I was really and truly home.

My friend Keith picked me up from the airport and listened to me yammer on and on about the places I’d been and the people I’d met and the good, the bad, and the ugly of my trip. When he dropped me off at my front door, I soaked in the silence of the place I call home. When Ben arrived a little while later, we compared notes about our trips, swapped souvenirs, and hung art and mementos on the walls.

Over the next few months, my life shifted in some unexpected ways. I joined a support group that also sometimes played board games. I signed up for my second half-marathon (in Edmonton… in February… what was I thinking?), and started training for it. I did a couple of craft shows with my jewelry business, with mixed success. As my social world blossomed and grew, Ben and I came to terms with the truth that our marriage was over. We have always been great friends, and we have set ourselves up to continue to be so in the future. We wish each other nothing but joy and peace and happiness; and, no, I’m not just saying that.

Over the past four months, I’ve heard from a few folks from my journey. Jeff, my guide runner from Great Falls, pops up occasionally with a smile in his messages. Leesa, my guardian angel from Bozeman, messages me regularly; I’ve also stayed in sporadic touch with my Bozeman host. I hear from Jay and Emily, my guides for my first half-marathon in Billings, from time to time; last I heard, Jay has a new puppy that’s keeping him busy. Aziza (from Denver) and I stay in touch online, as do Robin (from Seattle) and I. Ken, my guide through Yellowstone, loved the blog post I wrote (he’s biased; he took the pics). James, from the Governor’s Mansion in Cheyenne, popped by my blog to say hello. And Ray, my pottery instructor from Whitefish, is on to some new adventures of his own; and (even though I can’t prove it) I think he’s the one who sent me the pieces we made together, all glazed and pretty… they arrived after one of the darkest nights of my life, just before Christmas.

The Intrepid Journey 2018 prepared me for this current place of peace I find myself. Those pianos I played in Billings and Cheyenne helped me fall in love with my own piano – for the first time since we bought it. Accepting rides from random strangers in Butte, Helena, and Bozeman helped me remember that we are given intuition about people, and I should use it in other life interactions. I rediscovered how to dust myself off when everything hits the skids, and keep on going. I learned to push myself when I’ve got a little more in the tank, to smile more, to listen to stories, to take a deep breath and tell my own. I don’t know that I would be who I am today if I hadn’t decided, riding in a Nissan down a Montana highway, to take a risk and travel alone, on my terms, in places where I didn’t know a soul. Before I left, before Jenny went for emergency surgery, before I had any true idea what I was in for, I bought a display for my race bib to commemorate my first half-marathon. It hangs on a wall in my house, where you can see it as you walk in the front door, or as you enter and leave the kitchen. I chose, after thoughtful consideration, to customize it with these words that proved to be prophetic:
The Intrepid Journey 2018
Stronger than You Think

2018: The Year of Growth

2018 was… complicated.
I haven’t been around much on this blog since returning from The Intrepid Journey 2018 for quite a few personal reasons. I have not shared the details here, and I won’t share more than broad strokes, but needless to say that my life has gone in a direction that I never expected it to go. For those who read my original Intrepid Journey posts written on a bluetooth keyboard with 80 million spelling mistakes, I love you all… take a read back through them; they’re now much tidier… and have pictures!

 

If I had to pick two words that would adequately summarize this year, they would be “growth” and “Truth.” They’ve fed off each other. I’ve spoken a truth – or more – into the air, and gone through a prolonged growth process. I went through a long solo trip (a growth process of its own) and discovered some more truths. And the cycle continued.
Even earlier this year, at the same moments I didn’t realize I was laying some personal emotional groundwork, I was speaking more truths. From a blog post that has become one of my site’s most popular (apparently to the surprise of no one but me), to opening up to some personal struggles, to acknowledging and voicing my needs in life, friends, and relationships… this year has been full of standing up – sometimes shakily with trembling knees, sometimes strongly with head up and shoulders back – and speaking my truth.

 

Top Viewed Blog Posts of 2018

5. To the Parents of Blind Children, Part 1: You have SO much Power
4. You Inspire Me! No… REALLY!
3. An Open Letter to Service Dog Fakers
2. Book Review: “Carry On” by Lisa Fenn
1. Is this OK with You?

Speaking Truth

This year, probably more than any other, has been a year I’ve been more outspoken than usual (yes, apparently, this is possible). I’ve continued to self-advocate in disability spaces, outlined specific expectations related to running a first race, and taken pride in the person I am, refusing to apologize for things I cannot change or control (still working on that last one). I’ve also found myself more careful, more cautious, of the words I put out into the world. From a blog post I wrote and published in the span of an hour to the one that sat in draft form for over a year (and which three people I respect had to talk me in to publishing), I’ve gained a whole new respect and appreciation for the power of words.

Growth

And I’ve grown – am growing – in ways I never expected. From examining why I respond to compliments in the way I do, to expanding my social and emotional worlds, to putting into words why music – something once as much a part of me as my hands or my lungs – was silenced for years. Some of these stories are still being written – some of them here – and I can see only good things moving forward. Even though 2018 saw the end of my marriage, it has also given me the tools to be able to move in to 2019 with grace, with strength, and with confidence.
And I cannot conclude this post without mentioning the friends and family cheering me on. There have been many friends new and old – some from truly unexpected places – who, in ways big and small, have held me up and kept me going, reminding me of who I was, who I am, and who I want to be.
Bring on 2019!

“Can I Borrow your Eyes?”: My Aira Story

“Oh, you’re blind. I’m so sorry. It must be SOOOOO hard.”

I hear this sentiment on a fairly regular basis, and I’ve generally dismissed it with comments like “I’m used to it” or “it’s not so hard.” While I still believe that inaccessibility and societal perceptions are the biggest barriers to my life as a blind person, I can’t deny that sometimes I would really like to “borrow” someone’s eyes when self-sufficiency is impractical or unrealistic.

For as long as blind people have walked this earth, assistance has been provided (or not) by family, friends, hired helpers, or strangers. Whether it’s getting rides to appointments, reading mail, finding stuff that fell on the floor, or making sure our favourite dress shirt still looks good for that big presentation, sometimes having working eyes just makes life easier. From low-tech volunteer matching services to high-tech cell phone apps, there’s no shortage of ways for blind people to request the help of someone whose eyes function better than our own. Over the past few years, the tide has started to turn from a volunteer-based model – relying on the good will of sighted people – to viewing blind people as a consumer base who should be able to rely on – and pay for – a service whenever we wish to.

Enter Aira.

What is Aira?

According to their web site, Aira is “… transformative remote assistive technology that connects the blind with a network of certified agents via wearable smart glasses and an augmented reality dashboard that allows agents to see what the blind person sees in real time.” A blind person – “explorer” – uses their smart phone to connect with an Aira agent, who can provide visual information based on the view from the phone’s camera or smart glasses worn by the Explorer. Agents are trained to provide unbiased information – no editorializing here – on everything from the application of makeup to the items on a restaurant menu to the cycle of a stoplight. Depending on the equipment setup of the Explorer, agents can also take photos, remote in to computers and cell phones, and provide technical assistance. The possibilities are numerous.

 

Using Aira

 

I decided to sign up for Aira while preparing for The Intrepid Journey 2018. My hope was to receive the glasses – the Austria glasses were shipping to new subscribers at the time – before I left. Unfortunately, this didn’t work out for me, so my use of Aira on my trip was limited by my cell phone’s camera range, battery power, and generous data constraints. Even before leaving for the airport, I tried out Aira to differentiate my passport from Ben’s, to help organize the receipts in my wallet (all of which were useless), and provide visual information about my regular route to work that had construction magically spring up overnight. While I was traveling, agents helped me navigate the complicated neighborhood where I was staying in Butte, set up my new bluetooth keyboard when the one I packed crashed and burned, and guided me through the state Capitol in Helena. My Austria glasses arrived at my house three days after I got back, and I’ve found them incredibly useful for tasks that require the use of both hands – like sorting socks or organizing my closet. But the phone is just as useful when I just need someone to quickly tell me what my Instant Pot screen says after I hear a beep that heralds the end of the world. The agents have always been professional and approachable, providing useful information that I wouldn’t necessarily even think to ask. Even with technical issues – some of which have since been resolved – I like the ability to contact someone who can provide useful, unbiased visual information on my terms, and I have no problem paying for the service, even as I realize that their pricing points can be out of the reach of many of their customer base.

 

Growing Pains?

 

While the user experience has been slick and professional, where Aira often falls short is their customer support. After waiting nearly a month for the glasses, I had to call them multiple times to get a status update on where they were in the shipping process. When the glasses finally arrived, the Hot Spot that came with them (which would provide a data connection so my phone wouldn’t have to) wasn’t enabled with international access. That was finally resolved with a long call to tech support that could have been avoided if the unit would have already been enabled with international data.

As an Android user, I am limited in my use of Aira. Iphone users have lots of useful features – like the ability to text message an agent when they cannot talk – but the Android app does not have this capability. My app will frequently freeze when an agent tries to take a picture (I work around this by using the glasses), and I am not alone; to date, nothing has been done about this, despite multiple calls to tech support. And I pay exactly the same price as an Iphone user, with maybe a third of the functionality. Because I wasn’t using the minutes allotted to me in my pricing plan, I agreed to share them with a couple of friends; the on-boarding process for one of my friends – which is free – was charged to my purchased minutes. I had to make three calls over 3-4 days to get the minutes credited back to me. And now that credited minutes don’t expire, I shouldn’t have to call and get them re-instated at the renewal of my billing cycle… except that I did, and a part of me is expecting to have to do the same in January if I don’t use my credited minutes during the holidays.

Some people have said that Aira is a new company experiencing aggressive, rapid growth, and they should be forgiven for these issues because the service itself is so valuable. I disagree. The service is useful, the agents are professional and well-trained, but – while growth is painful – it’s clear that the customer support model is broken. Phone tag should not be the status quo for technical issues or billing concerns, and that’s what I see regularly in online spaces.

 

Other Concerns

 

Recently, there’s been a lot of discussion – and dare I say controversy – about Aira’s business practices. While the customer service has been a frequent concern cited in social media spaces, it’s definitely not the only one. From appointing the CEO of Foundation Fighting Blindness – an organization that silenced concerns about their #HowISeeIt campaign – to their advisory board – to inconsistent messaging about pricing plans and roll-over minutes, to personal stories about attempts at customer retention that veer into blame territory, there’s plenty to be concerned about. I’ve read stories from explorers who talk about how they literally cannot live independently without the service; how much of that is the company marketing, and how far has the consumer base bought into it?

 

Conclusion

 

I think Aira has a lot of things going for it. But I think it has some very serious issues that it needs to address directly with its customer base. I’ve recommended the service as a useful tool to several friends, and I still think it’s true. However, the back-end issues have coloured my perception of the company and the service itself. And while I have lived without the service before – and can do so again – I’m not currently willing to throw the baby out with the bathwater. Hopefully, Aira will be able to listen to and appropriately address the loudly-voiced legitimate concerns of their customer base, who pay premium rates for a premium service with a few premium flaws.

The Intrepid Journey 2018, Denver: Culture shock!

My bus is so late arriving that I seriously wonder if it’s meant to arrive at all. It finally pulls up half an hour late, and the same driver who got me to Cheyenne is taking me on to Denver. He asks if I want to get off downtown or at Union Station; my ticket says Downtown, but he leaves the choice to me. We get hung up in traffic and arrive at Union Station 45 minutes late. At this point, I want OFF the bus, so I grab Jenny and my backpack and head in to the station.

 

This building is HUGE, and Jenny flawlessly takes me to a flight of stairs, where I ask a security officer where to go to get to Gate B8. He sends me up the stairs, and I find myself on some kind of platform. Jenny guides me somewhere… and next thing I know my arm is being gripped by two closing doors! Thankfully, Jenny had made it all the way in to the train, and didn’t get caught herself. Other commuters help me and make sure I’m OK. Another security officer agrees to walk me downstairs, to Gate B8; I had previously been directed to TRACK B8. My #15 bus arrives, and I show my pass to the driver (I’d purchased it from my phone on the bus). My first impression of Denver: it’s loud, it’s big, and oh boy I know I’m not in Montana anymore!

 

My friend Aziza has invited me to stay with her and her boyfriend, Ellaun. Ellaun meets me at the bus stop – after a brief period where we had no idea the other was there – and we head over to their apartment. We all sit around and get acquainted, and Jenny makes fast friends with Marna, Aziza’s guide dog. During the course of the evening, we eat, laugh, watch Forrest Gump… I turn in early (11:30 PM) while the others continue to watch movies. I want to join them, but I am SOOOOOO tired…

 

Saturday morning, I’m awake early. Aziza is dog-sitting a gorgeous puppy named Bernie, and he arrived earlier. He’s hanging out in Marna’s crate and Jenny’s chilling in the guest room. Aziza and I try and get the Keurig machine working, but it refuses to brew coffee; this leaves more counter space for Aziza! Instead, I enjoy a hot cup of coconut coffee and a buttered bagel.

 

A couple months ago, Aziza met a personal stylist, and found the experience of learning new ways to match clothes, accessorize and dress in a way that flatters her to be incredibly helpful. It’s something I’ve considered in passing, but never knew where to start. When I heard about Aziza’s experience with Sandi, I just knew it was something I wanted to try while I was in town.

 

Aziza and I leave the house late, and the Uber has a hard time finding us. We finally make it to Cherry Creek Mall, and ask directions to The Loft, where Sandi is meeting us. No fewer than six people offer to help us, but have no idea where the store is. After a frustrating 20 minutes of getting conflicting directions, Sandi meets us out front of The Loft so we could better locate her. The next two hours are spent trying on clothes, different sizes, different cuts, and taking some new but not outrageous risks in clothing purchases. Aziza loves some of the clothes Sandi has picked for me – particularly a gorgeous silver-gray cardigan I fall in love with at first touch. Sandi is attentive and observant, and her philosophy “If it’s not a LOVE, it doesn’t go in your closet.” In the end, I walk away with two pairs of pants (one forest green, one navy), two shirts (one navy, one cream with some navy stripes and a slight sleeve ruffle) and that cardigan. The whole store is on sale, and Aziza has discount cards that will expire next week, so I save more than 50% on my purchases… AND I have learned a lot about coordination that I didn’t know before… And I never once felt judged for not knowing something, or not wanting to fiddle with anything remotely fussy. The time has flown by and I’ve walked away with more than just a bag of clothes – though the clothes are nice!

 

We grab a coffee and light lunch at Nordstrom, then browse for a while before heading to Lush. The scents at Lush are starting to overwhelm me, so I step outside before I get a headache. Jenny guides us to Urban outfitters, where the closest exit is, and I’m so impressed with how well she and Marna are working together; we even ask a Nordstrom employee to snap a picture of Jenny resting her head on Marna’s back! Once outside, Aziza says there’s some local shops she wants to take me to. We struggle to find the Artisan Centre, and once we locate it we can’t browse too long because they’re closing soon. I purchase something I just know one of my friends will love, and Aziza calls an Uber to get to downtown.

 

Jenny and Marna

 

Our first stop is Dog Savvy, where we browse all kinds of dog supplies and dog-themed merchandise. Jenny is offered a treat, but she’s allergic to so many things that I have to decline, much to Jenny’s disappointment. From Dog Savvy, we head to Aillea, where I purchase a tiny container of shea butter for a spot on my arm that bothers me particularly in the fall. From Aillea, it’s just a quick jaunt to the 16th Street Mall, and that’s where we walk next.

 

The 16th Street Mall is a pedestrian mall in the middle of downtown Denver. Shuttles take shoppers up and down the mall, musicians play on most streets, and there’s lots of local businesses to explore and enjoy! There’s the Rocky Mountain Chocolate Factory, Where the Buffalo Roam, and more coffee shops than I can count. We even manage to find a bunny rabbit just hanging out on a patch of grass, not seeming bothered at all by all the people and dogs in its immediate vicinity. Jenny found the bunny when I told her to “find something fun”, and she finds her fourth coffee shop of the day (I think I drink too much coffee!)

 

Bunny Rabbit in Denver

 

Ellaun meets us at 5280, where we sit in a massive booth meant for eight people. I get a burger and salad, and enjoy the music from the ’90s and early ’00s being pumped through the speakers. We talk politics – which with Aziza and Ellaun is a lot more fun than it sounds – growing up, changing perceptions, tipping, supporting others’ decisions even if you wouldn’t make them yourself… it’s incredibly rare that such a deep conversation can be so humorous!

 

We call an Uber back to the apartment, and the driver is terrified that Marna will do something to him and his car. He seems unsure of the directions Aziza and Ellaun are giving him, and then Jenny tries to rush out of the car, trapping Aziza in the back seat. The driver then offers to hold my dog for me. NOOOOOO! Aziza holds her leash while I come around and get her out, and we’re both really really glad to b out of that Uber!

Bernie, the dog Aziza and Ellaun are dog-sitting, needs a run! Aziza and I are both exhausted, but we know our girls need a free run, too. Ellaun is heading up the stairs while I’m giving Jenny a chance to relieve… and my Loft bag rips, spilling smaller items onto the grass. I’m gathering things up, and Ellaun asks if I’m OK, then hauls the ripped bag upstairs while I finish with Jenny.

 

We make our way to the dog park, each holding the leash of a dog. Aziza stteps in a puddle and asks why I didn’t warn her. I laugh, though I probably shouldn’t; its a little puddle! What is NOT little is the amount of mud in the dog park. The dogs are running and chasing each other, and the humans are trying – mostly in vain – to keep out of it ourselves. we’re being sprayed with various levels of mud, and we all know we’re gonna have to clean off three sets of doggie paws, if nothing else.

 

I have more mud on me than Jenny does. My sandals are caked with it, and I’m speckled with it from toes to knees. Jenny’s got it on her paws, but just needs a brief wipe-down of her back leg and belly. Finally, as clean as we can be, three humans and three dogs head inside and call it a night.

 

Sunday morning, I get up early and start to pack. Now that I’ve decided to retire my sandals, I’ve got more room in my backpack. I thought I’d rolled my running clothes… until I make a concerted effort to roll them this morning. WOW! How many things can fit in one tiny packing cube! There’s hope for me to fit everything in and be able to fly home tomorrow.

 

Aziza has to work this morning, and so does Elaun. I’ve decided to hang out at a coffee shop while Aziza is at work for the morning. I order a coffee and a burrito, and sit down to enjoy the ambiance of a LOCAL coffee shop. When I’ve had my fill, Jenny and I walk around the neighborhood to see what we can see. I turn down residential streets, and discover a quiet pocket of space right inside this bustling city. I’m reminded of my own neighborhood, and I miss it immensely. In just over 24 hours, I’ll be home!!! A resident is mowing his lawn and stops to chat, and points me to the park up the street. I don’t have time to visit, since Aziza is on her way back to the coffee shop, but it sounds like some kind of event is taking place near the park. Back at the coffee shop, Aziza and I sit in large comfortable chairs that we don’t want to leave… ever! But leave we must. We’ve got a craft show to attend!

 

Handmade in Colorado is just like it sounds. We stumbled across a vendor yesterday tearing her table down, and she told us about the event at the 16th Street Mall. We browse through pens, dog collars and leashes, a lot of jewelry, and some beautifully carved jewelry boxes. There’s a lot of people, and it is HOT. Jenny flops down on the ground at every table we visit. At one of our last stops of the small show, we find some cool massage pillows, and humans and dogs alike are glad to get out of the heat. Then we relax in hanging chairs, like hammocks, and the craftsman/salesman calls me “touchy” when I firmly tell him to please not touch my legs to put them up on the footrests. The chairs are super cool, though!

 

Our budgets are stretched, but we hop the Mall Ride trolley and hop off two stops later, where we stop for lunch at a Mexican restaurant. I have a deluxe burrito with carnitas (seasoned pork). Our water glasses are constantly being refilled, and we talk about language, family, and music, and then head out to I Heart Denver, a fun artsy shop that consigns work from local artists. I buy a few things, then try and find a gelato spot Jenny showed us yesterday. We find it easily, and eat our gellato from paper cups with little spoons that look like spatulas. Then it’s time to battle the heat and make our way home.

 

We both doze off on the bus ride home, but we make our stop and get back to the boiling apartment just after 6:00. We feed the dogs, then watch them play, show each other souvenirs and important pieces of jewelry. Aziza shows me the wonder of vacuum-sealed bags; everything gets squished into a tiny package! I manage, with some mad Tetrus skills I didn’t expect to need again, to get everything squashed into my poor, long-suffering backpack. When Ellaun gets home, we take “twin pictures” of Aziza an me in our matching outfits, eat pizza and chat for a while before I sadly have to call it a night.

 

 

We are wearing matching dark green leggings and cream-coloured sweaters

Aziza and I are long-lost twins!

 

I wake up early, make sure I have everything I need, and play another game of “Backpack Tetrus.” Aziza asked me to wake her to say goodbye, so I do. We chat drowsily, pet each other’s dogs farewell, and hug goodbye before I head down the stairs. We had hoped to go to the state capitol together, but life had other plans. Instead, I’m doing my last part of my trip alone.

 

I get lost coming out of the apartment complex, but I make it to the bus on time. The bus, however, is late. When I arrive at the state capitol, Jenny takes me to a door that happens to be closed. It’s not her fault! When I get into the part of the building that is open, I am asked in a sickly sweet voice to please go through security. So I do. I make it up the stairs and start exploring the building. Unfortunately, the internet is spotty and I am not able to get too much visual information. Also, I find it a little bit creepy to be going into a building that, while public, is still somebody’s workplace. It’s kind of an interesting feeling that I didn’t expect to feel. The capital of Colorado has a lot of marble. It’s a very nice building, and I wish I could stay longer. But I have one more stop. The airport.

 

My bus arrives on time, and I relax for the few minutes until I head back to Union Station. After my experience when arriving there, I am a little bit concerned about making it to my train on time. However, the bus driver gives good directions for the train, and I manage to hop on in plenty of time to be able to make my flight. I have a lot of thoughts going through my head as the train makes its way along the tracks. Who was I when I left? Who am I now? What will I carry with me when routine sets in? Home will have those answers. And as amazing as this trip has been, my next adventure starts at home.

 

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