Category Archives: blindness

An Open Letter to Those who Get it

23 Saturday Mar 2019

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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

06 Wednesday Mar 2019

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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

21 Thursday Feb 2019

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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

31 Thursday Jan 2019

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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.

2018: The Year of Growth

31 Monday Dec 2018

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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

22 Saturday Dec 2018

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“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.

Accepting a Compliment: Backhanded Remarks, Proposing Alternatives, and Coming to Terms with Myself

21 Saturday Jul 2018

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Not long ago, I received a compliment. It wasn’t aimed at me directly, but I was being introduced to someone, and the person making the introduction was offering me praise right after providing my name. I stood there, shaking hands, feeling embarrassed and proud in equal measure. Who doesn’t like to receive compliments? And many people are embarrassed to be praised so publicly. But the embarrassment and awkwardness seemed to overtake the pride I felt, and it took some soul-searching and question-asking to figure out why.

What made this experience different? And why am I writing about it?

As a person with an obvious physical disability, I often receive comments that are meant to be complimentary, but make me feel edgy. Often times, my disability is brought up in conversation at moments I find awkward, inappropriate, or downright demeaning. So when I receive an honest heartfelt compliment, or praise for a job well done, I almost always hear “for a blind/disabled/defective person” behind it, even when that sentiment is not there. This is why backhanded compliments are so damaging. If you encounter me – or other visibly disabled people in public – you might be tempted to say some of these things. Can I propose some alternatives? Because I think I understand what you mean… but what comes out is probably not what’s intended.

 

“You do so Well at X… I’d never know that you’re… Challenged.”

 

I’ve received variations on this comment in personal and professional settings. I’ll use jewelry creation as an example, since it’s a hobby and business that regularly surprises people. Comments such as “She’s blind, and she makes beautiful jewelry!” put my disability at the forefront, rather than the art form I’ve spent years exploring, researching, creating, and selling. No one would say “She’s tall and makes beautiful jewelry,” or “He’s shy and makes beautiful jewelry.” And yet I hear this all the time!

If you see me at a craft show, take a minute to watch me work – it’s one of the reasons I bring my kit to such events. Comments like “This is beautiful!” or “I like the colours!” are always appropriate and appreciated compliments; you’d say them to any artist. If you are curious how I organize my kit, or pick colours, I am open to questions (but please keep in mind that I can only speak for myself; other people with disabilities may not be comfortable with these questions). If you compliment my work, I’ll likely open up more about my creative process, because you respect my work on its merits.

If it’s important to you to engage in discussions about disability, please use the word “disability” (words such as “challenged,” “Special needs,” and “differently abled” are generally not favored by the disability community.)

I hope to see more conversations like this in the future:

“That’s a gorgeous bracelet! I like the colours!”

“Thank you.”

“I’ve noticed you working on something the past few minutes. You look really focused. Can I ask a couple questions about your creative process?”

“Sure.”

“Do you have a design in mind before you create? Do you ask a lot of questions before putting things together? I love how organized your kit is!”

This conversation puts the work or accomplishment front and center, values the time of the artist (in my case), and still leaves room for the reality of disability to be acknowledged respectfully.

 

“I Can’t XYZ… and I can…”

 

Comments like “I can’t do that, and I can see/hear/walk” perpetuate the harmful idea that disability alone makes tasks challenging or impossible. While this is sometimes true, these comments – that are intended to raise people up – again place disability at the forefront and devalue the task or work or craft on its own merit. Is it OK to say “I can’t run a marathon, and I’m 22.” Yes and no. While both statements might be true today, what else contributes to that reality? Do you prefer to binge-watch Netflix to hitting the gym? Do you hate running? Do family or school responsibilities take up your time?

Let’s take another example: cooking. I’ve written before about cooking as a blind person. I’m pretty no-muss-no-fuss, but I can make my way around a kitchen.

“I can’t cook, and I can see.”

Do you look at everything when cooking? Probably not. Do you use your other senses? Most chefs do. Are you often tired after a long day at work or with the kids and prefer to order in? Did you once love cooking but hit a rut and just don’t feel like it anymore? Did you ever learn the fundamentals of measuraing and cooking?

See? It’s not as simple as X + all 5 senses = capability.

A “compliment” in this vain can respectfully be handled this way:

“You’re training for a marathon! That’s great! I need to kick my Netflix addiction before I could even think about doing that. Tell me more about your training!”

And if you want to make this comment about cooking, raising kids, going to school – everyday things that many people do without getting commented on – try something like this:

“Oh, you’re making lasagna tonight. I’m tired just thinking about cooking. Do you have any secrets to get into the kitchen?”

 

“It’s SO Great You Work Here!”

 

This is a complicated and messy topic. It’s clear that people with disabilities are an untapped resource in the work force. Many people with disabilities are ready, willing, and able to work, and still face discrimination and misunderstanding about their capabilities and access needs, and are frequently turned down for jobs. So, yes, seeing people with disabilities in the boardroom, on a job site, or behind a counter doesn’t fit what is a generally accepted narrative, and it often takes people by surprise.

But when I hear how great my employer is for hiring me, it doesn’t make me feel great; it makes me feel like my employer has done me a favour, and I just don’t belong. I busted my butt for years to gain the hard and soft skills to land where I am, and my performance speaks for itself.

But I think I understand the intent, and I hope conversations about disability and employment can go something like this.

“Thanks for that excellent and thorough information! Can I talk to your manager and commend you for your excellent service?”

OR

“I realize I don’t see many people with disabilities in the work force, and that isn’t right. I’m really glad to see your employer hires inclusively. This is a change I hope my workplace can make. Do you personally know of any resources that can help make this happen?”

 

Conclusion

 

I’ve written before that “Part of communicating, and doing so effectively, is that the giver and receiver of communication both process it as intended.” The words of praise that inspired this post caused me to dig deep and realize how backhanded compliments like the ones above have hampered my ability to accept honest positive feedback for what it is. Hopefully, with this realization, I can start to move forward with grace and optimism. And I hope that these damaging comments and proposed alternatives have provided some food for thought, so that you can compliment a disabled person respectfully and effectively, even if you don’t quite no what to say.

You Inspire Me! No… REALLY!

27 Wednesday Jun 2018

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“You really inspire me.”

I hear this phrase regularly. It always makes me a little bit uncomfortable for a wide variety of reasons. Though I can sometimes hog a conversation, I really don’t like having attention drawn to me, and phrases like this make me blush. As an disabled introvert, my desire for anonymity is frequently at odds with the fact that I am highly visible because of my terrific – if sassy – guide dog.

But my own discomfort with being viewed as “inspirational” goes deeper than my desire to blend in, to go about my day, to enjoy my hobbies or go to work or meet friends for coffee.

And it wasn’t until very recently that I started to figure out why.

 

Inspiration: What it Means

 

Until writing this post, I had no idea there were so many meanings for the word “inspire.” Merriam-Webster includes phrases such as “spur on, motivate” and “to influence, move, or guide by divine or supernatural inspiration.” The Cambridge English Dictionary has a definition I particularly like: “to make someone feel that they want to do something and can do it.” There are other definitions, too. Some are archaic and are not used anymore – to “breathe upon”, for example. But others – such as Oxford English Dictionary‘s “Animate someone with (a feeling)” – make me think that this is what the general public means when they say I inspire them.

But if that’s the case… what feeling do I animate in them?

And is that all there is?

I argue that there’s more.

So very much more.

 

(De-)Valuing Inspiration

 

There are people who inspire me. Some are famous people – who made things or did things that changed the world. Some are everyday people, who show great commitment to their interests, sacrificial love to their families, and generosity to their communities. All of these people inspire me to dream big, to work hard, to learn from others and from myself, to love freely and live courageously. These are people who have made a tangible, quantifiable difference in my life. I don’t throw the word “inspiration” around much, because so often it’s been cheapened when directed at me – for no other reason than I’m a person with a disability getting out there and living my life. I refuse to devalue it – and the people I’m pairing it with – by using it in place of “I’m feeling charitable towards this person” or “this story gives me the warm fuzzies” or “this person makes me smile because they’re them.” These are nice things, in their own way, but not inspirational, especially if they wouldn’t even be talked about if there was no disability in the equation. The late comedian Stella Young put this better than I ever could.

 

 

 

Apologies for Speaking Truth

 

It appears I’m not the only one who has complicated feelings about telling someone they inspire them. A new old friend of mine just started training for a triathlon, and I recently commented on their Facebook post about how awesome and inspiring it’s been to read their journey and cheer them on through their successes. I waffled about the use of the word “inspiring”, but after some soul-searching I realized it was apt. Their story spurred me on to keep training on days when I just didn’t feel like it (which I found out last week inspired a neighbor to get out there and start her own fitness journey, so around and around it goes). In my friend’s response back to me, they told me that I inspired them by posting updates on my own running journey – even when my time and pace and distance all sucked. I can’t find the comment now, but there was something in there about “sorry to use this phrase, but…”

Just yesterday, a very close friend told me that my way of looking at the world inspired them to look at the world differently – not in a passing-glance kind of way, but in a true, worldview shifting sort of way. “I hope you’ll forgive this wording,” she wrote, “it inspires me every day.”

It broke my heart that such a lovely compliment – a true compliment from a good friend – had to be qualified like this.

And yet, I understand why.

 

Taking Inspiration Back

 

Let’s be inspired by true inspirational feats and figures. Let’s stand up and tell our friends and families how they encourage us to make a greater difference in the world and ourselves. Whether fighting injustice, raising a family, providing thoughtful commentary, training for a race, blazing new trails through employment or education or innovation, there may come a time that someone needs to hear that they are truly making a lasting difference in their little corner of the world.

If a stranger inspires us, let’s take a moment to discern why: is what they do and who they are making a difference in their world and/or our lives? If the person standing beside them did that same task or feat, would we view them as inspirational? If the answer is yes, great! If not, it’s time to examine our own thoughts and expectations – are we inspired because who this person is is truly someone to emulate, or are we placing our own limitations on them and they just happen to jump high enough to “overcome” them?

There’s a place in the world – and in our conversations – for inspirations. Let’s reserve them for people – some we know and some we’ve never met – whose example continually spurs us on, rather than brushes up against us and fades into the background.

 

Who Inspires You?

 

Since we’re talking about inspirations, who inspires you? Why? How? In what ways have they changed your life? I’d love to read your stories in the comments below!

Book Review: “Patient H69”, by Vanessa Potter

31 Thursday May 2018

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When people say they fear going blind, I often wonder what that fear looks like. because – while blindness is not “comfortable” for me – I’ve come to a place of peace with my own vision, limited as it is. Memoirs of progressive vision loss are many, but there are very few memoirs of unexplained and sudden vision loss and the crisis that it creates.

Enter Vanessa Potter, otherwise known as Patient H69.

 

Publisher’s Summary

 

Imagine how it would feel to one day wake up and find your vision descending swiftly into darkness. Your fingertips are turning numb, and, as the world closes in around you, you realise there is nothing you can do to stop it. This is what happened to Vanessa Potter.

In the space of 72 hours, Vanessa went from juggling a high-flying career as a producer and caring for her two small children to being completely blind, unable to walk, and with her sense of touch completely gone.

Over the course of the next six months, Vanessa slowly began to recover. Opening her eyes onto a black-and-white world with mutating shapes and colours that crackled and fizzled, she encountered a visual landscape that was completely unrecognisable. As colour reappeared, Vanessa experienced a range of bizarre phenomena as her confused brain tried to make sense of the world around her, and she found herself touching and talking to inanimate objects in order to stimulate her vision – all part of her brain’s mechanism for coping with the trauma of sensory loss.

Going blind led Vanessa to turn science sleuth, reinventing herself as Patient H69 to uncover the reality behind her unique condition. With the help of a team of psychologists and neuroscientists, we follow Vanessa’s story as she learns the science of herself, transforming her terrifying experience into a positive, inspirational and scientifically fascinating endeavour.

 

Vanessa, Patient H69

 

The first part of this book is by far stronger the second. it chronicles Vanessa’s career and family, and the sudden illness that took over her body over a very short period of time. Vanessa describes in poignant detail what it felt like to be a patient, at the whims of medical staff who frequently viewed her as a patient, not a person. She faces down doctors and students who treat her condition as an anomaly, but who couldn’t care less about the little successes she uses to prove to herself that her condition is improving. From finding pleasure in the little things (like an independent shower), to facing down the anger about not being able to see and move the way she’s accustomed to, to the little victories of being able to instinctively know what she’s seeing, we’re there through it all with Vanessa. It’s a wild ride.

 

Ableism on Display

 

There were portions of this book that made me take sharp breaths with their poignancy. At one point, Vanessa is brought in to speak to medical students, and one of the professors made it abundantly clear that Vanessa’s time was valuable, full-stop, and told one of the students to stop disrespecting her by prioritizing the donuts at the back of the room. During her time in hospital, Vanessa was subjected to so many medical professionals, almost all of whom treated her changing vision as an inconvenience – it wasn’t perfect, so it wasn’t worth their time to discover.

Even Vanessa herself made a comment about a wheelchair being a “demeaning” way to travel, being at the whim of someone else all the time. There’s talk of a back-to-normal goal date, as though doing all the right physical and mental things will make Vanessa complete and whole again.

And yet, Vanessa seems to become much more aware of societal barriers around her, such as being unable to fit into the hospital gift shop with her wheelchair.

This is a fascinating look at both medical and social models of disability, and while I know many of these ableist thoughts were expressed in moments of great fear, pain and conclusion, this reader couldn’t help but think about friends who use wheelchairs, or who spend years hoping for a cure without embracing the lives they have now.

 

Neuroscience

 

The second part of the book – the neuroscience behind Vanessa’s condition and recovery – was interesting, but definitely went over my head in places. I couldn’t really tell one doctor from the next, what their role was, and how they could help explain the brain’s connection to interpreting visual information or motor function. If you’re interested in neuroscience, it’s written in an accessible style; feel free to fill in the gaps?

 

Conclusion

 

The memoir is much stronger than the scientific research, but overall I’m glad I spent time with this book. It’s clear that Vanessa’s experience of vision loss hasn’t left her – she still struggles to interpret some visual information, and finds it hard to explain to people just what she can see. it gave me a deeper understanding of friends with partial vision, and how they struggle to fit between the worlds of sight and blindness. As a memoir, it’s poignant, gripping, and compelling; as a scientific exploration it is less so. In either case, though, it’s a worthwhile read, particularly if you’re interested in the different ways of looking at disability.

3/5 stars.

I’m a Real Runner Now!

19 Monday Mar 2018

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Today is March 19. It’s the last day of winter, which has felt like it’s had a hard time making up its mediorological mind. We’ve had weeks of frigidly cold temperatures, several large dumps of snow, and weeks where the snow melts and it feels like spring is just around the corner.

Now that spring is actually around the corner – according to the calendar, at least – I can claim something I’ve wanted to for years.

I’m a real, honest to goodness, winter runner!

What made it all happen? Was it my desire – voiced every winter when I stopped running as soon as the ground froze – to run year-round? Or when I started contacting running groups to network with other runners? Was it the purchase of layers of clothes or spikes for my shoes? Was it reading the facebook statuses of friends who ran in sub-zero temperatures and desperately wanting to join them?

It was all of these things and more.

For years, I’ve run with my guide dog during the spring and summer and autumn months. For years, it’s been an incredible journey. For years, it relieved my stress and my pain – from a sudden job loss to months of job-hunting to the death of a beloved pet. One day this past January, I was waiting for a taxi (which you do in -35C) and noticed a runner on the path. I wanted to stop them and ask what they used for gear, but I was cold and tired and didn’t want to interrupt their pace. Besides, I’d already purchased pants, a face mask, shoe spikes, and a bright yellow jacket that makes me visible for blocks; I think I wanted the connection more than I wanted to swap gear stories. I’ve been unable to connect with local running groups because of their location (too far) and their speed (FAR too fast). Unfortunately, I think for me, at least right now, winter running is a solitary pursuit. I want to continually challenge my body, to fly with Jenny down the streets of my neighborhood, to feel the burn in my legs and my lungs as I pushed myself to my limits. Even on my own, I wanted the fair-weather journey to continue. I’ve been sidelined by blizzards, illness, and injury, but those can no longer stop me.

I am a winter runner!

I realized I was a winter runner just yesterday. It wasn’t my fastest winter run (a 5K in February) nor the coldest (a -20C run in January that presented tiny ice crystals on my eyebrows), but I think it was my favourite. My shoe spikes cut through the layers of ice and kept me upright. My legs burned as they forced my feet to shove aside the wet, slushy snow. My toes got soaked when the ice cracked beneath my stride and unearthed an inches-deep and very wide puddle. It was a sunny late-morning that would later give way to clouds and more snow flurries, and I felt like the sun had come out just for me, to cheer me on and push me forward. I came home with freezing toes, burning legs, and pants that were soaked halfway to my knees. Jenny shook droplets of water from her hips to her toes, ran upstairs and brought down her tug rope.

I wanted more.

So, now that I have proven to myself that Jenny and I CAN brave the cold… I refuse to allow myself any more excuses. We’re getting out there, hitting the road, and nothing can stop us!