Author Archives: blindbeader

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

21 Saturday Jul 2018

Posted by in blindness

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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.

Book Review: “The Gunners” by Rebecca Kauffman

30 Saturday Jun 2018

Posted by in Book reviews, Fiction

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I love books about friendship – the nostalgic type that brings back memories to the friends I had when I was young. Don’t get me wrong, I love my new and/or “adult” friends fiercely, but childhood or adolescent friends hold a special place in my heart.

And because I write reviews about representation of blindness in books, my selection for June seemed like a perfect fit.

Was I right?

 

Publisher’s Summary

 

Following her wonderfully received first novel, Another Place You’ve Never Been, called “mesmerizing,” “powerful,” and “gorgeous,” by critics all over the country, Rebecca Kauffman returns with Mikey Callahan, a thirty-year-old who is suffering from the clouded vision of macular degeneration. He struggles to establish human connections – even his emotional life is a blur.
As the novel begins, he is reconnecting with “The Gunners,” his group of childhood friends, after one of their members has committed suicide. Sally had distanced herself from all of them before ending her life, and she died harboring secrets about the group and its individuals. Mikey especially needs to confront dark secrets about his own past and his father. How much of this darkness accounts for the emotional stupor Mikey is suffering from as he reaches his maturity? And can The Gunners, prompted by Sally’s death, find their way to a new day? The core of this adventure, made by Mikey, Alice, Lynn, Jimmy, and Sam, becomes a search for the core of truth, friendship, and forgiveness.
A quietly startling, beautiful book, The Gunners engages us with vividly unforgettable characters, and advances Rebecca Kauffman’s place as one of the most important young writers of her generation.

 

Mikey’s Story – Mostly Loneliness

 

This story opens with an eye test. mikey, aged six or seven, cannot read all the letters on the eye chart. When he is told to cover the other eye to test that vision, he says he can’t, because that’s his “good eye.” When he comes home and talks to his father – who clearly loves him but is emotionally distant – he is told to never ever tell anyone about his failing vision.

And so he doesn’t.

Even as Mikey’s vision worsens – as he holds down a job, inherits a house, adopts a cat, cooks amazing dishes, drives around town – he never tells anyone about his vision loss. He attends doctor’s offices and gets stronger and stronger glasses, and he navigates his home and cooks his meals more and more frequently without vision.

But he does all of this alone.

And he never really makes any friends.

Not after the Gunners fell apart.

 

The Gunners – Bonds that Break…?

 

The strongest part of Kauffman’s writing is her depiction of friendship. In flashbacks to their childhoods, we see how the Gunners meet and become friends, how they grow up together, how they keep secrets from everyone around them, and then secrets from each other. When they return for Sally’s funeral – a sign that there is no reconciliation of the group as a whole – they eat and drink (all but Lynn, a recovering alcoholic, and Sam, a born-again Christian) and open their pasts and discover painful realizations… that the person you thought was keeping secrets may have been – but not the ones you thought they were. Does that make a difference?

 

The Messiness of Disclosure

 

This book unfolds slowly and beautifully. Without spoiling the plot, most of the characters come to a place where they need to open up about the deepest parts of themselves to truly be free. Whether coming out to parents, or disclosing vision loss, or telling the truth about family histories, there are scary points of vulnerability that changes the course of life.

This reader wishes the author had gone deeper with Mikey’s blindness, past the outward denials – I frequently forgot Mikey was going blind – to moments of self-pity (when Mikey says he’ll quit his job and get a dog and then… whatever) to relying on friends for practical needs (there is literally no mention of blindness services, at all). This quibble aside, this book, more than any I have read, shows the power of disclosure and the risks involved, and how those around you can treat you differently once they learn something they didn’t know before.

 

Conclusion

 

This book is well worth your time. It moves along slowly but powerfully, and I loved getting to know the characters – their secrets, their revelations, their futures. Mikey’s story could’ve so easily been written without blindness involved – it didn’t really add to the story, even if it became so integral to the ending – but as written it was handled with general sensitivity. The bonds of the past, reality of the present, and hope for the future are what carry this book above its pitfalls.

3.5/5 stars.

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!

With a Little Help from my Friends

09 Saturday Jun 2018

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A few days ago, I saw a video posted online of a guide dog user being denied entry to a well-known New York club. Not only did their friends stand in the gap for them, trying to advocate and to explain that their friend had a right to be there, but also physically going into the club and making the manager address the issue.

At the time, I commented about the true sense of friendship between these three.
“And her friends refused to take it lying down. They refused to allow the manager to ignore the issue, they made him flat-out say that he didn’t care about the law and would discriminate anyway.
I want allies like this.
Allies who will stand in the gap when I say with a sigh that feels like a scream – because of someone’s actions TOWARD ME – “I’m sorry for ruining your night.””
And as I thought about it, I realized that, in fact, I do have friends and allies like this.

Just today, I discovered a post I wrote that puts into words what true friends are.
“Good friends are those who will talk to you about anything, talk to you about nothing, listen to you, cry with you, laugh with you, let you forget your troubles for awhile, tell you the truth even if you don’t want to hear it, visit you in the hospital, stand in line at the pharmacy with you, dance with you, laugh at your bad jokes, drive you home in a snowstorm, encourage you to try new things, accept you as you are.
I truly have great friends.”

 

A shoulder to Lean On

 

A few months ago, I went through a pretty unpleasant experience. In many ways, I felt like my brain and my body had betrayed me in ways they never had before, and I struggled to make sense of it all. From some pretty surprising corners, both new and old friends reached out and listened as I sorted through my feelings and my reactions to what happened. Their attentiveness and occasional “checking in!”s made a ton of difference at a time where almost nothing in my life made sense. When, after a few weeks, I was still struggling, those same friends cheered me on as I reached out for professional assistance. They made that time in my life – which was the beginning of a journey of serious and life-changing self-discovery – a lot easier to confront.

And, sometimes, friends do not have any idea that they’ve been a lifeline. When my employer sent out the weekly newsletter featuring a marathon runner with a disability, I reached out to her and said hello. We talked about what we had in common – disability, running, dislike of Nicholas Sparks books – for most of that day. What she doesn’t know is how talking about those things helped keep me together on a day where I was emotionally struggling, probably harder than I ever have. It causes me to stop and wonder… how often do we support our friends without even realizing it? In those moments where the struggle is not so obvious, how often do we unknowingly step into that space, lend a hand, and lift our friend up?

 

Ch-ch-ch-changes

 

I’ve had many groups of friends over the course of my life. Some friendships formed through proximity (school, work), others through common interests, and others through shared beliefs or lived experiences. Some have remained generally constant, while others have ebbed and flowed over the years. When life has taken us different directions, some have quietly faded into the background while a painful few have been quickly cut off at the roots. As I’m going through a pretty prolonged and complicated period of self-discovery, I’m fascinated at how some friends and I are growing closer, and viewing life through similar lenses – sometimes after long absences from each other’s lives – while others who were much closer to me when I thought, talked, and believed a certain way have faded into the background. For the most part, I really do think there’s a lot of truth to that quote about friends being for a reason, a season, or a lifetime. Sometimes, it’s painful and fascinating to learn which friends are in your life for what period of time.

 

Hands and Feet

 

I’m just going to come out and say it. Sometimes, adulting sucks. There’s big stuff – like moving, starting a family, getting a new job, experiencing illness or loss… you get the idea. Friends are regularly present for such events – and if they can’t be, their absence adds pain (sometimes more pain) to those big life experiences.

But friends show up in the little ways, too. It’s boring to buy groceries and go to the post office and clean your house. Sometimes, though, you can reconnect with friends and neighbors just by doing those adult things. Just last week, Ben and I ran into a neighbor and friend in the produce store we’ve been shopping at for years. We chatted and reconnected just while waiting in line. Sometimes, a friend who works in my office building will ask me if I’m going to a certain area she’s going anyway – sometimes I am – and we end up shopping or mailing packages and chatting about life. Another will join me on a run – seeming to pick those days where I REALLY don’t wanna! – and keep pushing for me to work hard and do well.

 

“I Want What’s Best for You… but I Love you As you Are”

 

I am truly blessed to have some of the most honest friends in the world. Sometimes that means telling me some uncomfortable truths about myself – especially if I ask directly. Sometimes I get told when I’m being too demanding; other times I’m reminded that I’m overloading a friend with my own emotional baggage. As painful as these conversations are sometimes, I’m glad that friends love me enough to tell me these things before they fester into resentment and anger.

And while it’s so important for friends to love us for who we are – and I am blessed to have friends who love me for me – they also cheer us on when we expand our horizons. When I first told one friend that I was thinking about signing up for a half-marathon on my upcoming trip, the first thing she said was “do it!” Sometimes you need a friend to talk you through a situation – finding all the angles, asking questions for you to consider – and other times you need a friend to just give you the push to go for it. I’m blessed to have friends who can – and do – do both.

 

I Could Go On… but What About You?

 

There are so many other things that make good friends, but these have affected me most deeply lately. If you recognize yourself in this post, thanks for being my friend; if you don’t, this in no way diminishes my love for you or how much I value our friendship.

What about you? What makes a good friend? Have you had an experience where a friend appeared from an unexpected place, or supported you without even knowing it?

Tell me about it 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.

YOUR book Reviews: All about Guide Dogs

25 Wednesday Apr 2018

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I know, I know, book reviews are usually published at the end of the month.

But it’s almost the end of April… that counts right?

I’m publishing this blog post today because it’s International Guide Dogs Day!

 

I had a book review all ready to go today on the blog, and then I decided not to publish it – that whole nugget of wisdom “If you don’t have anything nice to say…” is applicable here. I realized that I didn’t want to commemorate this day with a blog post of a book that I found light, fluffy and aggravating in equal measure; there’s got to be more enjoyable books out there featuring guide dogs.

So, I’m coming to you, my readers…

What are some of your favorite reads featuring guide dogs? Are there some books that you recommend with caution? What about those that could be better?

If you’ve ever worked with a guide dog, known someone with a guide dog, or just love stories about dogs… chime in here!

I can’t wait to get some great recommendations!

 

The Intrepid Journey 2018: Opportunity Knocks

16 Monday Apr 2018

Posted by in The Intrepid Journey 2018

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I hate the saying “everything Happens for a Reason.”

 

Sometimes, there is no reason.

 

But, in many things, I find myself embracing new opportunities where once I had seen closed doors.

 

Does opportunity knock, or do we make our own?

 

Are both true?

 

I’ve made a decision since last I wrote: I’m skipping Missoula. Sure, I booked a bus ticket to Missoula (and not using it will leave me out $30), but other bus route cancellations have made visiting there impractical. I’m spending an extra day and night in Flathead County, making my way to Great Falls by train and bus a couple days earlier than originally planned, which leaves me some time to spend in Butte! I’ve heard both amazing things about Butte, and have been told by other people to skip it. But since I was able to easily find accommodations in Butte (compared to the hostile reception by multiple Missoulian AirBNB hosts), and there’s a ton of historical stuff within walking distance, I figure I can’t REALLY go wrong. I’ve also been able to locate places to stay in Bozeman and Billings, which now completes the accommodation search. YAY!

 

Transportation is still a concern (though research has told me that there may be schedule changes later this month); and here I thought that would be the easy part of trip planning!

 

WRONG!

 

But… opportunities.

 

Wonderful opportunities.

 

I’ve been toying with the idea of running a half-marathon for the past couple years, and I happened to Google what races might be running in Montana while I’m in the State.

 

And I found one.

 

I have signed up for the Montana Marathon in Billings! It’s a day earlier than I planned to get there, but there’s a half-marathon! I’m tired of saying that someday I might run a half-marathon… I am going to run a half-marathon five months from today! I’m still working out some logistics – when I will get into town, who will be my guide runner, and how I plan to train both at home and away – but this is honestly the most right-feeling thing about this trip. It’s yet another way I will grow and stretch and push myself and meet more people… I couldn’t be happier!

 

Without the canceling of bus routes and shuffling my itinerary and putting it all back together again, this wouldn’t be possible.

 

So I’ll be running mile after mile, doing squats and planks and stair-climbs, thanking Opportunity for knocking when I was in a position to answer.

 

Please consider supporting this trip and help making it the best it can be!

Book review: “Carry On” by Lisa Fenn

31 Saturday Mar 2018

Posted by in Book reviews, Nonfiction

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I first heard of this book during the lead-up to the 2016 Paralympic Games in Rio. Fellow blogger Beth Finke caught an interview with the author on NPR and used it as a launching point to discuss the wonder and beauty of cross-disability assistance. I know I’m late, but I decided to read this book during the leadup to the 2018 Paralympics. I was hooked!

Publisher’s Summary

In the spirit of The Blind Side and Friday Night Lights comes a tender and profoundly moving memoir about an ESPN producer’s unexpected relationship with two disabled wrestlers from inner city Cleveland and how these bonds – blossoming, ultimately, into a most unorthodox family – would transform their lives.

When award-winning ESPN producer Lisa Fenn returned to her hometown for a story about two wrestlers at one of Cleveland’s toughest public high schools, she had no idea that the trip would change her life. Both young men were disadvantaged students with significant physical disabilities. Dartanyon Crockett was legally blind as a result of Leber’s disease; Leroy Sutton lost both his legs at 11, when he was run over by a train. Brought together by wrestling, they had developed a brother-like bond as they worked to overcome their disabilities.

After forming a profound connection with Dartanyon and Leroy, Fenn realized she couldn’t just walk away when filming ended; these boys had had to overcome the odds too many times. Instead Fenn dedicated herself to ensuring their success long after the reporting was finished and the story aired – and an unlikely family of three was formed.

The years ahead would be fraught with complex challenges, but Fenn stayed with the boys every step of the way – teaching them essential life skills, helping them heal old wounds and traumatic pasts, and providing the first steady and consistent support system they’d ever had.

This powerful memoir is one of love, hope, faith, and strength – a story about an unusual family and the courage to carry on, even in the most extraordinary circumstances.

Lisa’s Story

This story is deeply personal. While it is interwoven with strong and sharp threads of Leroy’s and Dartanyon’s stories – and those of other key figures – this is Lisa’s story. From early childhood memories to blustering and fumbling her way to a dream job to high school wrestling matches and beyond, We get to know Lisa as a warm-hearted woman who yearns for a family. And she definitely gets her wish!

We’re introduced to athletes, to coaches, to parents and siblings. We laugh, we cry, and we hope and despair. But, make no mistake, this is Lisa’s story.

Sports – The Great Equalizer?

I’m not huge into wrestling, but Lisa’s writing puts the reader in school gyms, locker rooms, and world-class sports venues. You can definitely feel her respect for athletes in their own right, though there’s a strong undertone (sometimes voiced by coaches and observers and sometimes by Lisa herself) that athletes with disabilities are not talented in their own right… they’re talented “for a legless kid” (as someone referred to Leroy). The reactions to both young men – men of colour, living in poverty, and with disabilities – are almost exclusively related to their disabilities (as many of their peers are both people of colour and living in poverty); some are astounded that they can wrestle at all and use them as “inspirations”, others don’t want to challenge them out of fear or ignorance, and still others give them the respect of laying it all on the mat. And yet, it’s clear that wrestling – and Lisa and ESPN’s exposure – gave both Leroy and Dartanyon opportunities that they otherwise wouldn’t have had.

Disability as Inspiration or Tragedy

As much as I enjoyed this compelling read overall, I had a hard time escaping the prevailing theme that disability was something to be pitied or inspirationalized. In Lisa’s career as a sports editor, she interviewed athletes from all walks of life, including a hockey player who – years before the interview – became injured and paralyzed just seconds after stepping onto the ice during his first major game (you could almost hear the sad cellos playing in the background). Leroy and Dartanyon’s wrestling coach contacted the local newspaper to write a story about his two disabled wrestlers (clearly without consulting them); Lisa was unable to explain why she thought it was a story that needed national attention, but to her it was, so she dropped everything to fly back to her home city and interview these kids. When the resulting ESPN story aired, the resulting letters and responses left this reader with the distinct feeling that Leroy and Dartanyon were meant to be viewed as recipients of generosity and catalysts for people to look outside themselves, rather than talented athletes in their own rights.

And Yet…

No one can ignore the confluence of race, poverty, and disability, and how Leroy and Dartanyon’s families – neither of which were what many would consider “stable” – shaped their high school and college/university experiences. Dartanyon, in particular, frequently refused to be “pitied” as a blind guy, even though he could’ve made use of adapted services, because he didn’t want anyone to treat him differently. Leroy didn’t have the luxury of being able to blend in, but it is clear that his school and training environments are not well-equipped for many students (lack of uniforms and sports equipment) and definitely not set up with wheelchair-accessible buses or classrooms. It’s hard to look away from the reality that many cards are stacked against these young men’s lives and journeys. Lisa is tireless in her desire to provide for Leroy and Dartanyon, even as her adopted and biological family with her husband keeps growing. It’s heart-warming and frustrating and an important conversation – nature and nurture and empathy and personal responsibility. It made this reader uncomfortable, and maybe that’s a good thing.

Conclusion

This book is part memoir, part sports journey, part family history. There are some deeply uncomfortable mentions of ableism, racism, and inspiration porn (based on the depiction of the ESPN piece, “Carry On”, this reader has no desire to see it). And yet, this autobiography is compulsively readable, uplifting in places, and thought-provoking. It’s definitely worth the read.

3.5/5 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!

The Intrepid Journey 2018: Back to the Drawing Board

03 Saturday Mar 2018

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Well, not quite… but mostly.

 

Since my previous post about my three bus cancellations, I’ve been waiting… and waiting… and waiting. In addition to the three tickets I was alerted had been changed canceled, further research has shown me that one more ticket had been altered, making my accommodations in Helena nearly unusable. I was able to get that ticket refunded as well, but that leaves me in a position of having multiple accommodations and no safe way to get from one to another, unless I book alternate arrangements and/or change my accommodation bookings.

I’ve booked one flight – the one to get me to Seattle – and one bus ticket that appears to have been unaffected by route and schedule changes. Beyond that, I’ve been doing mental gymnastics trying to figure out whether to keep my existing schedule and hope transportation figures itself out or making changes, forfeiting one unaffected bus ticket and hoping things don’t change further.

I am tired.

I’ve also decided to create a crowdfunding page. Many readers have read my Epic Road Trip of Awesome series and expressed their enjoyment of it. Because I plan on blogging about The Intrepid Journey, I’m asking faithful readers to consider supporting this trip to help make it the best trip it can be. 🙂

Please consider supporting this trip and sharing the crowdfunding page (even sharing can help out!)

I’ve got a generally clean slate, and that is both exciting and aggravating.