Tag Archives: ambassadorship

Every Race is a Journey: When Not Great is Enough

16 Sunday Feb 2020

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A year ago, I ran my first Hypo Half – and my second half marathon. I had one goal for that race – to beat my first half marathon time – and I came through with flying colours. Right after that race, I hit the pavement and started training for my first marathon in June.

A year later, I’ve run two marathons, raced another half, and enjoyed a beautiful half marathon that was treated like an autumn training run. The runs I’ve raced, I’ve run faster than my previous race. Even when things hit the skids in Sacramento for my second marathon, I still managed to beat my first marathon time six months earlier by nearly ten minutes. I’ve got three marathons planned for 2020, and my goal is to run each one faster than the last. I’m glad I’ve got that planned – because I realize now that if I hadn’t, Sacramento might just have made me think twice about running marathon number three.

I decided to join the Kool Kids (a group of runners who trained together for the Sacramento/Honolulu clinic) in running the second Hypo half race in Edmonton this morning. A year ago, I ran that race with one goal (see above) and something to prove – that I was a bit of a badass and could tackle all that winter had to throw at me. This go-round, the Kool Kids wanted a training run (a 23 km run was slated for our training plan, so a bit more speed and a bit more effort provided the equivalents). Ed, my regular guide runner and training partner, was off on a cruise, so my friend and fellow Kool Kid Mike agreed to guide today, coming on the heels of his best-run marathon just a week ago. I decided to follow Mike’s lead – to wear my Hypo half toque backwards – then turn the logo to the front when we crossed the finish line. It’s a silly thing, I suppose, but we’re runners… enough said.

We started out strong – the first 4 km were solid. I could maintain that pace forever, with the light dusting of compact snow, some icy patches, but nothing to worry about. But the roads and sidewalks became progressively unstable and uncertain the further we went. We had half a kilometer of good footing, then about half a kilometer of snow that felt like running in brown sugar (Mike’s words, not mine). As time went on, I realized that my original hope (to beat last year’s Hypo time of 2:28:22) wasn’t going to happen. My legs got so tired in trying to keep me balanced. I drew encouragement as I waved at other runners who cheered as we passed (Mike says he wants to guide me on another race – he gets more people smiling and cheering for us than he ever has running solo).

“It’s a training run,” I kept telling myself.

But training runs don’t have cheer sections or water stations or music at speakers at the finish line. Training runs don’t trick my brain into thinking we’re RACING so we should run faster. Training runs don’t make me feel like crap… and this one was doing a spectacular job of that. I had to salvage this slow run somehow.

Seize the day! Take the opportunity to try different fuel and hydration options. After what happened in Sacramento, this seemed like a wise choice. I could run a half-marathon – I knew that – but what might be helpful on a race course? They had Gatorade at the water stations, and there’s no better time to try something new when you’re not expecting a speed record and there’s likely going to be parallels to a time in your not-too-distant future that you are. Kilometer 14 saw me with a paper cup of Gatorade – and while I’m not sure it positively impacted me, it definitely didn’t affect me negatively. Score one for Gatorade! Mike and I chatted, waved at more runners, kept pace with another runner and introduced ourselves after the fourth time we swapped positions on the race course.

The finish line drew near, after another kilometer of navigating across a dozen or so unshoveled driveways. I just wanted it to be over and to get inside for the bacon. I flipped my toque to show the logo on the front and crossed the finish line in what is truly the slowest half-marathon I’ve ever run – in fact I think even some walkers came in before I did.

It’s been a few hours now. I’ve had my fill of bacon and fruit – and realized once again that I don’t want potatoes after running a race. I’ve dissected the race, and my thoughts, and I realize I’m carrying some stuff that isn’t mine to carry.

I don’t want people to think that I’m a slow runner because I’m blind; I truly think I represented blind people badly. I realize I’m carrying this because often times I’m the only obviously blind runner on a race course. But I have always hated the idea that just being out there is enough. It’s a strange dichotomy – I didn’t throw everything I had behind this race, and in a way I wish I had. But that would’ve been foolish, truly a recipe for injury.

I need to let all that crap go!

I’ve had some time to think, and while I know people will think that my getting out there was inspirational because BLIND – or my speed (or lack thereof) was attributed to nonfuctioning eyeballs – I know the whole truth.

I went out there to run with the Kool Kids – and I did.

I went out there to finish – and I did.

I went out there to try free and different fueling options – and I did.

I went out there to train – and I did.

None of my actual goals today had anything to do with pushing myself to my limits for Hypo. None of my goals today included proving anything to myself as a runner – I’ve already done that. My goal wasn’t to race Hypo… my goal is to train for Vancouver Marathon in May.

And you know what?

I did that today, crappy footing and all.

So maybe the takeaway from this run – a training run with a medal and a brunch – is to realize the goal that you’ve set may not be for today. It may be a stepping stone, a building block for something further down the line, maybe months or years in the future.

And while I’m all for doing your best… sometimes your best in that moment is knowing when to step back and realize that maybe, just maybe, for a few moments in time, just getting out there and meeting your own objectives – whatever they are – is enough.

And it is enough.

 

Me and Mike at Hypo

Schoolbooks and Slingshots: Education, Legislation, and the Mess In Between

26 Friday Aug 2016

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What does discrimination look like? Is it being told, flat out, that you can’t do this task or have this job or enter that building or raise a family? Is it using insulting words, raised voices, thrown objects? Or is it subtler? Is it the pervasive idea that our presence in and of itself – with minds or bodies that don’t function “correctly” – is unwanted?
More important than that, how can we combat it? Is education the best way to eliminate misconceptions? Or is confrontation more productive? Over the years I have believed that one or the other is appropriate, but I’ve done a lot of thinking recently… why is it assumed that the two are mutually exclusive?

Not long ago I found a couple of friends posting on Facebook a status that went something like this: “Maybe I’m the only blind person you know, and maybe you’re afraid to ask me questions. THIS is a safe place to ask any questions you have – big or small – about my life as a blind person.” It’s an interesting thought – something that I would consider doing on social media, for people who have already built up some form of a relationship with me. But I question the appropriateness of educating the general public… just because they are curious and don’t know how I live my life. It’s one thing for a prospective employer or university professor to ask questions about how the job gets done – but my life is my own, and I shouldn’t have to educate the passenger beside me on the bus how I cook, clean, live my life, just because they’re curious and are dying to know. If someone has the time and inclination to share this information, that’s absolutely acceptable. But not everyone wishes to do so, and should not feel judged by the disability community at large or by the general public for politely declining to answer what can be considered nosy, invasive questions when directed at a non-disabled person.
But what if someone says or does or asks something truly offensive? Is education appropriate? The answer is… yes and no. It does definitely depend on the situation – what was said, how it was said, and how willing the other party is to understand that what they said, did or asked was inappropriate or invasive. I recently had a really rough day, where someone I asked for directions talked over me as though I couldn’t talk for myself, an interviewer told me that my resume was just what she was looking for but she “just didn’t know if I could do the job”, and then a woman on the bus told me that I “looked so young and attractive” that she “never would’ve guessed I had any challenges.” With person number 1, I was admittedly abrupt and short, thanking him sincerely for his help but that I could take it from here and speak for myself (His response: “Really? You can?”) The job interviewer was much trickier, because I felt like I had to not only convince her that I COULD do that job, but also be polite in the face of that dreaded C word (“can’t“). When I was later advised the position had been given to another candidate, I requested more information about my interview itself and was able to explain why her comments and questions were unreasonable and inappropriate, and how it’s always best to presume competence; she thanked me for my feedback and promised to implement changes to her interview practices. The lady on the bus… I was so taken aback by her comment – that attractiveness, youth and disability couldn’t co-exist – that I thanked her for her compliment but told her that it was offensive, because disability is not just for the old and the unattractive. She thanked me for telling her and said she would choose her words more wisely in the future.
But not everyone is as willing to hear our answers, having their own ideas about our capabilities and the realities of our lives. More than once someone has made a statement of how sad my life must be, but when I try and explain, I effectively get told that I’m wrong – that I miss out on so many beautiful things. It’s frustrating on an emotional level, but when it comes to employment it becomes economically frustrating as well. So what do we do when others’ perceptions and ideas and design affects our ability to work, to study, to access facilities? We sometimes fight through legislation. Maybe it won’t change someone’s mind until they realize how serious it is that we’re denied job opportunities, academic pursuits, and the ability to move freely through cities, streets and businesses. I’ve never seen the picture of the “Capitol Crawl” – a public visual demand for passage of the Americans with Disabilities Act – but it’s an important image to keep in mind: access to some is not access for all, and until all citizens have access to the same products, services and facilities, a society is not truly free and equal. And even though not everything is a fight, it is important to band together as a stronger disability community – to support each other and the non-disabled who stand with us as we try and make a difference.
Sometimes it’s best to catch flies with honey rather than vinegar. But if you can’t catch them with honey because they just don’t care, vinegar is absolutely a valid option. It’s important to choose our battles wisely, to conduct ourselves with a strong will tempered by grace, wisdom and logic. Emotion, if channeled appropriately, can be powerful, but it can’t be the only way we respond to circumstance. And logic without personal experience is dry and boring and, frankly, no one wants to hear that either. Sometimes change is best accomplished through well-timed, well-tempered words; other times it means pushing back against ideas and thoughts and practices through personal or government advocacy. No one way is right or wrong for everyone, but it is important that whatever we do, however we combat discrimination and prejudice, that it improves life for everyone, not just one segment of our community.

Do you See me with Vision?

26 Saturday Mar 2016

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Last week, the below video was shared in honor of World Down Syndrome Day. it is narrated by a young woman named AnnaRose, who has Down Syndrome, and the activities depicted are portrayed by an actress named Olivia Wilde, who does not. Only at the end of the video does one see AnnaRose herself, when she says |This is How I see myself. How do you see me?”

 

 

There seems to be two minds regarding this video, and in my opinion both are right. One is that it is important to look beyond the disability of Down Syndrome and embrace AnnaRose as a sister, daughter, or friend. On the Youtube video page, we learn that AnnaRose is a student, an employee, and an athlete. Her life is ordinary in many ways, so the hope is that you look beyond her disability and view her through the lens of humanity. She sees herself following her dreams, especially if they are impossible. She sees herself living an “important, meaningful, beautiful life”, and after all, isn’t that what we all want for ourselves?

 

The other train of thought is more about the visual depiction of AnnaRose’s life, her dreams and her goals. She says she wants to meet someone to share her life with, to be a sister, daughter, friend, to laugh until she can’t breathe, and to cry sometimes. But the video is acted by an actress who doesn’t live with Down Syndrome. This has left many disability activists with the sinking feeling that AnnaRose’s disability, and therefore a part of her identity, is being erased. In a world where disability is either fodder for inspirational feel-good stories or a means of discriminatory treatment, many people with disabilities want the public to see them openly living lives with Down Syndrome, or using a wheelchair, or accompanied by a service dog. Erasing disability is like erasing a part of one’s identity.

 

I first saw this video a week ago when it was first published, and honestly, it’s left me so conflicted. In my opinion, both schools of thought are absolutely right, and yet…

 

I am a woman with a disability. As such, I face many reactions from the general public. I’ve heard the sickly sweet tones of service staff talking to me like I’m a child. I’ve been told that it’s amazing and courageous that I’ve held over ten years of nearly continuous employment, heard the gasps of concerned protectiveness when I mention I enjoy running with my guide dog, or felt the need to fill the stunned silence when I mention that I have started up my own jewelry design business. Conversely, I’ve been told how sorry people are that I can’t see, that my husband is a good man for “taking care of me“, or that there’s no possible way that I can fit in in an office setting despite my work history proving otherwise. It would be a lie if I said these comments and impressions don’t affect me, because they do, no matter how I try and fight it. Not only do they affect how I see myself, they ultimately affect my livelihood and ability to be autonomous and self-sufficient. So, in a way, I want people to look past my disability, to allow me to make mistakes or succeed on my own merits as a woman, not just settle for “good enough” because of the perception that I can’t do any better because I have a proverbial scarlet D for Disabled tattooed on my forehead.

 

And yet, I have no desire to hide my disability. This is partly because it’s not possible for me, but it’s also because I feel like I need to live the best life I can – a vibrant, complex, nuanced, full life with blindness – in order to be happy and to embrace all of who I am. The comments and questions and seemingly constant advocacy aren’t ever going to go away, so as I see it, I have two choices: I can run and hide and let everyone else fight battles for me, or I can prove again and again that there is nothing shameful about being blind, and in fact it has its own advantages. To ignore my blindness completely is to ignore the one thing in my life that has made me as strong as I am while simultaneously bringing me to my knees. You wouldn’t expect a parent or spouse to hide the existance of their child or partner, and yet parenthood and committed relationships often change the lens in which we view the world. So why should anyone hide their disability just to make you more comfortable?

 

I want you to see more than just my blindness, to view me as a friend, an employee, an athlete, an entrepreneur, a customer… a human being. Talk to me, and anyone with a disability, as though your comments were directed back at yourself; realize that we are more than just people whose eyes don’t work or who don’t hear well or are unable to walk at all or without significant pain. We share your humanity, enjoy some of your hobbies, have opinions about religion or politics, have hopes and dreams and desires for our lives. But you don’t need to tiptoe around us, either. Don’t ignore our disability; it is still a part of who we are. In ignoring it, you are in effect not acknowledging the discrimination that we face and the pain and anger that engenders, and can’t truly get to know the completeness of our lives by truly celebrating our successes or picking us up when we’re feeling down.

 

Do you see me as a woman, with dreams for the future and hopes for tomorrow? A woman who likes watching hockey, loves running, and makes pretty beaded things? A woman who drinks too much coffee, loves the sound of a recent snowfall, and sings at the top of her lungs when no one’s around to hear her? That’s great! You see a big part of who I am. Do you see a woman whose eyes don’t work right, who puts labels on her canned goods in her pantry, who navigates the world with a guide dog by her side? A woman who is happy and content with her life, blindness and all, who wants to kick down doors and break down barriers? That’s another part of who I am. You can’t separate one from the other, and yet in a way I need you to. If all you can see is what doesn’t work (my eyes), then you’re missing out on a wicked Scrabble game, a loyal employee, or someone who will cause you to rethink your view of the world. And if you act like my blindness isn’t there, or is scary and uncomfortable, you’re ignoring a true reality of my existence. Put the pieces together, take them apart. See me completely, because I can’t envision myself as one person without the other keeping me company.

Book Review: For the Benefit of Those who See

29 Monday Feb 2016

Posted by in Book reviews, Nonfiction

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One of my blog’s most consistently viewed posts is this one, regarding the portrayal of blind characters in books. Because of this, I’ve decided to do a monthly book review, alternating between fiction and nonfiction, beginning with this book that created quite a stir in the blind community when it was first released.

 

For the Benefit of Those who See

By: Rosemary Mahoney

I chose to review this book because of this article that made the rounds of social media nearly two years after its publication. I found it well-rounded and compassionate, at great odds with reviews of this book. After mentioning this disparity  to a friend, I realized that I needed to read the book, to form my own opinion. Nearly a month after putting the book down, I still find myself incredibly conflicted by it. How can I be so awed by some beautiful friendships and inspired by the resilience of many of the blind students, yet put off by some of the awkward and inappropriate behavior and the fixation on everyone’s eyes?

 

Some Unnecessary Detours

 

The introduction to this book begins with a rather graphic description of an eye surgery. This is not for the squeamish. Perhaps the author uses this to reminisce about her own temporary blindness, how scared she felt. Then she uses this as a springboard to how she got involved with Braille without Borders. The first couple of chapters tend to jump around unnecessarily; I honestly found myself not caring about Rosemary herself, as her own experience of blindness was temporary and she was able to go back to her sighted life, with a seemingly perpetual fear of blindness itself. Later in the book, she describes the perception of the blind in wider western society, beginning in the eighteenth century and ending midway through the twentieth. The placement of this information was between the two sections of the book (the school in Tibet and that in India), which was quite logical, but the author didn’t cite any historical data from eastern countries, nor did she truly address the strides that have been made in western society in the past sixty years. It appeared that she viewed her ideas through the lens of a contemporary western chronicler, while not really addressing many of the true social realities that have historically been lived in the east. In these ways, the book takes off on tangents that may be informative as their own volume, but were cobbled together as a west-meets-east education model that doesn’t truly convey either particularly well.

 

I Did Find Inspiration Here

 

Unlike many other reviews by blind people, I did find myself truly awed by some of the students and their friendships portrayed in this book. I chuckled at the seriousness of the 12-year-old braille teacher, was touched by the young girl who persistently physically refused to allow a classmate to disengage by constantly praying for a cure, laughed out loud at the friendship of two loud and rather bawdy students at the school in India. Two young girls took Rosemary through a crowded Tibetan square, and showed her how they used their other senses to determine where they were; they were neither self-pitying nor constantly happy, yet they simply gave Rosemary the information they had. I was awed by many of the blind students’ resilience, not because they got up and got out of bed in the morning and did what they had to do with little or no vision, but they did so in a society that truly didn’t know what to do with them, and with little or no governmental or family assistance, sometimes fleeing truly abusive family environments.

 

But… But…

 

Some of the behaviors described in this book were truly cringe-worthy. I would hate to see any other group of people walk around with tea streaming down the backs of their shirts, waving long sticks around, crying out how glad they were to be (insert disability/race/gender here). It baffles my mind that in one breath, the heart-warming friendships and terrific adaptability of the students are wonderfully depicted, then in the next some of these same students are acting with the social grace of a toddler. It surprises me that a confident blind woman who runs the school would not address these behaviors; if she had, perhaps the author could have described the strides the students were making as she did with their computer learning. But as it stands, my western mind just can’t compute the disparity, especially in countries and cultures where cleanliness and propriety are quite important.

 

Educational Advantage

 

Two schools are described in this book. They provide food, shelter, and education for blind students, both children and adults. My opinion on blind schools has been documented here, and yet I applaud the author’s ability to detail the complex nuances and ironies at play for blind students in Tibet and India. In cultures where families run farms, and sighted children work on the farm, their blind child/sibling has an opportunity for an education. It’s one of the few times in which blindness has its own unique advantage.

 

Fixation on Eyes

 

I grew very uncomfortable with the author’s seemingly endless descriptions of people’s eyes. Many blind people wish we could make eye contact, but are uncertain how best to do this appropriately. Some of us are self-conscious about how our eyes appear to others, and based on the never-ending descriptions in this book, we have every right to be. Very few, if any people, were described as having nice eyes, and it appears that those who did have “normal” eyes had their blindness questioned by the author because of their confidence and social normality (see above). If eyes are the window to the soul, I’d hate to think of how soulless we are.

 

Conclusion

 

There are some nuggets of beauty in this book. Unfortunately, they are dispersed throughout outdated, unnecessary, and demeaning information. Even now, more than a month after concluding this book, I can’t seem to get it out of my head. As someone who lives in the “world of the blind”, I object to the characterization of us – of me – based on what my eyes do or don’t do, and the truly horrid manners exemplified in these pages. And yet, I draw inspiration, perhaps as the author intended, from the depictions of deep friendships, of learning despite the naysaying of family and society, of falling down and getting back up. I am glad I chose not to throw the baby out with the bathwater, but that bathwater is truly quite murky.

 

2.5/5 stars.

 

If you have any book recommendations, or wish me to review books more or less frequently than monthly, please comment below!

Can I just drink my Coffee? – on Education and Ambassadorship

22 Friday May 2015

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Over the years I have heard now and again that I need to be the best blind person I can be, if for no other reason than I may be the first (if not only) blind person your average Joe or Jane might encounter.  Some might say that it is my job to educate others about blindness, humanity, and living life by answering questions or providing demonstrations of my skills or assistive technology on the fly, no matter what kind of day I’ve had or what my plans are.  While I do agree that politeness and courtesy go a long way, I personally think I should have the right to enjoy a cup of coffee without being approached and asked a thousand questions about how blind people cope with life, for two very important reasons:

1) I am NOT all blind people. My marital status, education, employment, life circumstances, hopes, dreams, and fears are entirely my own. Just because I have an overwhelming fear of ladders doesn’t mean the next blind chick shares that fear; just because my blind friend that I am hoping to meet for coffee attends university doesn’t mean that further schooling is my goal.

2) You wouldn’t routinely approach an able-bodied stranger at a Tim Hortons and start asking questions, would you?  If so, then we’ll talk…

 

Last year, I contributed to my friend Meagan’s blog post on this very topic, waxing partially eloquent about how that ambassadorship role is just too unrealistic and heavy.  Expecting me to be an ambassador for the blind is like expecting one woman to represent them all, or one police officer, doctor, or parent.  We all know where that gets us: nowhere!

 

Sure, I’ve asked REALLY stupid questions of friends who use wheelchairs, are deaf, or live with chronic debilitating medical conditions.  These are people I have met either online or in person, and we’ve struck up a conversation, generally about normal everyday things (politics, sports, work), and not random strangers who cross my path.  I DO find the random approaches at bus stops or in coffee shops quite disconcerting, because it seems that all person X is interested in is the fact that my eyes don’t work.  After whatever conversation we have, right or wrong, that person will take away what blind people are “really” like.

 

Perhaps the perception of me as a blind woman being an ambassador comes because I, with my cute black lab guide dog, am much more visible than a woman of similar age fitting my general physical discription.  A “normal” Millennial having a rough day in a shopping mall doesn’t generally get six offers of assistance in as many paces, but I do, simply because the perception is that because I am blind, I require assistance.  I can politely decline said offers of assistance and still be viewed as stubborn and ungrateful; I can be forceful about declining such offers and still be considered stubborn and ungrateful; or I can accept the assistance (whether I need it or not) and feed into a perception that blind people are helpless and always need sighted help.  What is the common denominator? Someone else’s perception.  People will view me however they choose to.  No matter what I do, someone somewhere will form an opinion of me, right or wrong.  A comparable sighted millennial will be perceived by the public for having tangled messy hair or ill-fitting jeans, but no one bats an eye at those perceptions either.  Why should we as blind people be immune from perception? It’s just human nature; we aren’t so special to avoid it. All I can do is live my life the best way I know how, accept or decline a myriad of offers of assistance as needed and smile and nod about people who only view me as non-working eyeballs with a cute dog.