Tag Archives: perception

Book Review: Not if I See you First

31 Tuesday May 2016

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Whenever I pick up a book – particularly a novel – knowing one of the main characters is blind, I approach it with equal parts dread and optimism. Optimism because without that I wouldn’t bother reading the book at all; dread because so many depictions of us include such inaccurate tropes as “superhero with mystical extrasensory powers” or “severely incapable infantalized adult.” Though Young-adult fiction hasn’t been one of my preferred genres in a very long time, Eric Lindstrom (the author of this book) and a few other authors might change that in short order.

 

Not if I see You First

By: Eric Lindstrom

 

It’s been more than fifteen years since I was the age of Parker Grant, the main character in Eric Lindstrom’s novel published late last year. Then how is it possible that I see so much of myself in her? Part of it is her in-your-face attitude; the other part is her bravado that masks a deep sense of insecurity. This has been me. This is me. Oh, and did I mention she runs, too?

 

Summary

 

The Rules:
Don’t deceive me. Ever. Especially using my blindness. Especially in public.
Don’t help me unless I ask. Otherwise you’re just getting in my way or bothering me.
Don’t be weird. Seriously, other than having my eyes closed all the time, I’m just like you only smarter.
Parker Grant doesn’t need 20/20 vision to see right through you. That’s why she created the Rules: Don’t treat her any differently just because she’s blind, and never take advantage. There will be no second chances. Just ask Scott Kilpatrick, the boy who broke her heart.
When Scott suddenly reappears in her life after being gone for years, Parker knows there’s only one way to react-shun him so hard it hurts. She has enough on her mind already, like trying out for the track team (that’s right, her eyes don’t work but her legs still do), doling out tough-love advice to her painfully naive classmates, and giving herself gold stars for every day she hasn’t cried since her dad’s death three months ago. But avoiding her past quickly proves impossible, and the more Parker learns about what really happened–both with Scott, and her dad–the more she starts to question if things are always as they seem. Maybe, just maybe, some Rules are meant to be broken.

 

A note about Audio

 

The narrator of the commercial audio edition, Lauren Fortgang, became Parker Grant. Her voices for the supporting cast were distinct and memorable, even if not always pitch-perfect and pleasing (hey, not all people have pleasant voices, either). If you can, scoop this up in audio format; it enhances the reading experience.

 

Parker, the Mirror

 

Parker Grant. The take-no-prisoners, hands-off, say-what-she-thinks main character of this book. She’s book-smart, fiercely independent (she runs alone every morning at 6:00AM), and doesn’t give two hoots about what anyone says or thinks about her. Around her is a small group of friends who love her for who she is, even if she’s emotionally distant to them and can be incredibly self-absorbed. Even though some of the specifics were different between me growing up (and maybe even now) and Parker Grant, it was like Mr. Lindstrom held up a mirror in front of my face, with the reflection screaming at me “THIS IS YOU!”

 

Reasonable Tropes and Refreshing New Looks

 

As Kody Keplinger wrote in her terrific review of this book, for the most part Lindstrom shies away from tropes for Parker. It became important to him for Parker to have no vision – a common trope for blind characters – for a variety of reasons, primarily for her to misunderstand or simply not consider visual nuance. Even Parker’s fierce independence is in line with her as a risk-taker because that’s who she would have been, blind or not. She also evidences insecurities about herself in small ways – not wanting to eat “messy” foods like lasagna in front of a date. Instead of the dark glasses that are not uncommon in books and movies with blind characters, Parker chooses to wear blindfolds (bandanas or scarves over her eyes) as both a unique fashion statement that can’t be duplicated and as a way to hide her insecurity. I respectfully disagree with Kody that the latter explanation overshadows the former; both are consistent with who Parker is and can both motivate her actions simultaneously. This bravado-meets-insecurity makes her a complex, nuanced character that avoids many of the inaccuracies written into blind characters in mass media.

 

With a Little Help from My Friends

 

Lindstrom also avoids the trope of the “poor loaner blind girl.” Parker has old friends Sarah and Faith – and the ghost of Scott’s friendship – with her, and new potential friends Jason and Molly. Surprisingly, Lindstrom depicts female friendships incredibly well, with none of the cattiness and all of the miscommunication, strong bonding, and tough love that filter through even the deepest of female friendships. But his grasp on the male-female relationships were unconvincing; something was missing from Parker’s interplay with Scott and with Jason. Jason just seemed to be… there… to be Mr. Almost-Perfect, while Scott patiently waited in the background for Parker to come to her senses and talk to him. Neither really rang true as a romantic interest for some reason, but Parker’s ultimate realizations about Scott provided some messy, touching, Hollywood-worthy moments with just enough nuance to avoid slipping into really sappy territory. There was no true “resolution”, but life is like that sometimes – messy and incomplete and sometimes you just don’t know.

 

Conclusion

 

Parker is not always the most likeable of characters, which is in fact what I loved about her. She’s prickly, feisty and opinionated; she loves her friends and hates to be buttonholed into what is expected of her. I saw enough of myself in some pretty scary ways that I wanted to rip the headphones out of my ears, give her a shake (if she didn’t run away or hit me first), and provide her some pearls of wisdom as someone who has traveled many of the same paths as she has and emotionally responded in many of the same ways.

But, since I can’t do that, I can at least encourage you to spend some time with Parker. Tell-it-like-it-is types will love her take-no-crap attitude. If you’re an empath, you’ll want to comfort her when that shell cracks wide open. Runners will marvel at her discipline. If you’re none or all of these things, go along for the ride; it’s well worth your time to support an author who created a blind character that is so nuanced and human. You’ll never forget Parker Grant is blind, and she wouldn’t want you to; but don’t get in her way!

 

5/5 stars.

“You’re… um… Not What I Expected”

27 Friday May 2016

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Expectations. Everyone has them. From the one that says your dream vacation will be… well… dreamy, to the one that your friends and family will be there for you. Usually, life follows this script, at least most of the time… but what if it doesn’t? What if your dream vacation ends up going just sideways enough that you have hilarious stories to tell for years to come? Or what if you needed someone you thought would always be there and they devastated you by being distant or unavailable?
What if you spent your life dealing with not only your expectations about how your life should go but other peoples’ vocal perceptions of it?
I am a 31-year-old married woman with a solid work history, a jewelry design business, a love of running, and a huge mental vocabulary of words to pull out at a moment’s notice… Oh, and I’m blind.
I can just hear your thought [processes, because I’ve heard them vocalized in my presence (if not at me, around me).
Whoa! But you… you can work? Make things? Run? Play Scrabble? But… but…. you’re… you’re blind!
Um… yeah? So? You make little adaptations to your life every day, from changing the way your cell phone’s wallpaper looks to rearranging your kitchen so you can find things more easily. My life is a bit more linear than yours, but that doesn’t mean I can’t do anything I wish to pursue (except, maybe, drive a car, but the technology is coming). The fact that you expect my life to be a certain way because you just don’t know isn’t hurtful in and of itself, but refusing to listen and be educated to change your perceptions… that IS damaging.
And I am not alone. Many people with visible physical disabilities are nearly constantly bombarded with the idea that because they do things differently they can’t be done at all. People who use wheelchairs are frequently publicly asked if they can enjoy an active intimate life. Many friends who are deaf or hard of hearing or have non-speaking autism are treated like they can’t understand information or directions because they cannot hear and/or communicate differently than the general public (ASL, interpreters, written communication). Many people with chronic pain are told they aren’t eating healthy enough or doing enough yoga or “thinking positively” enough. We can educate only so much; if the general public expects sob stories and the drudgery of disability – like in a movie I won’t name that’s being released this week – it directly affects our ability to make a living (if our disability permits) and undermines our autonomy and dignity (if our disability doesn’t).
I’ve walked into many job interviews where my blindness overshadows my work history and experience. With one exception, all jobs in that work history have been incredibly accommodating and have been true partnerships between employer and employee from day one. I don’t mind educating companies, interviewers, or even the general public if they honestly want to know how I do things productively, that my life isn’t drudgery, and take away with them the fact that I’m really no different from anyone else. But when it directly affects my ability to make a living or live an independent, autonomous life, that I do mind. If someone tells you that you have done something that hurts them, it should empower you to discover if there’s any truth in it. If so, it’s important to make changes to validate the lived experience of the person who’s been hurt. For many in the disability community, that isn’t happening.

So I’m not what you expect of someone who is blind. I am confident, independent, a quick learner who works with her hands and moves quickly on her feet. Even if I weren’t, so what? People with disabilities intersect all manner of age, race, gender, belief system, political affiliation, personality traits, motivation, hobbies, interests… and some of us have physical challenges that are much less of a barrier to independent, autonomous living than the perceptions that surround us. If I – or anyone else – is not what you expect… Does that make me super awesome? Sure, my ego would like to think that. But doesn’t it reflect less on me and my “awesomeness” than on you and your own prejudgments?

So next time you reorganize your kitchen to make things easier to access, or change the brightness setting on your cell phone screen, or get map directions to somewhere you’ve never been… you’d feel awfully patronized if I told you it’s awesome that you prepare so well or do things that make your life easier. So, do me a favor, don’t do it to me or my friends in the disability community. Our physical “limitations” are nothing compared to the pity, the discrimination, and the “expectations” the general public has about our lives. Leave your expectations at the door, and listen to what we are really and truly saying. Many of us love our lives and are trying to tell you; many of you just won’t listen. Many thanks to those of you who do.

“But… You Don’t Look Blind”

15 Friday Apr 2016

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“You don’t look blind.”

Every blind person I know has heard this comment – or wishes they had – at one point or another. Since it’s a common comment with wide-ranging social implications and viewpoints by the recipient, a blog challenge went out to several friends on Facebook. Once this post is published, I will link to the others’ posts at the bottom of this one. I’ve never done a “blog challenge” before, so here’s my first!

 

Who Gets this Comment?

Almost every blind person I know has received it at one point or another, especially those whose blindness is caused by genetic vision loss rather than the result of surgery, illness, or trauma. Even if the blindness is visibly obvious, if a blind person does something or expresses an opinion that involves a degree of “advanced competence” or normality, it isn’t unusual for those words to follow. It is often given by strangers when we’re out doing ordinary things like shopping or crossing streets or applying for jobs…

Is it a Compliment?

these words are meant by many as compliments, similar to “I forget you’re blind!” But denying the reality of someone’s blindness, or acknowledging that they would be treated differently because of it, is rather insulting, no? And just because you fear living your life with blindness (it’s a well-documented fear) doesn’t mean that those of us who live with blindness or visual impairment – cannot be happy, competent, “normal” people. So whether we look blind or not… what difference does that make to you? You don’t look ignorant…

Broader Implications

Many friends with vision impairment that’s not visibly obvious have been told that they don’t require accommodations due to the fact that they aren’t “disabled enough”, get questioned when they enter public buildings with service dogs, and basically have to prove that they require the supports they need. For someone such as myself, no one questions the fact that I can’t see, but expresses shock at my hobbies, job history, or desire to live a “normal life” (the nerve of me!). So blind people get the short end of the stick on so many levels: we’re either visibly blind and are objects to be pitied or belittled or scorned or asked endlessly what happened to our eyes, or we don’t “look” blind and don’t deserve the accommodations to live our lives as productive consumers, employees, or citizens. Sometimes I wish I could hear “You don’t look blind”, but then I realize that it really isn’t a compliment… having to prove a negative – that I can’t see. And if you expect someone to identify themselves as blind by anything more than a cane or guide dog to travel safely… I seem to recall a system of forced self-disclosure about seventy years ago in Germany…

Why can’t I just Take it as Intended?

Part of communicating, and doing so effectively, is that the giver and receiver of communication both process it as intended. It isn’t easy to be public property, and everyone seems to have an opinion on what I look like, what activities I can enjoy, and if I can travel safely by myself) just because I am blind, and I look like it. I don’t have the time and mental energy to get angry at everyone who tells me how great it is that I have the teeny tiny bit of vision that I do (as though my life is more valuable than someone with none), who asks what happened to my eyes, who thinks there’s no way I can be competent and happy. Not everything is worth nitpicking over, because not everything is a fight. And yet… I am angry over something that’s supposed to be complimentary. Maybe it’s a bit of jealousy that my blindness is never ever questioned. Maybe it’s frustration over the fact that I am blind and travel with a guide dog (and before that with a cane) that makes me highly visible. Maybe it’s the fact that because I look blind I get treated like a child, and if I didn’t I would have to actually convince someone that I am blind because I am independent, competent, and can think and act for myself. So, yes, I am angry… Wouldn’t you be?

 

Other Perspectives

Thanks to those who’ve taken up this challenge as well. It’s not my challenge, but am glad for the alternate points of view. It makes for a nuanced discussion on this topic.

Charlie lives in the land of the visually impaired, too “blind” to be considered sighted and too “sighted” to be blind.”

Lauren describes conversations she has frequently and discusses the importance of not judging a book by its cover… or, in this case, a disability status based on outward appearance.

Ashley isn’t  offended by the comment itself, but the accusations of fakery followed by outright disrespect and discrimination that follow.

If at all possible, Buddy is more polite and more assertive than just about anyone on this topic.

Meagan asks an important question: What, exactly, does “blind” look like? And if you can’t answer that question reasonably…?

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.

Your “Inspiration” doesn’t Pay my Bills

31 Sunday Jan 2016

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I’ve been on the job hunt for almost a month now. It’s a very different economy from the one I saw three years ago when last seriously looking for work. Like many people, I have experience and skills; the biggest challenge I’ve found (and I am not alone) is getting call-backs for interviews.

The following statements are my own preference, based on my own experience of work, resumes, and interviewing; not everyone will share this opinion. I don’t ever pre-disclose my blindness to prospective employers unless absolutely necessary. In my opinion, it has little to do with my ability to do the job itself, and I choose not to give my interviewers any opportunities to walk into that interview room with preconceived ideas about my capabilities. The idea is, if the job posting indicates that my skills and qualifications fit, I send in an application just like everyone else; I wouldn’t apply for a job looking through microscopes or driving a truck. Sometimes this has worked in my favor; my resume has stood on its own, and my solid work history and a successful interview has landed me a great job. Other times, I learn when I get there that there are truly visual job duties that were not indicated on the job posting, in which case I choose not to assign blame. Other times, I get turned down for the job because… um…?

I recently ran into a situation (though not for the first time) where I was graciously turned down for a job post-interview. I was told that my skills and qualifications were solid, but that there were some job duties that posed a safety risk to myself and my guide dog. There actually was a legitimate case for this, so I chose to be gracious in reply… until I read the part that said my attitude and qualifications were inspirational, and the hope was that I would find a position somewhere else.

Guess what? If I wanted to be inspirational, I’d go on the motivational speaking circuit. I am looking for a job, something that can use my skills and background, where employer and employee have a functional relationship, both being realistic about the capabilities of an employee with a disability, making reasonable efforts on all sides to be accommodating. Seriously, it’s not that hard. People just have to get over the fact that I wish to be taken seriously, and actually want to work for a living, and my resume proves I have the chops to do it! I took to twitter to vent, but I never expected my little tweet to gain such traction (as of this posting, it had 50 retweets).

There are many noble causes out there aiding people with physical or developmental disabilities, those struggling with mental illness and/or poverty. What few people understand is that people with physical disabilities want to work, to be taken seriously in the classroom, boardroom, or salesroom. The more we get treated like token inspirations, the more likely we are to become recipients of aide due to poverty and mental illness. Very few well-known figures who advocate for social change and social justice due to race or gender or other protected grounds even touch on disability. Why is that? Don’t they understand that the more we get shuffled off as “someone else’s problem”, the more likely we are to get sick and tired of just being pushed aside?

In the meantime, I choose to fight, because someone, somewhere, will give me the opportunity to use my skills and background, who will take me seriously as a job applicant. It’s happened before, and it will happen again. But I have a few tough questions for social justice warriors on both sides of the disability continuum: For those who don’t acknowledge our needs at all, and choose to address discrimination based on race, creed, or gender (legitimate grievance, to be sure), why is this the case? We face more discrimination on a daily basis than many of those for whom you are fighting. For those advocating on behalf of the disability community: why is employment not front and center in many of your mandates? In my opinion, meaningful employment is quite possibly the only thing that gives those of us who wish and are able to obtain it the dignity and self-respect we so desire. And for those employers who shuffle me and others like me off, telling us we’re so inspirational for coming to the interview? Guess what: I am not someone else’s problem, and your inspiration doesn’t pay my bills.

On Advocacy: When to Fight Back and when to Let Go

03 Saturday Oct 2015

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This post has been a long time in coming, because I believe it relates to many aspects of life – employment, education, transportation, access to public facilities, and so on.  Many of us, including me, have had to fight to get the services, access, or technology that we need to be productive classmates, employees, or members of society.  This blog post has been inspired by a recent event in my own life, and I am going to be purposefully vague about it; for those who know the whole situation, please keep it to yourselves.

 

Advocacy is essential to people with disabilities being productive members of society.  We may travel differently, use different skills, have cool gadgets that talk or vibrate, but beneath all that, we would like to not only be included but to feel included in academia, athletics, the workplace… even reality TV.  Sometimes we request accommodation that would be required for such inclusion, and it’s provided with little or no fuss.  Sometimes we have to fight harder for such accommodations, because to be without them would mean that we cannot be those included, productive people that we know that we are.

 

And other times, when the accommodation is more of a preference (even a strong preference) than a requirement… what do we do then?  Do we force that reluctant and unwilling university professor to accept us in that class?  Force an employer to provide additional technology above and beyond what they have already agreed to pay for?  Or is the best advocacy to push back by finding our own workarounds, by taking a different course with another professor or finding alternate sources of funding for that technology?  Sometimes, one action is appropriate, and at other times, the other is.  On other occasions, moving on to other pursuits is essential both for logistics and for the mental energy and stress that accompany fighting for access.

 

I know people who believe that fighting for access to anything for everyone is important and essential.  Without people like them, we wouldn’t have made the advances we have to education, public access, and the workplace.  But not everyone has the strength or inclination to advocate in this way; some prefer to advocate by finding ways around the obstacles placed in our path.  Unfortunately, still others take no for an answer and live as though no one will ever accept them.  This fatalistic view bothers me more than anything, because it perpetuates the idea that we will go away if we get turned back.  And while I believe that pushing back and demanding access is important and essential, picking our battles is even more crucial.  What does it benefit anyone if we are granted access to one aspect of life for no other reason than because it’s mandated?  Does it not speak more to our tenacity and courage that we find ways around those roadblocks that get placed in our way?  I’m not talking about making martyrs of ourselves, but finding the way to maintain our dignity while allowing our academic institutions, workplaces, places of leisure and modes of public transportation to realize that we are human first and disabilities second.

 

I don’t have easy answers to any of these questions, as my own choices regarding self-advocacy would be considered too polite by some and too demanding by others.  Some would tell me that finding ways around the word “no” is not my responsibility.  And yet, I find that such times give me an opportunity to prove not only to others but to myself that I am stronger than the word “no”, and that I can be creative when it comes to finding solutions to access concerns.  Sure, I might ask a friend for help in a pinch, or might even have to push back and demand my right to access… but until such point as I am considered a colleague, a shopper, or a student first and a blind person second, I find proving the naysayers wrong incredibly rewarding.

 

For those who DO fight by demands and demonstrations for reasonable access and accommodations, I thank you, because my life would not be as well-rounded without people like you and those who’ve gone before.  For those who request access by proving by getting kicked down and getting back up that classes, job duties, and independent life ARE possible, even essential, I thank you because you give me the courage to go on another day.  For those who decide after weeks or months or years of fighting that it’s no longer worth it, and blaze your own path, you do show remarkable courage yourself by realizing that it just isn’t worth it anymore; you are not a failure, so pick yourself up and blaze a new path for yourself.  But for those of you who just take no for an answer, just because it’s hard, don’t get in my way, because in effect you are part of the problem; obstacles are placed in our path due to the ignorance and unwillingness of a public that think we should be hidden away in institutions or treated like angelic beings for getting out of bed in the morning, and laziness and apathy perpetuate this.

 

Perhaps I’m more of a fighter than I thought…

When smoke Gets in Your Eyes

27 Sunday Sep 2015

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This past weekend, I had the opportunity to go “Fall camping”. For those who have never been (like me), it’s exciting and fun… except for the fact that you need to pack gloves, extra socks, toques (warm hats), realize that it takes forever to get a fire going, and layer up your blankets, because by gosh it gets COLD!

I loved it.

But the experience taught me some pretty startling truths – some humorous, some not so much – about my perception of myself, my own expectations, and how sometimes everything going to hell is just what you need to smack you in the face and get you back on track.

Let me preface this by stating that the trip was NOT a complete flop, and not even a bad trip. Just enough things went just sideways enough to make for some great reminiscences for the next camping excursion. Ben and I got to the camp site right on time, after a minor detour to the wrong campsite on the far side of the canal. Unfortunately, pulling in to the wrong campsite – a heavily treed area – signaled to Jenny that yes, yes yes, this was a PARK and this would be FUN, and let’s start whining the WHOLE rest of the way to getting back on the road and on route to our correct campsite. Thankfully this whining thing stopped until we literally pulled in, and she let out one plaintive yowl… and proceeded to hop out of the car and sniff all the trees and bushes within a ten-foot radius.

Our friends had been there for a couple of hours, had tried (unsuccessfully) to catch fish for dinner, and spent thirty minutes to get a campfire going. For some reason, the fly on our tent wouldn’t cooperate, so it took all four of us to actually get the thing assembled (this is what happens when you go camping less than once a year). We sat around the fire, but no matter what direction the wind blew, which chair I sat in, the smoke kept blowing in my face. Thankfully this doesn’t bother me too much, so I just rolled with it, drinking strong coffee and attempting to keep my already cold fingers warm. Jenny started shivering almost immediately, and was ecstatic to be able to lay on her bed on the cold ground. We enjoyed steaks, potatoes, and Greek salad for dinner, then donned extra socks, gloves, and/or sweaters and chatted around the campfire, complete with funny stories, whiskey, and beer, until one of the lanterns went out (about 11:30). Ben and I retired to our tent, and our friends headed to their camper…

Whoever can successfully change into their pajamas in a 2-person tent with their spouse and their dog inside it should get some kind of award. I can say this because I’ve successfully done it. Now, try telling said dog that yes, it really and truly is warmer under the spare blanket, NOT on top of it… one of those useful things they didn’t teach you at guide dog school. Repeat this three times during the night, lose your toque somewhere in your tent and wake up with a frozen nose, realize at 6:00 AM (while your dog has to pee) that your air mattress has a leak in it, and you’ve got a pretty good idea about the awesome time that was had by all in the Lang tent. No word of sarcasm… we had a ball… especially when Jenny woke up at 6:00 AM, wagging her tail against the side of the tent and giving Ben a tongue bath to wake him up; we laughed uproariously, making our friends wonder what in the world was going on just a few feet away from their camper.

The water at the pump had a sign on it that it wasn’t suitable for drinking, so we went into the nearest town (about half an hour away) and filled up on water, gasoline, and coffee. Jenny did terrific guide work in the restaurant, despite the fact that I didn’t have her regular harness with me, and we had to explain about six times that she is a service dog. Thankfully, we had our coffee in peace, filled up our water bottles and our friend’s Jeep’s fuel tank, and back to camp we went.

At this point, Jenny still thought that camp was the biggest off-leash dog park EVER. Her only exposure to wooded areas for the past couple years has been at off-leash or multi-use trails, and the trees and bushes and ground at camp all smelled SO AMAZING. Little matter that I was telling her to do something guide dog related (or even not guide dog related); listening was apparently optional. My city dog just wanted to get out her mojo. So we stuck a railroad spike into the ground, clipped her leash to it, and let her sniff around camp. This pleased her for about fifteen minutes… until she wanted her bed again – close to me, but far from the fire, please.

The fish weren’t biting. And the new campfire was taking forever to light. And the barbecue Ben was using slipped and fell off the picnic table, spilling a sizable chunk of bacon on the ground. Thankfully, we had enough bacon in the cooler – and eggs and Greek salad in the ice box – to make a terrific lunch. Undaunted, our friends wanted to go further up the canal to see if the fish were biting there, and I wanted to take Jenny for a hike…

But Jenny had other ideas. She didn’t get the memo that I had this awesome hike planned for us. Wouldn’t it be fun? No no no no no! It’s GRASS!!!!! And what do I mean that I want her to stay on-leash? This looks like a dog park! And not pulling? Pffffft. She’s off-leash at the dog park and doesn’t understand why I’m not happy. We spent the next thirty minutes like this, in a heated power struggle, until we walked back to camp and Ben and I reassembled the tent and loaded up the car. Our friends came back (still no luck fishing), minus a good lure that got caught in a log. As we drove away from a spectacular 24 hours, they were headed back out to give it one more try.

Camping has always taught me many lessons. As a small child and young teen, I was able to get away from the city and explore nature, pitch a tent, think my own thoughts, and just rest in the quietness of a summer night. This experience was wholly different, because I expected in some ways to be that same young girl with skills to assist those who were camping with me, even though I haven’t used any of those skills since I either had more vision or finished grade school… or both. I also expected Jenny and I – true city dwellers) to simply pick up and act like camping and hiking was no big deal, just another fun activity, not realizing that – like building a fire, catching fish, or cooking over a camp stove – it takes skill and practice to become profficient. Jenny and I both lost out in some big ways this weekend thanks to some expectations that I – ever the perfectionist, dreamer, nutcase – somehow got into my head. But we also walked away with some things, too. I’ve got a game plan for whatever remains of this fall, and next spring, to get out into more woodsy areas. Even if we never go hiking as a guide dog team, simply letting Jenny be a dog on leash and her understanding those limits will transfer into a much less frustrating camping trip the next time around.

By the way, I’ll go camping again. Even with gloves, toques (even ones that go missing), no fish, fires that take forever to light, and warm sunshine right next to nearly arctic shade, I far prefer fall camping to summer. You know why? No mosquitoes!

I’m a bad _____, But It’s Not because I’m Blind!

13 Sunday Sep 2015

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I don’t know what it is, but I run across many people in my daily life who assume that blind people are super dependent on others for every little life task, or can do anything and everything extraordinarily well.  To muddy the waters even more, there are subsets of blind people who have both spoken and unspoken rules of engagement for all blind people, regardless of ability, inclination, and work ethic.  One subset, affectionately dubbed “Super blinks”, act as though ALL blind people should have the skills to cook 4-course dinners, clean floors well enough for a Royal procession, and travel independently everywhere no matter what, asking no one for assistance for anything.  The other, a more defeatist point of view, feeds in to the idea that blind people should be insular and keep to ourselves, acknowledge that life is hard, and just embrace the hardships without doing anything to improve our lot in life.

 

Thankfully, most blind people I know and associate with regularly – both online and in-person – fall somewhere in the middle of these.  Some have terrific skills and are wonderful and encouraging, pushing me and others to at least try and do new things, without judgment or condescension.  Others have been kicked in the teeth by families, prospective employers, and even complete strangers, who are wonderful supports when life just sucks and a blind person feels like no one else “gets it.”

 

But what happens when people we know well, especially families or colleagues, assume certain lack of interest, ability or competence are the case because we cannot see?  A friend was over at my house a couple of weeks ago, and she mentioned a comment that was made to her about the cleanliness of her house.  She’s not the best housekeeper in the world, but it’s honestly not in complete disarray.  She said she wished people would just understand: “I’m a lousy housekeeper because I just don’t give a crap; it has nothing to do with my being blind.”

 

Recently, a news story about a blind mom in the kitchen made the rounds of social media.  It was touted as an inspiring story of a family coming together despite a very sudden sight loss, and a mother who cooks well – and enjoys it – despite not being able to see.  Molly Burke, a well-known Canadian advocate for the blind, responded to this news story by stating that she’s a bad cook because she hates cooking, not because she can’t see.

 

As for entertainment, there are many comments on my choices of leisure activities.  Personally, I don’t like TV shows much.  I have a few favorites, but overall, TV and movies don’t interest me.  I have always preferred to be transported to new places and meet new characters through books.  Many people tell me that my disinterest in such things are because I cannot see them.  I can’t possibly know if there is any truth to this, but based on how I view the world, I would say this is likely untrue.  If I had perfect vision, I doubt I would be fixated on the newest Netflix series, or the next Batman movie, just because much of what is out there just doesn’t hook me on an emotional level; an author at the height of their craft does that for me as well as good cinematography does for a movie buff.

 

So why do we make these comparisons?  Why do people who know us well assume that a disinterest or poor skills are because we cannot see, and not because we simply don’t care about such things?  A sighted person who doesn’t like cooking or doesn’t clean their house well is viewed as a person who just doesn’t like cooking or can’t be bothered to clean.  Why are we viewed as less capable because we have these particular preferences, foibles, or lack of interest?  And unless another blind person is so defeatist in all things, what business is it of mine (or yours, or anyone else’s) if they can’t cook that four-course meal, or require assistance to navigate the airport?

 

I’ve said it before: to my sighted readers, we are only human.  Especially if you love us, our lack of cooking ability, a tolerably untidy house, or our declining an invitation to the movies often has more to do with our own personal preferences than the fact we cannot see; please don’t throw it in our face.  For those who cannot see, and want to make yourselves feel better because you have skills that someone else doesn’t?  STOP IT!  Until you walk in their shoes, you don’t know the life they’ve led.  If they want your assistance, or you think that you can encourage them and they are receptive to advice, offer such with grace and empathy.  And those who just don’t care about anything, who are rude, who think the sighted world owes you because you’ve been dealt the hand of blindness: you’re making life for yourself, for me, and for all of us that much harder the next time we’re out and hope for assistance, a job offer, or that course we’ve dreamt our whole life to take.  I don’t expect everyone to get it right all of the time, but the more we view each other as humans, the more likely we are to be viewed as flesh and blood in return.

Not devoted to Blind Devotion

22 Saturday Aug 2015

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I will be the first to admit that portrayals of blind people in books, movies, or articles tend to get my teeth on edge.  Contrary to what many might think I don’t expect a perfect portrayal of who we are, because we are all different, just like sighted people.  But perhaps even with the best of intentions, some of the worst stereotypes about blind people are perpetuated in these books, movies, or articles – that we are angelic inspirational beings for simply living our lives, that we require caretakers for everything from cooking to laundry to shopping, and if we do actually succeed at something it’s viewed as a miraculous feat tantamount to clearing tall buildings in a single bound.  These ideas are frustrating to those of us who live with blindness – and others’ perceptions of it – every day of our lives.

That having been said, few books, movie portrayals, or articles have concerned me quite as much as this video, largely because it’s been shared around the world as a “sweet tearjerker that shows what true love and “blind devotion” really is.

I’m leaving aside here the main character’s perception of what she can and cannot do as someone losing her vision; the anger and denial process are entirely normal, given a diagnosis like hers.  But the ending of the video infuriated me to no end.  It is viewed as sweet, and beautiful, and yet I find it ugly.  For those of you who cannot see (or just don’t feel like watching the video), this video ends with the husband following his blind wife to work every day without her knowledge.  We’re not talking about driving her to work, waiting in the car and watching her get in to a building before driving away; we are talking about physically following her on her walk to work every morning because (I presume based on the video) he doesn’t think of her as capable enough to do it on her own.  As a blind wife with a sighted husband, to me such behavior borders on stalking, and is not adorable and kind, but such a blatant abuse of trust that my blood is boiling even thinking about it.

Committed relationships (marriage in my case) are beautiful, messy and sweet and heart-breaking and restorative.  Relationships are not perfect, whether or not one partner has a disability.  Even if everyone disagrees on acceptable/unacceptable behaviors in any given relationship, I can think of no one who would disagree that trust is a foundation for any successful relationship.  It is one thing to stumble and fall, or be unintentionally hurtful, but to knowingly use your partner’s blindness or deafness to your own advantage – even while fooling yourself into believing it’s being done for their benefit – can shake a relationship to the core when your disabled partner finds out about it (and trust me, we’re not fools; we WILL find out).  Creating an admittedly fictional video as a feel-good look at what “true devotion” really is makes those of us living with blindness choke on the phony sweetness it’s meant to portray.  I have two questions for those who made, produced, and touted this video as sweet and romantic: How would you feel if your spouse went behind your back and, by their actions, showed the entire world – everyone but you – that they viewed you as incapable?  And what if you found out about it weeks, months, or years after the fact?  It isn’t so adorable and sweet now, is it…

Beauty is NOT just in the eye of the Beholder

10 Friday Jul 2015

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Sometimes people treat blindness like it’s this endless world of darkness.  Of course, in a sense of visual acuity, this might be the case for some, but certainly not all of us who live with vision impairment.  And in the figurative sense, nothing could be further from the truth.  When someone makes such comments about how drab and boring my life is, the conversation goes something like this.

Random person (RP): “Oh, I’m so sorry you can’t see.”

Me: “It’s not so bad.”

RP: “But you can’t see sunsets or pictures or…”

Me: “True, but I–”

RP: “That must be so tragic.”

And it continues in this vain.  Vision is so integral to sighted life – and, as my friend Leona so eloquently put it, such a greedy sense – that the idea of living without it is viewed as more terrifying than premature death.  I would even go so far as to state that we who live without seeing such beautiful things as sunsets, loved ones, photographs and mountaintops – or seeing them imperfectly – are thought of as “broken” people.

 

But just because I can’t see much at all – or others I’ve met in person or through social media can’t see things clearly – doesn’t mean that beautiful things can’t be appreciated visually.  Last week, I found this gorgeous article by Nicole C. Kear, author of the terrific memoir “Now I see You.”  In the article, she briefly describes what it was like to discover there would be a point at which she wouldn’t be able to see anymore, and a recent experience where she accidentally left her Iphone at home and realized she could still visually catch beautiful things around her.  I found it poignant and moving, and have enjoyed seeing her journey of losing her sight – from “carpe diem” to acceptance, sometimes one in spite of the other.  The world can also be captured through photography, and one doesn’t necessarily need great vision to create works of photographic art.  Not long ago, Dudley Hanks was interviewed about his work as a freelance photographer; in another interview, he showed how technology aids him in capturing, touching up, and developing his photos.

 

But what about those of us who’ve never had vision to begin with and have no memory or reference to colour?  Or those who simply don’t process the world visually?  We are by no means left out when it comes to enjoying the beautiful things of life.  Some have a terrific ear for music, others can identify the call of many birds around the world, still others are fantastic chefs and can find the perfect herb or spice to enhance a dish’s flavour or aroma.  I enjoy working with my hands, particularly with beads; the contrast of size and shape (and, yes, colour) is breathtaking to me.  If you’ve never gone into a bead shop, closed your eyes, and just let your fingers run through the hung strands of beads, take the opportunity and enjoy one of life’s simple pleasures.  Do as I did last weekend and take a step outside on a warm summer night (provided it’s safe to do so), close your eyes and enjoy the quiet of an evening (or the sounds of children laughing), the smell of neighborhood barbecues and backyard fire pits, and the feel of the grass between your toes  without all that greedy vision to distract you.

 

Are there times I wish I could fully see my loved ones’ faces, photographs, and nature, or get in my car and just take a scenic drive through the mountains just because it’s my heart’s desire?  Sure, of course there are.  But I think in some ways my lack of vision has allowed me to appreciate some of those little things that I can smell and touch and hear without the greediest of the five senses hijacking my enjoyment.  And just because someone’s vision isn’t perfect, it doesn’t mean it can’t be used to capture some truly beautiful things visually.  The world can be a wonderful place, filled with sights, sounds, smells, textures and flavours; treating sight like it’s the only way to appreciate beauty is itself a way of denying oneself an enhanced appreciation of beautiful things themselves.