Monthly Archives: May 2016

Book Review: Not if I See you First

31 Tuesday May 2016

Posted by in Book reviews, Fiction

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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.

Girl on the Run: you do WHAT with Your Guide Dog?

20 Friday May 2016

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Until this past year, I didn’t consider myself a runner. Before I played goalball, I didn’t consider myself an athlete, either. Growing up, I firmly believe it had little or nothing to do with my blindness, but my interests went in different directions (music and books and learning languages, mostly). But in the way of most schools everywhere, all students – including this bookish, creative blind student were made to do things they aren’t interested in, or even want to do… something I whined about at the time, but am grateful for today. I try not to think about this much, as is the way of most high school memories… but I’m sharing it with you because… well, because I want to.

Grade 8, PE class. The time of year that all the students go for a 3 mile run (the exact distance I’m not quite sure of; the fact I was completely unprepared for it, I have no doubt). I was an out-of-shape thirteen-year-old who hadn’t done much physical activity since walking away from competitive trampoline more than a year earlier. I found myself walking more than running, but something in my brain clicked about 200 yards before the end of the run. My legs just went and took over my body and my brain, and I was running flat out. I know people were calling my name, I know at one point they were screaming at me to stop, but my feet and legs and body kept moving, and I just couldn’t stop… until I ran full-speed into a telephone pole.

I gave up running after that. To this day I don’t know if it was the fact that my interests truly did go in different directions, or the thought that I was too embarrassed to risk getting another shiner on my forehead. I was a blind kid with little true desire for physical activity, and – even though I was encouraged to pursue track and field – I resented the idea that I would need a sighted guide runner whose pace I would likely slow down, and it all just sounded so unfair. Besides, I had other things that took up most of my time, so I didn’t really miss it much.

I often think about that path not taken these days, since taking up running again. I’ve done a fundraising run in support of the local blind sports organization for the past five or six years, but beyond that, until this past couple years, it hasn’t been a burning need for me. Maybe if I had the confidence to run, or easier access to guide runners locally, or just more time to kill, maybe I would have done this sooner. But I can’t think that way, really, because it’s time to look forward, not back. I’m lacing up my shoes, harnessing up my guide dog, and going for a run.

Whoa whoa whoa! I am doing what?

I’ve written before about running with my guide, but since it’s a relatively unusual activity to do with one’s guide dog, and I get asked a zillion questions about why I would do this at all, here’s the route I’ve taken to this point, and where I want to go.

It all started a couple years ago after the fundraising run; I had made a great connection with my guide runner, and she and I agreed to go running together. This would involve going home from work, leaving my guide at home, taking my cane, catching the bus, going for a run, catching the bus home… and to me, that was a lot of planning for a quick run, as much as I loved running with my friend. Add to this the fact that I have a guide dog who genuinely likes to go fast (and occasionally we have “arguments” about such things), and I figured I could at least try running with her.

A friend makes sports-style harnesses and I asked her to make one for me. It has a lot of room for the dog to move and acts like a traditional harness in all other ways. The pull in the handle took some getting used to, but once I understood the feeling of the pull in the harness, we were ready to go! I started small (like, around the block small); if Jenny hated it, I didn’t want to make her run with me. She took to it so quickly that over just a few weeks, then months, we increased our speed, distance and complexity of routes. Our winter was short, so it didn’t take long for us to really get moving this spring. This past month alone, we have done our longest run ever (more than 7 km), had our fastest ever run longer than 5 km, and did our first ever big group run in support of the Fort mcMurray evacuees. That last wasn’t a flawless experience, but it taught me how to handle it, and gave me hope for other big group running events later on in the spring and summer, and even beyond. My goal is to run an organized 10K by the end of the season; we’re well on our way!

I’ve made some mistakes along the way – misjudging if my guide wanted water (the answer is usually “no”) or underestimating her willingness to go at fast speeds – but when we have this matching jogging-pace speed and are completely in sync, there’s no feeling like it. Many people ask me if I’ve ever been hurt; the answer is yes, but it’s got nothing to do with Jenny and everything to do with my thinking I know more than she does. If I listen to her quick, decisive, flawless guiding moves, I know I’m in good paws. More than once I let Jenny set the route (or, at the very least, don’t direct her as much); our neighborhood is a veritable labyrinth of angled sidewalks, roads that intersect and curve around back to each other – a residential runner’s paradise. I can focus on my feet, on my music (90s music is the best to run to!), on the feeling of wind in my face and the smell of pine sap in the air. I don’t have to think too much about where I’m going, what street I’ve crossed, if I’m lost or not, I can just run. I know my guide will run me home when she needs a drink of water.

The Empowered Series: Abigail Style

15 Sunday May 2016

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One of the most interesting things about being a blogger is the ability to reach and be reached by a ton of different people. As part of the Empowered series, meet Stephanae McCoy, owner/operator of Abigail Style, who wishes to use fun, everyday products to show, visually, that blindness does not mean a lack of confidence and/or fashion sense.

 

About Stephanae

Stephanae (Steph) McCoy is a retired 55 year old mother to three grown sons and a ridiculously cute 3 year old grandson whom she’s “just ga-ga over”. According to the Meyers Briggs Personality Assessment she’s a true INTJ who is an introverted, analytical, somewhat judgmental and intensely focused person who follows the rules. If you ask her sons, she says they would probably say she’s a buzz-kill but with a great sense of humor, who loves playing practical jokes on people she’s close to and seeking change especially when someone is being treated unjustly.
Steph’s vision impairment was diagnosed in 2005 after regular vision checkups, which meant that some conditions such as glaucoma were caught early but needed operation. Seven years ago she had “The talk” with a doctor at the Cleveland Clinic, who advised her that even though she did all the “right things”, due to surgeries and extreme myopia, her vision loss was irreparable.

About Abigail Style

Abigail Style (named after the white cane icon Abigail) is an online apparel and novelties boutique whose message is designed to “Improve humanity by changing the way blindness is perceived. All Abigail Style products carry her signature stylish image and fun slogans. Currently the products offered are women’s, men’s and children’s t-shirts, women’s tanks, coffee mugs, tote bags and iPhone 6/6s cases. Artist Jennifer Barrile designed the logo, and Steph created the images to be printed on the products.
Abigail Style has been open for business for a very short time, but in the future the hope is to hire a marketing director, social media strategist, and a stylist, and increase the product line to include posters, decorative pillows, and baseball caps.

Why Abigail, and What got Her Started?

There are so many stylish women who are blind or have sight loss that Steph felt it was time for a fashionable icon to represent them. Abigail is a beautiful image that evokes power, movement, independence, chicness, confidence and success, a woman on the move stepping forward with purpose.
After Abigail was created Steph reached out to her online community to request their input on a name for her. Abigail was chosen as a play on the word “abilities,” and Nightingale (the small bird that’s known for its beautiful song) – since it looks like she is wearing a divine feather dress.”

What’s Next?

Steph wants to see how far she can take Abigail as she believes the sky’s the limit. Blindness or sight loss has always been one of those taboo topics and it’s time to change this. Is it challenging for people who have previously seen to learn how to adapt to sight loss? Yes it is, but a meaningful life shouldn’t be dependent upon having eye sight and she hopes to see the negative mindset on blindness and sight loss diminish.
Once, an eye doctor told Steph that it would be a tragedy for her to learn how to use the white cane when in fact she believes the real tragedy is the shame many people feel when losing their eyesight. Having a visual image that evokes beauty, confidence and purpose is a way to change the stigma surrounding blindness and/or vision loss.

Conclusion

I want to thank Stephanae for being so open with me, and for taking the time to answer my nosy questions!
If you know someone with a disability who runs their own organization or business, please leave me a comment or find me on Twitter; I would love to feature them here. The word “inspiration” is so often used to describe us, but empowerment is what we do for ourselves.

MY job is better than Yours!

06 Friday May 2016

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You’d think – after more than 30 years on this planet and having had a ton of really really stupid things said to me – that I would learn not to stick my foot in my mouth. Not so much.

Last week, I posted on Twitter about a topic that is close to home – employment. I had recently seen a blindness organization posting work-from-home opportunities, as well as openings in their industrial shop. I asked why this is, that it feels like we’re being “hidden away” just to be employed. Others pointed out to me about transportation logistics and the desire of some to work from home. It was never my intent to disparage such things, but it could have come across that way… Because twitter’s strength and its weakness is its brevity, I figured I could explain myself and my viewpoint here on this blog… but I want your opinions, too!

Employment is Essential

I’ve written about this several times on this blog, whether it’s describing my own personal employment journey or the perception of blind people (and those with other disabilities) as inspirational or incapable. Many of us have education, transferable skills, and a strong desire to work, yet get turned down for job after job after job. It is demoralizing and demeaning – not to mention discriminatory – to hear that even though you are more than qualified for a job they have chosen another applicant (usually dancing around the word “disability”). This is where grit and determination come in, sometimes (though not always) aided by organizations that either assist in the job search for applicants with disabilities or provide work opportunities themselves. For those whose disability makes it possible, employment brings a sense of accomplishment, contribution and dignity. So why can’t I just be happy that people with disabilities are being employed… by someone?

The Home Office

The modern workplace is ever-changing. Some companies allow employees to telecommute (work from home) on either a permanent or situational basis, providing employee flexibility, lower office overhead, or the ability of employees to care for loved ones. So it comes as no surprise that some disability organizations subcontract workers for these jobs. It’s a perfect solution for those who prefer to work from home, or who have transportation or logistical challenges to come in to an office every day, or whose disability makes telecommuting the difference between being employed or relying on government assistance. And with the disability organization providing or advising on accessible technology for a disabled client/employee, it’s a win-win… right?

Separate Work Spaces

Some organizations provide workplaces (sometimes called sheltered workshops) where people with disabilities can be employed (primarily alongside other workers with disabilities), learn new skills, and be promoted (something that may be more of a challenge in the public sector). It can provide a sense of accomplishment, comraderie,  and usable employment skills, not to mention – in theory – the ability to earn an income. But some workplaces (Goodwill comes to mind) have paid their disabled workforce sub-minimum wages. This is not the case in all facilities, but it happens enough to be a real concern. This begs the question: is separate really and truly equal?

One Size Does NOT Fit All

It was rightly pointed out to me that it appeared my initial concerns about being “hidden away” by working at home or in blindness organizations came across as unyielding. It was never my intent. If someone wishes or needs to work from home and/or in a disability-centered organization, it should be their choice to do so. But it is by no means the only way for people with disabilities to obtain meaningful employment. Many disability organizations – particularly those who assist in the job search process – have clients who are happy working, no matter the pay, the job duties, or the employer; others have very specific goals, educational background, and salary expectations. Even if it’s not easy, organizations that assist people with disabilities on the job hunt need to be very aware that both types of people exist, and many fall somewhere in between. It is essential that all who wish to use these services feel welcome, like they are being heard, and not like they’re being shoved into a little box that over- or under-estimates their qualifications, setting them up for failure.

Conclusion

I’ve heard horror stories about highly-educated people with disabilities being referred to a job as a Walmart greeter. I’ve experienced first-hand the frustration of asking for advocacy assistance from disability organizations, only to be told to just take whatever job came along because they didn’t know what to do with me. I am not thumbing my nose up at anyone who works from home or in a sheltered workshop if it is their choice to do so and they are happy, healthy, and believe their work has value even in small ways. But it is not what I want for myself, simply because I like to separate my work from my home life, and I – and anyone with a disability – should be given the opportunity to be “out there” in public if that’s our choice.

So if you work from home and like it? I’m thrilled for you! If you work with other people with disabilities and love what you do? Rock on! If you work in the public sector and have found acceptance there? Keep it up!

For those of you who work in the disability field – teachers, employment counselors, advocates, social workers, even family members – really listen to the disabled children or adults with and for whom you’re affiliated. They may have hopes and dreams and fears that you haven’t considered, and they need you to listen to them and act accordingly. We live in our bodies, we know our minds; we know our capabilities. We likely know the employment situation that is best for us, and should have the freedom to reach for the stars – whatever constellation strikes our fancy.