Author Archives: blindbeader

The Empowered Series: Alberta Service Dog Community

15 Friday Jul 2016

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Samantha Hjalmarson (Sam), my current feature for The Empowered Series is someone who hasn’t started a business or a nonprofit, but a community that empowers, encourages, and connects others. I had an opportunity to meet her a few months ago. Both of us have service dogs (though for different disabilities); at our meeting, her dog was much much better behaved than mine (due to Jenny’s cat-litter consumption). In response to her disability, Sam spearheaded and almost exclusively runs the Alberta Service Dog Community, but she’s reaching for different heights as well. And who would want to say no to cute puppies?

 

About Sam

 

Sam developed fairly severe PTSD after years of abuse by her stepfather, though she didn’t realize it for many years. After high school, she joined the military as a signals operator, and the PTSD along with Generalized Anxiety Disorder started causing problems with her ability to cope. After her three year basic engagement was up, Sam left the military primarily due to her mental health (though there were other reasons). Things were manageable until a car accident put her in the hospital for a few days, then left her bed-ridden for weeks after and then it all started going really downhill. PTSD and Generalized Anxiety Disorder (GAD) have manifested themselves in agoraphobia; Sam spends most of her energy on managing stress levels, and sometimes even leaving the house is a challenge, making work outside the home impossible. One employer after another fired her; even though Sam worked productively when she was present, she couldn’t consistently be at work every day. Eventually she went to a therapist and was diagnosed with PTSD. It eventually hit the point where she was unable to work at all, had to fight to get onto AISH (“another long story by itself!”) and wound up with a Service Dog to help her out.
Sam’s hobbies include making chain mail, finding meditative benefit from baking and cooking. She’s a massive geek, “like Dungeons and Dragons roleplaying level geek”, video games, fantasy books and TV. She enjoys amateur photography and is a cat person (“Honestly if we could have service cats instead of service dogs I would be all over that.”)

 

About ASDC

 

Alberta Service Dog Community (ASDC) came out of Sam’s desire to be a productive member of society. Being on disability and taking money from the government left her feeling like she was being a drain so she really felt that urge to do something to help other people. While Sam’s search for a service dog went quite smoothly most people don’t have that same experience. She was lucky, extremely lucky, in that not only did Hope Heels give her a service dog but she also met a group of women who have turned out to be an incredible support network and some of the best friends she’s ever had. Hope Heels went on a hiatus (it’s currently up and running again) but those friendships remain.

Disabilities like Sam’s in particular, but others as well, can be isolating and lonely. Sam wanted to create a support network like she had, so she started ASDC to bring members of the community together. People who get service dogs from schools and programs often have that built in but owner trainers don’t. ASDC isn’t specifically FOR owner trainers, anyone is welcome, but Sam thinks they benefit the most from it, removing the isolation and creating a support system for each other. Much of the discussion and support is virtual (through facebook), but occasional training dates, coffee meetups and other activities are coordinated to get the group together.

 

More than a Support Group

 

The ASDC mandate is education and advocacy. People who want to get a service dog are educated on some of the ways they can go about that and about the laws that would protect their rights (there are two in Alberta, the SD Act and the Human Rights Act). The public is also educated about those laws, what service dogs are and the rights of Service Dog Teams.

Advocacy is another big piece of what ASDC does. Not everyone who faces an access challenge with their service dog has the ability to stand up for themselves and their rights so ASDC offers to do that for them. ASDC can provide advice on self-advocacy, or will contact a business or other entity on behalf of someone if they cannot advocate for themselves. “People with disabilities need less obstacles in their lives, not more.”

 

So what does Sam… Do?

 

Sam is currently the jill-of-all-trades at ASDC, receiving phone calls, answering any questions that come to the main page, posting the majority of articles, and stepping in to resolve an occasional conflict. Currently, her biggest role at the moment is representing ASDC on the technical committee to develop a National Standard for Service Dogs in Canada. The hope is that this will be adopted across the country and will make it so much easier for owner trainers to be legally recognized and protected, in addition to making service dog standards and access rights clear and consistent across Canada.

 

What’s Next?

 

In the future, Sam hopes to incorporate ASDC as a charitable foundation, but at this point “it’s a lot of work!” She also hopes to build a website to house resources, educational pieces, a list of trainers who can help people train their own service dogs, a list of schools that service the area. Eventually once the National Standards are completed and implemented, she hopes to do a series of videos explaining how to train for the points required to meet those standards. About the future Web site and access challenges: “Pretty much anything you can imagine someone wanting to know about Service Dogs or what to do with one I want up on that website, including a link for businesses telling them when they are allowed to ask a handler to remove the dog. I think that if a business feels secure in their ability to protect themselves then there will be far fewer access challenges.”

 

Conclusion

 

There is more than one way to contribute to society. For many of us, it’s holding down a job and contributing to the economy. If that’s not possible, it’s important to find another way. Sam has created a lively community of service dog handlers from across the province while simultaneously providing support to those who need a place to turn or a question answered. Thanks, Sam, for being “chatty” (you made this post SO easy to write!)

Special Snowflakes: Do you Want Equality or special Treatment?

08 Friday Jul 2016

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I’ve lived in a body whose eyes don’t function “normally” for over three decades now. My life is generally happy, productive, full of friends and hobbies and new trails to blaze, with unique fringe benefits of having eyes that don’t function quite the same way as anyone else’s. That being said, I will never ever say that being blind is easy: from the minor inconvenience of not being able to visually locate things when I drop them, to the more serious potentially life-altering perceptions of hiring managers, academic professionals, or complete strangers on what my abilities are supposed to be… Sometimes being blind can be really really hard. You can’t have one side of this equation without the other, and to be honest, I wouldn’t really want to.
But I also can’t deny that people with disabilities are treated differently than those without. Encounters on the street focus on how sorry someone is, we occasionally get asked if someone can pray for us, and we are presumed incompetent (if we say “no thank you” to an offer of assistance, it gets offered over and over again). That is a problem… but sometimes we perpetuate our own special treatment while demanding equality.

 

Over the past week, two news stories have blown up my social media accounts for completely different reasons:
1) A resolution from a blindness organization that basically lambastes Apple, a company who arguably has put accessibility at the forefront of their testing and release processes, telling them they haven’t done enough for blind consumers;
2) The fact that the CNE (an annual fair and exhibition in Toronto) is no longer offering free admission to people with disabilities. This decision has proved anecdotally unpopular among the disability community.

Both instances deal with the issues of equality and preferential treatment, and they are mutually exclusive; you can’t have one while demanding the other.

 

Accommodation is Not Special Treatment

 

Not long ago I had someone tell me that bringing my guide dog on a plane was a special privilege. In an unrelated note, I was once told that it would never be an employer’s job to provide assistive technology or other accommodations in the workplace because that would give the person with a disability “special treatment”.

Both of these examples are untrue. Guide and service dogs (provided they are well-behaved) enhance the independence of their handlers and can sometimes mean the difference between traveling independently and confidently… or not leaving the house. If a disabled person requires the assistance of an aid to guide or administer medication or otherwise assist them with daily living tasks, it’s far more preferable than being forced to stay in their homes. And assistive technology can be the difference between being employed and living on assistance… so is it still “preferential treatment” when it levels the playing field? Um… no…

If assistive technology, mobility aids, or other accommodations make it possible for a person with a disability to live, work, study, or access information just like the general public, on what planet is it special treatment? And if people with disabilities are viewed as equals (like the lip service I hear about everyone being equal), then no one should deny us the ability to work, study, or travel using the tools that provide us the autonomy that makes us “equal” to everyone else. If you do deny this, you prove that we are not as equal as everyone else, and should keep your mouth shut and think about your stance on “selective equality.”

 

NFB Resolution: We Want our Cake and to Eat it Too

 

Disclaimer: I do not use Apple products, and it’s my choice to do so. I am not affiliated with the NFB or any other blindness organizations. This to say… I have no horse in this race.

If you get through all the big words, what you need to know is this:

  1. Apple has continuously made huge strides in the accessibility marketplace. It’s one of the first, if not the first, to make built-in accessibility options such as the Voiceover screen reader part of all devices straight out of the box. Traditionally, accessible options had to be purchased separately and loaded on to any device, resulting in extra costs and less independent setup options.
  2. Because of this, Apple has been praised by many in the disability community for making people with disabilities a priority, making products instantly usable right off the shelf.
  3. The NFB resolution appears to be saying that Apple simply hasn’t done enough, because they are not prioritizing accessibility bugs and blind beta testers above others. This is a double-edged sword, however, because Google and Microsoft have their own accessibility issues that were not addressed at all in this resolution…
  4. Many have pointed out that this resolution has basically betrayed Apple for releasing software with bugs, telling them that they haven’t done enough for (exclusively) their blind consumers. Others have stated that accessibility bugs are now prioritized on the same level as other bugs in the software… isn’t that what the NFB claim they wanted in the first place?

Ultimately, I agree with those who state that there’s a HUGE double standard here. I use other software that was not lambasted so publicly, and like it or not, it has bugs too. The blind are not the only disability community in the world, and sighted users had problems with some of Apple’s software rollouts; that’s the nature of having software. If Apple were willfully ignoring the community that praised their accessibility efforts in the first place, that’s one thing; but they are creating software that, like it or not, isn’t perfect… for some blind users, but not all; for some sighted users, not all.

A brief note to those who voted for this resolution and publicly stabbed Apple in the back… it’s not always about you!

 

The CNE: Take me to the Fair!

 

The CNE is a well-known exhibition in Toronto; most major, and even some smaller, cities have their own annual fairs. Many provide discounted rates to guides or aids accompanying people with disabilities (see “accommodations” above?). This year, the CNE has decided to stop providing free admission to people with disabilities, but will continue not to charge for people who are guiding or otherwise assisting them. In the above referenced article, it’s made clear that this new policy might not be popular…

I’m all for it. As a fellow disability activist stated: if I can’t afford to go, I don’t go. I read a comment that people with disabilities are statistically living with higher poverty rates and should be given this “perk” because of it. But what about people without disabilities who don’t always have the money… who’s giving them a break? And what about the disabled person who’s fortunate enough to have disposable income… are they not taking advantage of resources designed to assist those who don’t?

If you can afford it, go to the fair; if you can’t, don’t. Nobody owes us extra perks; we face enough “other” treatment as it is.

 

Conclusion: Special does NOT Mean Equal

 

We have a long way to go before we are viewed as equals to those without disabilities. No one can deny that. We face access refusals because of our service dogs, are presumed incompetent for job duties unless we prove otherwise, and seem to be public sources of inspiration for getting out of bed in the morning. We need to decry true discriminatory practices for what they are, but also to live with the full responsibilities that go along with desiring equality. We should not be charged more to attend a fair because we require a guide or an aide, but we should not be charged less. If a company makes a valiant effort to make their system accessible, we need to praise them for their good work while kindly and gently encouraging them to improve things for everyone (not just us). When it comes right down to it, we’re not special snowflakes, and we will never reach true equality while taking advantage of special treatment.

Book Review: Crashing Through

30 Thursday Jun 2016

Posted by in blindness, Book reviews, Nonfiction

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It’s not uncommon for strangers, friends, and family to ask me the question: if you had the opportunity to see, would you? My friend Meagan has written a concise answer to the question (an opinion that I share). Science has not addressed curing the causes of my blindness, so at this moment, for me the question is moot. But I can’t deny my own sense of curiosity about the uncommon transition from blindness to sight; the reverse has been chronicled extensively, including a woman who allegedly blinded herself.

 

Crashing Through: A true Story of Risk, Adventure, and the Man who Dared to See
By: Robert Kurson

 

Blinded at age three, Mike May defied expectations by breaking world records in downhill speed skiing, joining the CIA, and becoming a successful inventor, entrepreneur, and family man. He had never yearned for vision.
Then, in 1999, a chance encounter brought startling news: a revolutionary stem-cell transplant surgery could restore May’s vision. The procedure was filled with risks, some of them deadly, others beyond May’s wildest dreams. There were countless reasons for May to pass on vision. He could think of only a single reason to go forward. Whatever his decision, he knew it would change his life.
Beautifully written and thrillingly told, Crashing Through is a journey of suspense, daring, romance, and insight into the mysteries of vision and the brain. Robert Kurson gives us a fascinating account of one man’s choice to explore what it means to see – and to truly live.

 

Touching All the bases

 

This book is a combination of autobiography and scientific exploration of vision. Kurson’s look into Mike May’s life – both pre- and post-surgery – is effectively drawn. With a journalist’s precision, he details the chemical reaction that caused Mike’s blindness, the uphill battle his mother fought to admit him into a public school, and Mike’s struggles and successes in his personal and professional life. When Mike begins to become accustomed to his vision, it’s not all sunshine and roses; sometimes it’s incredibly frustrating to go along that journey with May and Kurson. Much of the latter third of the book details the scientific research that helped explain what he could see and why other visual input was so challenging.

 

Mike May: A Blind Man who can See

 

Kurson shies away from characterizing Mike as an angel or hero or otherwise “super blind man.” Sure, he did a lot of exciting and great stuff with his life, but it’s not framed as “despite his blindness, he…”. Mike May’s curiosity of the world in his childhood and early adulthood set the stage for him to embrace the challenge of vision, and the author draws this out with particularly nuanced emphasis. Mike May now has good vision, but it is clear that he cannot process what he is seeing the way a fully sighted person can; he is, effectively, a blind man who can see. It is clear that Mike May was intimately involved in the creation of this book, something that’s quite rare for blind subjects of biographies written by sighted authors.

 

Some Drawbacks

 

I personally found it incredibly disconcerting that during the entirety of the book, Mike May was referred to as “May”. The reason for this is unclear to me, but even in incredibly moving descriptions of discovering new things he could see, or describing some of the challenges he faced, having him referred to as “May” made it almost seem clinical and removed.
Some of the scientific data, while fascinating, could have been included in smaller portions throughout the book, rather than all in one chunk (though I do realize that much of the scientific data Mike May discovered at a particular time in his “vision journey”). I don’t know if there’s any way to make both biography and science lovers happy, but this review is my own.

 

Conclusion

 

If you’ve ever wondered what it’s like to receive vision after nearly a lifetime of blindness, this book chronicles one man’s journey well. It’s not always necessarily a happy story, but it’s an important one. After reading this book, I still hold the same opinion on restoring or improving my vision given the chance, but that opinion is still my own. If surgery is the answer for some, that’s terrific; if not, that’s OK, too. But Robert Kurson and Mike May have given me much food for thought.
4/5 stars.

The Liebster Award

28 Tuesday Jun 2016

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I’ve seen the Liebster Award on several blogs over the past few months, and I actually got nominated this go-round! Thanks, Glen, for giving me the push and encouraging me to have a little fun on the blog. Below, here are my answers to a few questions, and I’ll ask those I nominate a few questions as well.

 

1If you were to win the lottery, what would you buy first?

Confession: I’d pay off my house, and then spend a year traveling the world. 🙂 The order is significant to me because I hate the idea of debt hanging over my head… so a lottery win would immediately go to getting rid of the stress of a mortgage, THEN I could truly relax and have a blast exploring new and interesting places.

 

2What is your favourite dessert?

I have to pick just one? I love anything that puts fruit and chocolate together; if I can’t have that, I’ll take ’em separately. No custards or whipped cream, though…

 

3If you could have 3 celebrities over for a dinner party, who would you invite and why?

I’d want a cool celebrity jam session with Elton John, Garth Brooks and Adele (don’t ask, it would work!) Elton and Adele would probably call my upright piano “charming”, right? This is hypothetical, right?

 

4Who are your favourite bands/artists?

Pink Martini, Over the Rhine, Sara Groves and Flyleaf… for a wide variety of different reasons. It depends on the headspace I’m in at the moment.

5What are your favourite TV shows?

The original Law and Order (the spinoffs never did it for me), Corner Gas, and Air Farce. A piece of me feels like I’m 50 years old, lamenting the “good old days” of TV…

 

6If you could go back in time and give your teenage self one piece of advice, what would it be?

Nothing is permanent unless you make it so. What you decide today CAN effect your future, but you can always make other choices… so use your head and your heart, jointly, to forge your own path.

7Which is your favourite social media site?

I use Facebook and Twitter for different reasons entirely. I’d have to say I think I prefer Twitter, if I had to choose…

 

8Do you have any favourite jokes?

Not really. People who know me well will tell you… I cannot tell a joke, at all… My humor tends to be rather dry, occasionally witty or punny…

 

9Do you enjoy playing or watching any sports?

I used to play goalball, and this year I’ve seriously taken up running. As for watching sports, I enjoy hockey, though I’m not as into the game as many I know.

 

10Who would play you in a film of your life?

My life is waaaaay too boring to be made into a movie! And you’d think, being married to a movie buff, that I’d have tons of actresses to list off in response to this question. Nope! Sorry! 🙂

 

11What would be your dream job?

I’ve had a couple of jobs that might fit as  my “dream job” over the years. But while I’m on the job hunt, I think of this often. Where do I go from here?

I’d want a job where my role is important, that it makes a difference in workplace culture and dynamics. I’d like to build on my pre-existing skills and learn new ones along the way. It would be great if it had a combination of people-time and alone-time, as I find the balance works well for me. The actual job title and duties are still up for debate, but so long as they’re legal and ethical and don’t bore me to death, any job can be a dream job…

 

I Nominate…

I’ve got a few questions for some awesome bloggers. I have linked to some before, and some have linked to me… Let’s get to know them better as well!

I am asking Meagan at “Where’s your Dog?“, Beth at “Safe and Sound Blog” and Steph of “Bold Blind Beauty”:

  1. If you could go anywhere in the world for a month, where would you go?
  2. What’s the most unusual food you’ve ever eaten? Did you like it?
  3. Did you have any childhood heroes? If so, who were they?
  4. Do you still have a favoured childhood item such as a toy or blanket? Where do you keep it? Any stories about it?
  5. Do you have a favourite time of year or holiday? What is it and why?
  6. What is a quirk of yours that some have found endearing?
  7. What’s your “guilty pleasure”?
  8. What do you do on a gloomy, rainy day?
  9. What relaxes you when you’re stressed?
  10. What would a party at your house look like?

Looking forward to seeing some fun answers! 🙂

The Empowered Series: Electric Marshmallow Productions

15 Wednesday Jun 2016

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Over the past few months, I have followed Dominick Evans on Twitter. He’s created some thought-provoking conversations on the role of disabled people in media, representation of disabled actors in film and on TV, and the idea that Hollywood produces films that perpetuate the idea that it’s better to be dead than disabled.

 

About Dominick

 

Dominick lives in the metro New York City area with his partner in life and business, Ashtyn. He has Spinal Muscular atrophy, a progressive neurological disability, and lives with OCD. To navigate the world, he uses a wheelchair which currently is in need of repair. OCD presents its own challenges with concentration, but that makes working from home an ideal setup. In 2014, he graduated from Wright State University with a BFA in Motion Picture Production, and has a strong desire to direct. Dominick is Polish-American, left-handed, and has “actor” and “singer” listed on his resume.

 

About Electric Marshmallow Productions

 

Electric Marshmallow Productions is a writing and editing business with a branch in film and video production. Dominick and Ashtyn both write and edit contact for large corporations and small businesses alike, with Ashtyn doing much of the writing and Dominick primarily editing content. Disability activism is both a personal and a professional interest, as is activism in the LGBT community.

 

What’s Going On and What’s Next?

 

As part of Dominick’s film work, he moderates a frequent Twitter chat called #FilmDis which addresses media portrayals, representation and hiring practices of people with disabilities. Most recently, he has helped to start a conversation about the recent movie based on the book “Me before You”, which he maintains portrays the idea that it’s better to be dead than disabled. In the future, he hopes Electric Marshmallow Productions will operate specifically as a film and television company that changes perception of people with disabilities in mass media and ultimately in the wider world.

An Open Letter to Hiring Managers: Want to make $$$? Hire Inclusively

09 Thursday Jun 2016

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Earlier this week, I found a story about a home improvement retailer who hired a service dog user with a brain injury. This is terrific! This is corporate responsibility. This is true representation of the broader community which this retailer serves. This is hiring people with unique skills and talents to fill a role that a company sees as valuable. I took to Facebook and thanked whoever hired this man for giving him a position that he clearly desired, wishing more hiring managers and companies did the same.

 

I’m on the job hunt, too, and it got me to thinking. Did this company hire this man – will a company hire me? – only because it is the law to do so? Will they do so because it is the socially conscious “in thing” to do so? Or will they hire people with disabilities because they realize that we’re a huge untapped market for them? Disability not only touches those living with blindness, who are deaf, who use wheelchairs, and/or who have brain injuries (sometimes in combination)… but those with invisible disabilities as well. This doesn’t even address our friends, families, and others who care about us. A Canadian organization recently launched the We Belong App. The app allows consumers to search by location for companies and organizations that hire inclusively (primarily people with developmental disabilities), giving them the opportunity to show financially that it pays to do so.

 

Meaningful employment is something that’s very important to me. I want to be hired at a position with a company that views me as an asset, not a liability. Unfortunately, the latter appears to be the prevailing thinking among people who’ve met me for interviews. I don’t make constant eye contact, I imply that it’s important to use words to communicate… and yet I have years of experience behind me, so that should count for something. Do I want a job? You bet your last dollar. But I want a job with a company or organization that views me as the asset that I am, with unique insights, skills, and talents to bring to the table. Things may have to be done differently, but change is a part of life; many accommodations for people with disabilities end up benefiting entire workplaces, and it’s not often realized until after the disabled employee moves on to other opportunities (personal or professional).

 

So for those who hire people with any disability out of pity or patronism, thanks, but no thanks. It makes everybody miserable and you honestly shouldn’t bother. For those who don’t hire us because of your preconceived notions of our capabilities – not because you truly had more qualified applicants – please know that you’ve broken human rights legislation. The law is only one piece in a mosaic that fits together to include people with disabilities in society, in the classroom, in the workplace. It takes inclusive thinkers – who are unfortunately not frequently in HR – to understand that we’re more than the eyes or ears or hands or legs or brain that doesn’t work as expected. If the law is the only reason you begrudgingly hire me or anyone with a disability, congratulations, you’re a rule-follower, move along now. Ditto about everyone being miserable. But if you want to be progressive, inclusive, and innovative like you claim you are, hire people with unique skills, talents and insights who just happen to be disabled. Your business will benefit as much if not more than the employee you hire, because we do have friends and families and others who care about us… and they reward truly inclusive and empowering workplaces with their positive words to their friends and families and coworkers… and their consumer dollars. The bottom dollar is a motivator for many; I’d like to use some of mine to support employers who don’t discriminate. but that can only happen once pretty words on a page start becoming action, once HR managers, CEOs, and office managers view people with disabilities as unique resources and assets to business and commerce.

 

Oh, and if you are one of those progressive, inclusive, innovative HR managers, CEOs, or office managers, drop me a line; I’d be happy to meet you.

“Do you Want Fries with That?”

02 Thursday Jun 2016

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A few days ago this article blew up my social media accounts: a blind man is suing McDonald’s for providing exclusively drive-through service during certain hours late at night, thus alienating blind customers. VERY strong opinions – often conflicting – have been voiced by many people I respect. There are two definite schools of thought, and I haven’t seen much middle ground:

(1) the plaintiff is acting entitled and wants special treatment for blind people, which makes all of us look bad;

(2) If a paying customer wants chicken McNuggets at 2:00AM, a driver’s license shouldn’t be required.

After considering the angles myself (admittedly not the legal implications), I’ve got a few brilliant thoughts to add to the pile… but let’s leave the “why would you want to eat at McDonald’s in the first place?” comment out of this, okay?

 

First: drive-throughs are for cars, period, the end. If you’re a particularly height-challenged pedestrian walking through a drive-through and someone pulls up in a big tall truck, the likelihood is that the driver can’t see you and you’ll end up being road pizza. Add to that the small size of drive-through lanes, some of which have curves that make it impossible for drivers to see pedestrians anyway, and being a pedestrian in a drive-through lane is taking your life into your hands. That’s why they’re called drive-through windows, OK? Good?

 

It is completely understandable that McDonald’s as a business wishes to serve late-night customers without having to keep open a storefront where people enter who may be intoxicated and/or disruptive and/or wish to find a warm dry place to sleep. So they get the benefits of serving drive-through customers without having to watch a storefront. I would assume that intoxicated pedestrians have attempted to walk through the drive-through lanes and order food, and I’m sure that’s not always pleasant. The customers who are driving (in theory) are sober and just want their food and everyone is happy.

 

But this is where in my opinion it gets sticky. Like it or not, not everyone drives or has ready access to a vehicle – and it isn’t always because of blindness. This is where I think the plaintiff is short-sighted (no pun intended). Over the years I’ve met people who have epilepsy, are terrified of driving at night, or don’t wish to take on the financial responsibility of keeping a car in good working order. While the article indicated employees mocked him on several occasions (unprofessional?), I’m sure they’ve had many intoxicated people try and take their lives in their hands by walking through the drive-through. But relegating this lawsuit to discrimination against exclusively blind people – instead of all those who can’t/don’t drive – has many blind people thinking he’s wanting special treatment.

 

But is he really and truly wrong? I don’t think so. McDonald’s and other fast food restaurants with drive-through-only hours are providing an additional perk to those who can drive just because they can drive. And I don’t think that’s fair either. Driving is a huge societal advantage; you can get in your car and go wherever you want to go. You don’t have to rely on someone else’s schedule to leave a dreaded Thanksgiving dinner with your in-laws, you can take a spontaneous road trip just because you want to, and you don’t have to worry that you’ll get stuck in the rain because the next car (read: bus) won’t show up for 45 minutes. And, yes, you can get McDonald’s fries at 2:00 AM because you have a car and driving is the only way you’ll get served.

 

I don’t know how this lawsuit will pan out. But maybe if everyone meets in the middle, something will change and pedestrians will get served at 2:00 AM because we get hungry at that hour and we’re paying customers too. Maybe this happens by opening a designated walk-up window out of the way of those cars that can run us over. Maybe the storefront should be open the same hours as the drive-through windows. Maybe fast-food restaurants can take advantage of food-delivery services that have become extremely popular in the past few years (I’ve seen this, by the way). However it happens, it’s 11:00PM as I finish typing this. I live four blocks from a McDonalds… I wonder if they’re open? I think I’ll walk over there, because I really want some fries.

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.