Category Archives: blindness

Performing in Blindface

30 Friday Sep 2016

Posted by in blindness

≈ 1 Comment

“I can hope for the future and live in the present.”
If you are unfamiliar with the #HowEyeSeeIt campaign by Foundation Fighting Blindness, this blog post is a good way to get yourself familiar both with the campaign itself and the emotional backlash that followed. I have very mixed feelings regarding the campaign, but do believe that it’s bad PR for an organization to block, ignore, or otherwise censor respectfully provided negative or neutral feedback.
That being said, this blog post not only laments the blindfold simulation itself, but offers an alternative solution.
Thanks for providing some much-needed clarity to what has proven to be an emotional topic for many over the past several weeks.

adventuresinlowvision's avatarAdventures in Low Vision

Photo shows a pink fuzzy I'm ask on a white background A fundraising drive related to the blind community went viral. The organization finances great medical research, yet the campaign premise doesn’t sit well with me. I’m split, so I’m reflecting on #HowEyeSeeIt from the Foundation Fighting Blindness (FFB). Yep, I’m diving into the deep end.

FFB’s digital awareness campaign encourages people with vision loss to ask others to wear a blindfold and do a task together. They record it for social media and label it #HowEyeSeeIt. Amateur, professional, and nationally broadcasted stories were created. Some people pushed back and expressed opposition and rejection of the blindfold usage. The National Federation of the Blind released a letter written by President Riccobono admonishing it. People in the blind community reported censored comments or blocks on FFB’s social media accounts. FFB, a private organization, has the right to delete/block communications on their accounts, but has publicly stated it is not blocking or banning…

View original post 794 more words

Growing up and the “Good Book”: Reflections on a Year at Bible School

23 Friday Sep 2016

Posted by in blindness, Uncategorized

≈ Leave a comment

Tags

, ,

Ten years ago – has it really been that long? – I found myself in a remarkably similar circumstance to the one I am currently facing. Out of work, in a place of personal, spiritual and professional transformation, I decided to take the plunge and spend a year at a small unaccredited Bible college. My choice was made because of a complicated combination of financial and theological crossroads, and it’s a decision that I have never regretted.

 

So why am I writing this now, a decade later? A combination of reasons. One of the benefits of being out of work is the ability to read books by a wide variety of people – those who have embraced the Christian faith wholeheartedly, those who have abandoned it due to pain or abuse, and those who struggle to believe. It’s beautiful and tragic and messy, seeing those who share my faith embrace some fellow earth-dwellers and reject others, those who no longer share my faith who cry and wrestle with those who do and whom they love, and those who never shared my faith – or those whose departure from it was particularly traumatic – who become furious at anyone who professes any form of belief in the divine. Such literacy and conversation has rounded out my worldview in ways I never anticipated, and it started at that small Bible college ten years ago. Another reason I decided to write about it is that a friend and classmate wrote of his experience in an articulate, moving reflection (though one that’s more theological than I’m going to get into here).

 

I remember the day I dropped off my application form. The journey to that place is too long to get into here, but I remember thinking that it was foolish for me to be out of work and wanting to spend money to study the Bible… but I had to do it for reasons that I still can’t quite explain. I remember calling the school, being so lost in a residential area, expecting more foot traffic than I got, and having one of the instructors come out and meet me. I was so embarrassed, but I put in my application (and, not 3 hours later, received a part-time job offer that would work around my class schedule). After being accepted, I wondered how my classmates and instructors would accept me as a blind student – I worried for nothing.

 

Our courses were a combination of Bible study, interpretation, and practical Christian living. We read the whole Bible during the course of that year – when I discovered all the passages about justice for the oppressed that I had never encountered in my previous church experiences. We discussed living on earth and a home in heaven and how to emphasize both and neglect neither. We volunteered in organizations that challenged us, that showed us poverty or illness or disability. Along with classes and short-term missions trips and volunteering and working, I found my faith changing from a loud, boisterous show of enthusiasm to something quieter, something stronger, something harder to describe. Along with that spiritual struggle – because that’s what it was – came the most complete exhaustion I have ever felt in my life. I was in many ways happier and busier than I ever had been, but my schedule was so hectic that I would go to my little basement apartment after a day of classes and/or volunteering and/or working, say hi to my roommate, and fall exhausted into bed… only to do it all over again the next day.

 

But it wasn’t all hard work; in many ways it was a ton of fun. My classmates took me in as one of their own – pushing me beyond my comfort zone, asking questions, all but stapling my pants to the piano bench during chapel because I was the only student who was even remotely willing to play the piano publicly. I fell in love with the piano again during that year, frequently taking time alone in the chapel to decompress and play that out-of-tune upright that belonged in a 1900s saloon. I found out later that the entire school could hear me, and more than once someone would slip quietly into the chapel and hear me sing hymns or write chord progressions or just make up little ditties where my fingers would dance across the keys.

 

I not only learned a lot from instructors, but many of my classmates taught me about openness and generosity. Within two weeks of starting classes, I moved from an apartment into a basement suite, and no fewer than half my classmates helped move my stuff (in the rain) and helped clean up my old apartment. Over the year, many cried with me, some sang with me, even more laughed with me, others encouraged me to jump off a roof into a snowbank (my other option was to climb down the ladder after 20 minutes of panicking). I hated to feel like I needed help with anything, ever, but both classmates and staff patiently helped me realize that everyone needs help sometimes, and that’s OK.

 

Instructors were accommodating in most ways. Even the one who seemed to never get me assignments or tests on time – due to his reluctance to use email – let me explore with my hands a model of the Old Testament Tabernacle. Another instructor shared of his faith journey with such vulnerability that I related to him so completely. Another listened to me obsess and worry when my feelings for this guy who was “just a friend” had morphed into something I didn’t even recognize or want to acknowledge as romantic intentions. Still another gave me a ride to class once a week, allowing me to sleep in an extra thirty minutes; that thirty minutes was so small in the grand scheme of space and time, but it was inestimable in its impact. Looking back on it, I learned more about self-care at Bible college than I ever learned anywhere else. It’s a term that doesn’t appear in the Bible, though the concept certainly does.

 

2006 – looking back on it – was truly a pivotal year in my life. I moved in with my first roommate (the first time I ever shared space with anyone as a contemporary), I met the man who would become my husband, I grew (as many people that age do) in maturity and life experience, and my faith morphed from the experiential into something more systematic and sustainable. It was the year I learned to carve out my own identity, discovered it was OK to not be OK all the time, and that sometimes quiet reflection makes you stronger than just faking it. Maybe I would’ve learned those lessons in other ways had I not attended that small Bible school, but I didn’t learn them elsewhere, and I wouldn’t have it any other way.

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

26 Friday Aug 2016

Posted by in blindness

≈ 1 Comment

Tags

, , , , , , , ,

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

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

A Burger with a Side of Discrimination, Please

05 Friday Aug 2016

Posted by in blindness

≈ 7 Comments

Tags

, , , , , , ,

Not long ago, I was visiting British Columbia, a province with a very well-publicized and shiny new Service Dogs Act. My trip was generally a positive one, until I attempted to enter one particular bar/restaurant that I had previously frequented. I’m not unfamiliar with being asked for ID to verify my age in such places, and even my (thankfully relatively) few access challenges with my guide dog have primarily been handled discretely and/or quickly. What I did not expect was to be demanded, loudly and publicly, for my guide dog’s paperwork… from across the bar. My dog was doing nothing inappropriate, was guiding me into the restaurant, her nails slightly struggling to gain purchase on the slippery floor. So… I was demanded – loudly and publicly – for paperwork that no one else in the restaurant was required to produce. Long story short, I realized that I didn’t have current ID with me (I had mistakenly packed an expired school-issued ID card), and I was asked to leave. When I told the employee she should consider discretion if she had to request paperwork from paying patrons, she acted so surprised that such a thing would be requested of her.
Without getting into the nitty-gritties, I contacted the BC government on this issue. They ended up responding to my complaint with an inaccessible PDF (one that was scanned as a picture, so no readable text for a screen reader), which said – basically – that since I didn’t have a piece of plastic (whether issued by the government or a guide/service dog program), a business was within their rights to refuse service. They did not address the humiliating and embarrassing experience of being demanded publicly for such information and then publicly being told to leave.
Where is the outrage outside of the service dog and/or blind community? Would anyone else be expected to accept this treatment?
Last week, a news story made the rounds about a teenager with a disability who was purposefully excluded from a relative’s wedding because of her disability. The support on sites like Reddit came in fast and furious, which is awesome… but it got me to thinking: Where is the support from the public when people with disabilities are turned down for jobs (whether stated or implied) because of their disability, forced to alter their academic pursuits or undergo additional testing, find it easier to obtain resources to assist in their death than aids to live life, are killed for simply being disabled?

There is open discrimination in the world – being told you won’t get a job because of your disability (yes, this happens). There is invisible discrimination where it’s implied by the subtext of a conversation or interaction that your presence, request, or concern is not wanted or valid (yes, this happens, too). There is violence against the disabled as can be evidenced by interactions with police, the murder in Japan last week, or by cultures who view disability as a curse on a family. While disability can have its own limitations (at this point, I won’t be driving a car anytime soon); but I believe that it’s not disability that holds us back as much as perceptions and demands of others. To some, not eating at that particular restaurant may be a “little thing”, and I suppose it’s true because we had other options. But what if we didn’t? Maybe that young girl loved her aunt and really wanted to be at her wedding for that special day, and she got slapped in the face because of a perception of what she could and couldn’t do. Judging by the amount of tense family gatherings I’ve witnessed and heard of, discrimination – even by a family member – is a pretty big deal. And how big a deal is open or invisible discrimination in the job hunt when it directly impacts one’s ability to make a living and contribute to a local, national or even global economy? And if we can’t access facilities like everyone else, attend family functions, obtain employment if we have the desired qualifications and skills, do we reach a tragic end because we just don’t belong? To quote a friend of mine, I’ve been gifted a double portion of stubborn. Maybe this will help me, maybe it will help others. It’s never “just about a restaurant” when you’re made to feel scrutinized for simply walking or rolling through the door. It’s never “just one day” when you get told that you, specifically, are not welcome at a celebration, but your whole family can come along now. It’s never “just one job” when you get told there’s no way you can do job tasks you’ve honed over years of practice and hard-won experience.

And it’s never “just one life” when you have to fight not only others’ perceptions, bureaucratic red tape, medical concerns, and discrimination… but yourself underneath it all. Sometimes being who we are is a radical act of defiance.

Relax! It’s Independence!

22 Friday Jul 2016

Posted by in blindness

≈ 3 Comments

Tags

, , , , , , , ,

All the way through high school, I traveled with a white cane. I would move the cane in an arc on the floor no wider than shoulder width (as I was taught), sometimes even narrower than that. You’d think I’d brought and aimed a weapon or set someone’s hair on fire, the reaction was so intense. Students would jump over the cane, slam themselves and their buddies into lockers to get out of my way. My friends thought it was hilarious, but it was probably the first time I seriously felt that people were afraid of me for something that, to me, meant independence and freedom. Since then, I’ve been made aware of huge crowds of people parting the waters because a blind woman with a cane has started walking through a mall during the holidays or a concert venue at intermission. Sure, it makes my life easier, having a clean path, but it’s always made me feel somewhat “other” when it’s announced or otherwise apparent that a path is being cleared for me so that I don’t hit anyone.

Fast forward several years, and Jenny, a wonderful, communicative guide dog wiggled her way into my life. Her presence means that I can travel more fluidly than I ever could with the cane, can even run independently (something I never thought possible). Not everyone likes dogs – some are afraid of being bitten or licked or approached by a dog – and I understand that. If my dog gets invasive, obnoxious, causes a direct disturbance not related to her being a dog doing her job and people being fascinated by her, that’s one thing (all service dog handlers have had moments where their dog’s behaviour has made them want to melt into the floor). But in the span of a week this past spring, I experienced two instances where the mere presence of my dog has caused people to publicly overreact in ways they probably hadn’t intended.
I was sitting on a bus, minding my own business, when the doors opened and a man got on. He turned to walk to an empty seat, saw my dog, then went back to the bus driver and said that he would get on at the back of the bus so he didn’t have to “go past that dog”. I was so shocked I couldn’t say anything. If he hadn’t seen my dog, he’d never have known she was there on the bus. And before anyone raises the “allergies” argument… I’ve worked with people who have allergies, have friends who have allergies, have had strangers discretely tell me they have allergies so that I know to make 110% sure that my dog’s nose is where it belongs, that she’s out of their way, that the risk of contact is as minimal as possible. I have never felt by any of those people as disrespected as I did that day on the bus…
Later that week, I went shopping with a couple of friends and had a lovely time trying on clothes, finding some bargains, and laughing uproariously at a couple of items that fit just slightly wrong enough to be hilarious. After paying for my purchases, Jenny and I were making our way to the exit when two young women more than twenty feet away started screaming that there was a DOG in the store! I chose to redirect Jenny to go a route that didn’t intersect their path, and she handled it with professionalism and grace, but I was so shaken up that two people felt the need to publicly vocalize their fear when my dog and I were doing absolutely nothing to them. At the time, I thought that no one would react similarly to the presence of a wheelchair, but I recently discovered this article that makes me think that such instances happen more frequently than I ever considered.

Last week, I went into a store to return an item. Jenny and I walked up to the counter behind another customer, who very abruptly asked the clerk to ask me to move my dog. I took several steps back out of her way, waited my turn, then walked up to the counter while the other customer walked the looooong way around to exit the store. The clerk told me that the instant she saw my dog, her face just tensed right up. For some reason, it really hurt. It was yet again one more instance proving that I am still considered “other” because I use a dog to travel independently (and if I used a cane I’d get griped at for hitting someone in the ankles).

Why are we so feared? And why is it acceptable? Why did I feel so helpless, like I couldn’t just turn around and ask some of those people if they had something to say directly to me? If someone expressed discomfort with or fear of someone’s race or gender or place of origin or religion, they’d be called out for what they are – homophobic or zenophobic or racist. But because the presence of a disabled body in public is so rare and unexpected, manners go out the window? And that’s acceptable?

So the next time you see someone using a cane for identification or mobility, a guide or service dog, a scooter or a wheelchair, unless they are directly interfering with your ability to go about your day, keep your mouth shut and your fear to yourself. If you want to know how we go about our days so bravely, imagine frequently encountering the fear of others, publicly, and think how you would feel if you had to go through that. We want to go about our days just like you. And you wouldn’t like it if we told our friends that we didn’t want to sit next to a non-white, Hindu man minding his own business on the bus, or freaked out because a woman wearing a head scarf happened to be shopping in the same store as us. You’d tell us to relax… it’s only a bus seat, only a head scarf. Guess what, when reacting to our presence? Relax! It’s a cane, a wheelchair, a dog. Relax: it’s independence.

Special Snowflakes: Do you Want Equality or special Treatment?

08 Friday Jul 2016

Posted by in blindness

≈ 6 Comments

Tags

, , ,

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

≈ 3 Comments

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.

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

09 Thursday Jun 2016

Posted by in blindness

≈ 2 Comments

Tags

, , , , , , ,

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

Posted by in blindness

≈ 1 Comment

Tags

, , , , , ,

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.

“You’re… um… Not What I Expected”

27 Friday May 2016

Posted by in blindness

≈ 1 Comment

Tags

, ,

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.