Tag Archives: perceptions

Removing the Bubble Wrap: Freedom to Fail

20 Friday Jan 2017

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When you think of disability, what do you think of? Do you think of struggle, tragedy, inspiration? Do you think of incompetence or hope? Do you feel the overwhelming need to protect people with disabilities from all harm?
None of these – tragedy, protection, inspiration, incompetence – are what disability is about. It’s the only condition that transcends ethnicity, nationality, race, religion, gender, age, sexual orientation or economic status.
Disability IS humanity.
So why do we in the disability community – whether we’re disabled ourselves or are a loved one, teacher, spouse, or caregiver of someone who is – swing to the extremes of over-achievement and low expectations?

Those who know me well (OK, and if I’m honest, even those who don’t) learn pretty quickly that I’m a perfectionist. I like to do things well because I hate backtracking and doing my work over again. I’d like to think I’m more tolerant of the true limitations, weaknesses and eccentricities of those around me than I am of my own, but the jury’s still out on that. This isn’t to say I agree with lazy or apathetic attitudes (I don’t), but I realize we’re not all blessed with the same personality traits, gifts, skills and talents.
But why do we raise or lower the bar only because of disability? How can parents sometimes deliberately make their blind child stand out by not teaching them how to perform basic living tasks? And what makes us, as disabled people, feel the need to do absolutely everything perfectly by ourselves just because it can be done? Why do we believe the lie that we cannot fail at anything? Ever?
I’m currently working in a field that does not come naturally for me. It’s uncomfortable. It’s discouraging sometimes (okay, a lot of times). But in an odd, uncomfortable way, it’s also been the most empowering experience of my life. If one day it reaches the point where it’s not working out, I can honestly say that I threw my whole weight behind it… and I didn’t give up. I’ve been publicly compared to Rocky Balboa, and I wear that badge proudly, with the metaphorical black eye, split lip, and everything.
Why do I do this?
Because far too frequently, I’m not given the chance to succeed or fail on my own merits. I’m either not given an opportunity at all because of the preconceptions of my blindness, or I’m told that any effort I give is good enough. Both are wrong. Often times, people with disabilities are robbed of a crucial part of a growing process because these opportunities are denied us by those who “mean well.” We’re not wrapped in cotton, we’re not precious little beings who need to be patted on the head for every little thing we do that our non-disabled classmates, coworkers, or friends do just because its expected. We’re not achieving something simply because we do it “in spite of” or “because of” our disabilities. We are people, period, and we should be able to embrace our talents, be encouraged to make an effort to expand our horizons, and be met with the inevitable challenge of falling flat on our face sometimes.
So throw away the bubble wrap. We’re going to get hurt sometimes. But look back on your life. Tell me, what are the times you grew the most? Was it the time when things came easy to you? Or the times you looked yourself in the face (metaphorical black eye and split lip and all), squared your shoulders, and told yourself that you’d give it one more try?
Disabled people may need help with some things, with some tasks, with some alternatives. Or we may not. But what we need, more than anything, is the opportunity, on an equal and level playing field, to succeed or fail on our own merits, based on our own personalities, skills, talents and effort. No one should deny anyone else those growing pains and glimmers of hope, and disability doesn’t change that.

So… very… Tired…

23 Wednesday Nov 2016

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My wonderful readers, you have been so patient with me. The past month and a half has been exhausting, exhillerating, frustrating, encouraging, and probably the most conflicted six weeks of my life. You have, without knowing it, given me the space I needed in order to get back in the saddle again… so here I am. I thank you in advance for your continued patience, because I am just… so… tired.

I’m tired of having to convince the general public that I deserve bodily autonomy.

I’m tired of having to convince potential employers that workplace accommodations are in my hands, they have to do NOTHING but respect me and train me the way they would a sighted employee.

I’m tired of being talked down to like I’m a child.

I’m tired of seeing organizations (albeit well-meaning ones) publish books about “how to talk” to me.

I’m tired of feeling like I am fighting all the time, but I feel like NOT fighting is giving up on myself.

And, most of all…

I am tired of blaming myself for being human, for being imperfect, for being angry and frustrated and exhausted.

I am just… so… very… tired.

Relax! It’s Independence!

22 Friday Jul 2016

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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.

The Empowered Series: Abigail Style

15 Sunday May 2016

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

 

About Stephanae

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

About Abigail Style

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

Why Abigail, and What got Her Started?

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

What’s Next?

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

Conclusion

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

Book Review: All the Light we Cannot See

31 Thursday Mar 2016

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Life has a funny way of being coincidental. I was about halfway through reading this book – written by Anthony Doerr – when this review came out. I contemplated putting the book down and letting that review stand on its own, but I decided to finish the book and publish my own review, if for no other reason than to form my own opinion. I’m glad I did!

 

Publisher’s Summary

Marie-Laure lives with her father in Paris near the Museum of Natural History, where he works as the master of its thousands of locks. When she is six,
Marie-Laure goes blind and her father builds a perfect miniature of their neighborhood so she can memorize it by touch and navigate her way home. When
she is 12, the Nazis occupy Paris and father and daughter flee to the walled citadel of Saint-Malo, where Marie-Laure’s reclusive great-uncle lives in
a tall house by the sea. With them they carry what might be the museum’s most valuable and dangerous jewel.

In a mining town in Germany, the orphan Werner grows up with his younger sister, enchanted by a crude radio they find. Werner becomes an expert at building
and fixing these crucial new instruments, a talent that wins him a place at a brutal academy for Hitler Youth, then a special assignment to track the resistance.
More and more aware of the human cost of his intelligence, Werner travels through the heart of the war and, finally, into Saint-Malo, where his story and
Marie-Laure’s converge.

 

A Note about Audio

If you know French – and even if you don’t – skip the commercial audio narrated by Zach Appleman. The narrator’s French is butchered so badly that I had given up on two previous attempts to finish this book in audio. I got through about a third of the audiobook this time before I gave up and switched to a text copy.

 

Poetic Language

I’ve always been fascinated and interested in books taking place in Europe leading up to and during World War II. I felt the despair in the children’s home where Werner grew up, the changing landscape of Paris before the Germans occupied it, and the town of Saint-Malo (and other cities and towns) as the war raged on. Some might find the shifting in time confusing, as the stories of Werner and Marie-Laure diverge and converge, but the book is so poetic that I found myself glued to the pages. Using darkness as a plot device both physical and figurative was beautiful and heartbreaking and brutal, sometimes in the same breath. The importance of radios was also integral to the story, as – even without the ability to see due to blindness or ambient darkness – the radio allowed the characters to not feel so alone and to communicate, often under the radar.

 

Marie-Laure: A Perpetual Child

At first I had high hopes for Doerr’s character of Marie-Laure. Her father, after the shock of her blindness sets in, builds a tactile map of their neighborhood in Paris (and later Saint-Malo), forcing her to memorize it and use it to help her navigate her way around. His intentions are laudable, even though a piece of me cringes at the painstaking lengths he went to to make it happen. The ideas about blindness in the 1930s and 1940s are unknown to me. Other reviewers have been frustrated by her counting of storm drains to navigate, but who am I to judge this? Perhaps my way of navigating the world would seem odd and juvenile to those who will come along in seventy years. But in some important and damaging ways, Doerr does not allow Marie-Laure to grow up normal. She has no friends to speak of, she appears incapable of dressing herself even as a teenager, and the adults in her life tell her what she can and can’t do and where she can travel alone. before her father leaves, he washes his 12-year-old daughter’s hair, something that can be seen as tender, inappropriate and/or patronizing, depending on your viewpoint. When Marie-Laure asks questions, they are asked in the way an impish, precocious child would ask them. Maybe the war made those around Marie-Laure more protective than they otherwise would have been, maybe not. But I do think that Doerr could have made Marie-Laure a more complex character during that war than a young girl in a teenager’s body, maybe one who still loved the sea but also helped to care for herself and those around her.

I must also interject here that the image of Marie-Laure as a capable, independent thinker is much more pronounced toward the end of the book. Even so, it was largely because she had to be, making life choices when bombs were falling around her home, not because she chose that path for herself. Her post-War life is only referenced at the very end of the book. But by the time the reader gets to that point the image of a charming, docile girl is foremost in their mind.

 

Werner: A Man Too Young

From the first time Werner and his sister listened to a radio they found, deep into the night, at the children’s home, I was glued to their story. Werner is a young man who grows up with nothing, living with his sister in (effectively) an orphanage in a mining town in Germany. He is book-smart, good with numbers and formulas and mechanical things, thus earning himself a place at a school for Hitler Youth. His sister is back at the children’s home, young and naive in some ways, wise beyond her years in others. Werner is not a brutal man and seems powerless to stop what goes on at the school and later on the battlefield, where it’s his job to locate clandestine radio transmissions throughout Europe. The Hitler Youth school tries to break the goodness out of him, and somehow it succeeds in making him unwilling to speak up, and yet at his core he is a decent man-child. He cannot understand the brutality, in small ways tries to avoid it, but a deadly mistake truly costs him his innocence. Such passages are hard to read, and yet necessary to his development as a complex character. When he meets Marie-Laure, it’s his chance at redemption…

 

In Conclusion

I don’t regret reading this book. Maybe I read it in spite or of because of the overwhelmingly positive or negative reviews. Mr. Doerr is certainly an author to watch. His depictions of Werner’s life – both before and during World War II) were engrossing and believable. While I wish he would’ve portrayed Marie-Laure (and the actions of those around her) differently, it only slightly took away from my enjoyment of the book. If Marie-Laure’s post-War life had been more well-represented than the last handful of pages – an independent woman with a career, a sexuality, a family – it would’ve made her father’s and uncle’s protection of her (war-time or not) easier to swallow.

 

4/5 stars (3 if it were audio).

When WE are the Problem

19 Friday Feb 2016

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No one can deny that people with disabilities are treated by society at large much differently than able-bodied ones. Social media activism over the past couple of years has given voice to movements like #StopAbleism and #TheAbleistScript, where people with a wide range of disabilities have articulated comments and ideas that have been whispered around us, shouted into our faces, or become internalized in our own lives. This is not to say that the situation is hopeless – far from it – but though a lot of work has been done, we have a long way to go to be treated as equals in a world that simply doesn’t know what to do with us, and occasionally doesn’t seem to care if we speak up for ourselves.

 

But, you see, my dear readers, there’s a flip side to this equation. If we don’t hold ourselves up as true equals, then how dare we expect others to treat us as such? I’m not talking about receiving accommodations so that we can access the same materials, buildings and facilities as our able-bodied classmates, coworkers and fellow consumers; I’m talking about feeding into stereotypes of low expectations, social awkwardness, and refusing to engage that wider world that doesn’t quite see us as human. Be mad at me if you want, but someone’s got to pull no punches. You and I can be contributors to our own experience of ableism, discrimination, and inspiration porn. Here’s how.

 

Over-sharing of the Mundane: Low expectations

Blame the selfie if you want, but over the past few months I’ve seen a ton of blind people (in particular) posting frequent videos of themselves working their guide dog, taking the bus or walking through Target. Many of these are not product education, technology or skill tutorial, or even informational videos, which appear to be extremely popular these days, but they’re just chronicles of ordinary people doing ordinary things. Maybe sighted people do this… I don’t know. Or perhaps I have friends online who have better things to do with their time – like make cool bicycle-repair tutorials, or share awesome and obscure tunes from Youtube. Sure, everyone shares pictures of the biggest chocolate cake they’ve ever seen, posts videos of their dog going crazy seeing snow for the first time, or vents about their bad day… that’s all part of the human experience in the social media world. But I’ve seen many videos filmed by blind people that are just… life! And they share it loudly and widely as though it’s a HUGE accomplishment to show the world how their guide dog takes them through a local pharmacy. I’m not against sharing life experiences – the happy, the sad, the ones that make you raise your eyebrows – but these videos about how courageous you are for taking a bus in a new neighborhood (while it might be very true for you) perpetuate the idea that all blind people feel and act this way… and WE DON’T! If you need support and encouragement, YES, reach out and grab it with both hands. If you’re a talented singer or musician, post those videos, by all means… but blindness has nothing to do with your talent. Video is a powerful medium and, for good or for ill, it shows the things that we’re truly proud of in our lives, and frankly I want us to be proud of accomplishments because they are accomplishments in and of themselves. As my new friend Nicole recently wrote so eloquently:

Think about the larger, sweeping, massive ramifications of allowing someone to think your day to day is amazing, inspirational, courageous. Think about the fact that you’re not just allowing it, you’re encouraging it by creating and posting videos or articles that evoke EXACTLY that response.

 

 

Social Awkwardness: We Just Don’t Belong

Everyone has foibles, eccentricities, preferences, and quirks. It’s all part of the human experience. But perhaps because we’ve never been taught, many blind people fall into habits that are at best odd and at worst damaging to the rest of us. We should be comfortable with who we are, neither denying our blindness nor emphasizing it so much as to make us look like toddlers who can’t care for ourselves appropriately. A recent hashtag on twitter has become a “parody” of sorts, claiming to represent the “funny” side of blindness.I’m not against laughing at the funny things we’ve sometimes confused with others, but I have never found jokes infantalizing us (“discovering” we’re dressed in matching clothes!) or emphasizing blindie-clique dynamics (see below) funny. In fact, they perpetuate the idea that we’re just too strange and awkward to be taken seriously, and who wants to hire or educate someone so awkward or “other” for anything other than than a source of inspiration?

 

Social Isolation: Using Sighted People for their Vision

I am by no means belittling the support of others who share the journey of blindness and visual impairment; in fact, I posted about how awesome and supportive it can be not that long ago. But hiding ourselves amongst exclusively those same people does little to dispel the idea that we are somehow “other” and too “unique” to be bothered connecting with on any meaningful level. perhaps out of necessity (Canada has a small enough blind population that this is possible), or perhaps because I am social by nature, my world has been blessed with terrific friends, blind and sighted. But I notice many blind people who never ever seem to socialize much outside the blind community, with sighted people primarily filling in the role of driver or shopping assistant. This isn’t to say that I would turn down a ride offered by a friend, or indicate that I like grocery shopping alone (I don’t). Nor am I indicating friendships can’t spring out of such arrangements. But just as we wish to be viewed as people, we need to treat others in this way. Keeping exclusively, even primarily, to our social blindie cliques and relegating sighted people into primary positions of driver or guide is no better than us being confined to the role of musician or couch potato. In fact, it’s worse; we know how crappy it feels.

 

Abusing the System: Accommodation at All Costs

I’m a firm believer in computer programs, web sites, and buildings being accessible to people with disabilities. I also believe that it’s essential for workplaces or educational institutions to make all accommodations possible to include us on the job site or in the classroom, not only for our benefit, but for theirs. But it is also our responsibility to ease the way forward for our employers, our service providers, and our professors.If we can make the available mainstream technology work (and much of it works well), then it’s up to us to do so. Using exclusively specialized technology – a note-taker rather than a computer, for example – keeps the barriers to education and employment higher than they need to be, and perpetuates the idea that we’re just too hard to accommodate, so why should an employer or university bother? In many developed countries, it is not uncommon to receive some funding to cover what can be extreme costs of technology. I got stuck in a catch-22 system, where I couldn’t get funding without a job, and I needed that technology to be able to obtain a job. This is sometimes the case in other parts of the world, but sometimes people can receive funding before getting that job, and there are drawbacks to that system as well. Thankfully, it worked out for me, but it makes my blood boil when I hear about people who receive technology for simply searching for jobs who don’t obtain employment due to lack of serious effort, who don’t return loaned equipment, and sometimes don’t even use the technology anymore. It’s important for us to obtain the assistive technology that we need to be able to work, to study, to learn; but if it is not used to those ends, it’s time to be realistic and pass it along to people or agencies who are struggling for basic supplies. Hanging on to unused technology (particularly if it’s been funded) is expecting the preferential treatment we’re trying so hard to avoid. In many developing countries, access to even basic literacy tools like braille writers is almost impossible… and yet I hear of some people who get a ton of technology and don’t even bother looking for work. Stop it! Your complacency and entitlement makes it harder for the rest of us who actually need that technology to be productive. And to say nothing about obtaining employment…

 

Making Excuses: “Because I’m Blind!”

I am not one of those people who thinks everyone should be able to cook a 4-course meal, have a spotless house, and never ever ever ever EVER ask for help with anything. Frankly, living with the expectation of perfection is exhausting, and no sighted person is held up to those standards either. But it drives me up a wall when I hear the excuse “I can’t [insert activity here] because I’m blind.” OK, even though three years ago a blind man tested out Google’s self-driving car, the technology isn’t quite there for us to drive completely independently. Aside from that, blind people have done tons of great things – big and small – all over the world, from raising families to opening businesses to studying subjects they love. The possibilities are endlesss, truly, even if not all of us have the inclination to climb a mountain or open up a restaurant. But if you aren’t a good cook, or don’t like to clean, or don’t feel safe sky-diving, that’s your humanity talking; it is NOT because you’re blind. Don’t even go there!

 

Conclusion: Cleaning out the Dirty Laundry

I hate the idea that I am an ambassador for the blind, and yet, in some ways, I really am. And so are you. It’s a fine line between expecting perfection of ourselves and allowing low expectations to dictate the course of our lives. Both are extremely damaging and exhausting, and really not realistic. Ultimately, though, we can’t expect equal treatment until we avoid the pitfalls listed above. I never would’ve written this post had I not seen so many instances of this both in-person and online. And if I’m truly honest with myself, at points in my life I’ve even engaged in some of these problem mentalities and behaviors. But we can move on from this place. We can share our lives from the focus of our humanity, not our blindness. Even if it’s painful, we need to take a look around us and notice which of our behaviors make us stand out unnecessarily. Many people wish to befriend us, and it’s up to us to open ourselves up to the sighted world to challenge us and befriend us, not just serve us. While we still are viewed as needing the right to access, stop confusing our rights to access with abusing the ability to use the supports that are supposed to make it happen. And we must stop using our blindness as a license to be lazy and have everything done for us, because if we don’t, we’ll be back where we started, making videos of us sitting on the couch and writing blog posts…

 

I won’t pretend any of this is going to be easy. But I hope that confronting some painful realities about ourselves can spur us all to make some necessary changes. Is discrimination and ableism a problem? yes, it is. But sometimes, we’re the problem, and in those instances – and only those instances – we need to get out of the way and give the naysayers, the ableist and the discriminatory no valid reason to think that we’re useless, lazy, manipulative or uneducated. After all, as much as it’s up to us, let’s give them no valid reason beyond their own prejudice to discredit us… then they can look in the mirror and realize how they’ve contributed. But right now, I think it’s our turn…

 

*** UPDATE: Thanks to John and Brandon for tearing this post apart in a marathon podcast. Because of this, I have kept this post primarily intact, but did change a line you rightfully found offensive. I appreciate your opinions, and the fact that overall they came from a place of respect, even if you disagreed with me. This blog is nothing without readers and friends. I love constructive dialogue, and am willing to listen to any who respectfully disagree with any of my opinions. So, please, I welcome any further dialogue on this and other topics related to blindness, confidence, life…

Flying Blind

14 Sunday Feb 2016

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OK, I’m caving… since I’m a bit of a grump regarding all things Valentine’s Day, this should come as no surprise to people who know me well. For those of you who don’t, that’s OK… but you can send me chocolate or buy me a coffee if you love my Valentine’s Day post. 🙂

 

About a month ago, nearly a year after its publication, this blog post blew up twitter and Facebook. The rage was palpable from blind people all over the western world and from their partners, sighted and blind alike. I addressed many of these common perceptions  in my most popular blog post ever, so I won’t belabor the point here, but it came as a surprise coming from an organization that claims to serve the blind community.

 

English is clearly not this author’s first language, and it’s entirely possible that culture (in whatever context that is) played a role in the article itself. But I completely disagree with the idea of allowing partners (current or prospective) to be smothering and hovering – even a couple of times – until we prove to them that we are capable. Such behavior sets up precedent of one partner viewing themselves more capable than the other, due to the very nature of one partner having a disability and the other not. This doesn’t even address the idea that two partners can have a happy, healthy relationship while both having disabilities (some couples share disability, while I know others who have different ones). Either way, it’s incredibly presumptuous for anyone to think that all people with disabilities should have an able-bodied partner, or that we should “stick with our own kind”; both ideas are incredibly damaging both to our prospects for relationships and to our own autonomy in choosing partners.

 

Whatever our disability status and that of our partners, the important thing is to allow them to fly, not clip their wings until WE feel things are OK. I’m not talking about making wise financial choices about when one partner should go back to school, or keeping your spouse company while they’re cooking in the kitchen (because, like, couples should spend time together or something). In my own opinion, relationships are meant to strengthen each partner when the chips are down and life isn’t that great, to encourage each other when one or the other is struggling, to boost each other’s confidence in their own abilities and encourage each other to try new things. Any stifling, even under the guise of “protection” is almost counter-intuitive.

 

So for those who are in relationships – healthy ones, struggling ones, ones whose time is nearing an end – enjoy each other, not just today, but every day. For those who are single, by choice or by circumstance, I hope there are people in your life who will give you the wings to fly. To those who are happy, share it with others; to those who are hurting, someone – somewhere – wants to help carry you. Above all, after all the Valentine’s Day sweetness has faded, once the flowers have wilted and the candles have melted into small pools of wax, think of all those who love you now – your friends, your family, your partner (if applicable) – and those who haven’t yet crossed your path, and thank them for giving you the wings to fly. Even “flying blind” is safe when there are others who buoy you, encourage you, and help to heal any broken wings along the way.

No more School, No more Books…?

06 Saturday Feb 2016

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A few weeks ago I had the opportunity to take part in a podcast regarding the education of blind children. At almost the same time, I found this radio documentary about whether the advent of technology is taking away the need or relevance for braille. Since it’s quite clear where I stand on the braille issue, I wanted to tackle the education questions, since (for some reason I’ll never understand) it is not infrequently assumed that all blind students attend special schools.

 

I’ve outlined briefly my educational background here; as is obvious, I was mainstreamed through my entire school history. All of my blind friends (few though they were) were mainstreamed, as Canada at the time only had one or two schools for the blind, and they were both in eastern Canada. It wasn’t until I was eleven or twelve before I spent a large amount of time with anyone who attended a school for the blind (in the US); even today, many of my friends were mainstreamed, and even those who attended a school for the blind for brief or extended periods have described many practices that would be decried by any civil rights organization (belittling treatment, lowered educational standards, etc.) While I realize this is not the case for all students at all schools for the blind (I’ve heard anecdotally how empowering such schools can be in Europe, as opposed to many in the USA and Canada), I’ve heard enough about it to cause me some concern. Instances like lowered expectations for totally blind students, allowing those with more vision to learn more skills than their totally blind classmates, not allowing those who took some mainstream classes to associate in any way with those “public school kids”… these all make me die a little inside. Even listening to some of the recorded portions of the documentary above, I cringed at the way some of the teachers talked to their students, as though they were much younger than teenagers.

 

But I cannot disagree that some students can find separate schools incredibly helpful. many smaller communities may not have the resources and facilities to assist blind students in the way that best suits them. Sometimes sighted peers will bully a blind classmate, and being in a place where they are not viewed or treated as “different” can make the difference between graduation and dropping out. If there are additional disabilities involved, a school for the blind can sometimes have the resources that a public school may not. Life skills that a public school may deem “too dangerous” or unsuitable for a blind student (cooking, workshop, etc.), and parents are unable or unwilling to teach these skills themselves, a separate school can sometimes provide such training and prepare the student to cook, clean, and perform other life tasks as a blind adult. even among some who attended schools for the blind under some of those circumstances, I’ve heard far too many comments along the lines of “They may have educated me in braille and technology and some life skills, but they nearly broke my spirit.”Many life-long students of such schools are never broken of bad habits that are socially unacceptable among sighted peers; mainstreamed kids learn (sometimes in harsh and cold ways) that such behaviors aren’t OK. I don’t think segregation is the best way to educate blind students, as it can perpetuate a certain “otherness”, but many of the resources of such institutions can be incredibly helpful for mainstreamed students who are struggling in school. I don’t have all the answers to these questions, but maybe it’s important to start a dialogue.

 

One thing that does concern me about schools for the blind might not be related to the education itself. Any job applicant is required to prove to an employer that they graduated from high school; including “_____ School for the Blind” on a resume will automatically “out” an applicant as blind right out of the gate. This doesn’t allow an applicant to allow their resume to stand on its own, with skills, talents, work and volunteer experience; Such schooling, just based on the name, will automatically show an HR manager, company CEO, or whoever looks at that resume, that the applicant is blind. Despite legislation prohibiting discrimination, like it or not, discrimination against people with disabilities still exists, particularly when it comes to employment. Why give hiring managers preconceived notions – right or wrong – about us as applicants?

 

I realize that I’m framing many of my thoughts from a western point of view, where blind people wish to be held up as equals to their sighted families, fellow commuters, and (many of whom) wish to maintain employment with mainstream organizations. But what about countries where societal views of blindness are not as supposedly enlightened as our western ones? What if blind students simply wish to… survive? Should we throw the baby out with the bathwater and assume that organizations such as this or that in developing countries shouldn’t exist, because, by gosh, we have rights? Are baby steps in the right direction still… well, in the right direction? Are abuse, deprivation, and family suspicion better than having a safe place for the blind, even though many such residential facilities offend my western sensibilities? Again, I don’t have the answers, but I have many many questions. Last week, I read a book about one of the organizations I referenced earlier (I do plan on reviewing it in full once I mentally process it further); I was touched by the empowerment many of the blind students at these schools felt, maybe for the first time, and yet dismayed by some of the childish and socially awkward behavior that was described. Does the presence of one negate the need to address the other? Or is what matters most the fact that these students are educated, whatever the cost?

 

Whether east or west, mainstream or separate,I  think what matters is that we are educated to be as productive as we can be. I don’t wish to only indicate what separate schools for the blind are doing wrong while praising mainstream schools, because even if I was very fortunate, I realize there are holes in that system as well. Ultimately, it comes down to us, and the power we choose to give to those around us, and I think that’s what concerns me most: as a blind child, you hear so many mixed messages, and you don’t have the mental maturity and life experience to discern truth from a lie. One teacher says that you’ll NEVER succeed at something because you can’t see, while another treats you like you’re a toddler; one shows you how to dissect that biology project, while another refuses to acknowledge your awkward behavior and help you improve it. At the end of the day, the best teachers are the ones that empower without condescension, push without bullying, and confront the hard stuff of life without pity. Those teachers are found in all schools, but are sadly all too rare… perhaps I’m lamenting education as a whole.

Speaking in Tongues: On Language, Learning and Literacy

04 Monday Jan 2016

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I don’t know who comes up with these, but many organizations dedicated to blindness celebrate January as National Braille month. Louis Braille was born on January 4 in 1809 and invented the alphabet that became the basis for the current system of dot combinations that enable blind people all over the world to read. He died tragically young, but his legacy has lived on for all of these years. In addition to Latin languages (English, French, etc.) there are braille systems for Japanese, Chinese, and Korean, as well as many other languages that enable blind children and adults to not only read and write for themselves, but contribute to society at large.

 

I learned how to read braille at the same time my schoolmates were learning to read print – perhaps even earlier. My vision was such that I could read very large print and see pictures in books or on TV, but using it for long periods gave me massive headaches. So at the age of four or five, I started learning braille, which allowed me to continue my schooling uninterrupted when I realized that one of my many eye operations robbed me of most of the sight I had left. I initially learned to write using a Perkins brailler, and then was forced to learn using a slate and stylus – something I hated at the time, but am eternally grateful for now.

 

As a child, I thought every other blind student learned to read and write braille in this way, but I have learned that many are not being taught braille at all, due to the prevalence of screen reading software. Many of those that are taught to read may not be taught to write braille, since typing on a computer is so commonplace. While audio feedback and learning has its place, I believe there is no substitute for learning proper spelling, grammar, and sentence structure, and for those with little or no usable vision, I believe braille is the only way to achieve this. In no way am I saying that everyone needs to be perfect at it (I’m sure Meagan and others can find six mistakes in my first few paragraphs), but even sighted learners using a tablet or a smart phone have a visual concept of spacial relation, grammatical correctness, and even spelling (with or without the aide of a spellchecker). I believe the lack of braille teaching (with hard copy paper or with an electronic braille display) will ultimately put blind children (and later adults) at a disadvantage, because it is extremely hard to learn basic language concepts without being able to “see” them. I should know; I have learned three languages in addition to English, and could never have succeeded as well as I did, particularly with French, had I not been able to “see” proper spelling of words (those silent “e”s would have killed me).

 

Braille has made me the person I am today. I am literate, articulate, and play a mean game of Scrabble. While I do listen to audio books and use a screen reader to access a computer, I am eternally grateful that at eight years old I was all but glued to a chair and forced to learn that slate and stylus; who wants to carry around the braille equivalent of a Smith Corona? From a practical standpoint, having a secondary way of processing information (a braille display) proved incredibly helpful on an occasion where my computer’s sound card was fried and I had no access to my screen reader at all for several days! Buildings with elevators that don’t have braille signage can send me to the wrong floor; now imagine that in every single elevator because no one took the time to teach you how to read numbers? Not everyone will agree with me, but I firmly believe that those little dot combinations are one of the few things that can help level the playing field. Look up “Braille Literacy” and many organizations will correlate braille literacy with academic achievement and employment. So maybe it’s not just me…

I will Never Ask to Hold your Baby

03 Thursday Dec 2015

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***Blogger’s note: It was kindly pointed out to me that a previous edit of this post identified certain individuals and situations. This was not and never has been my intent, so I have removed any identifying information. Thank you for reading and commenting.

 

One day last week, all conversation stopped when an infant was brought into the room. Four women cooed, passed around and fussed over the baby. I was about to open my mouth and ask if I could hold her when I was asked, “Would you like to touch the baby while someone else holds her?” My heart sank. I wanted more than anything to ask if I could hold the baby, but words just wouldn’t come out. Even thinking about it now, nearly a week later, I regret not asking the question, even as I realize that a large piece of me feared that the answer would be no.

 

I have friends with children, some of whom I have known since they were infants and who are now approaching double digits in age. Looking back, I doubt I have ever initiated a baby-holding experience; I would be asked if I wanted to hold the baby or, in one memorable instance, had a baby unceremoniously plunked in my lap. I don’t have an exact reason why this is, but I know a piece of me feels like the world would end if I were to ask to hold a baby and was told no, that’s OK, or – perhaps even worse – miss the horrified or awkward or mistrustful glance that would accompany a hesitant, “OK.”

 

And yet, one day, I wish to be a mother. It’s been my dream for as long as I could remember. Several jobs ago, I thought I would stay at that job until I became pregnant and went on maternity leave, but life had other plans. Over the past few months, through all the changes that have gone on in my life, I have thought more about motherhood. What about being pregnant? Would I have to respond graciously to such insensitive questions like “Where’s the father in all this?” or “Are you allowed to have a baby?” or “Are you going to keep it?” And that’s BEFORE giving birth! My biggest fear is having social workers involved in my parenting because of a perception that a disabled parent can’t take care of an infant (think that won’t happen? Think again).

 

Even a basic call-out to blind friends has produced heartbreaking fear and misconception of childcare capabilities expressed by family members, friends of friends, and strangers. More than one blind father has had store employees thank their 4-year-old for “taking Daddy to the store”. One friend (the go-to “Cool” babysitter of the neighborhood) had one family refuse to have her look after their children unless a sighted (read: capable) person was with her. Another was told that his child was invited to a birthday party… only if a sighted parent brought them. And those were just the stories I heard in the span of about thirty minutes, with more comments of “Don’t get me started; I’m talked to like I can’t POSSIBLY take care of myself, much less a child.” My heart grieves for a world where this is so.

 

So for those who have children, I don’t wish to come across awkward and uncertain, but in fact I really am. My arms ache to hold that newborn, and I’d LOVE to get down on the floor and play dolls with your six-year-old. But I want to respect your autonomy as a parent to decide who watches, cuddles and holds your wonderful bundle of joy. but every piece of me is screaming that it’s something I would love. But I can not ask. I don’t think I could handle even a hesitant yes, and I know I couldn’t handle a no. So please, ask me, because right now I’m not strong enough to take those first toddling steps myself.