Monthly Archives: February 2016

Book Review: For the Benefit of Those who See

29 Monday Feb 2016

Posted by in Book reviews, Nonfiction

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One of my blog’s most consistently viewed posts is this one, regarding the portrayal of blind characters in books. Because of this, I’ve decided to do a monthly book review, alternating between fiction and nonfiction, beginning with this book that created quite a stir in the blind community when it was first released.

 

For the Benefit of Those who See

By: Rosemary Mahoney

I chose to review this book because of this article that made the rounds of social media nearly two years after its publication. I found it well-rounded and compassionate, at great odds with reviews of this book. After mentioning this disparity  to a friend, I realized that I needed to read the book, to form my own opinion. Nearly a month after putting the book down, I still find myself incredibly conflicted by it. How can I be so awed by some beautiful friendships and inspired by the resilience of many of the blind students, yet put off by some of the awkward and inappropriate behavior and the fixation on everyone’s eyes?

 

Some Unnecessary Detours

 

The introduction to this book begins with a rather graphic description of an eye surgery. This is not for the squeamish. Perhaps the author uses this to reminisce about her own temporary blindness, how scared she felt. Then she uses this as a springboard to how she got involved with Braille without Borders. The first couple of chapters tend to jump around unnecessarily; I honestly found myself not caring about Rosemary herself, as her own experience of blindness was temporary and she was able to go back to her sighted life, with a seemingly perpetual fear of blindness itself. Later in the book, she describes the perception of the blind in wider western society, beginning in the eighteenth century and ending midway through the twentieth. The placement of this information was between the two sections of the book (the school in Tibet and that in India), which was quite logical, but the author didn’t cite any historical data from eastern countries, nor did she truly address the strides that have been made in western society in the past sixty years. It appeared that she viewed her ideas through the lens of a contemporary western chronicler, while not really addressing many of the true social realities that have historically been lived in the east. In these ways, the book takes off on tangents that may be informative as their own volume, but were cobbled together as a west-meets-east education model that doesn’t truly convey either particularly well.

 

I Did Find Inspiration Here

 

Unlike many other reviews by blind people, I did find myself truly awed by some of the students and their friendships portrayed in this book. I chuckled at the seriousness of the 12-year-old braille teacher, was touched by the young girl who persistently physically refused to allow a classmate to disengage by constantly praying for a cure, laughed out loud at the friendship of two loud and rather bawdy students at the school in India. Two young girls took Rosemary through a crowded Tibetan square, and showed her how they used their other senses to determine where they were; they were neither self-pitying nor constantly happy, yet they simply gave Rosemary the information they had. I was awed by many of the blind students’ resilience, not because they got up and got out of bed in the morning and did what they had to do with little or no vision, but they did so in a society that truly didn’t know what to do with them, and with little or no governmental or family assistance, sometimes fleeing truly abusive family environments.

 

But… But…

 

Some of the behaviors described in this book were truly cringe-worthy. I would hate to see any other group of people walk around with tea streaming down the backs of their shirts, waving long sticks around, crying out how glad they were to be (insert disability/race/gender here). It baffles my mind that in one breath, the heart-warming friendships and terrific adaptability of the students are wonderfully depicted, then in the next some of these same students are acting with the social grace of a toddler. It surprises me that a confident blind woman who runs the school would not address these behaviors; if she had, perhaps the author could have described the strides the students were making as she did with their computer learning. But as it stands, my western mind just can’t compute the disparity, especially in countries and cultures where cleanliness and propriety are quite important.

 

Educational Advantage

 

Two schools are described in this book. They provide food, shelter, and education for blind students, both children and adults. My opinion on blind schools has been documented here, and yet I applaud the author’s ability to detail the complex nuances and ironies at play for blind students in Tibet and India. In cultures where families run farms, and sighted children work on the farm, their blind child/sibling has an opportunity for an education. It’s one of the few times in which blindness has its own unique advantage.

 

Fixation on Eyes

 

I grew very uncomfortable with the author’s seemingly endless descriptions of people’s eyes. Many blind people wish we could make eye contact, but are uncertain how best to do this appropriately. Some of us are self-conscious about how our eyes appear to others, and based on the never-ending descriptions in this book, we have every right to be. Very few, if any people, were described as having nice eyes, and it appears that those who did have “normal” eyes had their blindness questioned by the author because of their confidence and social normality (see above). If eyes are the window to the soul, I’d hate to think of how soulless we are.

 

Conclusion

 

There are some nuggets of beauty in this book. Unfortunately, they are dispersed throughout outdated, unnecessary, and demeaning information. Even now, more than a month after concluding this book, I can’t seem to get it out of my head. As someone who lives in the “world of the blind”, I object to the characterization of us – of me – based on what my eyes do or don’t do, and the truly horrid manners exemplified in these pages. And yet, I draw inspiration, perhaps as the author intended, from the depictions of deep friendships, of learning despite the naysaying of family and society, of falling down and getting back up. I am glad I chose not to throw the baby out with the bathwater, but that bathwater is truly quite murky.

 

2.5/5 stars.

 

If you have any book recommendations, or wish me to review books more or less frequently than monthly, please comment below!

When WE are the Problem

19 Friday Feb 2016

Posted by in blindness

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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.

The Little Ways…

12 Friday Feb 2016

Posted by in blindness

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I threw a post to my twitter followers last week, asking for ideas for “fringe benefits” of being blind. everyone thinks of the obvious ones – boarding airplanes first, for example – but there are others. Someone sent me this list, and while some of the pointers are funny (I will cover them here), others missed the mark so thoroughly that it feeds into the stereotype that blind people don’t care about being independent or what they look like to others.

 

But I refuse to go on a rant on this subject…. so a la Tommy Edison, here are some awesome benefits of being blind:

  • If you read braille, even as a kid, you could read in the dark and your parents never found out
  • The term “lights out” meant nothing to you (for my totally blind friends)
  • You find out later that the person guiding you somewhere is immensely attractive (yes, this happens)
  • On long road trips, you never have to drive! (in my case, I hand the driver food…)
  • No one ever asks your opinion of the haircut they’re pretty sure is hideous…
  • You’re everyone’s favorite person during a power outage
  • You have TONS of ways to communicate; those “poor sighted people” seem to use visual cues most of the time
  • You never have to buy a TV for the picture quality
  • You can feel like a secret agent because you can operate a cell phone with the screen curtain on
  • If you have a guide dog (well-behaved, of course) you can bring them everywhere
  • You can hook up bluetooth headphones and “watch” movies through audio while simultaneously taking the dog out, doing laundry, and making dinner

On a serious note, as frustrating as blindness is sometimes, the support of others is amazing. Blindness has enabled me (and many others I know) to meet terrific people – sighted and blind – that I never would have met any other way. Whether it’s sharing cooking or fashion tips, providing accessible tech support options that don’t include a mouse, or simply listening and “getting it” on the occasions where blindness seems like the most frustrating part about your day, this community is one of the other best things about being blind.

 

How about you? What are some self-affirming and positive benefits you’ve found about being blind?

 

If you’ve enjoyed this post (or any others), please consider buying me a coffee… because life is better with coffee.

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.