Every once in a while, certain hashtags or articles make the rounds on Facebook and Twitter.  Sometimes they drive me crazy because I saw them six months ago and someone has decided to revive them.  While they come with the best of intentions – to educate the public about the needs/desires/opinions of people with disabilities or to vent frustrations about the public’s perceptions of the same – Hashtags such as #Stopableism2015 or articles such as “10 things Never to say/do to a deaf/blind person” appear to frequently do less educating and more griping about people who can hear, see, walk, etc., almost creating an overwhelmingly abrupt kneejerk reaction.  If we want to be perceived as humans with needs, desires, and feelings, should we not treat those who may be over- or under-helpful as though they have feelings, too?

At the root of this trend, however, is a desire to be treated equally in work, recreation, and perception.  I have been the recipient of both demeaning and preferential treatment, neither of which is what I wish.  I am thrilled to have the drive, confidence, and luck to be gainfully employed, as well as enjoy a full social life with both blind and sighted friends.  Do I get frustrated by perceptions that I am helpless?  Of course!  But I have found that the more I politely advocate for myself, the more reasonable I will appear, and the more likely I am to leave a positive impression.  I am by no means perfect at this, or think one should accept every bit of well-meaning assistance that is thrust upon me; nor do I believe that I am advocating for every blind person out there.  But I find that the more “human” I act, the more “human” I am perceived, and the less likely I am to flippantly use trendy hashtags to vent my frustration on a day when I am tired of answering invasive questions, explaining my access rights with a guide dog, or simply want to have someone ask “So what do you do?” without getting a surprised reaction when I tell them my occupation.

At the end of the day, an acquaintance on Twitter put this best:

https://twitter.com/SassyOutwater/status/554976104927477760

But you are coming with me!  For the past six months, my husband and I have planned, fretted, budgeted, dreamed, freaked out, planned, budgeted again, dreamed some more… you get the idea… tomorrow morning, we, along with Jenny, will take to the skies en route to New York City!

My plan is to chronicle my journey as a tourist – yes, a blind tourist, but a tourist – detailing all the sights (via sounds, tastes, smells and touch) of new York City… and some things are likely to surprise everyone… myself included!

So hang on to your hats, folks…

In the words of Frank Sinatra, start spreading the news…. we’re leaving, er…. tomorrow…?

One thing I say frequently – both in my life and on this blog – is the idea that blindness is viewed by the general public as simultaneously fascinating and repellant.  Nowhere is this more on display than in mass media – books and movies in particular.  Since my exposure to movies is limited by my own choice, I will simply address books in this blog.

BIOGRAPHIES

I love to read journeys of those who have in some way or another come to terms with their blindness – whether from birth, genetic disorder,or accident – and still embrace life by enjoying family, athletic pursuits, or careers.  I have mentioned a couple of them in previous posts, and have more on my to-read list.  The one complaint I have about many of these books – written particularly by those who lose or have lost their vision gradually – is the anger and denial process.  This might sound hypocritical, because we all have gone through it in some form or other, but I get so frustrated that the denial process includes all the thoughts of what blind people can and can’t do.  Of course, there are blind people that can feed into all manner of stereotypes, but as someone who breaks the mold for many of them, it does raise my hackles.  Who says losing your vision means you can’t get a job, marry, raise children, volunteer in the community?  Unfortunately, because of the early sheltering that can sometimes suffocate a blind person for years, these ideas are hidden not far below the surface when a member of the general public thinks about blindness.

LITERARY NOVELS

I have discovered several novels that have been published in the past couple of years that have either portrayed blindness realistically or otherwise.  I will not name them here, because this list will change and grow.  But what I do like about some of them is that they portray blind people with their own foibles – neither overly sheltered nor superhuman.  I read one novel recently where one main character just happened to be blind; if she hadn’t been, the novel would’ve had a couple of minor changes to some dialogue, but the plot would have been unchanged.  Another novel I read had a blind character whose blindness was integral to the story, but one plot line is being faced by blind people all over – the perception of their capability as a parent.

Conversely, I have read other novels with blind characters who either use their blindness as an excuse for being self-indulgent, arrogant, or reliant on other people.  One book I read had a blind character who was in such denial about his blindness that he used echolocation to navigate, without the aid of a cane or a guide dog, and apparently nobody else knew he was blind.  Another book involved the transition of a teenager into her family life after having been blinded in an accident; she relied heavily on others, and used her blindness as an excuse to take her pet dog to school with her even though he wasn’t trained as a guide dog.  Both ends of the spectrum outlined here can do immeasurable damage to the perceptions of the blind, leaving the impression that we are either more or less independent, socially adept, or opportunistic than we really are.

SCI-FI/FANTASY/ETC.

While this is generally not my reading choice, many of my friends – both blind and sighted – are interested in this genre, and have mentioned their impressions of blind characters in this medium.  “Daredevil” is probably the most famous character along this line, and most people don’t take his abilities seriously.  However, I have come across people who ask if I can perform feats like Daredevil; only in my dreams!

Others have pointed out books written in a style where you don’t expect the characters to be portrayed with realism.  I am not sure of my own opinions regarding this, because I prefer my characters to be real, whether they are sighted or blind; so I can’t offer an honest opinion not coloured by my perceptions of the genres.

TEMPORARY BLINDNESS

I have read several books where a blind character was either blinded for a short period of time, then regained their sight, or had suddenly gained sight after a life of blindness.  While it makes for great storytelling, it simplifies the rehabilitation of a newly blinded individual, which can bee intense, frustrating and demoralizing.  With sight restoration, I personally believe it perpetuates the idea that blind people need to be “fixed.”  While few of us are completely content with our blindness – it can be VERY inconvenient at times – most of us have grown to accept it as simply part of life.  But the idea that blindness needs to be fixed or cured can be emotionally damaging to those who have not reached that point, or even to those of us who are having a bad day and are simply tired of feeling so different.

So, what are some of your recommendations for book with excellent portrayals of blind characters?  What are some that set your teeth on edge because of their portrayal?  I am curious!

If there’s one idea that I hear associated with blindness, and how blind people should live our lives, it’s “safe” or “careful.”  I’ve either seen or experienced first-hand the idea that I or someone I know are not supposed to do something – fry hamburger, cross a street, have a baby – because we cannot see and cannot possibly complete the task independently or safely.

What seems to be lost in the shuffle is that blind people are not the only ones who do normal things unsafely, or do unsafe things, period.  I’m married to a bus driver, and have myself heard scary stories about pedestrians and cyclists moving illegally in front of a bus or car.  They might get a honk from a horn for their suicide mission, but unless they are seriously hurt, they are not likely to have drivers or fellow pedestrians shadow them.  But because I am visually impaired, it seems that I – and others like me whose vision impairment is obvious – are open season for being followed, coddled, or otherwise told how to live by parents, relatives, and complete strangers.  Sighted children generally slowly gain more independence as they get older, but I have seen many blind children, teenagers, and young adults never learn to cook a meal, travel on public transportation, or gain marketable skills for the work force, which makes learning those skills later in life – if the individual chooses to do so – so much more difficult and  is a blow to the ego to boot.

Particularly in the past couple of years, I have begun to yo-yo back and forth on whether I appreciate being “safe”, if it means simply being comfortable and not taking reasonable risks.  But no matter how safe and risk-averse we are, humans are not wrapped in bubble wrap or cotton.  We will sometimes fall down stairs; we will make a terrible meal (I cannot for the life of me make grilled cheese – does that make me a bad blind person?); our hearts and souls will connect with someone – or several someones – and the relationships will strengthen us or break us wide open… and that is OK!

I have recently come to the decision that safety for its own sake is underrated – nothing ventured, nothing gained and all that – while recklessness is foolishness (texting while crossing a street? bad idea!).  We cannot be protected from everything – those I know who have been so are unable to cope with the challenges of life that inevitably arise – but we can stumble and fall and make mistakes and  laugh and cry with the fullness of life outside the theoretical bubble wrap which is supposed to protect us.

Oh, and those of you in “winter cities”… be careful on the ice!

I don’t know what it is, but lately I have seen a great increase in the mentality of “us” v. “them” – whatever form that happens to take.  There have been articles printed separating nationality, race, religion, political affiliation (if any), sexual orientation, marital status, number of children (if any), and on and on the list goes.  While by birth, preference, or biology, I fall into any number of similar or opposing camps, I can decide how I choose to treat those who are different from myself, starting with the one group of people who are very much like me – those who are visually impaired.

This observation – by pure coincidence – comes on the leadup to National Bullying Awareness Week.  Perhaps also by coincidence, I have stumbled across articles that have detailed some of the double standards placed on those who have low vision by those who have none and vice versa. I must confess, however, that I am not immune to this “us” v. “them” mentality myself.

I have started reading biographies of people who are blind or have low vision, and I find myself frustrated by the perceptions of blindness that pervade many of these pages, particularly by those with low vision.  I laughed out loud at Ryan Knighton’s antics in “Cockeyed“, but was embarrassed on behalf of other blind people when he detailed the week from hell at blind summer camp.  I loved Nicole C. Kear’s “Now I See You“, but again was slightly dismayed by her journey of denial due to her own perceptions of what other blind people were like.  Am I uncomfortable because I see myself or people I know in these pages?  Or is it closer to home?  Some of these writers are people with whom I should find kindred spirits, and yet I find myself jealous because some can see better than I can while – admittedly with a sense of humour – are detailing some of the worst stereotypes about people who will in all likelihood come alongside them when that precious vision is gone.

All of this is not to mention comments that I have seen (and occasionally made) about how sighted people “just don’t get it!”  My friend Gregg has best described the dichotomy of building bridges and doing our best, but he is completely right; we will never 100% bridge those gaps.

Molly Burke is probably one of the most well-known Canadians who has been personally affected by bullying.  She could choose to be angry at sighted people in general – how dare they insult her, taunt her, ridicule her? – but has chosen to spend her teenage years and young adulthood to bringing awareness to the effects of bullying.  On the flip side, those who get past the novelty stage of our blindness or visual impairment should likewise be commended – not for their charity (“Good for you for befriending the blind girl!”), but for their simple willingness to see us as people.

Are we all just so afraid of our differences?  Do we wrap ourselves up in righteous piety because WE have it harder than THEM?  How arrogant can we be?  While acknowledging these differences is not a bad thing and part of what makes our society so fascinating, we can’t wrap ourselves up in our differences at the exclusion of our shared humanity.  If we avoid lingo that is designed to inflame and enrage (ableist, racist, etc.), the more likely we are to all understand each other just a little bit better.

Many people assume that if you are blind and travel with a cane (or, in my case, an adorable guide dog), all you see is black.  This is actually not true, on many counts.  There are as many causes of visual impairment as there are blind or visually impaired people, and many have varying degrees of vision.

People I know who are totally blind often tell me that they see nothing – not black, just nothing.  Sure, technically, black is the absence of colour, but the truth is that black actually does have a form in the visual realm.

Personally, I have no vision in my left eye, but I don’t see black in it.  Since I have visual memory from higher vision as a child, I can tell you that, for the most part, I just see an absense of any colour – more of a bland gray, if you actually have to put a colour to it.  Also, I see a little light in the far left corner of that eye, not unlike a candle flame.  This is nearly constant, whether my eye is open or closed; thankfully it doesn’t affect my sleep!

My right eye is much more complex, because I had so many operations as a child.  I have enough vision to see light and dark, some sharply contrasting colours, etc., but everything I see is two-dimmensional.  I walk into a room and everything I see – people, furniture, my hands – look like flat pancakes.  So I could never confidently walk into a crowded hockey arena sans cane or guide dog and hope to safely find a seat without crawling over people simply because my visual perception is so skewed.

So why should you care?  Maybe you won’t, and that’s OK.  But I had a ten-second conversation with my boss this week that dumped my perception of myself and my eyeballs on its head: I am guilty of the very thing that I accuse others of doing, assuming that because my vision isn’t perfect, that it doesn’t exist.

I stepped into my boss’ office to follow up on an email I had written suggesting changes in spelling and grammar for a Word document he had sent me.  He thanked me, and said “That’s why I sent it to you; get another set of eyes on it.”  Without missing a beat, I replied, “Well, ears; my eyes don’t work!”  He paused for just a split second and said, “Yes, they do!”

I was so surprised I nearly dropped my coffee.  “What do you mean, my eyes work?  You know that I use JAWS to use a computer…”

He calmly told me, “Yeah, but you can walk into my office and know if it’s sunny when you look out the window; you get a bit blue if you don’t get outside during the daylight hours; you sometimes turn on lights if it’s dark and you’re the first person here.  So sure, your eyes don’t work perfectly, but they do ‘work.'”

What this perspective means for my life and my outlook, I just don’t know.  But I think, for the first time, I need to start looking at some of the double standards that I – and by extension others like me – have unknowingly put on myself.

In the past year working with a guide dog, as well as hearing stories from friends who work with them, I figured it’s about time that I did a post solely dedicated to all things dog-with-job, specifically the general public’s reaction to them.

Why Now?

If for no other reason than I have been bombarded with inaccurate information and/or tons of questions over the past week.  Sure, I’ve had persistent questions before – and probably always will – and inaccurate information given to me from well-meaning people who might have seen a guide dog on TV; but the sheer number of them lately has prompted this.

Guide Dog Attitudes/Etiquette

I have been incredibly blessed to not deal with many extremes on this front:

– People trying to pet my dog.

When a dog’s harness is on, even if she’s laying down, she is working.  Yes, she’s cute, but please don’t pet her.  Some handlers will allow their dogs to be petted in harness, but only if you ask.  I am not one of them; my dog can be easily distracted on occasion, and it’s generally a bad idea to pet a dog you don’t know anyway.  Some people use signs on their dogs’ harness that say “Please don’t pet me; I’m working” or something similar.  I choose not to, simply because the less visible she is, the less likely I am to run into people indiscriminately petting her.

– People being afraid of my dog.

I play goalball on a sports team – and work in an office – where someone is afraid of dogs.  I have learned to keep full control on my dog so that contact between her and these individuals is minimal to nonexistent.  I only rarely come across strangers who are at the very least audibly freaking out at my dog.  Granted, on the rare occasions she will bark in harness, her bark is BIG, but her presence alone is not exactly frightening.

– Well-meaning people who offer assistance and then try and grab the leash/harness.

I haven’t gotten this myself, but I hear of it often.  Just as you wouldn’t grab the back of someone’s wheelchair, just don’t… please. Thanks.

– People feeding/leaving food for the dog.

Thankfully, this has been nonexistent for me.  I had one person once ask if they could feed her some beef jerky, but hey, asking questions isn’t a crime, even if I cringe at the thought.  But I have spoken to others who’ve had strangers come up and start feeding their guides while they are sitting on the bus, or throwing leftovers toward the dog.  Just don’t…

– People talking to the dog.

This is probably the one I get most often.  Someone will say “Good girl” to her if she does what I ask, or tell her directions when we are following them.  If Jenny is focused, I say something later, but if she’s being distracted I will stop and make her sit, tell whoever to please not talk to the dog, get an apology, and on we go!

Common questions/comments:

– “What’s your dog’s name?”

I don’t give this out in public, though I am sure that if I give her commands or try and re-focus her, her name does come out.  Most people understand this and are not offended.  I used to think about giving a fake name that didn’t sound like Jenny, but then it would perpetuate talking to the dog, sooooo…

– “What breed?”} (along this line) “Lab?”} / “How old?” (along this line) “She looks young!”

Jenny looks young, and sometimes acts young.  And she looks ALL Lab.  I suppose people ask these questions because guide dogs and their training is so fascinating.  Most schools use Labs and Golden retrievers, but there are German Shepherds, Dobermans, poodles, and other breeds that are trained as guide dogs; teams usually finish formal training (either school-based or owner-training) when the dog is 18-24 months, though occasionally a dog will graduate much earlier or later, or a match just doesn’t work out and a team completes training when the dog is 2.5-3 years old.  I don’t mind answering these questions (black Lab, 2.5 years old, in case your curious).

– “My uncle’s girlfriend’s cousin has a dog like that; it detects epilepsy!”

That’s nice… so?

– “How does the dog know when the light’s green?”

This one makes me laugh.  Dogs see the world similar the way a red-green colorblind person might, and rely on their handler’s input to cross the street.  Last year I unknowingly told Jenny to cross a street on a red light because there was no traffic pattern to follow and no audible signal at that crossing.  A coworker told me later that “Jenny had made a big mistake.”  I told him that she did what I asked, because all the information I had said that it was safe to cross the street.  It was MY mistake, not hers.

– “Your dog is so protective!” (along this line) }Does your dog bite?”

Ironically, I get given the comment, but not asked the question.  I have started asking people if Jenny’s baring her teeth or showing other protective behavior, which gets the response of “no, she’s just watching, and she’s so focused on you!”  How is that being protective?  Curious minds, and all that…

– “Does your dog bark?”

Yes.  She’s a dog.  She almost never barks in harness – most guide dogs don’t bark in harness – but yes, she has the lung power and capacity and volume to bark, and convincingly, too!

– “How does your dog know when to get off the bus?”

She doesn’t; that’s my job!  Although, she has a pretty good judge of where we are.  Often times, if we go a stop past where we normally get off, she will turn her head to nudge me.  I haven’t decided if this is a signal that I am an idiot, that she has to go to the bathroom, or that she knows where we usually get off and wants to tell me that there’s a change in routine… I’ll keep you posted.
– “Does your dog ever get to be a ‘normal’ dog?”

um… Yes, most definitely! Guide dogs are, above all, dogs. They need love, praise, stimulation, and yes, playtime.  Jenny is living proof that a dog can have too many toys – our house is littered with squeaker toys, tug ropes, balls, bones, and a whole bunch of other stuff.  She will initiate play, but will drop a toy with a thud when I use the words “Not now.”  She is probably pampered too much by some guide dog handler standards, but she knows she is loved and what is expected of her.  And as for socializing with other dogs…

Jenny has a doggie… er… boyfriend? (picture courtesy of Benjamin Lang)

There will be further posts on guide dogs in the future – choosing to get a dog, why some people shouldn’t get dogs, access issues, traveling with your guide dog… but thanks for indulging my catharsis in writing an FAQ post.

I have a rather ambiguous and complicated thought process when it comes to celebrities with disabilities, specifically blindness.  I love their accomplishments – Kayaking the Colorado River, traveling around the world on a motorcycle, safely exiting the World Trade Center on 9/11, inventing an alphabet so that other blind people could read and write, or being one of the best-known musicians of all time – for the ability to allow all blind and sighted alike to dream big, defy seemingly insurmountable odds, and battle fear, the elements, and forces beyond their control.  But I think their celebrity can sometimes do unintended harm to those of us who simply wish to belong.

What about those of us who live the seemingly ordinary life?  Are our careers, marriages, families, hobbies, hopes and dreams any less valuable to society?  I would argue that, in our ordinariness, we are just as valuable as those who make huge contributions in literacy, sport, or the arts.  As much as I hate to admit it, our desire to succeed is an “inspiration” to many (“If the blind girl can get a good job, marry, or have children, then what’s my excuse?”)  Conversely, I am often asked if all blind people sing like Ray Charles or Stevie Wonder, or display remarkable courage, or – on the other end of the spectrum – are socially awkward, or need someone to care-take us.  Today I saw a blog post following up this previous blog entry, and I love the lively debates that posts such as this, and their follow-up engender.

All blind people are different, just as all sighted people are different, and few if any of us wish to be viewed as inspirational.  On one hand, we are commended (primarily by a sighted public) for doing what we would consider ordinary tasks and criticized (especially by “super blind people“) for not doing more.

So, are we inspirational for doing inspirational things?  By living our ordinary lives?  By simply being content?  Does blindness in and of itself make us – me – inspiring?  I can’t say I have all the answers; perhaps you, my ever-enlightened readers, can help me out.  But for now, I have to go back to my ordinary job, text my ordinary husband a “Have a great afternoon!”, and be thankful every day for my ordinary – inspirational? – life.

Now that I’ve turned the great age milestone of 30 years old, you’d think that I would be more secure in my place in the world.  Funny thing is, I think I belonged more in my teenage years than I do now.

Being blind makes me stand out, period.  Most of my friends don’t mention it, bring it up, or even skirt around its edges unless strictly necessary.  But walking around and living my life, I am ever more reminded of it.  Little kids ask why my eyes “don’t look normal”; adults ask questions about my guide dog or offer assistance.  I am sure that my sighted husband, friends and family are kind enough not to tell me about the public staring at me, which would probably make me become unglued.  Any blind person on the planet who doesn’t think they stand out, even just a little, clearly doesn’t understand human nature.

Some Ways I Don’t Fit in in a Sighted World:

– I don’t like most movies or TV shows.  To me, they seem shallow, and I can’t get a mental picture of what’s going on around the characters and why they do what they do.  I have also found that I am sensitive to and overwhelmed by sound effects in many movies/TV shows.  Ironically, I’m married to a HUGE movie buff.

– How I use a computer or cell phone differs from those who can see.  Many people ask questions about how I navigate programs, read email, etc.  Sometimes this makes me feel like a bit of a zoo exhibit, but for the most part I don’t mind answering questions.

– I navigate the world through sound, using a guide dog.  Even using a cane, sound was my best navigating aid.  If I’m standing around looking like an idiot, more often than not I’m listening to try and catch my bearings.

On the other hand, I am feeling increasingly isolated from the so-called “blind community”, that seemingly all-powerful populus of blind people.  I felt this a little bit in high school, a little bit once I graduated… but in the land of social media, I acutely feel my unbelonging.  I recently emailed with another “loaner” like myself, who for years has been the only blind student in their school, workplace, college, whatever; it’s with these people I feel I belong.

Several Ways I don’t Fit in in the Blind Community:

– I am not a technology brand die-hard.  When I was growing up, technology was a tool to get work done; today, it is everywhere.  The blind community populus tends to tout companies like Apple while slamming others simply because of mistakes that were made years ago.  If someone wants to use an Iphone, it works for them, great!, but don’t judge me for using something different.

– I try my utmost to stay out of drama.  The “blind community” is a very very very small world.  Remember that “Six Degrees of Separation” craze years ago?  In the blind community, it’s like 2.  I can meet a blind person at a goalball tournament across the country who knows my best friend’s boyfriend.  Many blind people get into relationships with each other, and the ending of such relationships gets messy because of the truly small nature of who knows whom.  Yes, some of the relationships work out, and work well, and I am so happy for those people, but I’ve seen several of my blind acquaintances date each other and break up and not be able to maintain a clean break.  Honestly, I stay out of it, which adds to some of my isolation.

– I do not online radio-broadcast, and don’t understand the appeal.  On my Twitter feed, I see so many advertisements for 3-hour slots on online radio stations.  If it’s one’s hobby, and one does well, good for them… but I don’t need to see it all day from those I follow on twitter, who for various reasons don’t appear to be interested in school or looking for work.

This is not to say that I don’t have sighted friends, or blind friends… but the friends I do have are strong, confident, capable people who enrich my life as a human being.  My sighted friends love me for who I am, and the fact that we just sit and talk for hours; my blind friends have shared their burdens with me, and I’ve called them on bad days where I just don’t want to be blind.  What these people have in common is their own sense of belonging in the world, the confidence to take what life gives them, and to stretch beyond their own comfy bubble, blind or sighted, to befriend a grumpy 30-something billboard for someone who’s different.