I would like to think that I am not totally socially awkward; I am sure this is true for all of us.  But when one is blind, one misses some of the visual cues inherent in human interaction, which can sometimes lead to awkward situations.  On the flip side, people try SO hard not to hurt our feelings that we do get offended, or worse, end up unintentionally continuing awkward social behaviors ourselves.

More than once I have been in a room, chattering away with someone, and they just leave the room without telling me, leaving me talking to the coffee pot and a bunch of empty chairs.  Thankfully, most people I interact with regularly apologize profusely and seldom do it again.  Sometimes people stumble all over themselves, trying not to offend me by using words such as “see,” “hear” and “look” (and “blind” MUST be avoided at all costs), and wind up making themselves sound ridiculous and occasionally being offensive in the process.  With these, I try and put them at ease by just telling them to use such words; I am not offended, and if I am, I would tell them.

But what if I, as a blind person, miss the mark and DO something socially unacceptable without realizing it?  I would like to think that people in my life would tell me, kindly and privately, that XYZ isn’t appropriate/professional/whatever.  Not long ago, someone I know went on a social media rant about how sighted people just don’t get it, and they should be able to wear their hair or dress how they wanted in a professional setting.  Without knowing the whole situation, someone had told her that how she had her hair was not professional.  There are, of course, appropriate times, places and words to address the issue – in the middle of a meeting in front of 20 other people obviously isn’t one of them – but I see nothing wrong with being taken aside and hearing something like “I don’t know how to say this, but when you come into the office, perhaps keeping a comb at your desk might keep your hair neater after coming outside from the wind/rain.”  This both addresses the issue without being offensive, without putting a blind person on the spot and on the defensive, but also telling them that something needs to change.

Yesterday, I had an instance with my boss that really annoyed him.  It wasn’t a big deal to me, and ultimately wasn’t a huge deal to him, but it concerned him enough that he took me aside and simply told me the truth.  Was it embarrassing?  YES!  Am I ultimately glad that he did it?  Yes!  Do I wish more people have the guts to take us blind people aside and tell us kindly but firmly that even though WE don’t see certain behavior or dress as unprofessional or unacceptable, that it really is?  You bet!

It is very easy to get defensive; no one likes to be called out.  But after the initial embarrassment, we will be better for it.  We will be stronger, more professional, and more easily able to blend in with the public.  Sure, we will walk around with canes or guide dogs, put large print closer to our face to be able to read it, request braille menus in a restaurant… but let’s not give any further reasons to make us stand out and look unprofessional, uncoordinated, or just like we don’t care how we come across to those who serve us, befriend us, or (we hope) employ us.

I hit a severe case of writers block this week – something that happens on a fairly regular basis – but two other blog posts have made me question yet again my ideas about being an inspiration. Am I inspirational because I happen to be blind and married and employed? Or is it because I have fought despair, unemployment, family members’ illness, fractious family dynamics, or others’ perceptions of my capabilities? I suppose the difference is that you would know the former about me either on sight or within two minutes of talking to me; the latter takes a lot longer to drag out.

I think the difference is in the perpetuation and the audience of whoever is making the “you’re so inspirational!” comments. Sure, it’s frustrating to have to explain to a stranger that it is not a Herculean effort to put on a coordinated outfit in the morning, but it is a way to show one person that we are, above all, human. We are neither so beaten down by life nor an embodiment of Daredevil, and we can explain this; hopefully that one person will be able to take that with them through life and correct others’ perceptions (“I once met a blind person, and she was witty/sarcastic/having a bad day/smiling… just, well, normal!”). Unfortunately, if a blind person is in the media, it is for one of two reasons: something bad happened to them (being denied service because of a guide dog, falling off an LRT platform), or they are “overcoming insurmountable odds” to open a restaurant, sing the national anthem at a ball game, or becoming a state’s first Supreme Court judge.. Perhaps because of this, the perceptions of our accomplishments and our setbacks are magnified by the mere reach of such pieces, thanks to social media and the Internet.

My friend Meagan wrote a terrific blog post about the media perception, generally with grace and compassion and an even hand.  However, I have read tweets and facebook posts about how the media just doesn’t get it, is patronizing; perhaps I have even made them myself.  But on the personal inspirational front, a recent blog post by a friend of a friend of a friend made me rethink my own thoughts about being inspirational.  Maybe I am inspirational because I am human, because I push and struggle and triumph, just like everyone else.  So if I AM inspirational, just remember, that so are you, and so is everyone else.

Many of you who have known me for a long time have known that for the past several years, I have taken part in a Paralympic sport called goalball.  It has given me many opportunities to train, compete, and learn lessons both on and off the court that I might not otherwise have encountered.  I have made no secret of my love of the sport.  What I have kept reasonably quiet (apart from my husband, several close friends and family) is that after last week’s Canadian National tournament, I have decided to hang up the jersey and pursue other interests that have gone by the wayside while traveling 8 hours round-trip to practice most weekends.

Almost every year (usually around February), I get sick of the bus trips and make noises about not coming back next year.  Ben has always been supportive, giving me the room to make decisions that would give me such joy, while at great sacrifice to himself.  But this year has been different for several reasons; we both came to what turned out to be an easily-made decision to let it go.  I still enjoy the sport, and that will probably never change.  But (without getting into personal nitty-gritties), the investment of time that I put in is no longer paying sufficient dividends to be worth the cost.

After Nationals, I had the privilege of having a great chat with two wonderful women who have both retired from Parasport.  They will both likely be a great source of encouragement as next year’s season starts and I am not out on the court.  I’ve been told that the first year is often the hardest, because even though there WILL be other things filling my time (friends, family, beading, curling, music), a HUGE part of my life will be gone.

At first, I dreaded giving back my tournament jerseys last weekend.  While it was a bittersweet feeling, it is also freeing in its own way.  I can sleep in on weekends (as much as Jenny will let me), stay up late playing games with friends, go running with my guide runner, take up curling next winter, make cute bracelets and earrings from designs I dream up, sit at the piano and create music or reinterpret old favorites… the possibilities are endless.

Goalball had its time, and for the most part I would say that it’s been worth it.  The lessons I have learned about athleticism, sportsmanship and commitment are invaluable.  But now it’s time for other things – and people – to pour into my life.  Join me on this exciting new journey!

Last week, I wrote a brilliant (or not) blog post on the expectations of my capabilities by extended families which are brought center-stage during the holidays.  This week, I had a conversation on Twitter which brought to mind the idea that many blind people have expectations of our own which are going unmet.

This week, Apple released its Apple Watch, and the blind community was all aflutter because Apple store employees were not familiar with Voiceover (the screen reader software built into IPhones).  Here’s a sample tweet:

Now, should employees know what is pre-loaded onto their devices?  Yes!  I wouldn’t want to buy a computer if I didn’t know if any software was included or what version of Windows it runs.  But perhaps because the blind community can be considered a bit of a small world where everyone knows everyone else), I have seen a lot of flack given to store employees for not instantly knowing about something only a small market share of their customer base rely on.

This is just one example – admittedly not life-threatening – of expectations not being met.  But do we not do the same things sometimes ourselves?  If we’re not treated the “right” way, do we not get offended?  If we are asked questions about how we perform everyday tasks, do we not sometimes sigh heavily in answering the same questions again and again?  If we have a job interview, does our blood not sometimes boil when we are told that we can’t possibly use a computer, and we have to not only describe how we can but act like a trained monkey by demonstrating these skills?

And yet the general public fears what they do not know.  I’ve stated this before, that vision impairment is feared more than death.  So few of us exist that we sometimes need to take a step back and realize that just because WE know 50 other blind people, the general public will seldom encounter us.  Do we have the right to be treated like adults?  Yes!  Do we have the right to be left in peace to go about our shopping, eating, walking, living?  Yes!  Do we have the right to be considered for jobs for which we are qualified without jumping through hoops?  Yes!  But until such point as we are considered humans first and disabilities second, that’s not likely to happen.  So do we not have bigger problems to worry about than weather a high-end brand’s store employees know exactly what this built-in software is, how to activate it, and how to walk people through it?  I think we do…

I have a love/hate relationship with holidays as it comes to family dinners.  Sure, some of this is the result of distant, fractured or toxic family relationships, but I find that holidays tend to bring out the lowered expectations of me as a blind person.  More than once, I have found myself banished from the kitchen because it is “too small” or there are “too many people” or “nothing needs to be done” (even as I notice that everyone else has a role to play in the family dinner).  It is a pretty lonely yet awkward place, because I feel like I am just there to eat; standing up for myself might be problematic because I think I know why this is being done.

Does this come from a good place?  The answer to this is usually “yes.”  No one in their right mind would want a blind family member to cut their fingers while slicing vegetables for a salad, or scrape their  knuckles on the cheese grater.  But these events CAN happen to sighted people, too, so what is the big deal?

I don’t have all the answers about the best way to stand up for myself.  Sure, I could say something, but how do I say it beyond “I’m not a helpless child… give me the potatoes”?  I could invite people over to my house, but the last time that happened, the entire family took over my kitchen and it didn’t even feel like mine anymore.

The end result of lowered expectations in a family setting does, unfortunately, perpetuate a problematic dynamic in which the blind family member(s) are viewed as less than competent in other ways, too.  If we are incapable of slicing carrots or boiling soup, then there is no way we can be viewed as competent employees, students, parents, or spouses.

Are there things we do not succeed at?  Of course!  But that in general has little or nothing to do with lack of sight.  It is most likely due to our experiences, desires, or shared humanity.  Mistakes happen, so let us make them, and don’t think of us as less-than-capable, especially the next time you slice your finger open while cutting a carrot.

Got your attention?

Good!

The title of this post is the first – and only – time I will tell an untruth to my readers.  This is in response to a post entitled “5 Reasons why Guide Dogs are a Terrible Idea.”  I HATED this title, but agreed with the blog post, at least in theory.

Recently, a blog post describing some of the “little” drawbacks of using a guide dog made the rounds of social media and email discussion groups frequented by the blind community.  It caused quite a stir, with varying reaction, from full 100% support to outright disagreement.

I fall somewhere in the middle.  I think guide dog schools have a responsibility to their students to let them know what they are getting into – good, bad, inconvenient, wonderful.  In my experience – admittedly short in comparison to many – this is not being done responsibly by many guide dog schools.  The benefits of guide dogs are shown to students and sponsors, but the process of getting to the point of a seasoned partnership is glossed over or under-explained.  I have felt the frustrations of a first-time handler when I had a super-distracted scavengy dog, not the Hallmark guide-doggie angel, and I have seen it in other first-time handlers.  The frustration and discouragement can be immense, especially when one feels alone.  That being said, having a guide dog is NOT all doom-and-gloom and inconvenience.  I am a good traveler, but I hate traveling in snowstorms, such as the 3 inches of snow we’re getting today, the first day of spring.  I love the challenge of teaching my dog something new, and her absolute joyousness when she “gets it.”  I love having pedestrians ask for directions and take me seriously, because for some reason my dog has magically given me extra IQ points or a better sense of direction.  For me, the tradeoff is worth it.

But at the end of the day, a blind person has to make a choice for themselves, and – with one exception – it is not mine to comment on.  My friend Meagan has some very well-thought reasons why a dog isn’t right for her, whether that’s for right now or permanently.  Another friend admits he would LOVE to be a guide dog handler, but recognizes that his living and work situations are currently not conducive to working with one.  I know others who, for complex reasons, have worked with a guide and realized that it doesn’t work for them, either returning the dog early or letting their dog finish its working life and not returning for a successor.  Without exception, their stories are heartbreaking and emotionally complex, because an emotional bond alone does not make a guide dog and handler a good team.

Having a guide dog is in many ways like having a 5-year-old child with above-average problem-solving skills.  Sometimes they are perfect little angels; sometimes they just don’t want to behave because that dropped peanut butter sandwich or that dog halfway up the block is much more interesting; sometimes they have valid reasons for their “misbehavior.”  Recently, I have also learned that being a guide dog handler is a bit like being a detective, piecing together the clues about why the dog is doing XYZ – is it an alarming behavior problem, or signalling an accompanying medical concern?  If one chooses to have a guide dog, one needs to be willing to work through serious issues – whether alone, through peer advice, or with guidance from their guide dog school – and if they cannot be worked through, to acknowledge this fact.  One also has to be willing to work the dog, period, giving the dog sufficient challenge as to keep their training sharp, and sufficient routine as to give them stability.

I LOVE having a guide dog, inconveniences and all.  Sure, going outside in -40 so my dog can pee is annoying, but she’ll keep me safe in that snowstorm when we have to walk home this afternoon.  Training or re-training new or rusty behavior takes time – sometimes a little, sometimes a lot – but nothing makes me happier than that wagging tail and upturned nose before I get a chance to open my mouth and praise her.  Few things are scarier than KNOWING there is something wrong and not being able to pinpoint it; few are as comforting as knowing that, in its own doggie way, your guide is communicating with you.

Many of my readers are friends and family of those who are visually impaired, those who use guide dogs and those who do not.  Training with and working a guide dog is not as simple as it has been portrayed, nor is it constant drudgery.  Please allow your loved one to make a choice that is right for them; whether or not you agree, few things piss off a blind person more than the constant comments about having a dog (whether it’s questions about why one doesn’t have a dog, or constant comments about the dog they have).  For my blind/VI readers, do what keeps you safest and makes you feel secure.  I’ve been where you are, whether using a cane or a dog; keep calm and carry on!

One of the things I often get asked is how I navigate my world, not being able to see.  How do I stay safe with traffic whizzing down the street, avoid trees in the middle of the sidewalk, or just know where I am and where I need to go?  Whether with cane or dog, my answers generally remain the same: walk confidently and, if all else fails, fake it!

Most blind or visually impaired people receive some type of Orientation and Mobility (O&M) training; orientation is knowing where you are, mobility is knowing how to move around.  A cane will hit obstacles in the path or indicate changes in elevation (such as curbs), and a dog will guide around them.  As for traffic, one needs to listen for cars, the direction they are going, as well as other clues such as pedestrians or audible signals if available.  Personally, I have always had decent O&M skills, and really think that more people should make use of O&M training, or at the very least ask questions of others in unfamiliar areas to enable more fluid travel.  Perhaps I have nerves of steel, but I find that the more confidently I walk, the more choices I have in who I can ask for assistance should a situation arise in which I WILL need directions or further information, and it does happen.

As a cane user, I found that people seemed to be very quick to come to my rescue, even if it wasn’t required.  If I needed assistance, I had a small posse behind me, wanting to be ever so helpful as I would walk down the street or through the mall.  But I did run into situations (particularly in winter) in my neighborhood – a veritable labyrinth of intersecting streets, angled roads, and avenues with the same name – where I needed to ask for directions or call my husband to bail me out.  I hated it so much, because I felt that meant there was something wrong with me.

Having a guide dog has made getting lost much more of an adventure and much less of a scary process, because I feel like there are two heads to figure out what got us into this mess and how to get us out.  There have been times I have let Jenny take some control and she has gotten us super lost, but I gave further directions and we got unlost almost immediately.  Other times, Jenny has  located places we needed to go on a route we had never traveled previously, or gotten us back to a familiar place after wandering around aimlessly in open spaces for half an hour.

Whether a blind person uses a cane or a dog, we DO get lost, make mistakes, or have to ask directions.  There are times that no amount of preparation will prevent this, and other times, as my friend Meagan discovered recently, where a bit more preparation is in order.  Either way, getting lost does happen, and we simply need to have the confidence to pick ourselves up and keep on going.

My friend Holly recently wrote a brilliant blog post about getting lost and asking for directions.  She has not always been the confident traveler she is today, but simply says that there is nothing wrong with asking for help in a pinch.  She also qualifies this by stating that it is essential to maintain the skills of observation and navigation necessary to be independent, and I could not agree more.

Many of my readers are blind or visually impaired, and I am probably preaching to the choir; those who can see, may I offer these words of wisdom?  If we do require assistance, it is not a shame; if we don’t, please take our word for it.

Having worked with a guide dog for nearly 18 months, I have lived a pretty charmed life as it comes to access concerns.  I have had a couple of concerned fast-food restaurant cashiers express their worries about Jenny having an accident on the floor, had a cab company’s customer service rep make the unfortunate decision to refer to Jenny as my “pet”, and was once the center of a brief discussion between a Dunkin Donuts employee and another customer.  But beyond that, for me, it has been relatively smooth sailing.  I have no illusions that I am fortunate; others have been turned away from airlines, restaurants and taxis simply for using a service dog to aid their independence while living with a variety of disabilities.

We have come a long way since the first guide dog handlers fought for access to public places, and still evidently have a long way to go.  But a proposed amendment to an Arizona bill could have set service dog access rights back over 25 years, and set a pretty scary precedent to overturn federal laws.

In a nutshell, apparently Arizona has seen a proliferation of fake service dogs – “bad actors,” according to the representative who proposed the amendment; also, legitimate service dogs apparently present a profound risk to the general public.  His response to this was this bill, which – among other scary prospects – would have granted restaurants the right to post signs stating that service dogs were not welcome (an irony, since a major population that use them can’t see well enough to read such prejudicial signs).  It would also require individuals with disabilities and their service dogs to be licensed through the Arizona Department of health Services, a permit which would need to be renewed regularly.

An urgent message went out over Twitter and Facebook on Wednesday night, with many very angry guide dog handlers at a loss for words.  Many Arizonans who use service dogs – guide dogs, mobility dogs – turned out in force on voting day on Thursday, living proof that the phantom problems that are alleged to exist are miniscule in scope.  The bill was ultimately voted down, even by the representative who first proposed it.

I breathed a huge sigh of relief on the news, not because I have a burning desire to visit Arizona but because if other states (and ultimately the US federal government) follow the lead of this bill it would make it legal for a business to deny me access purely based on my disability.

I love the fluidity, the teamwork, and the independence of traveling with a guide dog.  If someone is very allergic to dogs, I do what I can to keep a distance, and make extra sure that Jenny doesn’t start playing Doggie for Mayor.  A Fear of dogs will make me vigilent about keeping her close to me and as low-key as possible.  I am not unsympathetic to those who have very real allergies, and very real gut-level fears, but Jenny has kept me active, mobile and safe for the past 18 months.  Thousands of dogs like her are doing their jobs all over the world, and so long as the dogs are behaving and under control, they should be permitted to continue doing so.

Oh, and by the way?  I have never come across a “fake” service dog…

Beyond my blindness, which is fairly visibly obvious, one of the first things people notice about me is the ring on my left ring finger.  Many of them will say something about me being married, and the topic comes around to the fact that my husband is sighted.

“Oh, that’s great!”

Are they happy that I am married, happily, to someone who loves me?  That I share my life with someone who carries me through dark times as I try and do for him?  That we own a house, laugh at the antics of my guide dog and our three cats, cook, clean, bicker, smile, laugh, share hobbies, misunderstand each other, argue over money or sex or in-laws, smile and nod at little quirks that we just accept about each other?

Or are they happy that he can see?

Thankfully, Ben has told me that we don’t often get people staring at us, unless he is walking me into tables and chairs (something he has struggled with since we started dating).  There are no noticeably pitying looks, or no outward looks of admiration…

But it is not uncommon for me (and others with sighted partners) to hear comments about how great it is that their mate is there to “take care of them.”  Sure, he cooks a mean lasagna and picks up groceries, but I do laundry and clean the bathroom; if that’s taking care of me, then my contributions to our household are obviously considered “lesser” than his.  Often times (though this is not unique to my husband), staff at stores or restaurants will ask what “she” would like.  Few things annoy me (and him) more, so often times I will assert myself, or he will direct whoever to speak to me directly.  Ben says he often gets questions about how I can read, what I do for work, or if I have a dog – questions that are par for the course when people meet or hear about a blind person.  What is incredibly disconcerting is that it is assumed that Ben is my friend, and my blind guy friends are my FRIENDS (my emphasis).  It has never been said in Ben’s presence so far as I know, but I have gone for coffee or worked out with blind male friends, and it is assumed that they are the giver of the ring on my finger.

My friend Meagan is engaged to Gregg, who is also blind.  I have known them for quite a while now, and find them cute.  Not CUTE (“Oh, the little blindie couple!”) but cute (two people who care about each other and still make each other smile despite distance, time and any difficulties that come their way).  She says people do think they are adorable in the blind-couple sense, but are alternately upset that Meagan and Gregg (Meagan in particular) don’t have someone to take care of them.  It’s a double-edged sword, contingent on the idea that a blind person needs someone to watch over them; it is not a matter of finding someone to love, who happens to be blind (or sighted, in my case).  My friend Alicia agrees, going one step further: “First time someone learns I was dating, especially if the curious person was a parent or family member, that was the first question out of their mouths. I used to get angry and ask them why that was their first question, now I just answer it and move on. Usually their second is, what caused his blindness,” she says.

Conversely, I do know other blind people who are resistent to the idea of dating someone sighted, and seem to carry a resentment for those of us who have.  On one hand, it appears that blind people with sighted partners enjoy a certain elevated status; on the other, it is assumed that we think we’re too good to “stick with our own kind.”

This conundrum is not unique to the blind, however, though according to one friend we are the only ones who get frustrated by questions about the vision status of our partners.  She is deaf-blind, and says “in Deaf or Deafblind culture, it’s very normal to ask. And expected that partner is Deaf or DB. Blind seem to get mad if asked.”  She is in a relationship with someone who is deaf; they can both communicate with sign.  She says that 90% of “culturally deaf” (people who are either deaf themselves or have a familial connection to deafness, like a child of deaf parents) are in a relationship with others in the same community.  I found an interview that seems to bear this out, with a woman named Michele Westfall who has chosen to fully embrace deaf culture with her husband and children.  On the other side, Kristen is married to a hearing man, and she says she thinks it is expected that he takes care of her.  There is a possibility that any children they have will be born deaf, or they may be born hearing; either way, she hopes to teach them about the value of sign language and the unique nuances in the deaf community.

Ultimately, it puts both deaf and blind in an impossible situation.  We are either being taken care of by our sighted/hearing spouse or are too limited or insular to be bothered even trying to break away from the blind/deaf cocoons (real or imagined) that are placed around us by ourselves, our families, or society.  Our sighted/hearing mates are treated as heroes for giving up their lives to take care of us or are thought of as lesser beings for dating or marrying someone who isn’t “normal”.  If we happen to find a partner with whom we have deafness or blindness in common, there is always the niggling thought that we are perceived to be unable to do any better, so we intermarry out of a desire not to be alone rather than a deep love for one another.  More than anything, this thought scares Meagan the most.

The next time you encounter me and Ben walking through a shopping mall, or hear Meagan and Gregg perform in a restaurant, or see Michele Westfall and her husband and family signing while at a sports game, or listen to Kristen and her husband talk over a cup of coffee, just remember that we are all just like you and your partner.  Our joys, sorrows, inside jokes and petty grievances are no different from your own.  In any healthy relationship, there is care-taking, and some insulation from the outside world; whether one’s partner can see, hear or walk, we all just want to be treated as though being loved is the greatest thing in the world… which, after all, it is!

CORRECTION: Michele Westfall is not married at this time, and was kind enough to correct me for my mistaken perception.  In any event, my opinion still stands that a deaf couple still deserves the same happiness, respect and autonomy as a hearing one. 🙂