Tag Archives: independence

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.

X marks the Spot: On Voting, Dignity, And Putting Things Away

14 Saturday Nov 2015

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Nearly four weeks ago, Canadians elected a new Prime Minister. Citizens came out in droves to polling stations all across the country – so many, in fact, that at least one polling station in Alberta ran out of ballots.  But what often went unmentioned, except by those who experienced it firsthand, is an inconsistent process for voters with disabilities or mobility challenges.  For those with disabilities, who face discrimination and incomprehension on a regular basis, an overwhelming sentiment was felt that on October 19- a day when all Canadians were to be treated equally by casting their ballot – inequality still very much exists.

 

A Human Rights complaint was filed after a 2011 Federal election, after a voter who used a walker for mobility was forced to enter a polling station by going down a flight of stairs on his behind. A short time later, that same polling station was still in use, with the same barriers to access with walker or wheelchair. The Canadian government implemented changes for voters with disabilities, theoretically upholding the dignity of all Canadians. Four years later, progress had been made, but – as you will soon see – we still have a long way to go. Even though Elections Canada has made policies to accommodate voters with disabilities, many of these require advanced notice – whether it’s booking an ASL interpreter (if you are not able to bring one yourself) or having an Elections Canada volunteer come to your home so you can cast your ballot prior to Election Day. For Election day itself, independently accessing a voting booth is far from a simple or consistent process. From polling stations lacking clear signage for easy visibility, to inoperable or non-existent elevators, to volunteers not knowing about options for voters with visual impairments, it’s clear that voting is not as smooth for everyone as it could be.

 

I chose not to vote in this election, for a variety of personal and political reasons. But based on what several visually impaired friends have told me, the process was far from smooth or consistent. At best, one friend was guided from the front door, to filling out paperwork, to casting his ballot, and back out again. Some polling stations had large print lists of candidates with corresponding numbers, some had braille ones, some had neither. A template with braille numbers representing the candidates beside holes to mark your X could be used to hold a ballot, but there was nothing to hold the ballot in place – a potential for spoiling a ballot or voting for an unintended candidate. Many friends expressed concern over a lack of privacy, because an Elections Canada volunteer would have to place the ballot in the holder, then make sure the ballot didn’t slip. One friend of mine expressed shock that her ballot was taken from her and put in the ballot box on her behalf. Another was dismayed that she was grabbed and nearly dragged to the booth by an Elections Canada worker. Yet another had the misfortune of walking into the polling station and hearing (loudly) “Oh, here’s our first one!” and then having this same person direct all questions to her mother, who was there to cast her vote as well. Meagan even describes a completely bizarre requirement of having to write down the full name of the desired candidate – something that seemed unique to that polling station.

 

Voting is a right in this country. Perhaps because I chose not to vote, I have no right to describe or disparage the voting process. But the voters have spoken, and unfortunately, for many of the most misunderstood population, it was yet another way to be told that we aren’t quite equal, after all. I hope more steps can be taken in this country for equality for people with disabilities, whether it’s finding a job, raising a family, or voting in an election. But governments can only do so much; if attitudes don’t change, then I fear we’re just spitting into the wind.

Putting down my Sword: Why Not Everything is a Fight

05 Thursday Nov 2015

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Very recently, someone told me  in a roundabout way that I have a chip on my shoulder regarding requiring assistance from others.  After being shocked and slightly mortified by this thought, I started to think this might in fact be true.  What I decide to do about that chip, whether to ditch it all together or only use it as a fashion accessory when strictly necessary, will only come with time.

 

Everyone needs help with some things sometimes, but as it comes to needing something specifically because of my blindness, I hate being at the mercy of someone else.  Whether it’s reading a restaurant menu, filling out a medical form, using the convenience of a car rather than a long complicated bus route, or voting (hopefully next week’s blog post).  Requesting assistance with this feels so much like I am less complete, less whole of a person, that I find myself instantly on the defensive when I am required to ask for help for things like a computer not working properly, for directions to the bank, or other things that everyone needs help with sometimes.  My default mode has been “FIGHT!” for so long – fighting for education, employment, and (thankfully rarely) access challenges with my guide dog, that perhaps I don’t know how to simply just… well, to just be.  But I don’t want to go so far the other way, to expect people to do things for me that I am more than capable of doing for myself.  I fight that stereotype all the time, too, that I am not capable because I cannot see.

 

Some of these fights are external and necessary; they make us stronger, and (hopefully) educate a public who doesn’t know what to do with us, and help pave the way for those who come behind us.  Some of these fights are internal and necessary; am I, as a woman, doing all I can to be happy, healthy, productive, learning new skills and enjoying my life?  But a constant defensiveness doesn’t help anyone either; in fact, it alienates the very people we are trying to reach.  Asking for help is not, in and of itself, a sign of weakness… And yet… I still feel this way, and probably a little piece of me always will.  But my sword is being shelved for a while, because fighting myself under the guise of fighting against others is probably more exhausting than just being me.  To those I have hurt in this way, please let me know; we may not agree, and that’s OK, but I want to be viewed as a woman (not a blind woman); I crave acceptance alongside my autonomy, and may need your help to get there.  Perhaps I should take my own advice in a previous post: be quick to listen, slow to speak harshly, and keep an open mind.

I am Woman, I am strong, I am Deaf-blind

10 Saturday Oct 2015

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Have you ever wondered what it is like to be deaf-blind?  It’s been something I have been curious about since attending a summer camp with someone who is.  Since my post on deafness, deaf culture, and deaf-blindness only scratched the surface, I thought I would ask some of the deaf-blind people I know about what a day in their life is like.  Three wonderful women responded to my call-out for input.  They are students or professionals, single or married, with or without children.  In some ways, their life experiences overlap, and in others they diverge.  But they are all deaf-blind, and they live happy, healthy lives with hobbies, personal preferences, good and bad days.  they have learned – and in some cases are still learning – what they need in order to advocate for themselves, and have been able to communicate clearly.  In short, they are just like you and me. Thanks, Danielle, Tracy, and Rox’e, for being so open with your daily life, your hopes and your struggles.

Danielle

My name is Danielle and I am currently a Junior at Morehead State University in Kentucky, majoring in Elementary and Special Education.  I enjoy reading, swimming, running, and rock climbing.  I also happen to be deaf-blind.  I have no vision with mild to moderate hearing loss, and wear two hearing aids.   My day to day routine is for the most part a typical routine of classes, homework, hanging out with friends, etc.  However, there are aspects of my day that are unique to me as a deaf-blind person.

I use a guide dog as my primary travel aid.  My guide is a Special Needs guide dog who has been trained to accommodate vision and hearing loss.  She does not do specific hearing related tasks such as alerting to sounds, but she does have a lot of initiative in her guide work, which is essential since I cannot always rely on the sounds around me for orientation.  I get more information from what I can feel underneath my feet along with the ability to hold a mental map of familiar areas in my head as I travel.  I do use sounds to orient myself on the days that my hearing is fairly decent but since my hearing tends to change from day to day, how much I use it really depends on the day, time, and how tired I am.

Most people who meet me will be unable to tell that I am deaf-blind.  However, when there is a great deal of background noise such as in a cafeteria, loud classroom, and social gatherings, I usually cannot hear anything unless someone is speaking right beside me.  This also means I struggle to travel independently in these situations and often prefer to go sighted guide with a friend or family member and let my dog heel beside me.   In classes it can often be difficult, if not impossible, to hear classmates asking questions or answering them in the back of the room.  This sometimes can become very frustrating.  Luckily, I am becoming more and more comfortable with speaking up and letting people know when I can’t hear what is going on.   As a college student, I am often required to work in groups in order to complete assignments.  Many of these times it is done in class with multiple groups working at the same time.  This creates a lot of background noise, making it difficult for me to hear my own group and actively communicate and participate in the activity at hand.  As I participate in more and more group activities, I am gradually becoming more and more comfortable with being very clear with my group when I am struggling to hear them.  I find this to be very challenging at times.  Speaking up regarding my blindness has never been an issue but when it comes to speaking up when I can’t hear, I sometimes find it very stressful.   Fortunately, I have had some wonderful teachers who have recognized and understood the challenges I face in this type  of situation and instead of telling me that I did not have to do this, as is not uncommon, they continually insisted that I work in groups.  because of this, I can mostly function and participate in groups without being totally stressed.  I still get frustrated and a little stressed in these situations but I am able to work through it.  I still don’t enjoy being in places and situations where it is hard to hear but the more I’m put in these situations, the more comfortable I am.

Tracy

Tracy is a Canadian, but has lived in Oklahoma for the past several years. She blogs at http://www.deafblindconfessions.com

The bedside table’s light begins flashing and I roll over to turn the alarm off. It’s time to wake hubby and kids up for work and school. In the kitchen I pour juice into a cup until my finger over the rim gets wet and I stop pouring. Everything has a place for easier locating. But if it’s not, I’ll have to slowly look and feel other possible places it could be as “glancing around” doesn’t work for me.

After everyone’s left I go get ready for a morning outing. I apply my makeup by touch, being sure to smooth it all out (sometimes I think I’m just rubbing it all off instead). I lean in really close to the mirror to apply lip gloss. I then gather my purse and hat and wait for my ride. I usually use a white cane when I’m out, but when I have an SSP I rely on her instead.
My SSP arrives, she’s a Support Service Provider (or Intervenor in Canada). Her job is to be my eyes and ears, guiding me around & signing what’s happening in my environment, such as “there’s several people sitting in the waiting area on the left and the secretary’s window is on the right”. They do not make decisions for me or are “helpers/caretakers” as some assume.

At the store I tell my SSP what’s on my list. I hold onto the cart’s handlebar as she guides the cart from the side. She stops at the first item & describes the availability & prices. At the checkout she tells me the total as the register’s screen is too far away or turned around.
After returning home I put the groceries away and start prepping lunch. I have two cutting boards, one black and one white, this is for contrast. I cut light colored food on the dark board and vice versa. I have a brightly lit kitchen for best viewing and a range hood light over the stove, but sometimes I need to adjust my angle. Such as trying to see if the water’s boiling by looking sideways at the water surface. I “tactile” a lot, which is feeling around and “seeing” with my fingers. When cleaning the counters I wash it with a cloth then feel around the surface for any missed spots (bumps or stickiness). Getting around my home is easy as I’ve memorized the layout and its second nature now, but in the long hallways I use “trailing” which is using fingers or the back of my hand to trail the wall slightly ahead of me at waist level. This keeps me steady and straight and finds doorways.

For phone calls, if it’s to someone familiar like my husband or friends, I use a CapTel phone which captions the other party’s conversation through an operator and I read it on the screen. For other calls I use Internet Relay which goes through a Relay operator and she speaks what I type to the other party and then she types what they say to me. If I receive a phone call, or for other noise alerts (doorbell, smoke alarm, they are connected to a lamp that flashes the alerts. If I am away from the lamp or cannot see it, I also wear a pager that vibrates to alert me to the noise.

The kids get home from school. When they were younger, we used to sit at the kitchen table while they did their homework, and they’d ask questions if they got stuck. Now that they are older, I do what many parents do – “Got homework? Nope? Good! Don’t let me find out otherwise!”

Rox’e

Most people are awakened in the mornings – at least on weekdays – by the sound of their alarm.  For some it’s the news on their clock radio, and for others, a shrill insistent beeping which drives them mercilessly from the arms of the land of dreams.  Since I’m deafblind, my alarm is tactile.  Typical alarms wouldn’t work for me, neither would the special alarms designed for deaf-sighted people.  I need a more hands on— or in my case— paws on approach.

My face is snuggled into my warm pillow, when suddenly, the blankets are whipped away and a cold nose is pressed against my neck.  I want to ignore it, I’m still so tired.  I know from past experience, that this is a bad idea.  Before long, three dogs are piled atop me.  The golden retriever is poking me repeatedly with her nose, the lab has removed the pillows from under my head, and the Doberman is stomping on my legs…. Looks like I’m up!

When hearing or sighted people get ready for the day, it’s a multi-sensory experience.  Y’all are champions of the art of multi-tasking.  You eat your cereal while listening to the news and while checking email.

A deafblind life is a more linear life.  I can’t use my braille display to read email while eating cereal unless I want milk in a braille display, a several thousand dollar mistake.  I can’t brush my teeth while listening to the news.  I can’t walk and text.
I get ready for the day just like anyone else, but instead I do tasks one at a time.  I am a wiz at keeping to a schedule, and have time management down to a science.  The Keurig makes my tea while I prepare breakfast for the three hungry dogs.  I slide into my giant claw foot tub smelling of apples and sip a cup of very strong black tea, while trying to wake up.  My clothes are simple— I’m a tom boy and proud of it.  Everything I have matches everything else.  I throw on clothes, chuck my lunch and braille display into my bag, harness up Soleil— she’s the lab— and bribe the golden and the doberman with bones before running out the door.

The seasons are starting to turn down here in the southern U.S.  Soleil starts out almost at a run.  We wiz passed sidewalk cafes— quiet in the mornings.  She stops at the corner and we make the three blocks to the coffee shop in the blink of an eye.  I can smell the coffee, and decide I need a cup.  I tell her to “find the coffee,” and she makes a hard right.  We head to the counter and I hand the barista my phone and small keyboard.  He knows the routine by now.  A triple shot iced latte with almond milk, and a cran-orange muffin.

After that, we are out again, and arrive at the bus stop with a couple minutes to spare.  I set down my backpack, retrieve my braille display from its depths, and wolf down the muffin before loading the GPS app on my phone which will allow me to track the buses movements so I don’t get let off at the wrong spot.  I’m replying to a text from my coworker, when Soleil stands up and hip-checks me to let me know the bus has arrived.  We head for the door and she finds my seat.  I watch the streets go by in braille, and when we get to the right spot, I reach up and ring the bell, so we can get off and transfer to another bus.

Eventually, I arrive at work.  I’m working with N today.  She’s one of my favorite ASL interpreters and one of my best friends.  I tease her about her hair, after I check to see if she’s changed it.  The woman has hair ADD and is always doing wild and different things with it.

I use ASL tactually.  I place my hands atop the signer’s hands and touch them to feel what people are saying.  People ask me if emotions can be conveyed this way and I can say for sure YES!!  I have seen crying hands, angry hands, laughing and teasing hands.  Hands can scream, and they can also whisper.
My Orientation and Mobility class is going to the grocery store today, so we all go back out, load up on the bus, and my interpreter and I spend the next two hours stalking my clients through the grocery store to ensure they are safe.  The interpreter tells me things about the client’s use of their cane, interactions with the public, facial expression, etc.  This way, I have all the information I need to be an effective teacher.

Back to work we go, and it’s time for a two hour meeting.  Each person in my department introduces themselves with their sign name.  This is commonly a name that mixes a sign with the first letter of a person’s name.  My name is Rox’E and my sign name is the “R” handshake on each cheek because I have dimples.  Because tactile interpreting is so demanding, I have two interpreters for long meetings.  By the time this one is over, I’m exhausted, because while there are two interpreters, there is only one of me.

But there is no rest for the wicked!  It’s time to make groceries.  Many deafblind people use the services of an SSP.  SSP stands for Support Service Provider.  This is a person who acts as a Deafblind person’s eyes and ears in public.  Some SSP’s do sighted guide, others just explain the environmental goings-on.  Soleil has the guiding down, so my SSP is mainly responsible for driving and for describing things.

N is also my SSP.  We load Soleil into the back seat of her car, and after a quick stop for caffeine, we are off.  N’s newest musical craze is a woman called Meghan Trainor.  She sings a song called All about the Bass.  It’s not about fish, as I first thought, but instead is about the low sounds of music, and butts figure in there somewhere, but don’t ask me how.  N and I drive around, windows down, and she is teaching me the lyrics to All About the Bass in ASL.  So we drive and sign until we arrive at the store.

When we arrive, we get a copy of the sale paper, and she converts the written word into ASL.  She makes sure to point out all the bakery items on sale, and tells me that the muffins look good.  She’s bad for my diet!

We wheel the cart around, and as I’m picking out squash, some woman comes up to us and starts in on a long speech about me and how I’m so inspirational and that “The lord must have sent me to earth because I’m his special angel.”  I really try hard not to roll my eyes or to make a bad face but it’s a lost cause.  We make an escape from weird angel lady and head for the ice cream.  Someone stops to say that ASL is beautiful.  My SSP was just explaining to me about the kinds of toilet paper they have, but OK, beautiful toilet paper it is, then!

Eventually we make our escape, load the stuff back into N’s car and head back to my house.  N sticks my groceries on my porch, and I go inside to let the dogs out to take care of business.

While putting away groceries, I notice that N has gotten me a larger size of frozen peaches than usual and that she has managed to forget to put my muffins on the porch.  I bet they’re still in her trunk…

After letting the dogs back in and refereeing a game of tug between Soleil and Laveau, the doberman, I read email, make dinner, do the chores people all over the world do before bed, and crawl between the sheets.  My braille display is next to me, and I’m excited to continue my reread of Harry Potter for the fiftieth time.  My dogs nestle around me, Mill’E the golden on my feet, Soleil sharing my pillow, and the Doberman in her crate because snuggling is for lesser mortals.  Tucked in, surrounded by dogs, I fall asleep, readying myself for the day ahead.

Accessibility: A Right, a Privilege, or Plain Good Business Sense?

19 Saturday Sep 2015

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This morning, I received a text from a friend who invited Ben and me for brunch at a downtown diner.  As I had never been to this diner before, I figured I would search around and see if their menu was posted online.  I find this helps my independence in several key areas:

  1. None of my companions would need to read the menu to me. Most people don’t mind, but it seems that if I can do something for myself, I should.  Perhaps that’s the perfectionist in me, but it’s always a little awkward when someone reads the menu out loud in a restaurant (Confession: I always feel a little bit like a small child who hasn’t grasped the concepts of reading yet).
  2. I could think about what I wanted to eat, and if I changed my mind or someone recommended something awesome, I’d at least know what they were talking about and not worry about missing something truly yummy.
  3. If I go back to this diner (something I will DEFINITELY do) and decide to go alone, i would already know their prices (something important for a cash-only business), their breakfast and lunch options, and not have to ask serving staff to take time out of a busy shift to help me out.

I was thrilled to find their menu online, but was disheartened to discover that it came in the form of pictures embedded onto their web page.  As someone who uses screen reading software, I could not access the text that is part of those pictures.  Mildly frustrated, I took to twitter, which I now realize is generally an ambiguous thing, because everyone has something to say on the subject.

 

But what came out of a pretty heated exchange was an ultimately complex discussion about asserting the rights of people with disabilities, when demanding accommodation is unreasonable, and when it is better to catch flies with honey by requesting accessibility or accommodation as a good move for a business’ customer base as a whole.

 

I will never completely understand what it is like living my life, navigating in a wheelchair, but I have friends who do.  Many of them have expressed frustrations about apartment buildings with only one elevator, or workplaces where the accessible washrooms are on a completely different floor, or having to avoid shopping at certain stores because the shelves are too close together to safely navigate a chair.  If I ask a restaurant to pretty-pretty-pretty-please re-post their menu online in alternative format, or (a rarity) ask if they have a braille menu on site, this is an infinitely easier accommodation than requesting them to alter their building structure for accessible washrooms or replacing stairs with a ramp.  In no way am I saying that doing one means a business can’t or shouldn’t do another, but that one is more a matter of education than architecture, carpentry and physics.

 

So when do my rights end and a business proprietor’s begin?  When is a request for accessibility unreasonable, untenable and rude?  I don’t have the answers to these questions.  To say that accommodations should never be requested (or even demanded) means that would put disability rights and dignity back into the dark ages.  But to say that every possible accommodation can and should be made just for the asking brings us to a no-mans-land we’re in now, where businesses are afraid to address out-of-control fake service dogs and deny a legitimate service dog team service because ten minutes ago they kicked out a faker.  Ultimately, the more people who can access a business, the more everybody wins.  So the more who stand up and calmly explain that general accessibility – to the physical building structure, to a menu, or to the point-of-sale pin-pad – benefits everyone, the more likely a business is to take the request under advisement.  Maybe wholesale change won’t happen overnight, but nothing worth fighting for ever does.

 

I won’t bully or brow-beat, but  maybe I’m not the only one who can’t read the physical menu, and even the digital one.  I felt right at home in that diner, and the food was stick-to-your-ribs comfort food.  You better believe I’ll be back.  So I, for one, am going to contact that diner and request an alternative format for their menu.  After all, the food is great, and more people should eat there!

I’m a bad _____, But It’s Not because I’m Blind!

13 Sunday Sep 2015

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I don’t know what it is, but I run across many people in my daily life who assume that blind people are super dependent on others for every little life task, or can do anything and everything extraordinarily well.  To muddy the waters even more, there are subsets of blind people who have both spoken and unspoken rules of engagement for all blind people, regardless of ability, inclination, and work ethic.  One subset, affectionately dubbed “Super blinks”, act as though ALL blind people should have the skills to cook 4-course dinners, clean floors well enough for a Royal procession, and travel independently everywhere no matter what, asking no one for assistance for anything.  The other, a more defeatist point of view, feeds in to the idea that blind people should be insular and keep to ourselves, acknowledge that life is hard, and just embrace the hardships without doing anything to improve our lot in life.

 

Thankfully, most blind people I know and associate with regularly – both online and in-person – fall somewhere in the middle of these.  Some have terrific skills and are wonderful and encouraging, pushing me and others to at least try and do new things, without judgment or condescension.  Others have been kicked in the teeth by families, prospective employers, and even complete strangers, who are wonderful supports when life just sucks and a blind person feels like no one else “gets it.”

 

But what happens when people we know well, especially families or colleagues, assume certain lack of interest, ability or competence are the case because we cannot see?  A friend was over at my house a couple of weeks ago, and she mentioned a comment that was made to her about the cleanliness of her house.  She’s not the best housekeeper in the world, but it’s honestly not in complete disarray.  She said she wished people would just understand: “I’m a lousy housekeeper because I just don’t give a crap; it has nothing to do with my being blind.”

 

Recently, a news story about a blind mom in the kitchen made the rounds of social media.  It was touted as an inspiring story of a family coming together despite a very sudden sight loss, and a mother who cooks well – and enjoys it – despite not being able to see.  Molly Burke, a well-known Canadian advocate for the blind, responded to this news story by stating that she’s a bad cook because she hates cooking, not because she can’t see.

 

As for entertainment, there are many comments on my choices of leisure activities.  Personally, I don’t like TV shows much.  I have a few favorites, but overall, TV and movies don’t interest me.  I have always preferred to be transported to new places and meet new characters through books.  Many people tell me that my disinterest in such things are because I cannot see them.  I can’t possibly know if there is any truth to this, but based on how I view the world, I would say this is likely untrue.  If I had perfect vision, I doubt I would be fixated on the newest Netflix series, or the next Batman movie, just because much of what is out there just doesn’t hook me on an emotional level; an author at the height of their craft does that for me as well as good cinematography does for a movie buff.

 

So why do we make these comparisons?  Why do people who know us well assume that a disinterest or poor skills are because we cannot see, and not because we simply don’t care about such things?  A sighted person who doesn’t like cooking or doesn’t clean their house well is viewed as a person who just doesn’t like cooking or can’t be bothered to clean.  Why are we viewed as less capable because we have these particular preferences, foibles, or lack of interest?  And unless another blind person is so defeatist in all things, what business is it of mine (or yours, or anyone else’s) if they can’t cook that four-course meal, or require assistance to navigate the airport?

 

I’ve said it before: to my sighted readers, we are only human.  Especially if you love us, our lack of cooking ability, a tolerably untidy house, or our declining an invitation to the movies often has more to do with our own personal preferences than the fact we cannot see; please don’t throw it in our face.  For those who cannot see, and want to make yourselves feel better because you have skills that someone else doesn’t?  STOP IT!  Until you walk in their shoes, you don’t know the life they’ve led.  If they want your assistance, or you think that you can encourage them and they are receptive to advice, offer such with grace and empathy.  And those who just don’t care about anything, who are rude, who think the sighted world owes you because you’ve been dealt the hand of blindness: you’re making life for yourself, for me, and for all of us that much harder the next time we’re out and hope for assistance, a job offer, or that course we’ve dreamt our whole life to take.  I don’t expect everyone to get it right all of the time, but the more we view each other as humans, the more likely we are to be viewed as flesh and blood in return.

Pass me a Screwdriver… the Tool, not the Drink

05 Saturday Sep 2015

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Every now and again, life throws you some introspection, some minor way of making you look at your childhood and thank God, your parents, teachers, the neighbor down the street, or plain dumb luck that you were shown or taught something at an early age that made your adult life so much easier.  As a very young child, you remember thinking – as all children think – that everyone’s parents taught them how to cook four-course dinners, name all the birds in the sky, or (in my case) use hand tools and identify the size of drill bits by touch.

 

Last night, Ben and I put together a bookshelf.  Leaving aside the really annoying fact that the delivery company left an 8-foot tall box leaning up against our house, making it impossible to move it inside single-handedly from my 6-foot-wide porch, I was thrilled that our music room would soon have an additional book case.  As everyone knows, braille books take up an insane amount of room, and Ben’s huge collection of paperbacks are relatively scattered, with no set place to go.  So last night, we were putting our new shelf together with screws and nails, and (obviously) a screwdriver and hammer.  I had been struggling tightening a screw, so I opened the top of the screwdriver and grabbed the #3 Robertson bit… it worked like a charm!  Ben asked me how I know what we needed, and how I could tell the #2 from the #4, or a Robertson from a Phillips by touch.  I told him that my father taught me the basics as a child, and other friends along the way have had me set up stage sets and other things, and when I first moved out on my own I did most of my minor home repairs myself.

 

As a child, I thought it was perfectly normal to go down into my father’s workshop in the basement (and later the garage) and hand him tools while he was working.  But it was a rude awakening when I was about seven or eight, and I told someone to hand me the hammer so I could fix something or other.  The reaction was just priceless: “Um… no! You can get hurt!”  No amount of begging, pleading, telling them I’d fixed things before would make them relent.  I can’t remember the general outcome, or even what I wanted the hammer for in the first place, but I remember feeling so dejected; my father believed in my abilities, but no matter what, to this neighbour, I was still viewed as the blind kid who dared to want to wield a hammer.

 

Fast forward several years, and I had moved in to my own apartment in Edmonton.  My kitchen cabinets were loose, and I just grabbed a screwdriver and within five minutes they were good as new.  The empowering feeling is almost indescribable even now, more than ten years later.  When Ben and I bought this house, I took delivery of a new bedroom set, and put it all together, with the exception of the bed.  Little things come apart, and I can put them together again… and there are few better feelings of accomplishment in the world than simply being able to get them done.  This was all made possible because I was the daughter of someone who not only believed that I could learn about tools and perform these tasks, but that I should, whether or not I could see what I was doing.

 

I know that this blog has blind subscribers, and I know there are parents of blind children who read this blog; I may be preaching to the choir here.  Those who are blind, don’t let anyone clip your wings.  If your family does not believe in your abilities, I am so sorry… but don’t give anyone the power to tell you that you cannot do something before you try and succeed, fall on your face, or somewhere in the middle.  For parents, relatives, or friends of blind children (or even adults), please resist the temptation to jump in and do for them something that they may really want to do for themselves.  Would you deny a sighted family member an opportunity to make mistakes?  For most, the answer is no.  So if you have the skills, show them.  Give them the opportunity to fly.  I may never use a table saw, and that’s OK… but pass me that screwdriver… this table leg is wobbly.

Run, Fido, Run!

29 Saturday Aug 2015

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OK, I’m going to say something completely obvious: Guide dogs are bred and trained to be guides.  Well, DUH!  But in addition to being guides, they are dogs, with all the needs, desires and interests of other living beings.  In honour of National Dog Day earlier this week, let me introduce you to several dogs – including mine – who have some pretty cool hobbies .

From the get-go, Jenny loved her new fashionable gear

Jenny loves her sports harness so much!

Jenny is a runner.  She has a runner’s body with sleek lines and long legs.  If it were up to her, we would run everywhere.  Since six months of the year our sidewalks and streets are covered in ice, that’s a pretty scary proposition.  But about six months ago, when the snow melted and we had both experienced a severely prolonged  case of cabin fever, I decided to channel some of that running energy, get myself back in to running, and take her out for a short jog around the neighborhood.  I had a harness made for her that we use exclusively for running, and as time went by we increased distance, ramped up the pace, and threw in street crossings and other distractions and complications.  As of this writing, we have done two runs longer than 3 km, each a little bit faster than the one before, and I’m hoping to get up to 5 km before the snow sets in.  I listen to myself and my dog, and we decide together what the pace is, when we’re done, and afterward Jenny gets rewarded with a whole bowl of water and – depending on her mood – a seriously good game of tug or an extended nap sprawled in the middle of the floor.

But I am by no means alone in running with my guide.  Last week, Guiding Eyes dog Klinger became one of the first guide dogs to be trained as a running guide dog.  This article made the rounds of social media, and while I believe it does have some representation errors (no guide dog is “certified”, they are trained; and this guide dog team was also trained as a running guide years before Klinger), I think it’s great that guide dog programs are putting in the work for athletes who wish to bond with their dogs in this way.  As stated in one of the articles, many of us have trained our guides ourselves to run moderate distances, but if someone doesn’t feel safe, or doesn’t have the knowledge, skills or willingness to train their dog to do this safely, if trainers and schools recognize all the wonderful things that have and can come of safely running with a guide dog, the more independent a blind person can be.

But running isn’t the only “guide” sport that a guide dog can enjoy.  My friend Rox has owner-trained several guide dogs, and has run with many of them.  She has done agility courses with some and herding with others as a form of training, sport and recreation for the dogs’ “down-time”, and is currently laying the ground work to be able to go bikejoring and skijoring with her current guide, Soleil.  The ground work for some of these activities builds on the skills that the dog already possesses, but changes some of the feedback that a guide dog team gives and receives.

My friend Brooke has several dogs, and has done tracking, field work, confirmation, and other activities with them.  Due to a recent timing conflict, she found herself bringing her guide dog, Rogue, to a field lesson with Arizona (the “real” student), and decided to try fostering some healthy competition between the dogs.  It went well enough that she decided to work with Rogue on this skill, alongside the tracking and confirmation shows (and I’m sure a million other activities) she already has on her resume.

Some of these activities are enjoyed with the support of traditional guide dog schools; some can only be enjoyed by owner-trainers or under the radar, as a traditional guide dog school may deem them against a guide’s training, or unsafe for the team.  But at the end of the day, if activities can be enjoyed by a dog and its partner alike, can be performed safely with training either by a school or by the handler, and it improves the dog’s confidence and doesn’t affect the dog’s work, then let’s have at it!  I have found for myself – and Rox, Brooke, and many others have expressed to me – that giving our working dogs these physical and mental outlets, the stronger our bond, the more focused and confident the dog’s work, the more training tools we have as handlers, and the happier everyone is.  Now, if anyone can tell me how to keep every single neighborhood dog from barking at Jenny and I while we go running past…

Not devoted to Blind Devotion

22 Saturday Aug 2015

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I will be the first to admit that portrayals of blind people in books, movies, or articles tend to get my teeth on edge.  Contrary to what many might think I don’t expect a perfect portrayal of who we are, because we are all different, just like sighted people.  But perhaps even with the best of intentions, some of the worst stereotypes about blind people are perpetuated in these books, movies, or articles – that we are angelic inspirational beings for simply living our lives, that we require caretakers for everything from cooking to laundry to shopping, and if we do actually succeed at something it’s viewed as a miraculous feat tantamount to clearing tall buildings in a single bound.  These ideas are frustrating to those of us who live with blindness – and others’ perceptions of it – every day of our lives.

That having been said, few books, movie portrayals, or articles have concerned me quite as much as this video, largely because it’s been shared around the world as a “sweet tearjerker that shows what true love and “blind devotion” really is.

I’m leaving aside here the main character’s perception of what she can and cannot do as someone losing her vision; the anger and denial process are entirely normal, given a diagnosis like hers.  But the ending of the video infuriated me to no end.  It is viewed as sweet, and beautiful, and yet I find it ugly.  For those of you who cannot see (or just don’t feel like watching the video), this video ends with the husband following his blind wife to work every day without her knowledge.  We’re not talking about driving her to work, waiting in the car and watching her get in to a building before driving away; we are talking about physically following her on her walk to work every morning because (I presume based on the video) he doesn’t think of her as capable enough to do it on her own.  As a blind wife with a sighted husband, to me such behavior borders on stalking, and is not adorable and kind, but such a blatant abuse of trust that my blood is boiling even thinking about it.

Committed relationships (marriage in my case) are beautiful, messy and sweet and heart-breaking and restorative.  Relationships are not perfect, whether or not one partner has a disability.  Even if everyone disagrees on acceptable/unacceptable behaviors in any given relationship, I can think of no one who would disagree that trust is a foundation for any successful relationship.  It is one thing to stumble and fall, or be unintentionally hurtful, but to knowingly use your partner’s blindness or deafness to your own advantage – even while fooling yourself into believing it’s being done for their benefit – can shake a relationship to the core when your disabled partner finds out about it (and trust me, we’re not fools; we WILL find out).  Creating an admittedly fictional video as a feel-good look at what “true devotion” really is makes those of us living with blindness choke on the phony sweetness it’s meant to portray.  I have two questions for those who made, produced, and touted this video as sweet and romantic: How would you feel if your spouse went behind your back and, by their actions, showed the entire world – everyone but you – that they viewed you as incapable?  And what if you found out about it weeks, months, or years after the fact?  It isn’t so adorable and sweet now, is it…

If you Want it Done Right, you Do It Yourself… or Ask Someone Else to…

25 Saturday Jul 2015

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Last week I posted on my facebook status a question about which blog topics friends, family and readers wish me to cover. One topic brought up a HUGE level of discussion from blind and sighted friends alike:
When is it appropriate for a sighted person to say no to a request from a blind family member or friend? When is saying no selfish? When should the blind relative/friend take responsibility for themselves and be as independent as possible?

I took to Twitter and asked the question, and the level of responses was astounding. Ultimately, the answers went something like this (and I am inclined to agree):
1) A blind person should do whatever they can to be independent, but (just like sighted people) may find certain skills hard or challenging. Ultimately, making a concerted effort without resounding success is one thing; not even bothering to try in the first place is another.
2) A sighted relative/friend is within their rights to say no to requests if the requests are too frequent, unreasonable, or for a task that the blind person is clearly able to do for him/herself.
3) It IS selfish to say no if the task cannot reasonably be completed by the blind person. For example, if a blind person tries to get a restaurant’s menu online before going out for dinner and finds it inaccessible (embedded picture menus are very common), leaving them twisting in the wind and asking an overworked waiter to read them the menu while you’re sitting right there is unreasonable.

That having been said, it all depends on the friendship or family dynamic. Many sighted people are too quick to step in and do for us what they THINK we cannot do for ourselves; others have super-independent blind friends or relatives who insist on doing everything even if it’s not expected, reasonable, or even requested. My relationship with my friends and family has generally clear boundaries, not because of my blindness or their vision, but because all relationships are give and take and (I hope) communicative. For example: I fold laundry in my house (whenever I get to it); Ben folds the socks. Ben HATES folding clothes, and I don’t mind putting my mad organizational skills to work figuring out how to squeeze that last T-shirt into the dresser drawer. It takes me FOREVER to fold socks, and even then I can’t be sure they match; what takes me an hour with mixed results takes Ben five minutes. We’ve found it a generally fair tradeoff. When it comes to restaurants, if I can’t get the menu online ahead of time, any sighted companion who is dining with me will read me the headings (soups, sandwiches, pastas, wraps) so I can get an overview of the menu without having the whole thing read to me when all I want is pizza.

At the end of the day, it’s up to me, and others, as blind people to do whatever we can reasonably do for ourselves, and politely advocate when things are unnecessarily being done for us; it’s up to friends or relatives to tell us when our requests for assistance are unreasonable (too frequent, cutting in to personal time, without reciprocity). For every person and relationship, the specifics will be different (I love that my husband can cook, but I do some mean cooking myself; others might find cooking scary, challenging, or incomprehensible, and that’s OK). At the end of the day, communication on both sides of the blind/sighted continuum will make boundaries and expectations perfectly clear. So to my blind readers: do what you can, make an effort, ask for help when needed, but be generous with your thanks and mindful of time commitments. To my sighted readers, love us enough to tell us when we ARE being unreasonably “needy”, ask us what you can assist with or if our struggling with a task is necessary so that we can improve it. To everyone, sighted and blind, be quick to listen and slow to speak harshly, and keep an open mind.