Author Archives: blindbeader

Fixing what Isn’t Broken: Simming, Surgery, and Psychology

18 Sunday Oct 2015

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“Hi! My name’s John.”
“Hi, John.”
“I couldn’t help noticing that you’re blind.”
“Yes, that’s true.”
“I read this awesome article in a scientific magazine about the research they are conducting on curing blindness.”
“Wow! That’s interesting.”
“Wouldn’t it be awesome? You could see everything around you! It would make your life SO much easier!”

Every single blind person I know has had this conversation – or some variant – at some point in their lives. The idea is that blindness is this horrid place of darkness, and a cure would fix all of our problems. But when someone such as myself has the nerve to say “A cure would be awesome for some people, but I don’t think I’d want it,” you’d think we’d just slaughtered a kitten on a downtown sidewalk – the flabbergasted reaction is so intense. But why WOULDN’t we want to see? Wouldn’t it be so amazing? My friend Meagan has eloquently written about her own reasons why a cure for blindness might not be for her; it’s an opinion that I share, so I won’t belabor the point.  But I have recently come across a couple of articles that have piqued my interest, not so much based on their content, but the public’s reaction to them.

Jewel Shuping. Her name has become quite well-known in the blindness community over the past few weeks, as she alleges that she suffers from a rare condition called Body Integrity Identity Disorder (BIID), in which someone whose body is perfectly healthy has an uncontrollable need to become disabled.  Jewel claims that, with the aid of a psychologist, she blinded herself with drain cleaner, and, prior to that, she “blind-simmed” (acted like she was blind), using a white cane and becoming proficient in braille.  Though Snopes finds her story hard to swallow, it does present an interesting case study, both of Jewel herself and of a general public who thinks the reverse – a cure for blindness – would be the greatest thing on earth.

You don’t have to dig too far into comment sections (that vast, murky landscape of anonymous internet users everywhere) to know that support for Jewel Schuping and the psychologist who assisted her is very rare indeed, from both sighted and blind alike.  Sighted people can’t imagine anyone who would willingly take such a risk (though Jewel Shuping is not the first or only blindsimmer out there); many in the blind community resent her for knowingly blinding herself and potentially using resources that are required by those who are blind due to genetics, illness or accident.  Leaving aside the method of drain cleaner to blind herself – as voluntarily removing eyes probably doesn’t fall under the purview of any medical facility in the world – the reaction to Jewel’s voluntary blindness can be described as perplexed at best and vitriolic at worst.

On the other hand, Mike May chose to undergo a surgery that would restore some of his vision after becoming blind as a three-year-old.  This article pops the fantasy bubble that receiving sight is simple and will make everything better; Robert Kurson’s book, “Crashing Through,” appears to further address May’s physical and mental transformation after receiving some of his sight.  While I have yet to read this book myself, and while May’s experience preceded the explosion of social media, judging by the number of blindness-related  organizations who share his story, May has maintained a wide acceptance from the blind community at large.

I dare not compare Jewel Shuping’s methodology with Mike May’s (one has the acceptance of the medical profession while the other clearly does not), but the idea that one purposeful life-changing act can be so derided while another can be so accepted baffles my mind.  Conversely, what about the individuals who are struggling to come to terms with their own blindness?  At some point, everyone has to face denial, anger, and hopefully will reach a healthy place of acceptance.  But I know people who have denied their vision impairment for so long, until they came to a place where they felt safe to acknowledge it openly.  Conversely, I have known people who have admitted to me that they have feigned less vision than they actually had.  Some blind people – particularly those who have had vision – dream of a cure one day; others wouldn’t know what to do with it if they had it. To muddy the waters even further, if a true cure for all forms of blindness were found, what happens if one chooses not to undergo what would likely be a complex surgery and a lengthy rehabilitation process?  Would we be denied housing, education, employment because of choosing not to undergo risky and complex medical procedures?

Leaving aside any hypotheticals, doesn’t living life well all come down to being secure in who we are?  For some, like Mike May, it might mean taking chances and undergoing a revolutionary medical procedure; for others it might mean embracing life without sight because it’s all we’ve got.  I don’t know where The Jewel Shupings of the world fit in; while a cure for blindness seems a long way off due to its complexity, willingly blinding yourself seems short-sighted (no pun intended) and complex as well.

So perhaps the next time “John” approaches me and tells me that a cure for my blindness (which, by the way, is more than one eye condition) will solve all my problems, I’ll ask him how he would feel if I told him that blinding himself would fix all of his insecurities, frustrations or grievances of life.  After all, he’s telling me the reverse is true.

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.

On Advocacy: When to Fight Back and when to Let Go

03 Saturday Oct 2015

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This post has been a long time in coming, because I believe it relates to many aspects of life – employment, education, transportation, access to public facilities, and so on.  Many of us, including me, have had to fight to get the services, access, or technology that we need to be productive classmates, employees, or members of society.  This blog post has been inspired by a recent event in my own life, and I am going to be purposefully vague about it; for those who know the whole situation, please keep it to yourselves.

 

Advocacy is essential to people with disabilities being productive members of society.  We may travel differently, use different skills, have cool gadgets that talk or vibrate, but beneath all that, we would like to not only be included but to feel included in academia, athletics, the workplace… even reality TV.  Sometimes we request accommodation that would be required for such inclusion, and it’s provided with little or no fuss.  Sometimes we have to fight harder for such accommodations, because to be without them would mean that we cannot be those included, productive people that we know that we are.

 

And other times, when the accommodation is more of a preference (even a strong preference) than a requirement… what do we do then?  Do we force that reluctant and unwilling university professor to accept us in that class?  Force an employer to provide additional technology above and beyond what they have already agreed to pay for?  Or is the best advocacy to push back by finding our own workarounds, by taking a different course with another professor or finding alternate sources of funding for that technology?  Sometimes, one action is appropriate, and at other times, the other is.  On other occasions, moving on to other pursuits is essential both for logistics and for the mental energy and stress that accompany fighting for access.

 

I know people who believe that fighting for access to anything for everyone is important and essential.  Without people like them, we wouldn’t have made the advances we have to education, public access, and the workplace.  But not everyone has the strength or inclination to advocate in this way; some prefer to advocate by finding ways around the obstacles placed in our path.  Unfortunately, still others take no for an answer and live as though no one will ever accept them.  This fatalistic view bothers me more than anything, because it perpetuates the idea that we will go away if we get turned back.  And while I believe that pushing back and demanding access is important and essential, picking our battles is even more crucial.  What does it benefit anyone if we are granted access to one aspect of life for no other reason than because it’s mandated?  Does it not speak more to our tenacity and courage that we find ways around those roadblocks that get placed in our way?  I’m not talking about making martyrs of ourselves, but finding the way to maintain our dignity while allowing our academic institutions, workplaces, places of leisure and modes of public transportation to realize that we are human first and disabilities second.

 

I don’t have easy answers to any of these questions, as my own choices regarding self-advocacy would be considered too polite by some and too demanding by others.  Some would tell me that finding ways around the word “no” is not my responsibility.  And yet, I find that such times give me an opportunity to prove not only to others but to myself that I am stronger than the word “no”, and that I can be creative when it comes to finding solutions to access concerns.  Sure, I might ask a friend for help in a pinch, or might even have to push back and demand my right to access… but until such point as I am considered a colleague, a shopper, or a student first and a blind person second, I find proving the naysayers wrong incredibly rewarding.

 

For those who DO fight by demands and demonstrations for reasonable access and accommodations, I thank you, because my life would not be as well-rounded without people like you and those who’ve gone before.  For those who request access by proving by getting kicked down and getting back up that classes, job duties, and independent life ARE possible, even essential, I thank you because you give me the courage to go on another day.  For those who decide after weeks or months or years of fighting that it’s no longer worth it, and blaze your own path, you do show remarkable courage yourself by realizing that it just isn’t worth it anymore; you are not a failure, so pick yourself up and blaze a new path for yourself.  But for those of you who just take no for an answer, just because it’s hard, don’t get in my way, because in effect you are part of the problem; obstacles are placed in our path due to the ignorance and unwillingness of a public that think we should be hidden away in institutions or treated like angelic beings for getting out of bed in the morning, and laziness and apathy perpetuate this.

 

Perhaps I’m more of a fighter than I thought…

When smoke Gets in Your Eyes

27 Sunday Sep 2015

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This past weekend, I had the opportunity to go “Fall camping”. For those who have never been (like me), it’s exciting and fun… except for the fact that you need to pack gloves, extra socks, toques (warm hats), realize that it takes forever to get a fire going, and layer up your blankets, because by gosh it gets COLD!

I loved it.

But the experience taught me some pretty startling truths – some humorous, some not so much – about my perception of myself, my own expectations, and how sometimes everything going to hell is just what you need to smack you in the face and get you back on track.

Let me preface this by stating that the trip was NOT a complete flop, and not even a bad trip. Just enough things went just sideways enough to make for some great reminiscences for the next camping excursion. Ben and I got to the camp site right on time, after a minor detour to the wrong campsite on the far side of the canal. Unfortunately, pulling in to the wrong campsite – a heavily treed area – signaled to Jenny that yes, yes yes, this was a PARK and this would be FUN, and let’s start whining the WHOLE rest of the way to getting back on the road and on route to our correct campsite. Thankfully this whining thing stopped until we literally pulled in, and she let out one plaintive yowl… and proceeded to hop out of the car and sniff all the trees and bushes within a ten-foot radius.

Our friends had been there for a couple of hours, had tried (unsuccessfully) to catch fish for dinner, and spent thirty minutes to get a campfire going. For some reason, the fly on our tent wouldn’t cooperate, so it took all four of us to actually get the thing assembled (this is what happens when you go camping less than once a year). We sat around the fire, but no matter what direction the wind blew, which chair I sat in, the smoke kept blowing in my face. Thankfully this doesn’t bother me too much, so I just rolled with it, drinking strong coffee and attempting to keep my already cold fingers warm. Jenny started shivering almost immediately, and was ecstatic to be able to lay on her bed on the cold ground. We enjoyed steaks, potatoes, and Greek salad for dinner, then donned extra socks, gloves, and/or sweaters and chatted around the campfire, complete with funny stories, whiskey, and beer, until one of the lanterns went out (about 11:30). Ben and I retired to our tent, and our friends headed to their camper…

Whoever can successfully change into their pajamas in a 2-person tent with their spouse and their dog inside it should get some kind of award. I can say this because I’ve successfully done it. Now, try telling said dog that yes, it really and truly is warmer under the spare blanket, NOT on top of it… one of those useful things they didn’t teach you at guide dog school. Repeat this three times during the night, lose your toque somewhere in your tent and wake up with a frozen nose, realize at 6:00 AM (while your dog has to pee) that your air mattress has a leak in it, and you’ve got a pretty good idea about the awesome time that was had by all in the Lang tent. No word of sarcasm… we had a ball… especially when Jenny woke up at 6:00 AM, wagging her tail against the side of the tent and giving Ben a tongue bath to wake him up; we laughed uproariously, making our friends wonder what in the world was going on just a few feet away from their camper.

The water at the pump had a sign on it that it wasn’t suitable for drinking, so we went into the nearest town (about half an hour away) and filled up on water, gasoline, and coffee. Jenny did terrific guide work in the restaurant, despite the fact that I didn’t have her regular harness with me, and we had to explain about six times that she is a service dog. Thankfully, we had our coffee in peace, filled up our water bottles and our friend’s Jeep’s fuel tank, and back to camp we went.

At this point, Jenny still thought that camp was the biggest off-leash dog park EVER. Her only exposure to wooded areas for the past couple years has been at off-leash or multi-use trails, and the trees and bushes and ground at camp all smelled SO AMAZING. Little matter that I was telling her to do something guide dog related (or even not guide dog related); listening was apparently optional. My city dog just wanted to get out her mojo. So we stuck a railroad spike into the ground, clipped her leash to it, and let her sniff around camp. This pleased her for about fifteen minutes… until she wanted her bed again – close to me, but far from the fire, please.

The fish weren’t biting. And the new campfire was taking forever to light. And the barbecue Ben was using slipped and fell off the picnic table, spilling a sizable chunk of bacon on the ground. Thankfully, we had enough bacon in the cooler – and eggs and Greek salad in the ice box – to make a terrific lunch. Undaunted, our friends wanted to go further up the canal to see if the fish were biting there, and I wanted to take Jenny for a hike…

But Jenny had other ideas. She didn’t get the memo that I had this awesome hike planned for us. Wouldn’t it be fun? No no no no no! It’s GRASS!!!!! And what do I mean that I want her to stay on-leash? This looks like a dog park! And not pulling? Pffffft. She’s off-leash at the dog park and doesn’t understand why I’m not happy. We spent the next thirty minutes like this, in a heated power struggle, until we walked back to camp and Ben and I reassembled the tent and loaded up the car. Our friends came back (still no luck fishing), minus a good lure that got caught in a log. As we drove away from a spectacular 24 hours, they were headed back out to give it one more try.

Camping has always taught me many lessons. As a small child and young teen, I was able to get away from the city and explore nature, pitch a tent, think my own thoughts, and just rest in the quietness of a summer night. This experience was wholly different, because I expected in some ways to be that same young girl with skills to assist those who were camping with me, even though I haven’t used any of those skills since I either had more vision or finished grade school… or both. I also expected Jenny and I – true city dwellers) to simply pick up and act like camping and hiking was no big deal, just another fun activity, not realizing that – like building a fire, catching fish, or cooking over a camp stove – it takes skill and practice to become profficient. Jenny and I both lost out in some big ways this weekend thanks to some expectations that I – ever the perfectionist, dreamer, nutcase – somehow got into my head. But we also walked away with some things, too. I’ve got a game plan for whatever remains of this fall, and next spring, to get out into more woodsy areas. Even if we never go hiking as a guide dog team, simply letting Jenny be a dog on leash and her understanding those limits will transfer into a much less frustrating camping trip the next time around.

By the way, I’ll go camping again. Even with gloves, toques (even ones that go missing), no fish, fires that take forever to light, and warm sunshine right next to nearly arctic shade, I far prefer fall camping to summer. You know why? No mosquitoes!

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…

On Not Hearing…

15 Saturday Aug 2015

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As is quite apparent from my blog, I am blind (visually impaired, if you want to be kinda politically correct).  Because of this, my sense of hearing is used for many more tasks than by those who can see.  Because I cannot see, my exposure to the deaf community around me, which I do realize does exist, is definitely limited…. and I got curious about daily life, culture, and hobbies of those who have limited or no use of the one sense that is so integral to my life.  Just as blindness and its social structure, perceived limitations, and ways of adapting is far too much of a topic to tackle in one blog post, I have found deaf and deaf-blind culture, use of language, and social interactions far too broad to discuss completely here.  So please don’t tell me how I don’t know anything… because I know I don’t have a clue… and I’m OK with wanting to know more.

 

It all started about fifteen years ago when I joined an email pen pal web site and began corresponding with a young deaf man (in Edmonton, no less( who communicated with the world around him using American Sign Language (ASL).  We both ended up marveling that two people who would probably never have met in person – and couldn’t have communicated fluidly if we had – ended up carrying on a months-long e-mail correspondence with no problems.  We lost touch after a few months, but I never did forget him.  Over the years, with the advent of social media and more affordable technology, I’ve been able to correspond with many who are deaf, hard-of-hearing, or deaf-blind, and am constantly challenged to re-think my own ideas about what life is like, what hobbies can be enjoyed, and how those who cannot hear well or at all can communicate with the world around them.  It’s a proverbial eye-opening experience, as I constantly feel I have to challenge those stereotypes myself.  And yet I put labels and restrictions on those who cannot hear, just as many around me put them on me because I cannot see.

 

Earlier this year, a documentary was released about the lives of musicians who are deaf or hard of hearing.  I was blown away by it, not because it was particularly well-done (though it is), but by how hard many of these musicians had to fight to break in to the music industry.  Many of them faced skepticism and doubt, but kept on kicking and fighting until they got a spot somewhere doing what they loved, in feats eerily similar to what many blind people have to do in order to gain employment.

 

Coincidentally, over the past six months or so, I have done some reading – biographies by parents of deaf children, one of whom went on a quest to discover the science of sound and language.  I have also read (or am currently reading) autobiographies of women – Rebecca Alexander and Joanne Milne – who have a condition called Usher Syndrome, which leaves them with both hearing and sight loss.  Both Alexander and Milne have chosen to be fitted with cochlear implants so they can hear the world around them; Milne’s experience in particular was recorded and went viral on Youtube.  Reading about this condition in general made me curious about deaf-blindness in particular.

 

Over the past year, I found myself befriending people through social media who are deaf-blind – some whose deafness is acute while others have been adapting to an ever-changing hearing landscape.  When I posed the question to my friends, I received very different responses to my questions.  Many whose hearing loss has been progressive after years as a blind person have expressed both publicly and privately their desire for a cure for these conditions.  In a very eloquent response, my friend Bruce describes losing his hearing as infinitely scarier than losing his sight, and how he would jump at any scientific advances to improve it.  But another friend of mine whose deafness was unexpected and fairly sudden has chosen not to hope for a scientific cure.  She says that deafness is now just a part of who she is, “Deaf, red hair, short, blind, sarcastic,” and how she wouldn’t change it.

 

All of this reading, communicating, and learning leads me to a very uncomfortable place.  I’ve unwittingly put so much emphasis on hearing in my own life as many around me do on sight.  As I know I have just scratched the surface on deafness or deaf-blindness – communication styles, employment, daily life – I need to understand that my own disability is as foreign to others as deafness is to me.  While patronizing language, rudeness, or presumptions are never okay, they are, at their core, born out of ignorance.  Ignorance due to lack of knowledge is understandable; remaining in  a place where perceptions refuse to change is not.

 

So for those of my readers who are deaf or deaf-blind, please accept my stumbling, my inadvertent insensitivity, and my seemingly nosy questions.  It’s only because I care about you and your life that I want to know more.  If I have presumed you are less capable than you are, or placed restrictions on your hobbies or career path or education choices, may I hang my head in shame, because I know all too well what that feels like.  And if I have remained silent, or failed to ask questions you wish I would, may this post be a conversation starter that brings our shared humanity to the forefront.