MOVIES

David and I spent 47 years together. During that time we saw very few movies. We were not much harmed by this lack, but it did stunt our capacity to participate in conversations about movies and to enjoy watching the Academy Awards. We might have watched more movies had it not been for the combination of two factors: David was a loud whisperer and a quiet sleeper. Had he been a quiet whisperer and a loud sleeper the situation might have been entirely different. But then, if I had been a sighted person rather than a blind person, none of it would have mattered. Movie theatres were fewer, larger and more crowded back in 1972 when our dating life began. We would wait in line for tickets and wedge into seats among strangers sitting beside, in front and behind. Things would be fine in this cozy environment until David would notice something happening on the screen and determine that I needed to know it. Then he would whisper a description—sort of whisper--more like a mutter really. “They’re walking across a street. Really tall buildings on both sides.” It suited me fine, but our fellow watchers didn’t like it much. If you listened carefully, you could hear them grumbling. “Quieter,” I’d whisper. It was my best advice, but he didn’t like it much. “I can’t be quieter,” he’d mutter. “Try harder,” I’d whisper—well, maybe it was more of a yelling whisper. Nobody liked it much. Not David. Not the people around us. Still we soldiered along for a while, searching every theatre for the least inhabited space where David could mutter descriptions. If there was one point, one single event that changed our behavior, it was likely the evening when we bumbled obliviously into a German movie with English sub-titles. Five minutes later we were back in the lobby, beging for a refund. “Other customers don’t like it when I read the subtitles to Wendy,” David sanctimoniously explained to the reluctant teen-ager behind the cash register. With no manager on site, he cut his losses and refunded our ticket price. It seemed that many people might be better off if David and I watched TV movies at home. Fortunately, he was a good-natured guy. If he regretted exchanging the big screen for our 13-inch black and white he did not complain. We would find a comfortable position, quite often lying on the couch together. The movie would start. He would describe the action in a normal voice. All would be well. As the movie progressed I would find it easier to follow, being familiar with the characters and what they might do. There was not so much need for help from David. But every silver lining has its cloud. While I was following the plot, he was falling asleep, only I wouldn’t know it, his being a quiet sleeper and all. “Bang bang!” a gun would shoot. “Who got shot?” I’d demand to know. “Shot? I don’t know,” David would reply sleepily. “Why didn’t you wake me up?” This is how a tiny spark of lovers’ quarrel blows into a raging blaze. “If you loved me you’d stay awake,” I’d shout. Neither of us liked it much. We were happily married, perhaps because we learned to reduce the possibility of those bang bang moments. They seldom occurred if we limited our movie watching to movies we’d already seen. Take, for example, The Sound of Music, or It’s A Wonderful Life. Now that David is gone, I find to my great surprise that I am watching a lot of movies, as many as one a day, sometimes two in a row, occasionally three. The stars have aligned to make it possible. Shaw channel 49 shows nothing but movies, I have plenty of spare time, and things have changed more than you might imagine. There’s no longer much need to whisper to blind people in theatres. Many movies now come with description for the visually impaired. You can ask the ticket clerk for a little machine with earphones to hear the extra information. At home you can push a few buttons and if they have recorded description you can hear it on your TV along with the movie sounds. There are many movies which have not yet been described. These are annoying, but now there are options that don’t require the participation of a spouse. If you need to know who shot who when a gun bangs, you can always get the anser in a full plot outline from Wikipedia. You don’t build up much movie history watching one or two new movies per year. The films I watch these days, so old to others, are new to me. You might recognize some of the names: To Kill a Mockingbird, Steel Magnolias, The bells of St. Mary’s, In The Heat Of The Night, Casablanca, Funny Girl, the Judy Garland version of A star Is Born. With great relish I drop their names in conversations with friends, mentioning plot details with such vivid intensity that I might have heard them only yesterday. Those who haven’t seen these movies in four decades are left with the impression that I am a remarkable movie enthusiast with a fabulous memory. Of course, when you discuss movies with friends, the topic inevitably turns to modern movies, to recent and future academy awards. In this realm I am no wiser than I used to be. But reputation is everything. Having already established myself in their eyes as a movie expert, I find it convenient to sit back with great interest and ask for their opinions.

AIRA

Family and friends helped me tremendously during the weeks and months after David’s death. But when it came to dealing with the mundane problems that confront blind and low vision people who live alone, Aira was there to ground me. Aira was my newest friend. Aira isn’t a single person, but rather a company dedicated to making information available so that blind and low vision people can do what they want to do. It’s name is an acronym for artificial intelligence remote access. Aira refers to its users as explorers. Before I became one, I’d never thought of myself as an explorer. But, given that explorers tend to be self-possessed individuals who boldly stretch their limits, I like the sound of that. Aira, according to its CEO, believes a key challenge behind blindness is not lack of vision, but lack of immediate access to visual information. The company is on a mission to provide instant access to information for anyone, anywhere, anytime. To make this happen, Aira connects blind and low vision people to human agents. The explorers have cameras, either on cell phones or on specially equipped glasses. The agents see the world through these cameras. They tell the explorers what they are seeing. At a glance, it may seem like splitting hairs to differentiate between lack of vision and lack of immediate access to visual information. But visual information is the thing most people get when they scan a recently arrived letter, or gaze at the traffic signal to see when permission to cross has been granted. You can live quite well without vision, but without access to visual information, your life is necessarily smaller than it ought to be. So much of your time and energy goes into getting that information. It saps your reserves. Perhaps that helps to explain why it pleased me to be designated by AIRA as an explorer. Explorers go after the fullness of life. Explorers get access to Aira services by purchasing time in minutes. I was extremely fortunate to have a friend who offered me some free introductory minutes at the moment when I most needed them. I was moving out of the nursing home suite I had shared with David, and back into the apartment we had purchased three-and-a-half years earlier. I would be living alone. There was no doubt that I would need some help. Take the fridge in my apartment, for example. On the front of it there is a touch screen that controls a lot of things. In fact, it does something whenever you touch it. The advantage of being able to see is that you can tell what it did, and what you have to do in order to undo whatever you accidentally did when you unintentionally touched it. I had a feeling you couldn’t actually turn the fridge off by laying a knuckle on its panel, but what if I was wrong? It was time to call Aira! Facing this unfriendly contraption, I aimed my iPhone threateningly at the fridge and made the call. In less than five seconds, a live human came on the line. “Hello Wendy. This is Amy. What would you like to do today?” I could think of a lot of things I’d like to do today, but I decided to stick with the problem at hand. “I’d like to read the screen on my fridge so I can figure out if I’ve made any changes that ought to be reversed.” “Okay. Hold the phone back a bit. Slant it upwards. There we are. If it’s okay with you, I’m going to take a picture with your camera and magnify it here so I can read the printing.” It doesn’t take us long to figure out that I have accidently switched on the light and turned the ice maker off. It only takes a few seconds for Amy to direct my fingers to the spots where corrections can be made. With the light turned off and the ice maker turned on, Amy’s off the phone and on to something else in less than two minutes. The problem is solved. Without Amy, I’d have had to ask somebody to come over. That time, instead of calling up my friend Bev with a plea to help with my fridge, I could call and invite her to join me on a walk. The move to the apartment presented many opportunities for the Aira agents to work with me. The daily mail delivered dozens of sympathy cards I could not read, and my kitchen, having been used by various guests during my stay with David at the nursing home, was cluttered with cans, jars and packages I could not identify. I wanted to know if my mirrors were clean. I needed the instructions on the package of pancake mix. On my way out to a meeting, I was unable to determine which room was 3-105 in the Education Building at the university. Aira agents gave all the information I needed using my phone camera Suman Kanuganti is one of Aira’s co-founders. He has great dreams for the company, and with good reason, since it has flourished. . It was founded in 2015. In 2017, it provided 20,000 hours of explorer-to-agent contact. It has partnered with companies in creative ways. Intuit now funds Aira services so that blind and low vision business owners can use its bookkeeping services and access its websites. Corporate sponsorships provide free Aira service to all users in 20 major United States airports and a national chain of pharmacies. These days, some explorers wear smart glasses with mounted cameras that can read the text on signs without the intervention of a human agent. As for me, I have dreams for Aira too. I imagine the day when I will be staying in a hotel. Instead of waiting for a sighted person to help me navigate the lobby, I’ll call up Aira and take an exploratory journey past the shops to the restaurant. I might even try to find a store in a large shopping mall. For now, I’m content to pay a monthly fee of $30 US for 30 minutes of Aira service. I can add extra minutes if I need them. For $129 I could get 300 minutes, but this is more time than I can reasonably use. Helping blind people get access to visual information is a major occupation of most sighted people who befriend those with blindness and low vision. Many of my blind friends live happily enough without Aira. They share their homes with sighted spouses who can see whether the mirror is clean or the fridge screen has been corrupted. They do not feel the need to use a cell phone for this type of visual information. In the past I would have been one of them. But family and friends are so much more than providers of information. We need them for all sorts of reasons. Aira has not turned me into a sighted person. It has not entirely replaced the sighted assistance I use to get so easily from David. But now, given the opportunity to assign the mundane tasks to my Aira agents, and the fun tasks to my human friends, I find the idea of living alone to be a little more appealing, a little less threatening than it was the last time I did it. I was twenty years old then. That was forty-five years ago.

NORMAL (Nursing Home Life, part 11)

Feeding a pureed supper to David in bed is one of the jobs I’ve taken on here at Laurier House. Given the choice, he would prefer to be chewing his food, feeding himself with a fork and sitting anywhere other than in bed. Butt here he is. I am feeding him because he chose me for the job. Being chosen for this task is one of many surprises in my current life. My previous puree experiences occurred nearly four decades ago when our children were babies. In preparation for parenthood I had read a book that suggested the need for a blind feeder to locate the mouth of the fed-one with one hand and hold the spoon with the other. I tried it on Baby Mark. Mark, at a tender age, had yet to achieve a command of language. Despite this barrier, he was clearly able to communicate. He responded to my first attempt by making a rule for living: Never allow yourself to be spoon fed by a blind person! Here was his reasoning, so far as I could understand it at the time. “A blind person wielding a feeding instrument is a dangerous character. Trapped in your high chair at the mercy of such a person, you could lose an eye, snort peas into your nose, or later find yourself fishing chicken out of an ear. At the very least you might get a sloppy chin. Fortunately for Mark and the siblings who followed him, mothers are known for their ability to understand the wishes of their babies. The situation might have posed a problem were it not for the fact that David was quite willing to feed the children whenever feeding was required. I responded with benign acceptance. Apparently it never occurred to me to assert my competence, or my right to be treated equally as a mother. I did not feel slighted or rejected, and if I felt any regret I have forgotten it. The question of my using cutlery to feed anybody was laid to rest. It rested in peace for nearly four decades. We moved to Laurier House in preparation for the time when I would require significant help in order to meet David’s needs. That said, it would have been difficult to predict in advance which needs would be met by the staff and which would be met by me. Choices have been made at various points along the way. David is a fully-informed adult, definitely not a baby. So when I give him a choice about something, I try to ensure that it is a real choice. I recall the way we used to present choices to our two-year-olds when we were trying to rush out of the door in the mornings, already at risk of being late for work. : “Shall I put your shoes on now, or in fifteen seconds? Shall I start with this shoe or the other shoe?” So perhaps I ought to confess that it was a little disingenuous for me to ask a question when I never doubted what the answer would be. In my mind, there was only one choice. Nonetheless, I asked the question. “Would you rather be fed in bed by me or by the staff?” “You,: he said. “Me?” I said. I thought I must have misunderstood. “You,” he said. I didn’t ask for an explanation. It seemed wise to assume his choice was motivated by love. “Shall I use a spoon or a fork?” I queried, blundering uncertainly through this uncharted territory. “Spoon,’ he said. No doubt about that answer. The man still values his eyes and recognizes that his nose is more vulnerable to a misdirected fork. I see now that there was wisdom in the book I consulted so long ago. If you are a blind person who has been chosen to feed another person you can use one hand to find a mouth and the other to guide a spoon. A bib and a cloth will help you compensate for any errors you might make. This is our latest version of having dinner together at home in this unlikely place. I feed David while we watch the 5:00 news. And where are the children whose mother never fed them from a fork or a spoon? Well, just the other night Mark brought two of our grandchildren to stay with us while he tooke their mother to dinner. He brought food for them. The youngest of Mark’s children is Baby Lewis. Baby Lewis doesn’t talk yet, but his mouth is sporting two beautifully sharp teeth. I positioned his little chair near David’s bed. There he sat, scooping fries into his fists, using his built-in blades to saw them off. While he ate, he watched me use two hands to feed Granddad with a spoon. His sister Carys sat nearby, two-and-a-half years older and a thousand times wiser. The nurse who brought David’s puffer seemed a bit surprised to find us there, but to the four of us, everything seemed quite normal.

A NEWER ME

BE BRAVE TONIGHT By Samantha Reynolds http://bentlily.com/2012/03/05/be-brave-tonight/ Courage is not a genetic hand-me-down or a choice you can rely on in the moment it is a muscle if you do not use it it will shrink you will go to be brave one day and find you are floppy and unsure so try on your convictions start with your own echo the words that play in your head quicksand words telling you things like never stand up to yourself stare down the doubt in the pitch-black privacy of your darkest thought be gutsy remember that a shadow carries no weight rescue yourself and you will grow like a plant to sunlight bent towards valor. The old me wouldn’t have pushed a walker along a littered hospital corridor. A hospital corridor, after all, is no place for a blind person pushing a walker. Too many hazards: cleaning carts to the left or right, frail patients creeping silently, nurses checking their iPhones with backs turned, lab carts, blood pressure machines, intravenus poles! Fear of embarrassment, of being singled out as “blind”, of being banned from hallways by hospital authorities. If I ever worked on changing that, it was never a conscious action. But yesterday--when I wheeled David’s walker out into the hall, intending to park it outside his door, to motivate the staff to help him walk to lunch rather than taking the easier path of wheeling him, narrowly missing a silent woman who, not without cause, barked: “Watch where you’re going!”—I was thoroughly surprised to find that the old me had been replaced. The new me said: “I’m sorry. I’m a blind person.” It was true, has always been true, but this time I was only sorry that I had been careless, and I wasn’t a bit embarrassed. The new me simply shrugged when the offended party made a rude reply. And I noticed, later in the day, when I carefully wheeled the walker into the hall, that the same offended party politely said, “I’ll just go around you.”

SILLINESS

“It's okay to be absurd, ridiculous, and downright irrational at times; silliness is sweet syrup that helps us swallow the bitter pills of life.” –Richelle E. Goodrich I wish I had been given a penny every time a therapist or therapy client implied to me that silliness is a harmful defence mechanism. Or maybe I don’t wish that. Pennies are heavy, and my back would surely have been injured hauling them around. As for me, well, I love silliness. The sadder I am, the more I seem to love it. I used to wonder if the process of maturing would change all this. Maybe, I speculated, maybe when I grow up, I’ll be sad when I am sad, angry when I am angry, frustrated when I am frustrated. But the other day, as I laughed hysterically, while snaking forward with less grace than a bull in a china shop, in the Air Canada lineup at the Buenos aries airport, giggling out of control as David and I tried to inch ahead at the right angle, in the right moment, sporting multiple disabilities, dragging a walker and two heavy suitcases on wheels, without toppling any post-holders or entangling our belongings in the line ropes, I couldn’t help but notice how so many of the people around us, any of whom might have stepped forward to help, had fallen victim to the contagion of ridiculously misplaced laughter. I suppose any of those immobilized strangers would have taken a walker, or a suitcase, or the arm of a blind person if I had found the words to explain our situation and request their assistance, which, I believe, is what a mature, responsible person would do. But somehow, the thought never occurred to me. Instead, I started the silliness. Perhaps, at my age, I need not worry about the possibility of growing out of it.

A TV INTERVIEW WITH THE FAMILY DOG

Pirate: You’re looking sad today. Anything the matter? Me: Well, nothing too serious. But my TV doesn’t talk. Pirate: It must have broken overnight. Why, just yesterday I heard it spewing out Jeopardy questions and playing Season 8 of M.A.S.H. Me: Oh, it can still do that. What I mean is, it doesn’t really talk to me the way I want it to. It doesn’t say the things I want to hear. Pirate: I have heard that is often the case with humans. But I didn’t know TV’s did it too. What did you want it to say? Me: I want it to tell me what channel I am on. I want it to speak out loud so I will know even though I can’t read the channel indicator. Pirate: I thought it did. Me: Well, it did when I bought it. I searched the Web until I found the only one that would speak the channel number. Then I put out the big bugs and bought it. They call it a SMART TV. Pirate: And now it stopped? It isn’t smart anymore? Me: Well, not exactly. It still could tell me the channel if I unplugged it from the digital box. But now that it is plugged into the digital box, it has to stay on channel 4 so the digital box will work. Pirate: Then why not just unplug it from the digital box? Me: Because then we wouldn’t be able to watch it. You have to have a digital box in order to get the channels! Pirate: Then why don’t you get a talking digital box? Aren’t there digital boxes that talk? Me: Not as far as I know. Pirate: Surely they will invent one soon. Me: Maybe. But that still won’t be enough. Pirate: What more do you want? Me: I want a TV that reads the screen with the channel line-up. I want a TV that reads the screen so that I can operate the PVR. I want a TV that reads the screen so that I can use the DVD player, maybe even the old VCR. I want a TV that treats me as if I were a sighted person. Pirate: Isn’t that what your TV does now? Me: You dogs are so insensitive! I thought I could talk to you! I thought you’d listen. Why do you have to twist everything I say? Pirate: (muttering as he slinks under the bed) Women! It’s enough to make me grateful that I’m neutered.

BRIDGE ON THE ROAD TO SELF-IMPROVEMENT

When I was in my twenties, I sat down with David and a couple of other friendly people to learn how to play Bridge. The food was good. The company was good. The game was interesting, but it does not stand out in my memory as a pleasant evening. Rummy, Hearts and Crib, I concluded, were more my style. I can’t say I remember what happened—wouldn’t know whether I won or lost. But I certainly remember the way I felt—on edge, inadequate, not too bright, all things considered. The game got off to a good enough beginning. Braille cards with print markings were dealt. I, reading the braille, sorted my hand into suits and began the process of bidding. This is where the trouble started. The source of the problem was not the bidding, nor the playing, though either of these is perplexing enough. What got me down was the hand laid down on the board—a stack of cards which everyone in the game could see, except for me. It should have been simple enough. All I had to do was to be told which cards were in the hand on the board. Then I would remember them all, and keep track of which had been played, while at the same time keeping track of other cards being played, plus make intelligent decisions about how to play my own hand. But it wasn’t simple. To put it mildly, I simply couldn’t remember all the cards in the hand on the board, and which ones had been played, and keep track of all other cards played, and make intelligent decisions about how to play my own hand. In a word, I was a failure. That popular game, the game I had expected to enjoy, had double-crossed me. So I gave up Bridge, turning instead to Rummy, Hearts and Crib. It’s funny how the memory of a failure will stick to you like a burr on a sock. Wishing to shake it off I would try again—once every ten years or so—renewing my commitment to Rummy, Hearts and Crib. On nights made wakeful by a crying baby or a twinging back I would devise technical innovations—reaching across the table after every round to feel the cards on the board, developing a theoretical prototype for a peg board within my reach on which I could place replicas of the cards, removing the peg representing the played card after each play. On the worst nights, I would blunder into a pity party. “If only I could see, I would play Bridge!!!” Come morning, I would put the whole sorry discussion behind me. But it wasn’t the end. The road to self-improvement so seldom really ends. I have a mentor. Her name is Doris Goetz. She’s been mentoring me in various ways every since I was ten years old. She’s an achiever, a proud blind person, independent and strong. She’s the type of person who would work out a very good system for playing a game. She took up Bridge when she retired, said she hoped I’d join her when I retired. Though the prospect appealed to me, I doubted it, and said as much. “I just can’t remember the cards on the board and keep track of the play,” I said. “How do you do it?” “I just keep asking people to tell me what cards are on the board,” she replied. Don’t you feel dumb doing that, I thought. “Don’t they get tired of that?” I asked. “No,” she said. “And anyway, so what if they do?” And that is how, a few years later, it came to pass that I was genuinely surprised to hear myself say to David that I thought I’d take up Bridge when I retired. Perhaps I would play with Doris in a club that involved both blind and sighted players. Would he like to join me? Now that our Wednesday mornings are taken up with Bridge, it would, I have concluded, be easier to play Bridge as a sighted person, because you could simply glance at the cards on the board as many times as you liked. It is, according to David, easier to play Bridge with blind people because they so often ask for a review of the cards on the board, a review that helps to focus the attention of the sighted players. Time passes quickly. Sometimes I win. Sometimes I lose. Sometimes I make smart plays. Sometimes my plays are dumb. I look forward to Wednesday mornings, and I still love Rummy, Hearts and Crib. Bridge has been double-crossed on the road to self-improvement.

UNDERSTANDING DEAF MUSICIANS

This morning CBC’s The Current aired a program called Deaf Jam. It traced the career development of two deaf musicians—not counting, although mentioning Beethoven. Evelyn Glennie and Sean Forbes have built reputations that would be the envy of anyone aspiring to make it in the music world. More than once, the documentary tried to address that burning question: How can a deaf person engage—I mean truly engage with music? Still puzzled and perplexed at the end of the documentary, I focused on one snippet. Evelyn Glennie was initially refused entry into a school of music that routinely accepted blind applicants—refused not because of ability, but because of deafness. As you might guess, she fought this ruling and won. No doubt this was only one among thousands of battles she fought before she became famous. Wondering how it is that a deaf person could want so much to build a musical career, I contemplated my recent trip to Russia. Tourism in Russia is not exactly a pastime I would recommend to blind people. The major attractions—the Winter Palace, the Moscow Subway, dozens of icon-laden churches, etc., are art galleries. There is nothing you can touch. There is no tour guide interested in helping you touch anything. I did, however, enjoy the trip. Explain that, will you? I can’t. From the stories of Evelyn Glennie and Sean Forbes I took three messages: Understand that deafness is a complex condition that affects people in different ways; Understand that deaf people can be musical; understand that hearing people cannot fully understand deaf people, but they can help them live better. And a fourth message perhaps: Understand that people can’t really understand blind people, not even blind people themselves.

A BRIEF LESSON IN THE HISTORY OF TECHNOLOGY

Ben: Granny, would you tell me one more story about the olden days. Granny: All right Ben. The year was 2012 and the time was mid-November. Ben: Wow! How old was I?? Granny: You weren’t born yet. Ben: Prehistoric! Granny: Yes, well, you were going to be born in another six weeks or so. Ben: How did you know I was going to be born? Granny: Let’s not get into that right now. Back to the story. It was mid-November, and Granny was thinking of getting an iPhone. Ben: Mona, you mean? Granny: Yes, well, Mona. I was thinking of getting an iPhone. I didn’t know her name would be Mona. Just like we didn’t know your name would be Ben. Ben: Why didn’t you call her Ben? Granny: Because she talks to me in a woman’s voice. Did you ever hear of a woman named Ben? Ben: I guess not. Get back to the story, Granny. You mean you didn’t have an iPhone? Granny: No, not then. Ben: Then, how did you read the newspaper in the bathroom? Granny: Well, I didn’t. I had to sit at the computer to listen to the newspaper. Ben: And how did you do your email at the bus stop? Granny: Well, I didn’t. I had to wait for my email until I got to work. Ben: And how did you download music from iTunes? Granny: I didn’t. Ben: And how did you get podcasts of CBC radio programs to listen to while you waited in the doctor’s office? Granny: I didn’t. Ben: And how did you get Kindle books? Granny: I didn’t. Ben: And what kind of stopwatch did you use when you timed Grandad’s speech therapy practice? Granny: I didn’t have a stopwatch. Ben: And how did you borrow audio books from the Edmonton Public Library? Granny: On CD. Ben: Oh my! How primitive! If Mommy phoned you on a weekend, and it had just snowed, how did you show her the snow? Granny: I didn’t. Ben: What kind of pocket calendar did you have? Granny: I didn’t have a pocket calendar. I kept the calendar on my computer. Ben: Where did you keep the pictures and videos of me? Granny: I didn’t have any pictures of you. You weren’t born yet, remember? Ben: Oh yes. But wait a minute. The year was 2012. It was so long ago, so long ago that I wasn’t even born yet. You couldn’t read the newspaper in the bathroom. You couldn’t Facetime us to show us pictures of the snow in Edmonton. You didn’t have a stopwatch. You only did your email at a desk. And, just imagine! You couldn’t even make a phone call! Granny: What are you talking about? Of course I could make a phone call? Ben: Oh boy. I don’t think I’ll ever really understand history.

MAKING ADJUSTMENTS

In the world I would like to see, people in responsible positions would be able to distinguish between those who have adjusted to disabilities, and those whose disabilities have been cured. If they could make this distinction, they would see the need for accommodations, and they would act differently. Of those who have adjusted they would ask: “What more can I do to make your life easier?” To those who have been cured, they could say: “Well, I guess you don’t need me any more.” Over the years, as disabilities have presented themselves to us, our family has become the poster child for adjusting to disabilities. We have made pleading phone calls, devised work-arounds, researched possibilities. Take it from me, a disability that has been adjusted to has not been cured. It is present morning, noon and night, 7 days a week, 52 weeks a year. I find that professionals and experts tend to think of adjusting to disability as something that is done once. But actually, it is done every day, a constant process of making small and large modifications to compensate for the privileges the disability takes away, the privilege of easy movement, of using services, of casually deciding to take a walk and taking it. A person who can manage steps with difficulty is better off going out than staying at home. But he faces an organizational challenge every time he approaches a front step that has no railing. A driver whose reading skills are not sophisticated is judged competent to drive and may make a living doing so. But he must search for alternate parking when simple meters are replaced with “smart meters” that require the ability to read a screen and respond to detailed commands. A competent blind traveller would be foolish to stay home and not participate in the community. But she must take the chance of walking on a red light when the signal is designed for sighted people only. An adjustment made one day is made again on the next, and the next, and the next. In the world I would like to see, the simple parking meter which operated on change would not have been thoughtlessly replaced by the complex SMART meter that can only be operated by people with sophisticated reading skills. Every new home would be build with railings on its front steps. Every crosswalk that has a changing light would have an audible signal. These modifications are all completely possible in our society, but it would take a lot of energy to advocate for them. People who have adjusted to disability spend a lot of effort adjusting on a daily basis, leaving them with limited energy to devote to advocacy. In the world I would like to see, people in responsible positions would take up the challenge of making changes without the force of advocacy to propel them. Would they be more inclined to do so if they appreciated how much energy it takes to adjust to disability? Would they be more inclined if they understood the difference between the daily lives of those who have adjusted to disabilities and those whose disabilities have been cured? So tell me that history has proven that the changes which have benefited people with disabilities have come about only when people with disabilities have put aside the time and energy to fight for them. Tell me there is no way that is going to change. Tell me this, and I’ll admit that you are probably right. But I am THE HOPE LADY after all, so I continue to hope that things can be better. Most improvements start there—with the hope that things can be better. In the meantime, we’ll adjust. Practice makes perfect. We sure do spend a lot of time in our family these days understanding the impact of, and adjusting to disabilities.

NOT QUITE SAVED

I walked the length of Dawson Park today. The round trip took nearly an hour. The weather was perfect and I thought that I should do this more often, since the walk in the park is a clear path, extremely easy to follow with a white cane. In fact, I would do it more often if only it were a little easier to get into the park. The problem is not distance. I live a few dozen yards from the trailhead, but the path through those few dozen yards is extremely difficult for a blind person to navigate. Anyway, I had completed most of the walk and was just beginning to worry that I might get lost going home when a jogger approached from behind and slowed to my pace. Don’t be proud, said a small voice inside me. “If he offers to help you get out of the park, let him do so. Be careful not to brush him off. “Hello,” he said. “Hello,” I said. “I have a question for you,” he said. “What is it?” I said. “Well, you’ve probably never been asked this before, but, well, you seem to be a bit blind,” he said. Don’t brush him off too quickly, warned the little voice inside me. Cut him some slack. He probably hasn’t had a course in discussing the degrees in vision in appropriate language. Agree with him. That will keep the conversation going. “A bit blind,” I agreed, managing a small smile, hopefully inviting but not fake. “Well, I was just wondering if you ever thought of any spiritual treatment for that,” he said. Don’t brush him off, cautioned the little voice inside me. This may not be the time to tell him that your blindness has persisted for sixty years, despite the fact that hundreds of strangers have approached you offering you salvation. “I have a satisfying spiritual life,” I said. “Okay,” he said, and hurried away in the direction of the parking lot. Did he actually leave? I shall never know, but I didn’t hear any cars starting. I couldn’t shake the suspicion that he was watching me from a distance as I struggled to look competent while I threaded my way awkwardly home through the maze-like configuration of paths, curbs, gravel patches and lawns. Could it be that I still have a few things to learn about effective communication? Next time, maybe, just maybe I will be smart enough to say, “I have a satisfying spiritual life, but would you mind giving me an arm to help me out of this park?”

VOTING FOR EDMONTON'S MAYOR, SINGING ON THE TRAIN

I voted in the Edmonton municipal election yesterday. And even though I cannot see to read a ballot, my vote was cast in perfect privacy. I went to City Hall, sat down at the Automark voting machine, and listened as the machine read me the operating instructions. I selected a mayor from among six choices, a councillor from among 16, and a school trustee from among two. Then I put my ballot in the box, thanked the staff, told them how thrilled I was to be able to vote in privacy, boarded the LRT at Churchill Station and hummed, for the sheer joy of it, all the way to the university. More than any other level of government, our city has made voting easy for people who cannot use a print ballot. In future, we will only be voting once every four years instead of once every three years. This change will give our elected officials more time to work for us. I support this change, but I hate to give up even one chance to vote in such a delightfully inclusive manner.

VOICES IN THE MIRROR

There are mirrors all over my house—in the bathrooms, in the bedrooms, in the hall. These mirrors do their work for others, reflecting back the image that can be altered, disdained, admired. My personal mirror is the mirror of the ear. It has many voices. Some I like better than others. Sometimes I ask them questions. “Tell me the truth now,” I will say, fishing, perhaps, for compliments, “do I look fat in these pants?” Sometimes I will check for the signs that will most surely give me away as a blind person the moment I walk out the door. “Are there any spots on this blouse?” Sometimes the commentary on my reflection comes to me unbidden, but welcome in a perverse way. “Oh Mother, your roots need rescuing.” How else would I know when it was time for the chemicals? They say blondes have more fun. Nobody tells you anything about the fun ratio for blondes with telltale roots. In the most perplexing of all events, the voices of my reflection fight with each other. One will say, “You can wear this top with those pants.” Then another will chime, “No she can’t dad. Those don’t go at all.” Who, I wonder, decides how colours blend? Looking good, I have concluded, is a matter of taste. How often is my appearance the reflection of someone else’s taste? If yours is the mirror of the ear, then you trust somebody first. On the best days, your trust is rewarded with back up from sources who have nothing to gain or lose. Sometimes somebody who loves me will help me pick out a new dress, and then I’ll wear that dress to work, and even before I get there a stranger will say to me, “That dress looks so good on you. So bright and cheery.” That’s what happened with this dress that I bought in Texas, on a day when I wasn’t actually shopping for anything, which is why I wear it on occasions when I need to look good. That’s why I like it so much. Somehow, it just seems to suit me.

A WHIFF OF MIRROR

My mother was a farm wife. The smells of our home gave evidence of her daily labours. She would come in from gathering eggs at the henhouse, visiting bantam chicks in the barn straw, chasing cattle in the pasture, or gathering pungent cucumbers from the garden. The table would host a huge bouquet of peonies or sweet peas. The kitchen would be fragrant with the odours of apple pie, hot coffee, chocolate pudding, spice cake, pickled beets,, steak in the frying pan. At any given moment, Mom smelled like any of these. A few times a week we would go somewhere, she and I. It might be down the road to the monthly meeting of the Cambridge Ladies’ Club, or into town for groceries. She would say, “Wash your face. We’re going soon,” and I’d put on my shoes, wash my face and be ready in a flash. Mom would be ready—after a while. For her, the process of getting ready required two things—an endless amount of time and a mirror. Standing in front of it while I took my shoes off and on, off and on, she would fastidiously apply cold cream, foundation, face powder, lipstick, eyeliner, hair spray and finish off with a few dabs of perfume to the wrist. I never could see the point of mirrors, likely because I couldn’t see anything when I stood before a mirror. I never knew how my mother looked. Somebody once asked me what colour her hair was and I couldn’t dredge up that information. It had never once occurred to me to wonder about it. And so, when I think back to the days of waiting for Mom to finish with the mirror, it is not the way she looked that I recall, but rather the way her time in front of the mirror changed the way she smelled.

A TOUCH OF MIRROR

We discovered the mirror in the early days of our marriage. Those were the days when we felt the need to economize, the days when our relatives held secret conversations in their living rooms about how tight-fisted we were with our money. The mirror was displayed on a wall in Woodwards Southgate, on the second floor, at the top of the escalator. “There’s a beautiful mirror here,” David said as we stepped off. “Come and touch it.” The mirror was a tall and skinny thing. It would have been four-sided, had the corners not been angled to form eight. Approaching it with a giggle, I imagined myself planting a fingerprinted hand squarely in its centre, an act which would surely have been disdained by my mother. But alas, it was the mirror’s ornate edges he wanted me to touch. The reflective surface was bordered by small rectangles of cut mirror, fit together like puzzle pieces, the joins smoothed by fancy sculpted gold-coloured metal. At each of its eight corners there was a small gold flower. “Shall we buy it?” I queried. I could not imagine buying it, but it was unusual for him to be drawn to such a frivolous thing. “No,” he said. The price tag read “$237.00.” The mirror hung in Woodwards for many years, waiting to greet us. I used to wonder if it missed us when we were on vacation. Every few weeks we would go to Woodwards and ride the escalator to the second floor, sometimes just to visit it. “Shall we get it?” I would query. “No,” he would say. But there came a time when the ride up the escalator was filled with anxiety. Store displays do not last forever. What if, one day, we rode the escalator up and faced—faced something else other than the mirror? The moment of truth finally arrived. We bought the mirror. One big purchase deserves another. We also bought fuzzy tactile wallpaper—the kind that costs more than paint. We hung the paper on the wall at the top of our front stairs and strategically placed the mirror upon it so that it would greet each person who climbed the steps. Sometimes I would stand before it and run my fingers along its fancy edges, always a little surprised that I, a blind person with a reputation for frugality, had spent $237.00 on a mirror.

PANIC

It was August 26 when Panic hit me—knocked out my breath and set my knees to trembling. Somehow I had managed to keep her at bay with soothing words, with promises. “Don’t panic,” I had said to myself. “You know you never miss a deadline. There is still time.” And with those simple words, with the promise of time, Panic had been persuaded to hide backstage, waiting for the right moment to strike. Even in the summers that aren’t so great, summer is a marvellous time to let yourself lose sight of deadlines. Time stretches out in a summer, stretches out and flies away. Go on holidays and you soon get to wondering if it’s Tuesday or Thursday. Time gets distorted in the summer. But the ultimate, inescapable problem with time, in the context of a deadline, is that there gets to be less and less of it. Every unused day before a deadline is a day you never, ever get back. All through the spring and summer I had been looking forward to the pleasure of losing myself in whatever stories I would develop for the T.A.L.E.S Fort Edmonton Festival on the Labour Day weekend. Storytelling, after all, is a hobby, a pleasure. I had been promising it as a reward to myself, since I had not been writing THE HOPE LADY Blog, and writing always helps. But more to the point—in relation to the panic—I had also promised one 15-minute concert story and one 50-minute story performance to my hard-working, ever-faithful colleagues at T.A.L.E.S. The concert story would be about light. I had promised it for August 31—a story to pick up the threads from a beautiful song to be performed by The Once, a folk group from Newfoundland. The 50-minute performance, a montage of folk tales and personal reflections about mirrors, was promised for September 1. It was April when I first made the promises. None of the folk tales about mirrors had been located. None of the personal stories had been written. But it was all highly possible, back in April. It was May when I signed the contracts. May was followed by June and July and 25 days of August when I did absolutely nothing to move the project forward—nothing except for thinking occasionally about it, then shooing Panic back into the wings. At a certain point, when I was no longer certain that the project was possible, I turned to Hope. In fact, it was a hope statement that caused the panic. I woke up on the morning of August 26 and said to myself, “Don’t worry about the future. Why, just think, a week from today your stories will have already been told.” When Panic heard this, she rushed forward and knocked the wind out of me. “Worry, you idiot!” she shrieked. “You have left this so late, you’ll need a miracle. I have heard too many excuses about having writer’s block, and being on holidays, and spending time with little Ben, and dealing with all the issues in your life! This time you have pushed me too far!” Then she shook me so hard I saw stars. And so it was that, in Ontario, on the road between Long Sault and Gananaque on the morning of August 26, while sitting in the very back seat of a rental van, I took out Mona the iPhone and launched an Internet search for folk tales about mirrors. This is how it all ended. A concert story was performed in Edmonton on August 31, and a 50-minute set was performed on September 1. I have the recordings to prove it. I did the hard work of preparation. I did the suffering. But Panic is taking all the credit. These days Panic is feeling pretty smug—pretty proud of herself. “Bow for the applause,” she sneers, “but let me just say that you couldn’t have done it without me.” And, reluctantly, I have to admit that she is probably right.

INSPIRATION

“Inspiration is arousal, awakening, creativity, deep thinking, elevation, encouragement, enthusiasm! Let's Share It.” INSPIRATION IS BLISS “Inspiration is the act or power of exercising an elevating or stimulating influence upon the intellect or emotions;” Wikiquote Being an inspiration to others is one of my favourite pastimes these days. There I sit, charged with the job of spotting and reducing depression in elderly people. More often than not they have recently endured multiple disabilities or losses, Now they are trying to build a life with partial vision. “You are an inspiration to me,” they say, and I am pleased because their words indicate signs of arousal, awakening, creativity, deep thinking, elevation, encouragement, enthusiasm, the vibrant positive emotions that push aside the symptoms of depression. They will need to engage all of these positive qualities to deal with the daily challenges they will face. It seems strange to me now, but I used to bristle if someone said I was an inspiration to them. It happened often enough back in the old days when I worked with elderly blind people. They were 79, I was 29. I guess I was thinking more of what I needed and less of what they needed. I needed assurance that I was competent, professional, a normal person who just happened to be blind. They, I believed, needed a white cane, or a braille watch, or an attitude adjustment. I needed to provide those things in a most professional capacity. I was younger back in those days, still proving myself to myself. Elderly people with partial sight are probably not much different than they used to be, though they are a little older on average. I, however, am quite different. “You are an inspiration to me,” they say when we have explored the alleys of the mind where depression lurks. The words ring differently these days when I hear them from people who are 89. I hear them through the ears of a woman who is 59—though I don’t hear as well as I used to, and my bones break these days when they never used to, and my back isn’t what it could be, and my knees pop and crackle when I move. I realize that what they are experiencing is not the simple loss of vision, but a new insult to the body heaped upon layers of insult that have been accumulating for years. If inspiration is the act or power of exercising an elevating or stimulating influence upon the intellect or emotions, then an inspiration I am proud to be. For the best defence against the gloom that accompanies depression is the power to rise above it, and anyone who is still looking for inspiration at the age of 89 deserves to find it. The least I can do is make it easy to find.

WET FLOOR!!!!

Want to hear something spectacular? Well then, go down into an underground station of the LRT in Edmonton. Make sure to be in a station with concrete walls and a high ceiling that echoes like the Swiss Alps. Wait for a quieter moment. Then pull out a white cane, take a few quick steps forward and propel a WET FLOOR sign into space. (Note: I suspect you don’t have to look for a station that has a wet floor. Pretty much any station will do.) Wait for the sign to clatter back on the ceramic floor, hit it a second time if it lands in a straight path just in front of you, and you’ve got a hubbub worthy to remove the ear buds and turn the head of even the most obtuse teen-ager. Is it just my imagination, or are WET FLOOR signs more popular these days? Admittedly, my memory isn’t what it used to be. I check three times to make sure I turned the oven on, four times to be sure I turned it off. Still, you’d think that a person with the capacity to spontaneously recall half the lyrics to half the songs on the pop charts of 1966 would not have forgotten the WET FLOOR signs from the good old days of her youth. Surely she would have noticed them if they had been as popular as smokers in Ladies’ washrooms. Or is it just that, in these smoke-free times, a lot of things have become more clear? Anyway, until somebody proves me wrong, I am going to stick with the theory that there are more WET FLOOR signs than there used to be. I’d say they border on the ubiquitous. You find them in places both private and public—taking up 90% of the available floor space in the washrooms at Tim Horton’s, cluttering the vast expanse in the tiled lobby of the dentist’s office, not to mention the place where I encounter most of them—centred boldly in the narrow pathways that lead from the street to the trains of the LRT. Why, just last week—on a single trip to work--I took out four of them—sent them flying, spinning end over end, clattering on their sides, sliding like hockey players on their way to the boards. . Each encounter in its turn was surprising, noisy, a moment of high drama. Four encounters in the early morning rush of sleepy commuters. A record to be sure, and still I’ll never know how many possible others I missed. There is a difference between being noticed and being stared at. I am not, and have never been, the kind of woman who likes to be stared at. Give me a joke, and I’ll try to make you laugh. Give me a stage with a mic and I’ll tell you a story, might even sing you a song. But send me out to work on a sleepy commuter morning, and I would prefer to be unnoticed or at least to imagine that I am unnoticed. I would prefer to have digital WET FLOOR signs flashing high on the walls rather than littering the floors in the most obvious paths of travel. I would prefer to be able to see these blasted items of clutter and not hit them at all. At the very least, I would choose to have WET FLOOR signs present only when floors are wet, rather than hanging about for hours on floors that probably dried yesterday. But if I can’t have any of these things, then please endow me with the delusion that the WET FLOOR sign launching event is one of the funniest entertainments of the day, if not for the startled on-lookers, then at least for me. Let me hear the applause when a perfect hit is made! Let me bow in humble gratitude for the twisted fate that presented the opportunity to entertain! It’s not such a big stretch of the imagination, is it?

REHAB THEN, HOPE WORK NOW

These days I am reflecting a lot on the differences between what I knew then, and what I know now, what I did then and what I do now. This week it will be 36 years since I got my first real professional job—a position at the CNIB, providing services to people with very low vision, mostly seniors. I was 23 years old, looking forward to a lifetime of infinite possibility. The seniors I met were inspired by me, and that was good, but they also pitied me—many of them in unguarded tearful sympathy. “You are so young,” they would cry in tremendous distress. “It is so sad.” I was immediately defensive. I did not want their pity or their tears. I wanted to give them accessible alarm clocks and library books on tape. I wanted to offer them white canes to ease their travel and magnifiers to aid their cooking. In short, I wanted them to stop grieving their losses and get on with the business of planning productive futures for themselves. Though many of them welcomed me and the great services I came to deliver, emotionally, it was difficult for me to reach them with anything more personal than professional detachment. Except for shared humour, an asset that worked wonders for me even at that early stage in my development, I wanted to set a boundary that said, “I am not you. Don’t pity me. I am young. I am doing fine. I am planning a great future. Leave me out of your sadness.” Years passed and I moved on to other employers, other educations, other life stages. Now, 36 years later, I am seeing people of that same population, seniors with low and deteriorating vision. Things are the same, and also different. The CNIB still delivers accessible alarm clocks, audio library books, white canes and magnifiers. More people are being served, and the population is older, largely because people are, in general older and healthier than they used to be. I am now a Registered Psychologist who has been hired because of my long experience in counselling for depression with people in all sorts of difficult situations. Others deliver the clocks and canes and such to my clients. My job is to deliver the emotional well-being that will inspire people to be the best that they can be. Something else is different too—and that is my point of view. A man has come to my office. He’s a young man by my current standards, only 77 years old. He’s had audio books for quite a while now. He was twice prescribed antidepressants—something that would never have happened to such an ordinary man 36 years ago. He stopped taking them both times. “They didn’t help,” he said. I start asking him about other medications he is taking—something I would never have done 36 years ago. He tells me about some, giving me the reasons why he got them. To show that I understand how he feels, I tell him I am almost 60 now, coping with ailments one at a time, quite often looking back with longing to the days when I could simply jump out of bed first thing in the morning without first causing to call a meeting of my body parts to ask who wants to move first. He starts to laugh. He tells me how frustrated he is with his television. He can’t operate it. He can’t see the menu on the screen. When I say that I too am furious that we can no longer get a television that a blind person can use, he perks up and tells me he wants to smash it. I get this. He has learned, as I have learned, that one wrong move on the remote will disable the TV and you won’t be able to use it until a sighted person comes along. He has learned how easy it is to make that one wrong move. We are different in TV watching, I not having much time for it. But I am well aware that in only a moment I also will be 77 years old, no longer employed, a woman with plenty of time to watch a TV I may not be able to use because I can’t access the information about channel and volume changes. Together we talk about the kind of message we need to deliver to TV manufacturers. We envision TV-throwing events where we will go together. He is laughing again. I am noticing that seniors don’t pity me any more. They see that I am almost 60 and have somehow wended my way through life’s challenges. Instead of talking about the magnifiers they need, we talk first about the times in their lives when they were faced with unwelcome changes. We talk about what they did in those instances. We wonder if they have changed much since then, if they still intend to be resilient, to be forward-looking, to take what comes to them and move on. They will hear and internalize this kind of talk from me because they can see me counting the years of my own future. Now that we are standing on the same ground, it’s hope talk pure and simple. “This is the kind of person you proved yourself to be. In the face of this unwelcome change, what kind of person do you hope to be?”

WISDOM TO KNOW THE DIFFERENCE

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. –Serenity Prayer I once knew a woman who used a TV reader. It had a camera to take a picture of a page and a big screen where letters were magnified in large proportion, so large that only a few of them could be viewed at any given moment. She kept it in her livingroom, close to her kitchen. While her husband was in charge of the family finances, she used it every day to read books, magazines, knitting patterns and recipes. Later, when more day-to-day responsibilities fell to her, she read the daily mail in its entirety with its assortment of letters, notices and bills. The reader came from the CNIB. She came into possession of the thing when she was in her late 70’s, a time when her glasses had more than disappointed her. She had age-related macular degeneration, they said. It would rob her of her central vision—her reading vision. These days I think often of this woman because I am meeting others like her. “I think I need some new glasses,” they say to the ophthalmologist. “You have age-related macular degeneration,” he says in response. “Glasses won’t help.” “I just think I need glasses,” they say to the technician in the ophthalmology clinic. “You have age-related macular degeneration,” says the technician. “Glasses won’t help.” They come to me. “What is your eye condition?” I ask. “I can’t remember the name,” they say. “I just think I should be having some new glasses. My glasses haven’t been changed in six years.” Early dementia, I say to myself in my best Clinical Counsellor language. Maybe depression too. Then I begin a conversation about the people they are, the things they love, the way they deal with problems, the things they have learned and taught and lived through. They sparkle, they shine, they laugh, they cry. They give me advice. They ask me questions. Doors of conversation that seemed closed are opened. Anything becomes possible! When an hour has passed and it is time for them to leave, I venture into a conversation that was impossible an hour earlier. “You know,” I say, “I work for the CNIB and I think we have some magnifiers that could help you. Would you like me to arrange for you to have a look at them?” “Oh thank you,” they say to me. Graciousness and gratitude fill the room. “I don’t think I want to be referred to the CNIB to look at magnifiers. I just think I need glasses. It’s been six years since they last changed my glasses.” I think of the woman who read bills and recipes under high magnification for the last 20 years of her life and I wonder what made her different from them.