The Handicap Of Vision

The Handicap of Vision

Learning the Skills of Blindness

A speech given by Elizabeth Lalonde at the Canadian Federation of the Blind convention September 2005.

As I mentioned earlier, I'm so excited about this convention.

It is giving us a chance as blind people and as parents of blind children to think and talk about blindness openly, honestly and in ways we may not have imagined before.

Sometimes it is easy to accept a practice or approach because it is common, because it is the way things are done.

But today we are thinking beyond what is accepted and considering alternatives. I want to tell you about myself and my experience as a child growing up with limited vision, and about some of the road blocks I encountered and how to prevent these from happening to yourself or your children.

When I was two years old, my aunt noticed I was looking sideways at my toys, and she suggested to my mother that she get my eyes checked.

A few weeks later, my mom took me to an ophthalmologist. My mom says after the doctor peered into my eyes with bright lights, he turned to her and said I had a condition called Retinitis Pigmentosa. He then explained the severity of my visual impairment in detailed medical language. But my mom says the only thing she remembers from that visit was the doctor saying that I would never go blind. That comment – that I would never go blind - set the stage for how teachers and other professionals treated me in my growing-up years.

I cannot imagine the fear my mother must have felt as she took me by the hand and walked out of the doctor’s office. Not only had she learned that her daughter had a severe visual impairment, but she was also going through a divorce and must have felt isolated and alone.

Well, my mother demonstrated her strength that day and through all the days, months and years to follow. I always say it is because of my mother and her courage and determination and most importantly because of her inner knowledge in my capabilities, that I am successful today.

Just around my forth birthday, my mother and grandparents and I moved to Victoria from Calgary. I didn't know much about my new home, and when I turned to the big water on the ferry boat and yelled out the river, everyone laughed at me.

Of course I didn't have any friends in this new place, so on the day of my forth birthday, my mother and grandparents invited all the neighbour’s children over for cake, just a sign of their positive and never-give-up attitude - the attitude they passed along to me.

One of the first things my mother did when she got to Victoria was to go to the local CNIB office to ask them for assistance. My mom met a blind woman who was positive and cheerful and who read Braille as fast as anyone could read print.

Again, my mother doesn't remember much about that visit, other than that the people were nice. However, it is the things she doesn't remember that stand out sharply in her mind.

Although the woman at CNIB read Braille, there was no mention of me learning it. Although the woman had a white cane, there was no mention of me getting one.

A few months later, a teacher from the school district dropped by the house. Again, my mom remembers her as being nice. Even I have vague memories of her sitting with me at the dining room table talking to me and drinking the tea grandma brought.

I also remember the flash cards. The flash cards were narrow strips of cardboard with large black letters.

Letters, which the teacher said I would be learning to read.

My vision then was similar to the vision I have now, perhaps a bit better. It consisted of a doughnut with a bight out of the top. Basically I could see things along the outer edge of the doughnut and nothing in the middle. And these things I could see consisted of shapes and outlines and no detail.

I'm not sure what the nice teacher was thinking as I brought the card up close to my left eye to see the letters. That was the beginning of a close relationship I had with paper for the next few years. And when I say close, I mean it in the literal sense. There was me, my left eye pressed against the pages, my back slumped and nothing else in my field of vision, but a giant black letter.

The thing I remember most about books in my early years was the smell of the ink and the paper and not the actual words I was trying to read.

That home visit was similar to the visit my mom had earlier at CNIB, friendly, companionable, but with no mention of Braille or of blindness.

Instead of a blind child, they were treating me like a sighted child with poor vision. Instead of teaching me Braille, which I could have learned to read easily with my fingers, they were teaching me print, the medium of the sighted. They meant no harm. I'm sure they felt it was the right thing to do. They were working under the philosophy common to many specialists in the blindness field that if people have some useable vision, they should make the most of it, they should use it to its full potential.

So it went. I entered school as a visually-impaired student, and gained a collection of low vision aids and gadgets.

- A funny wooden board that raised and lowered to varying heights with a strap to hold in a book. This was supposed to help my posture. So I wouldn't have to bend over the books I was straining to read.

My most vivid memories of this miracle contraption were its strong wood smell and the annoying strap that never stayed in place and that had the habit of blocking the line of print I was trying to read.

- binoculars, (for reading the board and seeing distant objects. These proved redundant as I was only able to use my left eye.

- Then came the monocular - a brilliant invention, a lighter, smaller version of the binocular. No need to carry that extra monocle around if you weren’t going to use it.

I don't think either of these devices helped me very much, because instead of using them to read the board, I put them away and stood beside the teacher as she wrote math problems, while all the other kids looked don.

To this day I dread even the mention of arithmetic.

The funny thing about getting closer to something to see it, is that most of the time, the distant blurry blobs turn into close up blurry blobs. Nothing really changes.

No wonder I thought math was some secret code I would never crack.

- Oh, and I already mentioned the magnify glasses: the low vision clinic and the teachers for the blind gave me a progression of these little wonders.

Ones with little lights, ones that you held above the page, and ones that you slid across the page.

I remember the tickle of my eyelashes brushing against the glass. And the funny look of the letters, almost like little bugs crawling along the paper.

- And the king of them all - the clown and glory of low vision aids:

the visualTech.

This contraption resembles a television with a tray underneath. You place the book on the tray and the print is magnified many times on the screen.

These devices have been updated over the years. But I think the general idea remains the same. You will achieve literacy if you make the print as large as you possibly can.

I will never forget sitting in front of the class with my visualTech. I had two desks side by side to accommodate all my equipment, and the only place it would all fit was at the front of the classroom. I didn't get to sit with the other kids in the long, tidy rows of desks. Instead I stuck out, like a growth on a potato, my back to the class, the screen of the visualTech advertising its black, text-book letters for everyone to see.

The teacher liked to include me in reading-aloud time. Well, I guess that was part of integration. I should participate in all the class activities. I remember how my stomach dropped and my heart sped up as my turn approached.

And I remember my heart was the only thing that went quickly, because as I read, the combination of my nervousness, embarrassment of being in front of the class and the fact I could only see one letter at a time, resulted in a slow read.

These aids are all badges of the visually impaired. But unlike badges, I did not use these gadgets proudly. Instead they weighed me down, marked me as inferior.

When I look back on those years, I am amazed that I developed such a love of reading. Not even my extreme difficulty in seeing print deterred me from my life-long passion. I remember sitting for hours in front of the visualTech or peering through a magnify glass reading novels – Ramona Quimby Age eight was my all time favourite.

And of course I loved listening to stories. I sat on my grandfather's knee for hours listening to his made-up tails of KillerDiller the wolf who liked to chase little children, and snuggling in bed while my mom read from a book of fairytales.

Well, my printing didn't go much faster or easier than my reading. The teacher for the blind gave me special paper with wide black lines for my printing. I learned to write the letters with a black felt pen, and even though the other children's printing progressed from squiggly, crooked characters to more mature, straight letters, Mine remains to this day the printing of a grade one child. And there's nothing wrong with that, if printing is used for the odd note to a sighted person, a grocery list for someone else to read, maybe even a phone number left on the fridge for my husband. But there is something wrong with that being my only nonverbal tool for expressing myself as a child who was supposed to be learning literacy.

My grade five teacher got so frustrated with my mound of unorganized papers stuck in my binder that he sent it home with me one day and asked my mom to help me organize it. And I needed my mom to help me because I could not read any of it. Its no wonder my science notes were mixed up with my spelling words, and my creative writing stuck in with my math equations.

I know my mom - the organized, meticulous person that she is - is shivering even now as she sits here and remembers the confusion of that binder.

I think that was the year I learned to type. Twice a week after school with the teacher for the blind, I plunked on an electric type writer, memorizing home row and gaining speed. Learning to type made a big difference for me. I finally had a way to write legibly and communicate on paper clearly and easily.

Though learning to type was essential and benefits me to this day, it still was not perfect.

I can still remember the story I wrote in creative writing: adventures in the cabbage patch. The characters were just right, Sandra the heroine, beautiful and brave, and the ending was perfect, full of suspense, when Sandra saved the day and kept the cabbage patch safe from the angry lords. How proud I was when I took the stack of typed pages to mom for her to read, how devastated I was when I learned all the pages were blank. We forgot to change the ribbon.

Then there was my white cane, conspicuous in its absence.

I cannot blame anybody for my refusal to use it. Goodness knows they tried. I’m sure my orientation and mobility teacher is shivering with frustration as I reminisce.

Only rarely would I use my cane, like when crossing a busy road, and then I took it out of my bag cautiously, afraid someone would see me, like a criminal involved in a covert operation.

I would use it to cross the street and then quickly fold it and stuff it back in my bag.

What might have helped me in this process was if I had met other people using white canes and using them proudly and with confidence, young people like me and adults with successful lives.

But in elementary school, there was none of that. The only role model I had was a blind woman a few years older than me. I looked up to her. unfortunately, the one thing that stuck in my mind about her was a story she told about how she loved going downtown without her cane, and how she hated using her cane, and how she felt better about herself when she didn't use her cane.

Yes, that was the message I heard, and I heard it loud and clear.

Another thing that made it more difficult for me to use my cane involved the timing of its introduction. Since I was born blind, the white cane should have been introduced in my preschool years. I should have grown with my cane. Just like my arms and legs grew, my cane, like another body part, should have grown too.

Instead it was a foreign object that fit awkwardly in my body space and seemed, at the time, more that a hindrance than a help.

I trudged along this way through my elementary school years, nervous, shy, afraid of being different.

I remember the day I finally broke. It was in grade seven during a science test.

I was sitting in my usual spot in front of the class trying to read the questions with my visualTech. There was a time limit, and I wasn't going to finish. I had studied the night before with the help of my mom who read me the text book.

I started to cry. The teacher noticed my tears and came over. He sent me out of the class room and asked another student, Adam, - the brain of the class, who had already finished his test - to read me the questions and write my answers.

I sat in the hallway on the floor beside Adam feeling stupider than ever before.

I was nervous and intimidated. Adam was smart, what if I got some of the answers wrong.

Then all of a sudden, I couldn't remember anything that I'd learned the night before. My mind went blank. I cried again.

The teacher called the teacher for the blind. She came right away and took me into the medical room where I could relax, and she read me the exam. I got an A on the test.

That day was the turning point. That was the day we began to acknowledge that my life as a sighted child with low vision was coming to an end.

It was the start of my transition to a blind person, and this had nothing to do with my level of vision. Instead it had to do with a change in my attitude and the way I saw myself.

I didn't make a complete or sudden change over. Instead it was a slow, step by step process that eventually lead me to where I am today.

This period of my life I like to call my audio world.

I got a talking calculator, a talking watch and a talking clock. And my first text book on tape.

The teacher for the blind began reading all my exams to me and writing my answers.

And miracles of all miracles, I got, what we would now call an ancient and primitive ancestor of the talking computer, a Small Talk. I remember the day when she brought me this amazing piece of equipment. And I remember when we first turned it on and heard its synthesized voice.

This audible voice, distorted, monotone, and beautiful to my ears.

No matter how bad the voice on my Small Talk was, the messages it gave me were simple and clear.

This device was portable. It had one main area for typing documents. It had no hard drive or memory. The only method of saving my work was on a mini cassette. Somehow this tape saved all the information I wrote in the computer.

I should say, was supposed to save, because I remember many nights spent crying after my Small Talk decided to loose my homework.

Well, it certainly wasn't perfect, but it was a huge improvement over my messy grade five binder filled with my own print that I couldn't read.

The following year I entered junior high school and began a new phase in my life as a student. Because of my average performance in elementary school, my parents and teachers decided not to put me in any advanced or enriched classes like some of my friends, but

instead to enroll me in all regular classes.

Surprise, with my new audio method of learning, my grades shot up from C's and C pluses to A's and A pluses. Nobody could believe it. I couldn't even believe it. All my life I thought I was an average student of average intelligence. It was as if a foreign being had risen inside me bringing with it, knowledge and ideas and more importantly confidence in my abilities.

A few months into the school year, my teachers and parents had a meeting about my progress, and they decided to put me in some enriched courses, including social studies and English. Notably, they kept me in regular math and science because my performance hadn't improved much in these areas. .

Well, my experience in junior and high school definitely went better than elementary school.

However, despite all the wonderful technology, talking gadgets, and the improvement in my grades and confidence, there was still something missing, a piece of the puzzle that didn't fit.

I was still walking around everywhere without my white cane. Oh, yes, it was usually tucked away safe an warm in my purse or my school bag. I'm sure if there was a warrantee on white canes, I would have gotten a full refund on mine, because it looked as new as the day I first got it. There were no scratches or dents or even a warn tip on my cane. It was shiny and clean and pristine from lack of use.

I got away with not using it, just barely, or so I thought, I had and still have enough vision to see shapes and objects, and can usually avoid them as long as my eyes are cocked to the side, and I focus all my attention on where I am going. Concentration was my middle name. Somehow I managed to walk beside my friends and pretend I heard what they were saying, or go down a sidewalk by myself and miss the sound of the birds or the smell of the grass, because I was focusing so intently on the pathway in front.

So yes, I could get around with out my cane, but boy what a price I paid for this false freedom.

I remember my mother's stress when we went shopping together. There I was, this supposedly sighted teenager, prowling through the stores, touching everything, pushing my face into merchandise, missing the eye contact of the store clerk or the smiles of the other shoppers. My mom felt she had to explain my behaviour, and she did the best she could. My daughter can't see very well. I think that was the catch phrase back then, that or the ever-popular visually impaired.

Those phrases always lead to road blocks. Because the predictable response to I can't see very well or I am visually impaired is confusion, uncertainty or the dreaded question: "Oh, can't you get glasses?"

Well I was prepared to accept all of it: all of the misunderstandings, all of the missed opportunities for conversation , or even a simple hello. I even preferred people think I was stupid or clumsy. Yes, all of this was OK. Anything was better than people finding out the truth. Anything was better than people learning I was blind.

To be fair, I don't know exactly what kept me from the realization and the acceptance that I was blind. Was it because none of my teachers or medical staff told me I was blind? Was it because these well-meaning people focused so much on my residual vision that they forgot to focus on my lack of it? Was it because totally blind people were some far off alien species, who I had nothing in common with? Was it because, I had rarely met another blind person before?

Maybe it was a little of all of these.

Of course on occasion I had met other blind people, on my rare visits to CNIB or when I went to a special recreational event, but for the most part, I had only been around sighted people, sighted children. I had sighted teachers and sighted friends. So of course I related to sighted people and attempted to emulate them.

Sighted people didn't use canes so why should I?

The reasons for my inability to identify myself as a blind person are complex, but the most important thing was finding the way through these foggy and murky layers to the truth and the reality of my blindness.

And as you can tell from this speech, this discovery didn't happen suddenly.

One of my first and best blindness memories was going to summer camp for blind teens on Bowen Island.

It was the first place I ever went where blindness was normal. In fact it was the thing to be. I had my first boy friends at camp. I met my first love at camp. I met some of my oldest friends at camp. I was popular at camp. I was blind and I was popular. I didn't know these two words could exist in the same sentence, let alone actually happen.

Another great blindness memory was meeting my girl friend. She was just beginning to lose her sight from Retinitis Pigmentosa, the same eye condition I had. The teachers for the blind brought us together to meet. She lived in Vancouver. We met at the white spot, two thirteen year-old girls with something important in common. WE sat at our own table and got acquainted and ate hamburgers and laid the foundation for a friendship that remains strong today.

I also remember my orientation and mobility teacher getting a group of us blind teenagers together, from across BC for a day in the big city. He sent us out and told us to find a restaurant, and, for the first time, the experience of traveling was exciting because, for those brief hours, we were together. We were the same. We were one.

Gradually I became more comfortable with myself and with my blindness. My cane poked a little more from its refuge in my bag, and I began carrying it folded in half. Well, at least it was out in the open.

It was all about baby steps.

I didn't actually use it full out and all the time until I entered college at he age of 18.

And even then, I wasn't entirely there. One of the big tests of my cane comfort was when I opened it for the first time as a young adult in a night club.

And, despite the confidence I have today, it wasn't until last month at my stepsister's birthday party that I held my cane tall and upright Federation-style in front of me as I sat in a chair. And for the first time enjoyed the relaxation of not having to fake sightedness, as new people entered the room.

This is one of the main reasons the National Federation of the Blind promotes the use of rigid unfoldable canes. It hasn't got anything to do with convenience, or maybe it does. The National Federation of the Blind believes in making it very inconvenient for a blind person to hide away their cane in shame. Bravo for the National Federation of the Blind.

So here I am, 32 years old and born blind, and only now reaping all the benefits of my heritage

I want to talk about the heritage of blindness, and some of the entitlements it affords. I've talked about the importance of the white cane and the freedom and sense of empowerment it gives us. I also want to talk about Braille.

I mentioned Braille at the beginning of my talk, and then it became noticeable in its absence. Well, I am sorry to say that the biggest role Braille has played so far in my life has been its absence.

I was born with less than ten per cent vision, or to say it another way, I was born more than 90 per cent blind, I could at best see one large print letter at a time and that with considerable strain and discomfort, and I could not even read my own writing, yet I was not taught until much later, one of the most basic tools of blindness: Braille.

That, more than anything else, represented the piece of the puzzle that didn't fit in my life. The complete lack of Braille in my life until grade 10, when the teacher for the blind introduced it for the first time.

To this day I thank her for her wisdom. She taught it to me in a spare block of time during the school day and obtained permission for me to gain credit for learning it.

That old saying "better late than never," certainly applies to this. During that year, I learned Braille, how to write it and how to read it. And I used it for the important task of writing love letters to my boy friend. Well, if there ever was motivation to learn, that was it.

However, despite the significance of this step in acquiring the most basic of blindness skills, I know now, it didn't go far enough. Braille was still a foreign and isolated entity, separate from the activities of my everyday life. I continued to do all my work orally or with talking books and computers, and did none of my school curriculum in this new medium. Consequently, after my boy friend and I broke up, and after I passed my Braille credit course, Braille slowly, and steadily worked its way out of my life. The years went by and I entered college an university, and Braille became a distant memory, an impossible dream. The idea of actually using Braille on a daily basis and becoming fluent and literate with Braille, never entered my mind.

I was an A student, on the honour role in high school, and at the top of my class in post secondary. I loved books and was an avid reader, yet the fact remained that I was illiterate in the true sense of the word.

I am not being hard on myself, and I think talking books are wonderful. I am proud of myself and my accomplishments, and believe I managed well with the tools I was given. But how much easier it would have been to have Braille as another tool. Instead of being exempt from geography class, perhaps I could have learned about the world through tactile maps. Instead of straining to see large black numbers, I might have excelled at math, with knowledge of Nemeth Code. Instead of painstakingly memorizing speeches and developing a paralyzing terror of public speaking for fear of forgetting my lines, I could have read the speeches out loud with the help of some Braille notes. And instead of going into a restaurant and refusing the offer of a Braille menu, and relying on a sighted person, or even a Braille-reading blind person to read the menu to me, how nice it would have been to read the menu myself.

I emphasize my point about Braille being a tool. This doesn't mean that print should have been band from my life. I could have easily learned Braille and print and used both, depending on the situation.

Well, I can talk forever about lost opportunities, but this serves no purpose other than for others to learn from my experience. There are no more excuses, and now that I am so privileged to be the leader of the Federation in Canada, I must learn Braille and learn it fully.

Some of you may know that I am reading this speech using my type and speak, repeating the words as I hear them. It works for now and solved the problem of memorizing a 30-minute speech. But it is not a permanent solution.

My goal one day is to read a speech in Braille.

Braille came back into my life two years ago when I became pregnant with my son Rhys. I needed some motivation, and Rhys became that motivation. I wanted to read to him, and not just by listening to a tape or CD, or by making up stories (though there is nothing wrong with those methods), but by really reading him a book. So I spent every day practicing and re-learning the grade 2 contractions with the Braille learning book. My goal was to read a print Braille book called "Hurry Up Franklin."

Well, I reached this goal." I admit I read at a speed slower than the turtle in the story, but I read it. and I am practicing and gaining speed everyday.

I hope the meaning of the title of my speech, "The Handicap of Vision," is now clear. In the Federation, one of our philosophies is that blindness is not a handicap, but a characteristic, and that with training and opportunity, blind people can compete on terms of equality with our sighted peers. It is true that with the proper skills, such as Braille and cane technique, and with opportunity, and with self confidence and successful blind role models, and yes with some practice, blindness is not a big deal. But without these things, blindness is difficult and is a handicap. Having low vision without learning blindness skills, creates a handicap.

I appeal to all of you in this room to think about what I am saying, to think about the handicap of vision, to think about how important it is to give all blind people, no matter how old we are, no matter how much useable vision we have, the opportunity and the encouragement to learn blindness skills, to learn the skills of our heritage.

I am not against using vision. I use my vision all the time. I see some colour, if it is bright and contrasting and I love playing with colour to create my wardrobe and to decorate my house. My sight sometimes provides me with another tool for navigating my environment and for going around objects. However, this sight serves as an additional tool, a supplement to my blindness skills. The blindness skills are the foundation and the visual tools an extra method. And not the other way around, as is usually the case in conventional rehabilitation and teaching.

It is interesting how even in the blindness field, we as blind people are divided. We are divided according to degree of vision - by numbers and terminologies that have little value - 20 over 200, tunnel and peripheral vision, legal blindness, and even the peculiar recreational sport classification: B1, B2 and B3. If you don't know: B1's are totally blind, B2's are people like me with a bit of vision, and B3's are people who meet the legal definition of blindness, but who still have a comparatively higher degree of sight. No wonder people are confused. No wonder people find it difficult to identify themselves as blind.

We try to reach a level on this latter of sightedness, and we climb over each other in the race for the top.

Well, I say forget this latter, and forget the climb. Join me and all Federationists on the ground, the finest, most sensible and most rewarding place to be.

One of my reasons for being here and for loving the Federation is because of its positive, and proud perspective on the abilities of blind people.

I shutter when people ask me if I have any vision. When I say yes. I can hear them sigh, and their well-meaning comments about how glad they are that I have some sight - how I am lucky - how much easier my life must be because of that little, tiny bit of vision. And of course what they don't say rings even louder in my ears. What they don't say, but what I know they are thinking is - how much harder they think my life would be if I was totally blind - how much more effort I would have to put into things - how totally blind people could not possibly function as well as I do because they don't have any vision. I cringe just thinking about this common miss-information about the abilities of blind people.

In closing I thank the Federation for what it has given me and for what it will give people in the future. Thank you for letting the world know the truth -- that Braille is literacy, that the white cane is a symbol of pride and equality, and that, best of all, it is respectable to be blind.