Archive for November, 2013

Feature Writer Jane Kronheim – The Learning Pillows That Were Sent Far and Wide

After working on the Learning Pillows for several years, I started to get feedback from many people and agencies across the globe. Requests were often specific and spelled out the hidden needs of many families where blind and visually impaired children lived. I recall a hand written letter from a family in West Virginia. They asked if I could send them the parts and pieces of one particular Learning Pillow so they could put this together in front of their children. I learned that they had a blind two year old at home, and another child who was attending the school for the deaf and blind in that state. As an aside, they also shared that a child who “lived around the block” enjoyed the Learning Pillow and the accompanying story. I remember how that one request really touched my heart, as I continued to sew and stitch and blend together the tactuals and visuals that were attached to these colorful felt pillows.

During the late 1980’s I traveled to Israel to present my Learning Pillows to a gathering of international vision professionals. This took place at Hebrew University in Jerusalem. It was a wonderful experience and even though many attendees did not know English very well, they quickly understood the design and purpose of each Learning Pillow that I demonstrated and discussed. While there I traveled to Tel Aviv and Haifa. There was a wonderful preschool program located in Haifa where blind and visually impaired preschoolers learned together. When I visited that preschool, I presented a Learning Pillow to them called “The King and His Closet.” Immediately upon seeing it the teacher exclaimed: “The King character looks just like Ben Gurion!” I hadn’t realized how much the face with a bald spot on top of the head and vivid white hair stitched on either side of the face did indeed look just like Ben Gurion, who was the first Prime Minister of Israel! The teacher and I laughed heartily with this revelation. It was then that I devised a story about Ben Gurion that could possibly connect with this particular pillow. I never knew what would happen when I shared a Learning Pillow!

When early learning materials are designed with a cross cultural purpose in mind, they can go anywhere and reach any child who is ready to learn early literacy concepts. Often the concepts involved directionality and movement like: in, under, on top of and in between. Those ideas were always present in the story of “Mr. Bug Tries to Hide”, another Learning Pillow. Imagine how blind and visually impaired children could learn what that means when playing with the Learning Pillow and then trying to relate those spatial ideas around the house, or apartment or hut, or tent, or where ever they live in the landscape of the world! And that is what happened with the Learning Pillows as they went to far flung places.

Some families of blind children traveled to Boston for eye care with a well known retina specialist with whom I happened to be working at the time. These families came from some rather exotic places like Saudi Arabia, Chile, and Afghanistan to mention a few. I recall when the family from Chile remained in the Boston area for many weeks. They had housing assistance from the Salvation Army and at one point I found out that they wanted to speak with me regarding the educational needs of their child. We met at my apartment in Watertown where I lived at the time, and we had a joyous “meeting of the minds” when I discovered that the mother was a teacher who very quickly understood the meaning of my Learning Pillows for her child. Even though we could not speak each other’s language perfectly, we immediately communicated how these early learning materials could help their young blind child. These are just a few of the many stories I recall about the development of the Learning Pillows and how they nurtured the early learning concepts of the young blind and visually impaired child.

Feature Writer Ann Chiapetta – Passengers Protest In Support of Dog Guide Team

People with disabilities are often challenged whenever engaging with the general public. Take Albert Rizzi. He was returning from a business trip, catching a connecting flight from Philadelphia to his hometown near Islip, New York. Albert is blind and travels with his dog guide, Doxy. They boarded the U.S. Airways 35 seat turbo jet and like the other passengers, strapped in and waited to take off.

Based on what Albert and the news media have described, the flight attendant did not act upon the simple task of reassigning Albert and his dog to a more appropriate seat, to ensure both their safety and comfort. By not doing this, the flight attendant made a serious mistake and it resulted in an argument culminating in Albert being unfairly treated and escorted off the plane. Due to the apparent ignorance and negative attitude of the flight attendant, not only was Albert supported by his fellow passengers but the same passengers all left the plane in an act of solidarity.

What I find the most intriguing about this situation is that folks protested the unfair treatment of Albert in an act of boycotting, by walking off the plane. If you may recall, the definition of boycotting is a group’s refusal to have commercial dealings with some organization in protest of its policies. Based on what I’ve read and from what Albert has described and the statements of the other passengers, I believe this indeed happened. U.S. Airways has a lot to answer for and I hope Albert receives an apology and compensation for the way he was treated. I also hope this incident acts as the fulcrum to fuel better training for the airline industry. In the meantime, I will not do business with this airline in support of Albert and the other passengers.

To read more try the following links:
1010WINS radio link:
http://newyork.cbslocal.com/2013/11/14/blind-l-i-man-says-he-was-kicked-off-plane-over-guide-dog/
For a video blog on Yahoo Trending:
http://news.yahoo.com/blogs/trending-now/airline-passengers-raise-objections-when-blind-man–service-dog-are-kicked-off-flight-172524277.html?vp=1
And, the article on CNN:
http://www.cnn.com/2013/11/14/travel/blind-man-us-airways-incident/

Feature Writer Alena Roberts – Giving Blind Students the Challenge of Learning to Ice Skate and Play Hockey

This term I had the opportunity of attending our state’s annual Paralympic Day. The event featured three Paralympic athletes who were there to teach our students judo, tandem bicycling, field events such as shot put and javelin, and goal ball. Since I didn’t have this kind of opportunity when I was growing up, it was great to participate and learn about sports that I had only heard about. I also really enjoyed seeing the kids have so much fun. This week, I came across an article about a program in Canada that teaches young blind students how to ice skate and play blind hockey.

The organization’s last event was in Calgary where they hosted 27 blind and partially sighted elementary students. For many of the kids, it was their first time ever skating on ice. It’s events like these that demonstrate to blind children that they can do anything they put their minds to. They may have to adapt how they play a sport, but they can still participate and be athletic.

Some may be wondering how people with limited or no vision could play a sport that not only requires a lot of strength and balance, but the ability to hit a small disk. The answer is that it comes down to practice, some players have enough vision to see the puck, and the puck is slightly larger and it makes noise.

According to Courage Canada, the organization that teaches blind hockey, the sport has existed for decades, but it wasn’t until recently that there was a consistent set of rules and a standard puck. Canada has four adult teams, and this year will be the fifth National tournament. The hope is that blind hockey will spread to other countries and eventually be a part of the Paralympic games.

To learn more about Courage Canada and their programs, visit their website: http://www.couragecanada.ca

Magazine Contributor LeDon Becker – One Man’s Journey

This story is about one man’s short journey from full sight to total blindness and the establishment of the only currently operating support group for blind people in Dallas Texas.

It was early in May 2010. Everything was bright green; the leaves fluttered in a soft breeze and flowers were peeking their heads up out of the ground, promising a profusion of color. The sky was an azure blue and the bright sun made everything seem to sparkle.

As I looked out of the window, taking in the day, I was anxiously awaiting our upcoming trip to Alaska, a trip that my wife, Elaine, had wanted to take for several years. I had always said that the trip was too expensive for us, but she had finally convinced me to go, and I was excited.

All of my cameras were cleaned and ready for the trip. Visions drifted slowly through my head of me taking pictures of a grizzly bear walking near a cold stream, and maybe even one of a bear catching a salmon for breakfast.

With these pleasant images in my head, I turned back to my computer where I had been photo shopping my latest picture of a pretty lake. I thought that the sky looked empty and needed something to add interest and balance so I was inserting a pair of birds that I cut from another image. I looked up to select an item from the command line and I had a hard time making out the choices.

I had been having this problem for a little while now. At times the choices would look sharp and in focus, other times, they seemed a little blurry. I took off my glasses and rubbed them with a cleaning cloth. This time, when I put my glasses back on, I found that cleaning them had made no difference. I took the glasses back off and tried wiping them with the glasses cleaning fluid. I still couldn’t see any better.

I struggled with the picture and was finally able to make the desired changes, or so I thought. Later, when I asked a friend to look at my picture, he pointed out a number of problems that I had not seen. I decided that I must need new glasses. I called my wife at work and asked her to make an appointment for me with our eye doctor.

Two days later, I found myself in the chair in the doctors examining room. He came in and asked me how I was doing. I explained that I thought I might need stronger glasses. The doctor asked me to look at the eye chart on the wall, then he positioned my face on the chin rest of an examination machine. He looked into the other side of the device and shined a light into my eyes. The doctor even used a little magnifier to look into my eyes. Following the examination, the doctor told me that he wanted me to see a retina specialist.

By the end of that same week I was in the waiting room of another eye doctor. Eventually, I heard someone call, “Becker, room 103.” I made my way to the room and took my place in the examining chair. Once again, I read the eye chart and looked through the little machine. After his examination, the doctor told me that he wanted to take a picture of the back of my eyes. I went down the hall, where a technician inserted dye into the vane of my arm and took a few pictures of the back of my eyes. Back in the examining room, the doctor looked at the pictures of my eyes on his computer and said that they revealed that I probably had macular degeneration. Naturally, my first thought was, would I still be able to take my trip to Alaska. The doctor told me that he would give me a shot in my eye along with some medication and that I was to come back to see him as soon as I returned home.

Our trip to Alaska was divided into two parts. The first week was spent on a bus tour across Alaska. The second week was aboard a cruise ship. Soon after my visit to the doctor, we were on a plane winging our way to Seattle Washington, where we caught a commuter plane and hopped up to Anchorage, Alaska. When we landed, we were met by our tour guide, who took us to a really nice hotel and told us about a tour meeting that was being held that night. At the meeting, we were treated to a delicious steak dinner, and informed about all the things that we were going to do and the places we were going to see.

Early the next day, as we were getting on the tour bus, I noticed that as I came to the steps, they looked a little daunting. I held tightly to the rail as I stepped up into the bus. As soon as I was in the aisle, all was fine. The guide told us that we were off to the Denali State park. She said that, even though she couldn’t guarantee it, we might even see a grizzly bear there.

Sure enough, on the second day out, the driver stopped the bus and said, “There’s a grizzly bear down there.”

“Where!” Everybody wanted to know. It turned out that the bear was on our side of the bus. Elaine pulled down the window, while I put on my 300 mm telephoto lens.

All of the passengers were looking for that bear. Suddenly, everyone on the bus was excitedly shouting, “There she is down there in that driveway and she has a cub.”

Although, it wasn’t by a cold stream and it certainly wasn’t catching a salmon for breakfast, it was still a grizzly and I wanted to see that bear! I heard Elaine say, “Oh, yes I see it!”

“Where is it ?” I wanted to know.

“It’s just down there,” she said, pointing to where she saw the bear. Try as I might, I could not find that bear. Although everyone was telling me where to look, I could not see any animal, let alone a grizzly. In fact, I couldn’t even see the driveway where they said the bear was.

After a time, the driver started the bus and drove on. There would be no bear sighting for me. As we continued on, we saw a lot of wild life, but no more bears.

For our next adventure, we decided to take a plane up to the Artic Circle. Early the following morning, we were at the airport for a brief mandatory flight school. The training was held outside in a small picnic area.

I went into the restroom and washed my hands and wet a paper towel to clean the gash in my fore head. The cut wasn’t that bad, but perplexed, I wondered why in hell I hadn’t seen that sign.

We boarded the plane with no more mishaps. When we arrived at the Arctic Circle, it still wasn’t cold. In fact, to my surprise, the air was quite warm. No snow or igloos greeted us. My dream of crunching around in the snow and watching a dog sled race was gone. All was not lost though, my desire to walk around in white powdered snow was yet to come.

Elaine and I signed up to fly to the top of a large glacier. Before embarking on this side trip, we had to put on large rubber boots over our shoes so we could walk around in the snow. After landing on the top of the glacier we stepped out of the plane onto about eight inches of snow, which was packed on top of another thousand feet of snow, hence, the glacier. I stomped and crunched to my heart’s content.

The next day, we decided, that since we had seen its summit, we would take an expedition to the base of the glacier. We traveled by van to the general location, but to actually get to the place where the glacier melts to create a cold water stream, we had to hike about a mile. Getting out of the van, I put on the lens of my camera. As I walked toward the start of the trail, I tripped on a curb and went flying, face first to the ground, slamming the camera down as well. When I got up, I spoke sharply to my wife, saying, “Why didn’t you warn me about that curb? I have already told you that I am having trouble seeing!”

When I had had a few minutes to collect myself, I realized I needed to be more careful and pay closer attention to where I was walking. I apologized to Elaine for yelling at her and blaming her for my fall. Together, we walked to the base of the glacier, which was magnificent. The cold water stream, fed by the glacier, flowed past us as it rushed down river.

At this point, we had taken a cross-country bus tour and seen grizzly bears, visited the Arctic Circle, landed on top of a glacier, and walked to its base. This part of our trip was finished and it was time to go aboard the cruise ship.

As we were boarding the ship, I mentioned to Elaine that I thought that this was a very large vessel. She told me that it was one of the smaller cruise ships, which she preferred, because fewer people were aboard.

We showed our passports and went to our state room, located just past the stairs that led directly to the dining area. How convenient. We entered the room and found that our luggage had already arrived. The room was nicely furnished with a bed, a TV, a small couch, and a comfortable chair for lounging. The nicest thing about the room was the balcony, because it was on the starboard side of the ship, which allowed us to look out over the water at the other boats which were docked nearby. The only thing I found wrong with our state room was that it was so dimly lit.

Elaine turned on the TV and I decided to read. I turned on my Kindle, but something seemed to be wrong. I could only see half of the sentence. I had to move my head back and forth to read each line. Earlier, I had set the font size as large as possible, but this didn’t help. I told my wife that something weird was going on and I didn’t want to read any more. “Why don’t we take a stroll around the promenade deck instead,” I suggested. And we did.

A few nights later, we were sitting in the five star restaurant aboard the ship and enjoying delectable steaks along with glasses of wonderful red wine. A formally dressed maitre d’ served us and all of the wait staff was dressed in crisp uniforms with little caps on their heads. We were having a good time enjoying small talk, when I said to Elaine, “Why do you think that the lighting is so dim all over the ship? I have to be very careful with my footing on all of the steps we have to climb. I am constantly afraid that I might fall.” Her response was that it didn’t seem that dark to her.

After we left the restaurant, we walked to a little jazz club on board the ship. I love a good jazz group and could sit all night listening to them play. As we stepped into the club, soft music was playing, candles were burning on the tables, and a couple was swaying together in the corner of the dance floor. It all looked so romantic. Feeling the mood, Elaine wanted us to put our arms around each other and draw close together and gently move to the music. She asked, “Do you want to dance?”

Have you ever noticed some men are so unromantic and into themselves that they can’t understand how another person is feeling? At that time, this description perfectly fit me. I said, “No, lets just sit over here and listen to the music.” Thus, I missed out on the special feeling and love that she wanted to share with me. That was my first mistake and what is worse, I didn’t even realize what I had missed until long after the trip.

We listened to the jazz band for about an hour. We left the club and went to the theater where a musical was being performed. As we climbed the stairs to the entrance, I walked one step behind and a little to the right of Elaine. This way, I was able to watch her climb the steps, which made it easier for me to ascend in the dim light. As she stepped across the threshold into the theater, I crashed into a glass door that had not been opened.

“Damn!” I cried, “I didn’t see that door!” I propped open the offending door so someone else wouldn’t run into it. We entered and found our table. We enjoyed the musical despite the large bump that was on my forehead.

The next day, the ship docked and passengers were free to go on shore. Elaine and I planned to spend a little time exploring the city and having lunch at a local restaurant. As we moved down one of the main streets, window shopping along the way, we came to a jewelry store. Elaine said in a happy, excited, giddy tone of voice, “Here is where I get my free charm.”

I asked, “What charm?”

Elaine explained, “Didn’t you know, this shop gives a free charm to everyone on the ship. I’m going in to get mine.”

I thoughtlessly responded, “You don’t need a charm.” All Elaine wanted to do was to get a little memento of our trip. Maybe she would buy a bracelet to hold the charm.

“What a racket,” I thought. This store is luring people in with the offer of something free in the hope that they can sell you an expensive bracelet and some needless charms and charge you an outrageous price for them. What a skin flint I was!

Unlike at the jazz club where she had simply ignored my not dancing with her, Elaine was hurt and angry about my thoughtless comment. She clammed up and didn’t say another thing. That’s what she does when she is angry, which drives me nuts. I realized that I had made another mistake.

My wife had walked ahead of me up the street. I caught up with her and said, “I’m sorry. You can get a charm, if that is what you want to do.”

“I don’t want a charm,” she snapped. She stomped her way down the street. And I followed her with my tail between my legs. Luckily, Elaine never stays mad for long and soon I was no longer getting the cold shoulder.

We stepped into another shop, where I saw a ring with a stone whose color was the kind of passionate pink that sometimes appears in the sky at sunset. I asked the clerk to take the ring out of the case. I called my wife over to try it on and she thought it was lovely. She had seen a ruby ring that she also liked.

I told the clerk, “We’ll take them both.” I had to chuckle when I realized what that little free charm had cost me. I must admit that I have never regretted buying that ring with the pink stone. Elaine wears it often and has gotten many complements on it.

Our next stop was at the boat that was going to take us whale watching. It was a pretty vessel with a sight seeing cabin that could accommodate twenty passengers, although only ten or twelve people would be going on this trip. The boat was long and sleek and looked fast. It was a new boat, this was its first sight seeing season. Inside of the cabin were two long benches, one on each side. Large windows pivoted up and tilted so they could attach to the ceiling giving an open air view of the scene outside. Passengers who were setting on the bench looking out of the window had the same view as though they were standing on the deck.

We closed the windows while we were knifing through the water. When the boat reached a wild life area, we opened the windows to gain an unobstructed view. Our first stop was at an outcropping of huge rocks, which jutted out of the sea and made a little island. Several seals were sliding on and off of the rocks. I walked out onto a small deck at the front of the boat. From this position, I could see straight ahead and on both sides of the boat, while the people in the cabin could see only what was on their side.

On the little island was a very high rock, where a large seal sat watching the others sliding on and off of the rocks below. He looked like he was saying, “I’m the king of seals.” Quickly I raised my camera to my eye. At least, I thought that was what I was doing, but instead, the eye piece came to rest on my forehead. I slid the eye piece down to my eye and wondered why I had done that. It had never happened before.

Click, click, click. I was snapping pictures of the seal island as the boat moved past. I thought that I had gotten several good shots. As the boat picked up speed to take us to the next exciting spot, I returned to the cabin to check the viewer on the back of my camera, which displays the last picture taken. Something was wrong. I couldn’t see any color in the picture nor could I see its details. I figured some of the camera’s settings must have been off when I took the shots. I asked Elaine to look at the picture and she said that it looked pretty good to her.

I asked, “Does the color look good to you? It seems pretty faded out to me”. She affirmed that the color was fine. Puzzled, I change the view of the image on the back of the camera to a graph which shows the condition of the picture. The graph looked normal, No great peaks or gaps in the curve. So the picture had to be OK. I concluded that something must be wrong with the camera viewer.

Our next stop was just in front of a large cliff that slid down into the sea. Everyone was talking about a bunch of mountain goats that were standing on the edge of the cliff. Again, I went out on the little deck at the front of the boat, where ,three other people were standing. They were pointing up at the mountain goats. “They are just up there, four of them, two adults and two little ones.” a fellow passenger said as he pointed up at the cliff.

Look as I might I could see no mountain goats. I took the camera with the long lens on it and scan the cliff, but I still could not see the goats. The boat began moving off toward the next stop, where we hoped to see whales. I would have no pictures of mountain goats clinging to the side of a cliff.

I returned to the cabin and waited for our next stop. As I sat there, I looked at several of the images that I had taken. All of them looked bad. I came to the conclusion that something was definitely wrong with my camera viewer.

Just then, the crew announced that there were whales near the boat. I ran out onto the little deck and there they were huge humped back whales, right in front of us. I grabbed up the camera and the eye piece landed on my forehead again. I pulled it to my eye and got pictures of a whale spouting water and diving with it’s tail up in the air as it sank down into the ocean. I could see everything perfectly through my camera lens. We saw several more whales AND I got, what I thought were, several GREAT pictures.

That was our last stop and we were racing back toward home base. On the ship, our luggage was packed and ready to go. We had about two hours before we disembarked. Deciding to read a bit, I turned on my Kindle. When I looked at the text, I found that I could only make out one word at a time. At the end of a line, I had to go down one line and trace my way back to the beginning of that line and move from word to word again. This was so difficult to do that I turned off the device.

I went out to the balcony where Elaine was sitting and told her that there was something really wrong with my eyes and that I couldn’t read my book at all. She assured me that we would go back to the eye doctor as soon as we got home.

After a long trip, it was indeed good to be home again. When I walked into the house, the first feeling I had was to be glad that no one had broken in and taken anything. The air seemed still, almost as though the house had been lonely while we were gone. I sat on the couch in the living room resting for a while and, as I have so often done, I noticed how my wife has turned this house into a home. She is very good at decorating and even arranged the wall hangings artistically. Everything seemed so wonderful as I sat there. Home at last safe and sound, what could go wrong?

I decided that I couldn’t wait any longer to see my vacation pictures so I turned on the computer and got out the camera. I downloaded more than 1,000 images from the memory card. To my horror, I could not see the slide show on my giant monitor nor could I make out a single image.

I called out, Elaine, come here. Look at this picture. “What do you see?” She told me
that it was a picture of a bunch of trees with Mount McKinley in the background.

“Yes, I said, “Is it in focus? Does it have any color?“ She assured me that it was a perfect picture. I slowly went from picture to picture, but still could not make out any of them. “You have to call my eye doctor right now”, I insisted.

In the doctor’s office, I waited for him to come and look at the new images of the back of my eyes. He stepped in and asked me how I was doing. “Terrible,” I responded. Then I told him about the problems that I was having with my eyes.

My doctor looked at his computer for a while. With some concern in his voice, he explained that the images all looked unusual and that he wanted to talk to another specialist about them. He asked me to make a follow up appointment for the end of the week.

Early the next morning, the phone rang. Elaine picked it up and talked briefly then she came into the bedroom and handed me the phone saying that it was my eye doctor. The doctor told me that he had another specialist look at my pictures and he wanted me to see him. Evidently this new doctor would only be in his office for the next two hours and he could see me if I could get there before he left. I was frightened and I thought, “This has to be very serious.”

Immediately, we left for the specialist’s office. The new doctor studied my eyes and told me that I had one of two things wrong. The first possibility was cancer. Cancer! That word will set fear loose in the heart of anyone who hears it. I had tasted that fear once before and it didn’t taste any better this time.

The second possibility could be a virus. The doctor said that the only way that he could know for sure what was going on with my eyes was to do a biopsy. He asked for my consent to perform this procedure. I agreed. What else could I do?

The night before the biopsy was to be done, I moped around the house. I went to the computer again and tried to look at my vacation images. I still couldn’t make anything out in the pictures.

The next day I was lying under a white sheet and being wheeled into the operating room. The next thing I knew, I was in the recovery room with a big patch over my eye. The doctor instructed me to come to his office the next day for the results of the biopsy.

At the follow up examination, the doctor removed the bandages from my eye. After looking into my eyes with his instruments, He studied the results of the biopsy. The doctor explained that my loss of sight was due to a CMV virus. He told me that everyone has this particular virus in their bodies at all times and that usually, the natural immune system takes care of it. Because my immune system had been weakened by chemotherapy, the virus had gone unchecked and had invaded my eyes. The doctor gave me a prescription to fight the virus and told me to take the medication for one week and then return for a follow up exam.

When I got to the druggist, to my shock, I found that the prescription cost more than $800 over what my insurance would pay. I was not going to quibble about the price though, if the pills would save my eyesight.

Back at home, I discovered that my vision was a lot worse than it had been before the biopsy. The day before, although I couldn’t see little things like what was on my computer screen, I could at least see too get around. Now, I could see nothing but shadows and light. In front of the mirror in the bathroom, I couldn’t even see my reflection so I could shave. I couldn’t see to put tooth paste on my tooth brush. Anger and fear filled me.

I looked at my hand and found that I could make out the wedding ring on my finger. I could see its pretty stone, a dark brown and a light brown portion with a streak of white slashing through the center. I call it my rocky road ring. As I looked at it, a great emotion flooded throughout my body. I loved this ring, because it represents the love my wife has for me and the love that I have for her. Tears streaked down my face. I looked at the ring and sobbed as I lifted it to my lips and kissed it.

I went into the bedroom where my wife was resting and laid down beside her. With tears in my voice, I choked out, “I love you and I love my ring.“ Putting my arms around her, I lay still Until I fell asleep.

The next week, in the eye doctor’s preparation room, his assistant asked me to look at the eye chart on the wall. I couldn’t see the chart let alone anything on it. She shined a light into my eyes and asked if I could see the light. I told her that I could. She moved the light around and I pointed to where it was. The assistant put eye drops in my eyes.

The doctor came into the examining room and asked me how I was doing. “ Much worse,” I said. He looked at my eyes and told me to take the medication for one more week.

Although I am sometimes forgetful about taking pills, I was extra careful not to miss any during that week. Back at the doctor’s office, I anxiously waited for him to come in and check my eyes. He had me place my chin on the machine and he looked at the back of my eyes. After a few moments, he said, “Why don’t we give it another month, then we will take another look.”.

Because I could see light and dark and make out some objects, I continued to hope for recovery. In the meantime, we tried to carry on as usual. One thing that I liked to do was to cook for Elaine and myself. Unlike most men, I enjoyed going to the store and selecting foods for our meals. My wife didn’t especially like this chore, so it worked out pretty well for me to do the shopping.

I used to go to the store and walk up and down the isles selecting this or that food we had never tried. At times, I would choose something that we had not eaten for a long time and had forgotten that we liked. Now that had all changed. Although I could see the isles well enough to push a grocery cart with out bumping into people or displays, I couldn’t see anything on the shelves. Elaine and I would walk up and down the isles and, while I pushed the cart, she would tell me what was on the shelves that we were walking past. She might pick up a jar of pickles, for instants, and put it in my hands and ask if this was too big a jar for us. I would tell her if she should put it in the cart or not. In the produce isle, she might give me a bunch of carrots and ask me if we wanted to buy them. I would feel of the carrots and tell her if we should buy them or not. In this manner, we worked our way through the store.

On this particular shopping trip, I wanted to buy a bag of frozen peas. We made our way to the frozen food section. I couldn’t see anything in the freezer cases, so I told Elaine that I would stay with the cart while she looked for the peas. After a short search, I heard Elaine call, “I can only find a large bag of peas. Do you think that it will be too much for us?”

I said, “Just a minute, I’ll take a look.“ I left the cart and walked to where she was standing, holding the bag of peas. Taking the bag from her hands, I felt of the size. I didn’t think it was too many peas for us. I said, “ This will be fine
“, and I handed the bag of peas back to her.”

That was when I herd Elaine say, “LeDon, I’m over here.” She was standing farther down the frozen food isle.

Embarrassed, I told the person that I had taken the bag of frozen food from, “Oh, I’m so sorry, I thought you were my wife.” I don’t know what she must have thought when I took the package from her hands, but she had not resisted and had handed it over without comment. I am sure that she was stung by the idea of a stranger walking up to her and taking the food right out of her hands.

I walked over to where Elaine was standing and, while laughing at my mistake, I took the peas from her hands and said, “This is not too many peas for us.“ I thought, it’s getting pretty bad when you can stand right in front of a woman and not know weather or not she is your wife!

After a month, I went back to the eye doctor and he told me that we would wait another month and take another look. That was when I decided that I should get a second opinion.

I went to see the retina specialist at the University of Texas Southwestern medical center at Dallas. At the appointment, the doctor asked me what problem I was having. I said that my sight was impaired. I told her that I could see her standing in front of me, but I could not see her face and I could not see below her knees. I could only see her mid section.

The doctor asked me what type of treatment I had received and I told her about the prescription I had taken for the last two months. She examined my eyes and affirmed that she would have pursued the same line of treatment and recommended that I continue to take the medication.

I asked the doctor if there were a chance that I would lose all of my sight. Her response was that the chances were fifty-fifty. I hated that answer. To me, it seemed like she hadn’t given much thought to one of the most important questions I had ever asked in my life. I felt like she was saying, “Maybe you will or maybe you wont. Your guess is as good as mine.”

Before I left her office, the doctor told me about DARS, the Department of assistive and rehabilitative services, a state agency that works with blind individuals. She provided me with a letter certifying that I was blind.

Even with a letter in my possession that verified that I was blind, I couldn’t accept this grim reality. I still thought of myself as sight impaired. I could not think of myself as blind. To me, blind meant not being able to see anything. Despite my trepidation, when we got home, Elaine called DARS and set up an appointment,.

I decided to return to my original doctor for continued treatment. When He asked how I was doing, I told him that my site was still getting worse. When I asked if I should renew the prescription that I had been taking, the doctor indicated that this approach was controversial and didn’t prescribe any more pills. He asked me to return in a month.

As the days slipped by, my sight seemed to be getting worse and worse. Then, one Sunday morning, as I was walking down the hall to go to breakfast, I could tell that the dining room was filled with sunlight. Suddenly, I felt that I had an epiphany. It seemed to flow all through my body. My soul was filled with joy. I felt like God was whispering in my ear. I knew that my sight was as bad as it was ever going to be. When I stepped in to the dining room, I was very happy and had a big smile on my face.

I excitedly called to Elaine, “I am sure my eyes won’t get any worse than they are today. I won’t ever be able to drive, or do my photography art on the computer, but I can be thankful for the sight that I have. I can walk through the house and not run into anything. I can see my chair. I should be thankful for that.“ Elaine hugged me. That was a happy day for both of us.

Unfortunately, my happiness didn’t last long. No matter how sure I had been that my condition was stabilized, as the days dragged on, my sight continued to decrease. I wanted to cry.

Back at the eye doctor’s office, the physician told me that he could no longer see the back of my eye, because things were floating around inside it. He recommended an operation to clear out my eye. I dreaded having surgery, but what if the operation kept my eyes from getting worse? Wouldn’t it be worth the try? Of course it would, so I had the surgery.

At the post-opt visit, the doctor removed the bandage from my eyes, and shined the light into my eyes. “Can you see this light?“ he asked.

“No,” I responded. I couldn’t see the light. He moved the light around and asked if I could see it in various positions. I could not see the light anywhere. I was totally blind. I couldn’t even see shadows like I had before the operation. I could see nothing. I was blind, Why had I allowed the operation? I was devastated!

At the end of another month, I was back in the eye doctor’s examining chair. He took a final look into my eyes and told me there was nothing more he could do. The doctor explained that it was like when someone has a spinal cord injury and is paralyzed. Nothing can fix it. Nothing could be done to restore my sight. I would be blind for the rest of my life.

For months, I wrestled with conflicting emotions. Why had I let the doctor operate? On the other hand, what if I had lost my sight anyway? Wouldn’t I always wonder if the surgery might have saved the sight that I had?

I was desperate to understand why this had happened to me. Was it something that I had done or was it God’s doing? If God had caused my blindness, what had I done to deserve such a fate. I had not lived a perfect life, but I felt I had lived a pretty decent one. I was a good father to my children, I had never deliberately hurt anyone. After I had been in this mode of thinking for a while, I realized I didn’t believe that god did such things to people to punish them. I had to admit that it was just my bad luck that it had happen to me.

As time slowly dragged by, I found myself in a deep funk. It seemed like I had lost all that was good in my life. I could no longer do my photo art and most of my photography friends were avoiding me.

I felt like I was useless around the house. We had a problem with a light in the hall and I knew how to fix it, but I couldn’t see to do it.

Worst of all, I felt that I had become like a pet that my wife had just acquired. She did everything for me from cooking my meals, to paying the bills and deciding if the cars needed service. I did almost nothing but mope around the house Each day. I felt as though God had prepared a hell for me right here on earth.

One day, the phone rang and I fumbled my way around the room until I found it. I answered and the caller told me that her name was Jennifer and that she was a counselor with DARS. She asked if she could make an appointment to come to my house and visit with me. I made the appointment for a day and time when Elaine would also be home.

Jennifer rang the doorbell at the agreed upon time and introduced herself. Her voice sounded nice. The counselor took out her paperwork and asked a lot of questions like how long I had been blind. She gave me a catalog containing items that would be of special interest to people, who are blind. To demonstrate such adaptive devices, she also gave me a talking watch on a key chain.

As Jennifer was explaining to me what life would be like as a blind person, she said, “You will be able to do everything that you did before. You will just have to do it differently.”

I thought, what had she just said? It sounded like she was talking to a small child, who had just fallen down and skinned his knee. “Don’t worry, honey, everything will be alright.” Because I had become blind, did she think that I had become an idiot too? You can do everything that you use to do You’ll just have to learn to do it differently! Who did she think that she was kidding?

What would I have to do differently to allow me to look at a sunset? Would I ever be able to see two lovers kiss again? I would never again be able to engage in photo art no matter how differently I did it, nor would I be able to turn the pages of a picture book and see the wonderful images that other photographers had created. Okay, maybe I would be able to go into the kitchen and get milk from the refrigerator and stick my finger over the rim of a glass to make sure that I didn’t over fill it as I poured, but that was by no means, doing everything.

I didn’t give voice to these thoughts, because I realized that the counselor had been saying what she had been taught to say. Rather, I said to Jennifer, “Yes, I know that I will have to learn new ways to do many things.”

Jennifer seemed sensitive to my situation. I was certain that she had encountered many people who had just loss their sight and understood the trauma and devastation that most feel after receiving a diagnosis of blindness. She intimated that she knew how I felt, but she didn’t know how I felt, not really. A sighted rehabilitation counselor was not who I wanted to be talking to just then. I wanted to talk to someone who had lost his sight and had learned to live a creative and useful life without the ability to see. I wanted to talk to someone, who really did know what I was feeling, because he had been through it himself.

I asked Jennifer where there was a support group that I could join. To my amazement, she told me that she didn’t know of any such group. I could hardly believe my ears. I said, ”Are you telling me that in the entire Dallas area, there is not even one support group for someone who has lost his sight? Why not? This is one of the largest metropolitan areas in the United States.” Jennifer said that there use to be a support group, but it was no longer active. I must admit that this information made me a little mad and perhaps, even a little scared for the future.

When Jennifer returned for a second appointment, she wanted to show me how I could do things in the kitchen. She asked me what I wanted to cook. I figured that she wanted to determine if I knew how to use the stove without setting myself on fire. I realized that such a task was daunting for some people who have just become blind, especially, if they were older, like me. I still knew my way around my kitchen, since I had done most of the cooking for my wife and myself. I got out the cooking spray, and some eggs and the frying pan and scrambled up some eggs. Jennifer said that I had done well.

Back in the living room, I once again complained about the lack of a single support group for blind people in the entire Dallas area. I felt Jennifer heard the pain of disbelief and desperation in my voice, because she said, “I’m thinking of starting one, but, you will have to run it.” That took me by surprise! I wanted to find a support group, but what did I know about running one? Nothing. Nevertheless, I told Jennifer that I would be glad to try to help run one.

In a few weeks, I got a call from Jennifer. She told me that she had found a place for a support group to meet. She was contacting all of her case load to tell them about the meeting that would take place in two weeks.

At the meeting, we went around the room and each person described his or her experience with blindness. Carl, who likes to be called big C, explained that he had lost his sight as the result of having shingles. He told us that he had not been blind for long. As it turned out, he and I lost our vision at about the same time. That was another thing that we had in common.

Kathy shared that she had low vision and was struggling to keep her job. I appreciated her honesty about the loss of her sight and her courage to keep working.

Tim said that he was fifty and five years earlier had become blind due to diabetes. Someone asked him if he wanted to be called Tim or Timothy. He responded that it didn’t make any difference to him. He added, “You can call me Tim or Timothy or anything.” “But, I really don’t like being called anything.” I laughed at his little joke and thought, here is a man who has not let blindness rob him of his sense of humor.

Next, a man who was really hard to understand spoke up. His mother, who had accompanied him to the meeting, helped us understand what he had said. She told us that her son had had a stroke and that, in addition to being blind, he had to struggle to speak. He had come to the meeting in hopes of finding some friends. I started to think how little my problems were when compared to those that others might face.

The next person to speak was a woman named, Brenda. She explained that, because of her low vision, she had to arrange for a handy ride to pick her up each day and take her to work. She used a computer at work that had a screen magnifier so she could see the monitor. She told us how difficult it was to keep up with the sighted workers in her office. This was a woman, whom I could admire. She was striving to compete in a sighted world and she was making it, so, couldn’t I?

A woman with a Spanish accent informed us that she had come to the meeting, because after losing most of her vision, all she had left to do was to sit on her couch and watch TV. She said that if it had not been for the meeting, she would never have gotten out of her house.

Mary told us that this was the first time she had left her house in more than a year. She said that she was uncomfortable around people and that she felt no one wanted to be around a blind person. She said that even her relatives didn’t want to be around her.

One of the people that impressed me most was Paula. She had been totally blind since early childhood due to a genetic condition in her family. She told us that she was a grandma and had raised three children. Although she was in her sixties, she still was holding down a full time job.
As I listened to the others tell their stories, I said to my wife, “I didn’t know there were so many ways for someone to lose their sight. Did you?” She agreed with me that she didn’t.

Several people were there with family members or friends, who acted as their sighted guides. Some had come to the meeting on their own. These were the people that I admired most. I still have not been out on my own and their ability to get around was impressive.

After the meeting, I heard several say, that they especially liked hearing about how other people had lost their sight and how they were coping with their blindness. This was what I had liked most also. The meeting had been quite an education for me.

The support group has been meeting for two years now. After getting to know many others, who have lost their sight, I have come to the conclusion that being a part of a support group may have been the most important key to my realization that despite my vision problem, I am still a valuable person, that I can contribute to my community, that my thoughts and opinions can still be valuable to others, and that I have recovered my dignity. We all know that although being blind isn’t easy, if we take a positive approach to life we know that we can still work , make friends, have fun and live valuable lives. And isn’t that what it’s all about anyway?

Letter from the Editor – Week of November 18, 2013

Hello Everyone,

I hope you had a great weekend. There will be no magazine next week because of the holiday.

LeDon Becker submitted a great article entitled “One Man’s Journey,” about losing his eyesight and becoming a part of a local support group in Texas. My description does not do it justice, and unfortunately it is a bit long for the magazine, but I have put it online so if you would like to read it you can find it here: http://www.matildaziegler.com/2013/11/18/magazine-contributor-ledon-becker-one-mans-journey/

We also have two contributor articles this week. The first, by James R. Campbell, is about the ways that our healthcare system has changed. The second, by Marilyn Brandt Smith, is about the unusual coincidence of Thanksgiving and Hanukkah overlapping.

I left off the recipe section this week because I didn’t want you guys to get too hungry before Thanksgiving rolls around.

Thanks for reading and to those who wrote in to the Reader’s Forum.

Have a great holiday.

Sincerely,
Editor

Reader’s Forum – Week of November 11, 2013

For your convenience, all Reader’s Forum submissions are separated by the ## symbol.

Eric wrote:

Regarding John Christie’s article on faulty service by Verizon: The service I got from MCI, predecessor to Verizon, was very demeaning and condescending. To put it in a nutshell, I was put through bait and switch, both in 2004 and 2006. MCI promised “The Neighborhood,” AT&T’s answer to unlimited long-distance. Right away, I noticed that for every service call assumed to be “free,” I had to pay for it. In 2006, I got a call, begging me to switch back from AT&T to MCI. Like a fool, I said yes. The second time,
not much changed. I couldn’t call a few party lines, because, in their infinite wisdom, MCI blocked them.

I really got annoyed when the phone bill came, and I did not get free directory assistance, something AT&T offers to all disabled people; the Neighborhood was a rip off, and I could not completely use Call Screening, to block all annoying calls. So I was stuck with paying $350!

I also understand that Verizon’s services for cell phones have also deteriorated. So that’s why I’m comfortable with AT&T for my landline, and Sprint Boost Mobile for my cellular service. Verizon? Goodnight now!

Responding to Anita’s comments in last week’s Readers Forum: I’m sure the lady who wrote in, only wanting to give her Skype address, might have meant well, but is both nonsensical and trifling to do so. Many of us read the Ziegler through NFB Newsline, so we cannot use a link to write you back.

For the safety of those who want to write you, you should please use an email address. Some of us want to contact you via cell phone or landline. We’re not saying this to hurt your feelings, we want you to be safe. We want no predators to be stalking you. Anita is right. So please help us!

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Terri wrote:

I’d like to start by welcoming our two new feature writers Roger Cicchese and Jane Kronheim.

To start with your article, Jane, I just couldn’t agree more with you about the need for interdependence. While I agree that the ideal is to function at one’s optimal level of independence as a person with blindness or vision impairment, I don’t think that optimizing one’s capabilities has to mean that a person never needs help (nor should it). Fresh out of high school and right into college, I felt just that way, though, because those were the messages I received from my school, Overbrook School for the Blind, in Philadelphia. If what seemed to be conveyed about independence and blindness wasn’t what was meant, well, that sure is how I perceived and interpreted, and I don’t think I was alone.

Welcome again, Jane and Roger, and keep on sharing your perceptive insights.

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Karen wrote:

I wish to compliment our newest feature writers Jane Kronheim and Roger Cicchese on their articles. I wish to respond to Bob Branco’s thoughts on driverless cars.

In Jane’s article where blind students were encouraged to attain autonomous independence, I agree there are serious flaws in that philosophy. While using Braille displays and computers help blind students keep up with classmates, does it foster interdependence? In my teen and young adult years, I began learning an important lesson. The true sign of maturity is when, with trepidation, you admit that you need help. This is a sign of humility, vulnerability and courage.

I liked Roger’s article about his confidence and competence in tackling a difficult task. I also liked the humor he used in relating what could have been a difficult situation between him and the apartment inspector.

I must disagree with Bob Branco’s view on driverless cars. Some features of driverless cars are already in high-end cars. When looking at October’s consumer reports, one of the 2014 models speeds up or slows down in heavy traffic. There is another, older, high-end car, which finds the best parking spaces for their occupants. It will be ten or fifteen years before we will have fully autonomous driverless cars on our roads.

Will we see the vision of science fiction writers like Arthur C. Clark had of sitting back while these cars drive us to work or leisure activities during our lifetime? While we see the beginnings of this, it is our kids and grandkids who will reap its benefits. What an exciting future: elderly people with failing eyesight will be able to drive at night. Blind teens and adults will have licenses to drive. Gone will be the excuse of “I can’t get there because of lack of transportation.” I believe blossoming technology will make our children’s future better than we can dream.

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Jake wrote:

I wish to respond to Cheryl in last week’s Reader’s Forum, about screen savers. I love the idea of endless lines of Braille! To add to that or as another option, I think it’d be cool if someone invented a screen saver with all the TTS engines and their respective voices babbling away at each other. The American-English voices as well as those in other languages could be featured. I’m talking both the robotic ones and the more natural-quality ones. Then we’d have a whole chorus of men, women and children, plus all the novelty voices!

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James R. Campbell wrote:

In recent issues of the Ziegler, much has been made of the need to educate the public regarding our capacities as blind persons. I am glad that this topic has been receiving the time that it so richly deserves. It is long overdue.

I agree with those who prefer dialogue and interaction, I have found that my neighbors and others respond much better to dialogue and education than they would a hostile, defensive attitude. The latter actually harms our cause, rather than helps.

The holidays are just around the bend, and I am still disheartened by the stories I hear on the chat lines from blind friends who have family that either put them in a corner, or treat them like porcelain figurines. Both approaches are wrong. There is a better way.

During Thanksgiving dinner last year, my cousin Courtney, who is sighted, asked me what I wanted for Christmas. I told her I wanted something that money could not buy. When she asked for ideas, I told her I wanted love for those who didn’t have it. I told her about this one woman whose family wanted nothing to do with her.

Courtney was taken aback, she could not, for the life of her, understand, how a family could mistreat a blind or disabled member in that manner. But it happens all the time. I am fortunate that I can cook, for example, if not, my cherished Aunt and I would go without most nights.

I had a cashier at WalMart who wanted to put the sacks in the basket, but I told her that I could do it, although I appreciated her offer. I put the food up and prepare it when my Aunt comes home from Daycare.

The more we can do as individuals, the more self-reliant we are, and this, in turn, makes us able to help our families and friends. This makes our families, our neighborhoods, and our communities at large, better places to live.

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Bridget wrote in response to Bob Branco’s Op Ed – Self-Driving Cars? Not For Me!

I have to laugh when people tell me someday I will be able to go where I want with these things. My first point is ok, so I get in the car, I go to the mall by the GPS. Does it park itself? So maybe it does. Well, where did it park? Where is the door? Did it park by Sears or Boscov’s? So I manage to get in the mall. Now I come out and like most people I stand there and wonder where the car is. All articles I have read said that a licensed driver must operate the car. So now I have a self driven car and still need to have a driver? It is for the lazy. It is for the people who are done thinking. Ask a person who uses GPS to go around the corner. They are now unable to find themselves out of a box. Do math? Forget it. Before losing my sight I didn’t even use cruise control. Computers do what they want. Just look at the auto fill functions, geez. I agree; not for me or realistically for the blind.

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Debra wrote:

I am responding to the article about self-driving cars. I say “Bring them on!” I would be willing to test one if I were offered that privilege. I would love to be able to pick my friends up and take them places. As for the computer malfunctioning in the middle of the road, to me, that would be just like any other car accident. One never knows when traveling what will happen. You take risks when you travel, or when you do anything for that matter. Traveling in a self-driving car is a risk I would be willing to take, because it would be another measure of independence, and independence is one of the most important things in my life.

In response to the article entitled “I’ve Always Wanted a Fan Club.” I am so glad about the outcome of this!! I used to live in a government subsidized apartment, and I always absolutely hated the annual inspections!! I considered it an unnecessary invasion of privacy. That inspector got what he absolutely deserved!!! I hope that others who live in this type of housing will also stand up for their rights!

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Casey wrote:

I have to say I agree with what Jane Kronheim discussed in her article regarding independence. Although many pieces of technology, such as i-devices and anything with a touch screen, are helpful for many blind and/or visually impaired people, these devices are not for everybody. I, for one, do not like the idea of using a touch-screen device because I do not think it would be as easy for me because I have never worked very much with such devices. For two, there may be people with other disabilities which impair their dexterity in their hands or sensitivity to touch. I firmly believe that although many blind and visually impaired people use these devices easily and are good at learning all of the gestures required to operate the menus and things, many people still require assistance with certain things, be they touch-screen devices or whatever the case may be.

Independence is wonderful to have, but I think that rather than independence being pushed onto blind and visually impaired individuals no matter if multiple disabilities may be present or not, I think that it should be discussed but not so much pushed as taught on an individual basis.

I have my beliefs as do others, and all opinions are definitely respected by me. I am just stating my own.

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Wesley wrote:

Given that mobility is one of the biggest hurdles to independence for blind people, I am totally excited about the various companies working towards the sale of driverless cars. Google has long been in front on this project, with a fleet of about 10 cars that have been equipped with a LIDAR laser radar and a Velodyne 64 beam range finder laser. These components allow the vehicle to generate a detailed 3D map of its environment. The car then takes these generated maps and combines them with high-resolution maps of the world, producing different types of data models that allow it to drive itself. Having driven over 300,000 miles on roads, primarily throughout California, these cars have had zero accidents while under control of the driverless system.

Several other companies are working on autonomous vehicles, including Toyota, Mercedes, Ford, and Tesla. Several high end automobiles have already incorporated features similar to a driverless car, such as collision detection, and self-parking. Since a response time from a computer is much faster than a human, and the ability for a computer to actually detect objects over a wider visual field, it is very apparent to me that we would be able to literally eliminate accidents with the use of autonomous vehicles. However, at this time the cost is prohibitive, clocking in at over $150,000 for the systems installed on the Google cars.

While I won’t rule out the possibility of electronics failure, I will note that much of our manufacturing is run using robotics, which repeat tasks tirelessly. Planes are flown using automation, traffic signaling is automated, communications routing is automated, along with thousands of other tasks in our complex society. There is a staggering difference between a home computer and a dedicated piece of software and hardware that effectively manages one task, driving a car. A home computer is prone to a horrific amount of human intervention, during which viruses can be introduced, or configuration conflicts can occur. Meanwhile, a dedicated system isn’t prone to meddling, although it will require updates as roadways change and other improvements are made, such as the use of RFIDs to locate neighboring vehicles, and correlate their routes to make lane adjustments and speed calculations.

In March 2012, Google posted a YouTube video showing Steve Mahan, a Morgan Hill California resident, being taken on a ride in its self-driving Toyota Prius. In the video, Mahan states 95 percent of his vision is gone. He goes on to say “I’m well past being legally blind”. In the description of the YouTube video, it is noted that the carefully programmed route takes him from his home to a drive-through restaurant, then to the dry cleaning shop, and finally back home.

Nevada passed a law in June 2011 permitting the operation of autonomous cars on their roads, which went into effect on March 1, 2012, and the Nevada Department of Motor Vehicles issued the first license for an autonomous car in May 2012. The license was issued to a Toyota Prius modified with Google’s experimental driverless technology. As of April 2012, Florida became the second state to allow the testing of autonomous cars on public roads. Shortly after that, California became the third state to legalize the use of self-driven cars for testing purposes as of September of the same year.

I am of the exact opposite mindset from Mr. Branco. I look forward to using driverless cars to get around our large cities, designed for automobiles. While I wish our cities were designed differently, I must accept that they are made for cars, and as a legally blind person, I must use the best resources at my disposal to live an independent life. When driverless cars become available for sale to the public, I fully intend to purchase one to freely travel across this country! For any blind person, I believe these cars will provide enormous freedom to access careers, shopping, vacations, entertainment, socializing, and generally getting around just like any sighted person. In fact, I believe these cars will do it better, since they will effectively be accident free, and theoretically shouldn’t get lost!

##

Lucia wrote:

Dear Terri,

I have a reaction to your article on “Song Lyrics and Blindness.”

There was a classic rock song, played on our local classic rock station WAXQ (q104.3) by Dire Straits, called “Money for Nothing.” There was a word in that song, “that little blank got his own jet plane,… that little blank is a millionaire” That word was quickly removed from the song. We have to do the same thing. We have to employ that same type of activism.

Too often, people believe that if you are visually impaired, you are stupid! (I keep forgetting to say “vision impaired.” You are right.) Family members of too many visually impaired and blind people just don’t want them. This has been an attempt to clarify and crystallize what is occurring.

##

Roy wrote:

In response to Bob Branco’s article about self-driving cars: I would actually trust these self-driving cars more than I would cars being driven by people. Self-driving cars aren’t distracted by texting or talking on the phone or by attractive people both passing by or on billboards. Self-driving cars also won’t be propelled to do dumb things because of road rage.

Bring on the self-driving cars and I’d love to own one and use it. Oh, the places I’d go. I hope it happens in my lifetime. It’s looking good.

Op Ed with Bob Branco – Are We Hooked on the Computer?

I wonder what would happen if, God forbid, a company’s entire computer system crashed, making it unusable for hours. Would any of the clerks, secretaries or customer service workers ever think to go back to using paper on a temporary basis just so that they can continue to earn their pay during this crisis?

The reason I am bringing this up is because I recently went to a facility that required me to pay a co-payment for services. I paid it in cash, and the clerk offered to give me a receipt. Because her computer was temporarily out of service, she told me that it would take a while before the receipt was printed. Wouldn’t she have been better off if she simply wrote the receipt with a pen, gave it to me, and moved on with her day? Why do we all have to wait for a computer to work even though we were all taught how to write? I’m sure that in one of her drawers she has a stack of paper and a bunch of pens. Problem solved!

I love computers, and I am glad that I own one. Computers make life a whole lot easier. However, if one breaks down on the job, the staff should be willing to revert to the old ways temporarily, just so that customers can be properly served. Why should I have waited 30 minutes for a printed receipt when I could have been given a handwritten one in 30 seconds? What’s wrong with that?

Your thoughts are welcome in the Reader’s Forum.

Feature Writer Terri Winaught – An Accessible Phone From Sprint

Although cell phone navigation hasn’t always been easy for persons who are blind or vision impaired, much has been done over the past several years to enhance accessibility. For example, under the late Steve Jobs’ leadership, Apple’s iPhone was a resounding success, with voiceover accessibility right out of the box.

For persons who want a basic phone with text-to-speech accessibility and don’t mind being unable to download Apps, as can be done on the iPhone and other smart phones, the Kyocera Kona offers exactly this to Sprint’s portfolio of products. This phone, which has been available since September 13, 2013, is described in detail in a press release sent out on September 6, 2013, from Sprint representatives in Overland Park, Kansas.

Since I have been without an accessible cell phone for some time, I ordered the Kyocera Kona from Sprint telesales on November 1 and received it by November 5. Although I am still getting used to the speech and navigation commands, I am finding it helpful and couldn’t be more delighted to be able to text again. (Though I have yet to do so, I will probably order Braille information from Sprint which is mentioned on their website along with the option of Large-Print materials.) In addition to variable text-to-speech capability, this easy-to-use flip phone also has varying fonts to accommodate many degrees of vision.

To learn more about the Kyocera Kona, call Sprint telesales at 1-800-SPRINT1 (1-800-777-4681) or visit www.sprint.com. Although I ordered my phone by dialing the above number, a different number is on Sprint’s website, and both numbers are toll-free. To receive a copy of the September 6 press release, Email: t.winaught@verizon.net. If you go to Sprint’s website, arrow or tab to the Search Box and type “Kyocera Kona” and you can obtain information not only about that phone but also about phones for persons who are deaf, have a hearing impairment, or speech impairment. You can also like Sprint on Facebook, follow them on Twitter, find them on YouTube or join the Sprint community.

Tell us in the Reader’s Forum if you have used the Kyocera Kona and how accessible you found it to be.

Feature Writer Steven Famiglietti – Post College

I graduated from college in 1996 with a Bachelor of Arts degree in Communications. About four months before graduation, I visited the career center on campus to get some assistance in figuring out what I wanted to do upon graduation. The only idea that I had at the time was that I wanted to work with people.

The career center taught me how to complete a resume and cover letter. They also invited me to a career fair. During the fair, I met many people who represented various companies and organizations in the area. I gave out many copies of my resume and had my first experience networking for myself. I am quite sure that most of those people did not know that I had a vision problem because I didn’t use a guide dog and I refused to use a white cane. I figured those items were only meant for people that had no vision.

I ended up having an interview at Perkins School for the Blind in Watertown, MA. Perkins was looking to hire people for Summer Program Aid positions for their Summer Outreach program. Since I had been a Resident Assistant in my college dorm, I figured this would be a good possibility. Perkins hired me at the conclusion of the interview.

The Program Aid position at Perkins was to last three weeks, which was the duration of the program. There were twelve students enrolled into the program who were from all different parts of New England. These students had varying degrees of vision loss and ranged in age from ten to sixteen years old. There were several other staff members who worked in this program. Some were sighted and some also had varying degrees of vision loss. For me, this was my first time being around groups of people with vision loss and it was my first time working with coworkers with vision loss.

Some of the goals of the program included helping the students learn to complete daily living tasks without prompting, assisting students with orientation and mobility, teaching students to work together in groups to accomplish tasks and helping students learn self advocacy skills.

After this program ended, I returned home with my parents and I did not attempt to perform a job search because I figured that Perkins would hire me for the school year since I had worked there for the summer program. I didn’t give any thought at all about what I would do if Perkins did not decide to provide me with employment. I also figured that I deserved some time off since I had been in school for twenty years. This was absolutely the wrong attitude!

The fall came and I was not hired at Perkins School for the Blind. This meant it was time to give some very serious thought to what I would be doing for employment. My first big decision would be to go out and buy a brand new computer so that I would have all the tools necessary to perform a job search, complete my resume, complete cover letters and perform internet searches. The new computer did help me to accomplish these tasks.

I simply had no idea what to do and I had less of an idea about how to effectively communicate and carry myself professionally as a person who is legally blind. I went on several interviews and explained myself to the best of my ability but had no luck. I would locate a potentially exciting job, get excited for the interview, have the interview and never hear back from most employers.

Transportation to and from a job was also a huge issue. I did not live near any public transportation and also was not near any major highways. At the same time, I could not afford to move away from home since I was not employed. Sometimes, I justified staying at home because I was collecting Social Security Disability and I figured this was enough to keep myself supported so why bother putting myself through the stress of job searches and interviews. After all, it seemed like it was all too hard to try to convince people that I had plenty of ability to do a job. It was not fair to me that people were afraid to hire me because of my vision loss. I figured it was everyone else’s fault that I couldn’t find a job.

My other frustration was professional counselors that would visit me and advise me to go bagging groceries at the grocery store. They said that I would have to get my foot in the door somehow and that people had to start out somewhere. I hated this advice because I figured it then was a waste of my time and money to have gone to college, obtained my degree and then bag groceries. Obviously, I resisted that advice and did not take any of those jobs. I began to feel useless and I figured I was not capable of doing anything at all. It was a lot easier to just stay home, watch TV and eat whatever I wanted. At the same time, I knew this was the wrong attitude so I was constantly struggling with myself. One day, I actually stayed in bed until my mother came home from her full time job. She was quite angry with me and we had a long talk about her responsibilities in our home etc. That is one discussion I will never forget!

I recall one interview where I walked in the entrance and tripped down a step. I walked a few more steps and tripped down another step. Finally, I got to the reception desk and as I introduced myself, everyone around the room was laughing because I tripped down the steps. This was not the way to begin an interview and it was not the way it would have happened if I had walked into the place with a white cane or guide dog. I did not get that job after all of my tripping!

Feature Writer Roger Cicchese – The Emergency Room Visit When You’re Totally Blind

These stories are offered to illustrate experiences, opportunities, knowledge, and wisdom. We may feel a sense of connection and camaraderie when reading them.

The thundering pain in my temples, forehead and neck was tremendous. My eyes were fountains of unbidden tears. My conscious world was filled with the highly amplified sounds of human voices. Common odors had grown to horrific proportions, and the ringing in my ears just wouldn’t quit.

I was not fit company, even for myself. My at-home medication was no longer working and I knew that this was probably going to require a visit to the emergency room for treatment of one of my severe migraine headaches.

You can imagine feeling like this, I was in no mood for shenanigans once at the hospital, but I was in for something worse than a migraine headache.

No one likes the ER and no one should. I arrived and was presented with paperwork to fill out which was not accessible, which staff would not or could not read to me, yet they expected me to fill out and sign.

Next, after an extended wait I was escorted into a small triage area where I was questioned at length and then sent back out to wait again. This is all pretty standard operating procedure and many of us are familiar with the drill.

It starts to get interesting now.

My name gets called. Now I’m a bit confused because of my condition and they call me by my first name. My middle name is the one I use and I’m not sure they are referring to me when they call it. My last name is rather a tongue-twister so most people usually give up and simply say just my first name and visually point at me, but since I can’t see them pointing and in my present painful condition I am a bit unsure so I say “are you calling me?” and I say my name.

The nurse says: “Well of course I am. Can’t you see me pointing?” I have an unfolded white cane in my hand and it is quite obvious that I am a person who is blind.

When we finally get verbally connected she says: “Follow me.” and begins to walk off in an unknown direction. I am aware from past experiences with other situations like this so I say: “Wait a second why not let me take your arm so I can more easily follow you.” She says: “oh I would have never thought of that.”

We get to the exam cubicle and the fun really begins. Without preamble or warning a thing is slapped against my forehead to take my temperature and I jump nearly out of my skin. This is immediately followed by a glove-like vice tightly wrapped around my arm being pumped up by a noisy machine. No words were exchanged. No explanations or warnings given, just automatic actions like robots without feeling.

I felt like a piece of meat and while I didn’t think it could get worse I was beginning to realize that things seemed to have somehow gotten out of control. I managed to blurt out: “Have you ever treated a patient who is totally blind before?” The nurse said: “Not really… gee you can speak?” The nurse figured that I was not only blind, but I couldn’t speak or understand or communicate much beyond my own name.

I explained that I was there for treatment of a severe migraine headache for which I had a long history of treatment. I explained my medical background succinctly and talked about my medications and she stopped and exclaimed: “wow you blind people are really something.” I asked her what she meant and was told that her grandfather who was 86 years old was blind and couldn’t do much for himself and she was surprised about all the things I could do for myself.

This was turning out to be a class involving explanations about people who are blind and their capabilities rather than about my emergency treatment. I was discovering that more training was sorely needed by the ER staff that I was depending upon.

When the doctor arrived he wanted to have a look into my eyes. He kept looking into my right eye and said: “okay now let’s have a look in that left eye.” He kept saying: “open that eye and look up.” He was getting angrier by the minute at me, but I didn’t quite know why. Finally he said: “what’s the matter with you? I know you have a blind right eye, but your left eye looks perfectly normal. Why won’t you follow my direct instructions regarding that left eye?”

Without a word I reached up and removed my prosthetic eye and handed it to him and said: “that’s why.” While I’ll not cover all the gory details of this visit I will tell you how things ended. It’s funny and you should hear about it.

At the hospital, when a person in my condition has a severe migraine headache, there is often a prescribed protocol for treatment. Such is the case with me. This involves the administration of some very powerful medication which requires the admonition: “Do not drive or use machinery while under the influence of these medications.” I generally go home and sleep for at least 24 hours before the medication wears off.

So it was that I was finally feeling somewhat better and discharge paperwork was being prepared. The first nurse came in and said: “we cannot release you until and unless you promise not to drive your car home.” Naturally I thought she was joking. I said I didn’t drive. She insisted that I hand over my keys just to be on the safe side. I refused. A second nurse came in and informed me that they wouldn’t let me leave unless I could guarantee that I’d promise not to drive home. I said I didn’t drive there so I couldn’t drive home. It finally took six staff members before we came to a compromise that a friend would come to the hospital and enter the emergency room, come to my cubicle, sign me out, and walk me out pushing me in a wheelchair followed by a staff person to the car where they could see the other person actually drive me away. Of course, this was my plan all along.

I have been back to that same emergency room several times during the past seven years and things have improved somewhat. But considering that we might think a hospital would be the logical place where sensitivity and understanding and training and awareness would be top-notch it is always a surprise to discover when it is so lacking.

We can complain or we can see the sick humor and do our best to educate even in adversity. It is our choice. Let us choose wisely without eyesight and demonstrate a little insight.