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Retinal Implant Restores Sight

Three blind patients have had their sight partly restored after scientists in Germany developed an electronic eye implant. The breakthrough is being hailed as “a significant advance” in retinal prostheses, which could revolutionize the lives of 200,000 people worldwide who (have) retinitis pigmentosa (RP), a degenerative eye disease.

A subretinal implant inserted under the retina of the three patients has allowed them to see shapes and objects. The best results were achieved with Miikka Terhol, a 46-year-old from Finland, who was able to recognize cutlery and a mug on a table, a clock face, and discern seven different shades of grey. He was also able to move around a room independently and read large letters set out before him.

Professor Eberhart Zrenner of Germany’s University of Tuebingen, and colleagues from the private company Retina Implant AG, initially tested the subretinal chip on 11 people. Some noticed no improvement as their condition was too advanced, but most were able to pick up bright objects. It was only when the chip was placed further behind the retina, in the central macula area, that the best results were achieved with three people--two of them having RP and the other a related inherited condition, choroideraemia.

David Head, chief executive at RP Fighting Blindness, welcomed a new report on Dr. Zrenner’s work and said, “This technology is very exciting ... however, these devices are at an early stage of development as this report notes, and it’s important that we recognize that from early trials to a product that is fully proven and generally available can take a long time.”

Follow-up work on the subretinal implant is due to take place in several centres, including Oxford Eye Hospital and the Nuffield Laboratory of Ophthalmology, where a clinical trial of the electronic retina implant is due to take place in 2011-2012.

The research by Professor Zrenner and his colleagues is published in Proceedings of the Royal Society B (November 2010).

RP Fighting Blindness: www.brps.org.uk

Reprinted from NB, Issue 60, December 2010.

When Passions Collide

Editor's Note: Shelley Ann Morris is an AEBC member who lives in Ottawa, Ontario, and works at Volunteer Ottawa as a Recruitment and Referral Services Coordinator

There are two things that I am very passionate about--music and good health.
Although I’m not a musician, I have a deep appreciation for song. I was raised on jazz--classics like Louis, Ella and The Duke. My father is a huge fan, and that provided the soundtrack to my formative years. As I grew, so did my musical tastes. I discovered the jazz that I myself liked--fusion, acid and smooth jazz, which are my mainstays when I am studying or working. One of my favourite uncles was a classical music fan; his legacy includes an appreciation of classical music. We made several trips to the National Arts Centre and excursions to record and CD stores. One of our traditions was to see The Nutcracker at Christmastime.

A look through my iPod or CD collection is like a trip to anywhere! When I’m exercising, it’s straight ahead classic and 80s rock, 90s grunge and today’s alternative. My collection is also filled with plenty of rhythm&blues/soul, electronic/dance and adult urban music. I like my share of pop music, world music, and there are country songs that inspire me too.

Ottawa hosts many music festivals. I feed my musical addiction by volunteering at our Jazz, Blues and Folk Festivals. This allows me to get my fill and not have to spend a fortune on tickets! Volunteering at the festivals has allowed me to see many of my favourite artists and discover new ones. There’s nothing like being outside on a hot summer day, eating junk food and listening to good music. When the warm weather and the positive vibes work their magic, you know that you are living in the best place in the world!

I’ve been involved in an organized fitness program for the last 20 years. In 1990, an aerobics program was initiated at the CNIB in Ottawa. I jumped in enthusiastically and started seeing benefits right away. Unfortunately, our instructor moved to Toronto. Undaunted, I began fitness classes at the Dovercourt Recreation Centre. Along with low-impact aerobics, I added step, spinning, yoga and strength training to my regime. I’m an avid swimmer and feel as at home in the water as I do on dry land. What started out as weekly participation in an exercise class soon developed into a lifestyle that included a love of sports and fitness. I have conquered the CN Tower’s stairs 16 times, and run several 5K races and one 10K race. Recently, I was chosen to be one of 13 blind Canadians who will train for and participate in Won With One--a triathlon program. This is going to challenge me like I have never been challenged before! Being involved in sports and fitness has added life to years. I am 48 years old and never better! Growing up, I was always encouraged to make the most of my abilities regardless of restricted vision.

How do these passions collide? Next summer is going to be a challenge. My first triathlon takes place right in the middle of Bluesfest. I’ll be pulled in equally opposite directions. There will be the opportunity to attend great live shows, to meet and volunteer with like-minded people and enjoy some great food. At the same time, there will be the adrenaline rush of building up to race day and the excitement of completion and participating in a brand new adventure with people who, like me, refuse to listen when someone tells them that blind people can’t/shouldn’t do sports. We’ll be showing others that we can, and will give 100% effort. Through the triathlon, I will have the opportunity to be at my best both physically and mentally. There will be a balancing act, as I’ll have to maintain the discipline required to perform well--no binging out on junk food or missing workouts and training sessions. There will be a weekend or two that will take me out of town during my beloved festival season to compete.

Come music festival season, I not only fall right off the health wagon, it usually runs me over! In 2011, sin and salvation will battle for hegemony. Can I keep the balance?

Ready, Aim, Fire!

Editor's Note: Chris Stark is a long-time advocate for increased access, universal design and true inclusion. He is an AEBC member living in Ottawa, Ontario.

It seems to me that the older I get, the harder it is to be independent. While my specialist and hospital clinics communicate with me by email, Health Canada and its agencies do not. Canada Pension Plan will, but I have to call and then wait three weeks. The Ontario government is no better in providing accessible information. I do get pills in bubble packs, paid for by the pharmacy/government, with the packs containing the correct doses of medication for each time of day for a week. This means I can avoid taking the wrong pills in the wrong amounts at the wrong time. Recently, I was asked to monitor my blood glucose level. Here, I outline the research I did on talking blood glucose monitors.

Finding information about products that can be used by persons who are blind is not always easy. As a first step, I spoke with a number of people who are blind, and received a great deal of useful and practical advice. I strongly suggest that others do likewise.

The Canadian Diabetes Care Guide website (http://www.diabetescareguide.com/en/monitoring.html) was helpful in learning about blood-glucose monitoring. While the United States continues to use imperial measurements (milligrams/deciliter), Canada began using millimoles/litre in 1967. Make certain the device you choose can give readings this way.

An article I found particularly useful was "Evaluating Glucose Meters: Talk is Cheap, But Access is Golden" (http://www.nfb.org/images/nfb/Publications/vod/vod_24_1/vodwin0910.htm). Published by the National Federation of the Blind (NFB) in the United States, it says: "The contemporary meters are smaller, faster, and much less expensive than older choices, require only a tiny drop of blood, and are easier to use. However, buyer beware! While these meters are being aggressively marketed to blind and low vision users, only the Prodigy Voice is totally accessible. Despite the hype, you will find that you need sighted assistance to use essential functions such as time and date, and memory review on many of these products." Another NFB article is "The Talking Blood Glucose Monitor Revolution" (http://www.nfb.org/Images/nfb/Publications/vod/vod215/vodwin0707.htm).

Present choices for talking glucose monitors include Prodigy Voice, Prodigy Autocode, Oracle, Advocate, Redi-Code, Companion, Embrace, Clever-Chek, Smartest Smart Talk, and the Accu Check VoiceMate. I have tried the Prodigy Voice and the Oracle.

There are basically three activities involved in monitoring your blood sugar level: pricking the skin with a lancet from an applicator; getting some blood and putting it on the test strip; and having the blood glucose monitor read the result to you. Also, in my case, doctors want to see the record of readings.

Both the Oracle and Prodigy monitors come with manuals in audio format. While I found each manual adequate, the one for the Prodigy contains a chapter on carrying out a blood sugar test as someone who is blind, which I found useful.

Each talking glucose monitor comes with lancets and lancet devices, but it appears that it doesn't matter which ones you use; there are universal lancets available that fit most lancing devices. The test strips used for each monitor, though, are specific to that product. Once you decide on which monitor to use, the correct strips have to be purchased. The talking monitors are usually free or very low cost, but the test strips are fairly expensive. The Prodigy I use requires the Prodigy Voice strips.

Both the Oracle and Prodigy come with software to install on a computer to record readings. Each has an internal memory to keep track of about 400-plus readings. While the Oracle software is not accessible without using a mouse, the Prodigy software is supposed to be accessible, though it was being updated at the time of this writing. The company did acknowledge that the software would be reviewed by people who are blind to make sure it continues to be usable.

I personally find the Prodigy more user friendly than the Oracle. It is easier to get blood onto the strips and get a reading, and the review and settings functions are totally accessible. While I can control the Prodigy independently, sighted help is required to alter the Oracle's settings and read the history of results. The downside of all of this is that neither device is available in my province and test strips have yet to be approved for use. Therefore, you have to order the devices from a supplier.

The Prodigy can be ordered from several U.S. places, which ship it as "Medical Supplies for the Blind." They go right through customs, but you should check on regulations (Canada Customs: English: 1-800-461-9999; French: 1-800-959-2036). Future Aids/The Braille Superstore is a Canadian company that sells the Prodigy in provinces where the device has been approved for use (Toll Free: 1-800-987-1231; Email: sales@FutureAids.com; Website: www.braillebookstore.com).

As a newbie, I found it challenging to tell if I had punctured the skin to get enough blood to test. But as the Prodigy manual says, "Don't give up, keep trying and practice, practice, practice." And though I shouldn't be, I'm appalled at the lack of locally available, useful information. Diabetic organizations and most pharmacies had no information for people who are blind. The only device they knew about, and could get, was ten-year-old technology, the Accu-Check VoiceMate, in which the audio is an add-on. It is the most expensive of them all, costing $400-$500.

Compared to when I was younger, the same old problems persist--lack of resources and lack of accessible information, not to mention people who know nothing about blindness except perhaps pity. This has motivated me to outline my impressions and experiences as a new user, hoping to help others who find themselves in a similar situation.

Project Takes Eye Health to the People

Snuneymuwx First Nation, British Columbia--How long does it take for a Mobile TeleOphthalmology Project to go from dream to reality, asked Norman Lewsey, executive director of the Inter Tribal Health Authority (ITHA) on Vancouver Island. Five long years, he said. Not so surprising then that the launch of the project would be turned into a big event, complete with feast and speeches from some of the people who had devoted considerable energy to seeing the dream come to fruition. The celebration included the blessing of the teleophthalmology mobile units and traditional First Nations drumming and singing.

Gathered at Snuneymuwx near Nanaimo on April 16 were health representatives full of the hope that their project would bring some equity to First Nations in the area of health services. Vancouver Island residents living in 51 rural and remote First Nations communities at high risk of developing diseases of the retina related to diabetes would soon benefit from a new mobile retinal screening service. The technicians were trained, nurses hired, and two highly motivated doctors were standing by in Victoria ready to make assessments.

Rural and isolated patients have trouble accessing the same levels of health care as other people in British Columbia. Some can't afford to travel to urban centres. Others refuse to leave home. The danger of not getting tested is that diseases that could be treated are left undetected. Patients with diabetes are particularly prone to eye disease that can lead to blindness, and there are more incidences of the occurrence of diabetes in the Aboriginal community than there are in the mainstream population across Canada. The British Columbia First Nations Health Plan estimates that prevalence of diabetes among First Nations people is up to 40 percent higher than for other British Columbians.

Dr. Stanley Shortt, one of the retinal specialists on the teleophthalmology project team, said people born within the past 10 years have a one in three chance of developing diabetes. Worldwide, by the year 2030, 438 million people will (have) the condition. Diabetes is the leading cause of blindness in people ages 21 to 74. Getting tested allows doctors to treat issues before they become problems.

The mobile teleophthalmology units will travel to the patients and send the images of their eyes via a secure link to retinal specialists who will examine, investigate, monitor and treat any problems long-distance. Nanoose First Nation Chief David Bob is the ITHA co-chair. He explained that the units didn't test for vision but for disease and urged everyone to take advantage of this technology when the units are in the communities.

About two million Canadians have diabetes mellitus, one-third without knowing it. Uncontrolled blood sugar levels can cause many health problems, including coronary heart disease and renal failure, retinal damage or retinopathy. People with diabetic retinopathy are 29 times more likely than the general population to become blind.

Diabetic prevalence among the 35,000 First Nations people living within the Vancouver Island Health Authority region is estimated to be 2,200. This population is geographically distributed among some of the health authority's most isolated communities. Health Canada's First Nations and Inuit Health Branch and Canada Health Infoway jointly funded the $1 million teleophthalmology project, contributing $404,000 and $636,000 respectively.

"Improving the health status of Aboriginal people on Vancouver Island is one of VIHA's key priorities, as identified in our five-year strategic plan," said Jac Kreut, Vancouver Island Health Authority board chair. "We are delighted to be a part of this innovative project that gives residents living in remote and rural Vancouver Island communities who are at risk of developing diseases of the retina the same access to retinal screening services that are available to people living in urban centres."

Four primary screening clinics are located on Vancouver Island in Sooke, Nanaimo, Port Alberni and Alert Bay. The screening equipment used in the clinics is portable, and will be taken to remote and rural First Nations communities where needed.

Said Snuneymuwx Elder Bill Seward, he was pleased to have witnessed the launch of the technology in his community. "It's good for our people. It's good for our children."

© Windspeaker. May 1, 2010. All rights reserved.

Canada's Programs for Disabled Too Complex, Says OECD

Canadians with disabilities or health (issues) are caught in a complex web of federal and provincial programs that make it almost impossible for them to join or remain in the workforce, says a new OECD report. Few programs lift the disabled out of poverty and many seem to work at cross-purposes, says the report by the Paris-based Organization for Economic Cooperation and Development, which looked at the major disability benefits and services offered by Ottawa and the provinces.

To improve programs and make it easier for the disabled to get help, the report recommends better federal-provincial coordination and "one-stop shopping" offices.

The 85-page report comes on the eve of a promised Ontario review of social assistance and mirrors many of the recommendations of a provincial expert panel that called for more coordination of federal and provincial programs for vulnerable working-age people.

"Even with better coordination, there is considerable room for streamlining by making provinces fully responsible for all employment measures and programming," says the OECD report, released this week.

Like many OECD countries, the report notes Canada's benefits and services are focused on what the sick and disabled cannot do rather than on what meaningful work they are able to do. Before the recession, just 60 per cent of Canadians with health (issues) or disabilities were in the workforce and their unemployment rate of more than 16 percent was twice as high as the general population, the report says.

A spokesperson for federal Human Resources Minister Diane Finley said the Harper government has taken "unprecedented action to support Canadians with disabilities" including the new Registered Disability Savings Program, Employment Insurance sickness benefits for the self-employed, and the Working Income Tax Benefit.

Mary Marrone, of Ontario's Income Security Advocacy Centre, welcomed the report's recommendation that Canada and other countries need to focus on people's abilities, not their disabilities. But she is concerned about the report's suggestion that countries should tie disability benefits to a person's efforts to work, even part-time. "We need to be providing real opportunities for people to work through employment support and accommodation and not make work an obligation for people with disabilities," she said in an interview.

Michael Mendelson of the Caledon Institute of Social Policy said Canada would be unwise to adopt one-stop shopping for the disabled before reforming the various federal and provincial programs. "Creating an integrated service as a Band-Aid over a dis-integrated system would just create one more layer of bureaucracy," he said. "The issue is the coordination of programs," said Mendelson. "We need to try to develop our income security system as a whole."

Reprinted from The Toronto Star, October 3, 2010, courtesy of Torstar Syndication Services.

Climate Change and Disability: A Burning Issue

Known for his work in the Disability Studies field, academic Dr. Tom Shakespeare is also interested in the environment. This month he has come across recently written papers on where the two areas collide. Scenes in New Orleans post Hurricane Katrina.

I've just spent 30 minutes on the phone, arranging wheelchair assistance for one of my frequent visits to Geneva. This time it was more complicated, because I am travelling by train, and my meagre French was tested to the limit trying to book help on French and Swiss railways. But minimizing extra flights seems the least I can do to contribute to avoiding global warming. Amidst all the dire warnings, I had heard nothing so far about the impact of climate change on disabled people, until I read a recent essay by my friends Leslie Swartz and Kumanan Rasanathan. They argue that climate change is a health and disability issue. Given that global warming will disproportionately affect the world's poor, and that the world's poor are disproportionately likely to be disabled people, they conclude logically that our disabled brothers and sisters in the developing world will bear the brunt of the impact.

Following up their piece, I came across the Human Impact Report on "Climate Change--The Anatomy of a Silent Crisis", published by the Global Humanitarian Forum here in Geneva. It is as alarming as it is glossy, showing that while 235 million people are currently directly affected by climate change, this will rise to 660 million by 2030.

From the projections in the report, it seems that many factors will cause problems for disabled people in particular. For example, we can expect more heat waves. Increased heat contributes to worsening health, due to things like asthma and strokes. The 2003 heat wave in Europe killed 35,000 people in five countries, and it was older people and disabled people who were the worst affected. Higher temperatures also mean that diseases such as malaria will become more widespread. It is estimated that climate change related deaths will increase to 500,000 by 2030.

Drought and famine will have a big impact. Already, 1.3 billion people in the world suffer water scarcity. Global warming is projected to cause a 50% reduction in food yield by 2020. Already, drought reduced food yield in Uganda by 30% in some areas in 2008. Currently, 40% of child deaths in Uganda are caused by malnutrition, and 38% of children under 5 are stunted because of lack of food.

By contrast, in Indonesia too much rainfall also affects food yield: in some regions, 50% of children are stunted. It is well known that food shortages, and particularly lack of micronutrients, cause physical and mental impairments.

A third example is the increase in climate-related disasters, such as hurricanes and flooding. According to the insurer Munich Re, there has been a 40% increase in weather related disasters since 1980. There are currently 400 weather related disasters per year.

It is well known that disabled and older people are more vulnerable in emergencies. For example, 60% of the deaths caused by Hurricane Katrina were in people aged 65 or older. By 2030, 350 million people worldwide will be affected by natural disasters. More awareness is needed of the particular needs of disabled people in emergencies.

Finally, the problems of food and water scarcity, plus natural disasters, plus rise in sea level, will generate more displaced people. Already, there are 26 million climate- displaced people in the world, and each year, another 1m are displaced due to climate related disasters. These figures are projected to triple by 2030, with low-lying islands and countries like Bangladesh particularly vulnerable.

Migration is more complex for disabled people, who will face access and transport barriers, and are not likely to be a priority when it comes to resettlement.

To summarize, the message from these projections seems to be that because of global warming, more people might become disabled; more disabled people are likely to become sick or die; and that disabled people will be more affected by factors such as famine, weather disaster and consequent migration. The obvious conclusion is that climate change is a disability rights issue.

Faced by the reality documented in this and other global reports on global warming, my individual decisions to use the train rather than fly, or use my manual chair rather than the power chair, can only be trivial acts of conscience. But perhaps together, when the millions of disabled people in the world add their voices to the campaign for climate action, we can help make a difference.

Reprinted from BBC Ouch, October 23, 2009.

Photo: Tom Shakespeare, a Research Fellow at Newcastle University. His non-fiction books include Genetics Politics: from Eugenics to Genome and The Sexual Politics of Disability

Hope for Future Cancer Patients

I was born in 1952 and was a healthy baby. When I was about six months old, however, my mother began to notice I was having difficulty focusing when looking at something, and before long that I could no longer see her when she stood in my bedroom doorway. Although our family physician in the small northern Ontario town where we lived did not think that anything was amiss, he eventually referred us to a specialist in Kirkland Lake, the city closest to our home. It was there that my mother learned I had bilateral retinoblastoma, a rare form of cancer of the eyes that, if not treated, would be fatal. My parents had never heard of it before.

Retinoblastoma (RB) occurs in children from the time they are in the womb up to the age of five years, and accounts for about three percent of pediatric cancers in those under the age of 15. Approximately 60% of cases are unilateral (affecting one eye), with the remaining 40% being bilateral (affecting both eyes). While RB is curable if caught early, 87% of affected children worldwide die, mostly in developing countries. In developed countries, 97% of those who do live have moderate to severe vision impairment.

In the 1950s, when I was diagnosed with RB, there were very few treatment options. Radiation therapy was available in New York, but my mother was told that it created a great deal of facial scarring, and often didn’t work. The second option was radical surgery to the affected eyes, which could result in blindness. My ophthalmologist at Toronto’s Sick Children’s Hospital, where I was taken in the winter of 1955, felt my condition had progressed beyond the point where radiation would help, and so in order to save my life my mother signed a consent form to have both of my eyes removed and replaced with prosthetic ones. About two months before my third birthday, I entered the hospital with enough vision to remember seeing my mother standing just outside my room talking to a nurse. When I left the hospital, I saw nothing, and all I really remember is a feeling of extreme confusion at people being able to see me but I couldn’t see them.

But I adapted to my situation, and for the most part I had a happy childhood. I was a curious and adventurous child, and I taught myself to do just about everything my sighted friends did. I grew up, obtained a university degree, and after a few other jobs began working at Statistics Canada.

As far back as I can remember, I wanted to have children. For me, becoming a mother was more important than anything else at that time. When I learned at the age of 23 that the retinoblastoma that had caused my blindness was 50% hereditary, I was devastated. Between the ages of 23 and 30, I struggled with the numerous ethical issues this raised. Friends and family regularly voiced their opinions about people with hereditary conditions starting families, with one individual even saying that it would be “socially irresponsible” for me to have children. At the age of 30, however, I was married, and my husband and I decided to start a family.

Unlike my parents before me, and thanks to modern advances in genetic research and treatment options, my husband and I were able to inform ourselves about retinoblastoma before we had children. I contacted the National Cancer Institute of Canada during my first pregnancy and was provided with a great deal of literature on this particular form of pediatric eye cancer, as well as the name of a doctor at Sick Children’s Hospital who specialized in this condition. Under her guidance, every possible step was taken to ensure that, if the condition existed in any of our children, measures to arrest the progress of the disease would be taken as soon as possible.

We had two children--Philip in 1984 and Alena in 1987. Philip was monitored regularly from birth until he was two years old to make sure he was clear, and a later blood test showed that he does not carry the RB gene. Alena, however, was found to have two tiny tumours on one eye and three on the other when she was four months old. From then on, we travelled once a month from our home in Ottawa to Toronto, then every two months, every three months, etc. Lazar and cryo (freezing) therapies--treatments that were not available during the 1950s--were used to arrest the growth of the tumours. By the time Alena was two years old, the tumours had faded into scars that seemed to have had no effect on her vision. In April of 1990, Alena’s doctor said, “Yes, I would say this child is cured.” We then visited the hospital every year till she was 14 and every two years till she was 18. Since the scars have remained quiet and she has passed the age when any retinal tumours might occur, Alena can now make annual visits to a local retinoblastoma specialist.

Thanks to the great strides in cancer research, my daughter has full vision in both eyes and is a healthy young woman. We are fortunate in Canada to have access to world leaders in the diagnosis, treatment and genetic analysis of retinoblastoma. Consequently, the survival rate in Canada is now about 96%.

For further information, visit the Canadian Retinoblastoma Society’s website at http://www.rbsociety.ca or Retinoblastoma International at http://www.retinoblastoma.net.

Adapted from the March 2007 edition of @StatCan, the newsletter of Statistics Canada.

Vending Machine Is a Healthy Choice

Watertown, Massachusetts--On a cold, sunny morning here, the break room at Perkins School for the Blind is packed with students, teachers and aides maneuvering their way alongside a bank of tables heaped with snack foods.

Samantha Lylis, 15, is devouring a cup of cheese puffs while slipping a granola bar into her jacket pocket. Eager to get to the next table, she allows a visitor to guide her toward the chocolate soy milk. Tasting it, she exclaims, "Mmm! Vanilla yogurt smoothie! I like this the best."

The Perkins students are participating in a taste test sponsored by Stonyfield Farms, the New Hampshire-based yogurt company. The products are being tested for the school's new vending machine, which will come compliments of Stonyfield's Healthy Vending Machines program, initiated by the company in 2003, as a response to the increase in obesity among school-age children. Stonyfield loans schools machines stocked with snacks that meet specific nutritional guidelines, which is one way to get healthier food into schools, says president Gary Hirshberg.

At Perkins, where nutritionist Margaret Loeper Vasquez has been addressing students' eating and exercise habits for the past two years, there has been some resistance to change, she says, but at the taste test students seem excited about the new choices.

Over his third strawberry yogurt tube, Core Kadlik, 14, says, "I think it's incredible. At first I was skeptical, but now I'm like, man, it's great."

His friend, Morgayne Mulkern, 11, agrees. "I really like having choices," she says.

Both students think healthy snacks would be good for the school; the vending machine will be stocked with the students' favourite items from the taste test.

Hirshberg got the idea for the vending machines one day when he learned that his son had pizza, chocolate milk and Skittles for lunch that day. The father of three says, "I was feeding millions [of people] cups of yogurt every day, and here was my own son eating Skittles for lunch."

At Perkins, the new vending machine is part of a series of changes Loeper Vasquez has been implementing since she joined the staff three years ago. "I was under the impression that our kids were heavier," she says, and after some research, she found she was correct. Blind students, she points out, are more likely to be sedentary than their peers who can see. And blind children have a particular set of challenges when it comes to managing their weight and their health. "It's hard to teach portion control or body awareness," says the nutritionist.

Loeper Vasquez has added more fruits and vegetables and whole grains to the daily menus. She's also started a walking club and changed many offerings in the snack bar. "We still have candy bars," she says, "but now they're miniature."

She's hoping that snacks such as cheddar soy crisps, wasabi green peas and fruit leather will become a hit with the students. But she's also realistic. "They're typical teenagers," she says. "So they like to bellyache about the food at school--no matter what it is."

Reprinted from the Boston Globe, March 30, 2005.

Typical Workplace Hazards

  • Tripping over boxes or other items left in a pathway;
  • Falling over something that extends into or across a pathway, like a countertop extension or power cord;
  • Getting hit by something hanging from above, like a safety light;
  • Something falling from a top shelf, like precariously stacked books or packages;
  • Being burned by something left unattended or out of place, like a hot plate;
  • Being cut by something with an exposed blade, like a paper cutter;
  • Being shocked by a frayed or loose electrical connection, like a coffeemaker not completely plugged into a wall outlet;
  • Workers not being familiar with health and safety materials, procedures and equipment.

SOLUTIONS FOR AVOIDING HAZARDS

  • Make safety and mutual consideration imperative among all personnel. Introduce safety training to every worker; reward caution and consideration;

  • Develop a team approach to eliminating hazards. Have a safety committee. Get employees in the habit of keeping paths clear, sharp edges guarded, appliances turned off (when not in use) etc.;

  • Use less dangerous alternatives like microwaves, cool CFL light bulbs, and equipment with built-in safety features, such as safety paper cutters. Have electrical outlets in many places, so cords don't need to be draped. Use typical earthquake safety precautions, such as latches on cabinets and lips or non-skid padding on shelves, to keep things from falling;

  • Inform employees when an unavoidable hazard is present, such as a wet floor, an open elevator or an excavation. Orient blind employees to the locations of new or current hazards;

  • If you have written material, signs or posters addressing safety issues, make sure blind employees receive the same information in a form accessible to them. Labelling on workplace safety and first-aid devices should also be familiar and available in alternate formats;

  • In the event of emergencies or evacuation drills, specific members of staff could be designated to assist employees with vision impairments. A buddy system could be used for all employees;

  • Visual alarms (flashing lights) for blind persons who are also hearing impaired should be installed in all areas of the premises, including the washrooms;

  • All employees have to be familiar with escape routes and safety procedures. Exit routes and procedures should be designed to cater to people who move more slowly. Exit routes must be clearly indicated and labelled.

Health Professionals Lacking Insight

Editor's Note: Donna Jodhan is a member of AEBC's Toronto Chapter and serves as AEBC's 2nd Vice President. Mike Yale is an AEBC member living in Huntsville, Ontario.

A blind person goes to visit their doctor and as soon as the appointment is over, the doctor hustles out of the office, leaving the patient to find their own way out. He doesn't even tell the patient that the visit is over.

A blind person visits their doctor with a sighted friend, but the doctor speaks to the sighted friend about the blind patient, rather than directly to the patient.

A blind person goes for medical tests that require them to get undressed. The technician asks the patient if anyone has accompanied them. When the patient says "yes", the technician asks if the sighted escort can help them to get changed. When the patient says that he can do this independently and all he needs is for the technician to guide him to the cubicle, the technician replies that this is not his job.

A blind person has a scar on their face and visits their doctor with the hope of having it fixed, but the doctor asks why the patient wants the scar tended to, as he cannot see it anyway.

These are all real-life incidents experienced by blind and partially sighted people. Based on these examples, we wonder, given the choice, how interested health-care workers really are in helping us to receive the best service that this country has to offer? Most Canadians would probably say that this is no shocker, given the many challenges that our health-care system faces, but it is crucial that people in the medical services need to become aware of how to interact with blind and partially sighted persons.

Many doctors assume that people with restricted vision either do not work or are unable to do so, taking it for granted that we receive government assistance or depend financially on our families. When Donna tells them that she owns her own company and that she attended McGill University and obtained an MBA, they are shocked. Most obviously feel that we are unable to contribute to or participate in society. A number of blind patients feel that doctors, when faced with a difficult case with regard to saving or improving vision, seem to prefer to give up hope rather than give it an extra try. Blind people feel that they are not a priority when it comes to medical services, and they note that doctors often become annoyed or agitated whenever the patient attempts to ask questions about their vision or other health conditions.

Witness Mike's experience with the medical profession when he lived for a time in Toronto. In Huntsville, where he had lived for 20 years, health care workers were courteous and moderately informed, as Mike knew many of the medical professionals from around town or from his civic activities. In Toronto, it was different. While lab technicians and nurses were usually competent and friendly, his GP and heart specialist were not. The GP did not take a family history, did not explain procedures like the cardiogram, did not prescribe medication for pain, was abrupt when attempting to constructively criticize him about his lifestyle, and would not allow either Mike's guide dog or fiancee into the examining room. The heart specialist told Mike he'd already had a heart attack and ordered more tests, an angioplasty and maybe bypass surgery. But when Mike said he wanted time to think about the treatment and research alternatives, the doctor treated him like he had no right to ask questions or try to inform himself. Eventually, Mike decided to follow a naturopathic treatment.

"I felt dehumanized by the Toronto doctors," Mike says. "I felt as if they were too rushed to care for me as a person, and could only see symptoms. They seemed unable to handle my blindness or the little things they could do to relieve my fears and truly keep me informed. They seemed to resent me asking questions. They told me I was foolish and that any treatment other than theirs was nonsense and worth nothing. I know doctors have more patients in the big city and their time is at a premium, but I'm not stupid, and it is my right to choose a treatment after being completely informed. I was made to feel like a walking symptom, a thing, and a dumb thing at that. My concerns, questions and even side effects to medicine were trivialized and ignored. I was virtually coerced into medical procedures that were never fully explained to me. The internet was more helpful, and far less rude. I hope I live long enough to see some change!"

There is a very real gulf that exists in Toronto and, indeed, right across our country--an ever-widening communication gap between doctors and their blind and partially sighted patients. What can we do about this? How can we work together to bridge this widening gap between the patient and health professionals?

  • Doctors must be better educated about how to interact with patients who are blind and partially sighted.

  • Governments have to find ways to ensure that such patients are adequately treated, even if it means making more money available to do it.

  • More health professionals of all types should be trained in how to deal with the needs and demands of all disabled persons.

  • Doctors must change their attitude toward the disabled, so that they are capable of explaining themselves without the assistance of a third party--even though it is without eye contact.

  • If you are a Doctor, it is very important that you look at people with disabilities more as Human Beings, and less as an illness that you have a duty to treat. What many of us want is our doctors and other health-care providers to become more informed, understanding and compassionate. Persons with limited sight think, feel, hear, smell and taste; we just don't see very well, if at all. Please remember this the next time you encounter one of us.

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