TABLE OF CONTENTS

Editorial: Protecting Canada's Health Care SystemIndependent Living and Medical Model of DisabilityThe Social Model of Disability ExplainedMy Name Is Greg Snider: I Have a DisabilityDisabled People Speak on the New GeneticsGenetic Engineering is DisablingPhysician-Assisted DeathReflecting on Fear of BlindnessTales From the Blindness ClosetCanada's Medicare System: It's All About EqualityQuality Public Home Care and Home Support Services: It's All About Equality for Persons With DisabilitiesNow, Medical Waiting Lists Include Health Care ReformAgeism in Health Care Is Really Hidden RationingBoomers Beware: People With Disabilities Falling Between the CracksDisabled and Poor in CanadaHealthy People 2010 Goals Include People With DisabilitiesAn Overview of Common Eye ConditionsEye Doctor Appointment Checklist Unrestricted VisionDifferences in Brain Usage Among Braille Readers Shed Light on Relationship Between Thought, LanguageEye Cells May Help Regulate Body’s ClockColour Perception in the Brain UnlockedRecovering Vision No Overnight BlessingBlind Women at Lower Breast Cancer RiskThe 12-Step Internet Recovery ProgramRejection Massively Reduces IQ10 Tips for Mental HealthFighting Mental IllnessDepression and Disability: What You Should KnowFrom Here to There: But How?The Adjustment ProcessOne in Four on Disability Has Mental disorderFeeling Fine? You Obviously Need MedicationBraille Medicine Labels Introduced in KoreaTalking Prescriptions Help "Read" LabelsBarriers are Toppling for Medical Students with Physical DisabilitiesIs the Internet Creating a New Gap Between Physicians and Patients?The Promise of Dolphin-Assisted Therapy Thinking and Living Proactively with Diabetes Health ClubBlack Belt-White CaneMy Inner VoiceDeaf-Blind Children to Present Charter to government A German Voyager's Bold Vision for Tibet's Blind Highlights of Recent NFB:AE ActivitiesNew ResourcesMembership Form

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EDITORIALPROTECTING CANADA’S HEALTH CARE SYSTEMBy: John Rae

Issues affecting the health and well-being of persons who are blind, partially sighted and Deaf-blind go far beyond our respective eye conditions, prevention of blindness and adapting to vision loss. They also include concerns about Canada's health care system, current debates over health issues, access to readily available information about one's own health, gaining needed personal supports, and an examination of how we are viewed by the wider community--perceptions that often affect the way we see ourselves. In this issue of the Canadian Blind Monitor, we look at all of these questions, and many more issues.

After the CCF won the 1944 Saskatchewan provincial election, one of Premier Tommy Douglas's first acts was to create hospitalization for every man, woman and child in the province for $5 per person or $15 a year. Saskatchewan's reforms were implemented across Canada's other nine provinces in 1957.

Provincial health plans, funded at 50 percent by the federal government and 50 percent from provincial funds, became firmly entrenched in the 1960s. In 1984, the federal government further codified the principles of Medicare through the introduction of the Canada Health Act, responding to a push by some provinces and physicians to impose user fees on patients. Medicare's codified principles are universality, accessibility, comprehensiveness, portability (from one province to another) and public administration.

Our publicly funded Medicare system has been called one of the defining aspects of Canadian society, yet today there remains vast regional differences in access and availability from province to province, and between urban and rural areas. Privatizing parts of this system is already leading to a two-tier system of medical care in Canada. Protecting and expanding our publicly funded Medicare system is of prime concern to most Canadians. It is also a clear disability rights issue!

The 1991 Health and Activity Limitations post-census survey (HALS) by Statistics Canada reported that 635,000 Canadians identified themselves as having a "seeing disability". The study defined an individual as having a seeing disability if he or she had difficulty seeing ordinary newsprint with corrective lenses if usually worn, or had difficulty seeing the face of someone four metres (12 feet) across a room with corrective lenses if usually worn. Of the 635,000 Canadians with a seeing disability, 511,000 were adults living in households, 94,000 were adults living in institutions, and 30,000 of these were children aged 14 years and under. These numbers are on the rise, and will continue to increase as the "baby boomer" population ages. This will place additional pressure on Canada's health care system.

The issue of euthanasia remains extremely controversial throughout Canada. Consider the words that are often used--"mercy killing”. Was Tracey Latimer consulted before she was mercifully murdered by her father?

Robert Latimer was tried and convicted of committing second degree murder, even though his actions were premeditated. Mr. Latimer's lawyers argued that he killed his daughter because she suffered daily, and he saw ending her life as the only option. However, the Crown presented evidence to show that Tracey Latimer did not suffer to the extent that her father claimed she did. In fact, the court heard many accounts of Tracey enjoying a quality of life that included attending school, spending time with her grandmother, listening to music and being rocked by her mother.

No one would deny that Tracey Latimer had many care needs, or that the social service system failed her, but the question here is: Who has the right to decide what constitutes "quality of life”, how can it be

measured, and who has the right to take it away? Society must stop making these kinds of assumptions and arbitrary decisions on other peoples behalf.

Those favouring genetic modification, or tampering as it can also be called, argue that they will some day be able to eradicate certain disabling conditions. But what many in the scientific community fear is that the new genetic work will lead to the eradication of people with disabilities, not necessarily disabling conditions. In other words, genetic testing may become a slippery slope to insanity and tyranny of the worst sort. All human life must be considered worthy. Americans and Canadians are not worth more than Iraqis or Afghans. Bill Gates' children are not worth more than the children living in the worst conditions in the Third World. So any technology or philosophy that cheapens the life of a disabled child or disabled person must be fought vigorously.

And while we are on the subject of quality of life …

Despite years of public education, blindness is still one of the most feared of all disabilities. Many people still question how we cope and go about our daily lives. Each of us has his/her own story, particular eye condition and unique life situation. We have included a number of "first person" stories in this issue to show some of this diversity.

We hope you will find the range of issues and stories covered in this edition of the CBM interesting, informative and thought-provoking.

INDEPENDENT LIVING & MEDICAL MODEL OF DISABILITYBy: Simon Brisenden

Editor's Note: This article is reprinted from the Disability India Journal, November, 2000. http://www.disabilityindiajournal.com

Our opinions, as disabled people, on the subject of disability are not generally rewarded with the same validity as the opinions of experts, particularly, medical "experts". They reproduce the myths of disability through books, articles, lectures and other forms of soothsaying and oracle, whilst also having the good fortune of receiving a salary for their effort. It is not, of course, in dispute that they deal with facts—the question is rather one of whether these facts can be adequately interpreted from a strictly medical point of view. Is the perspective of medicine in historical blinkers, such that the facts are inevitably sucked into a mode of interpretation that has been predetermined? Are these facts simply processed in such a way that there is necessarily built upon them an image of the disabled person as inadequate?

Presumably it is possible under certain conditions to isolate a set of facts, in the form of a list of general physical or intellectual characteristics, that apply to each form of disability. But the use of these is limited, as there cannot be a formula derived from them that will cope with the particular needs of an individual. Indeed, taken alone, the facts may lead to distortion and misunderstanding and to a view of disabled peopleas a category of rejects, as people flawed on some aspect of their humanity. The medical mode ofdisability is one rooted in an undue emphasis on clinical diagnosis, the very nature of which is destined to lead to a partial and inhibiting view of the disabled individual.

In order to understand disability as an experience, as a lived-in thing, we need much more than medical "facts", however necessary these are in determining medication. The problem comes when they determine not only the form of treatment (if treatment is appropriate), but also the form of life for the

Person who happens to be disabled. Therefore, we need to build up a picture of what it is like to be a disabled person in a world run by non-disabled people. This involves treating the experiences and opinions of people with disabilities as valid and important. More than this, they must be nurtured and givenan overriding significance in order that they begin to outweigh the detached observations of the medical "expert". Our experience must be expressed in our words and integrated into the consciousness of mainstream society.

If the experience of disability is always presented in the context of the medical implications it is supposed to have, it will always be seen as largely a matter of a particular set of physical or intellectual dysfunctions andlittle else. In this way the myth is perpetuated that disabled people require medical supervision as a permanent factor in their lives.

As in society generally, the language used and the situation in which it is expressed will determine the message that goes out to those listening. What we have to get to, instead of this, is the real person inside the image of disability. To begin with, we are not "the disabled". We are disabled. WeAre disabled people or even people with disabilities. It is important that we do not allow ourselves to be dismissed as if we all come under this one great metaphysical category "the disabled". The effect of this is adepersonalization, a sweeping dismissal of our rights to be seen as people with our own uniqueness, rather than as the anonymous constituents of a category or group.

Similarly, we must note the way in which the form of presentation of a disabled person's experience can be prejudicial to whether that experience is understood. It can predetermine the image of a disabled person's life that comes through, while appearing on the surface to be an objective attempt at allowing us to speak for ourselves.

We are people with different requirements, yet we are disabled by a society that is geared to the needs of those who can walk, have perfect sight and hearing, can speak distinctly, and are intellectually dexterous. If society was organized on a more equitable basis, many of the problems associated with not being physically "perfect". I refer to a problem of access to building and facilities in the community, and to the callous disregard with which our needs are ignored despite the efforts of sundry committees, working parties and other bodies on our behalf. We are disabled by buildings that are not designed to admit us, and this in turn leads to a whole range of further disablement's regarding our education, our chances of gaining employment, our social lives in the construction of society. However, this argument is usually rejected, precisely because to accept it involves recognizing the extent to which we are not merely unfortunate, but directly oppressed by a hostile social environment.

The Medical Model Limits Progress The question of definition bears very directly on the outlook of the medical profession, which has exhibited an unwillingness to revise the manner in which it views people with disabilities. The problems, from our point of view, is that medical people tend to see all difficulties solely from the perspective of proposed treatments for a "patient" without recognizing that the individual has to weigh up whether this treatment fits into the overall economy of his life. In the past especially, doctors have been too willing to suggest medical treatment and hospitalization, even when this would not necessarily improve the quality of life for the person concerned. This definition has portrayed disability as almost entirely a medical problem.

The limited parameters of this model have been passed on to other professionals and to people with disabilities themselves, leading to unimaginative responses by service providers and to low expectations for themselves. This depressing situation may, to some extent, be changing, but disabled people still suffer from being viewed and defined within this medical model, with its implication that someone will, and should, always be in and out of hospital.

This way of looking at things ignores the sociological and psychological aspects of disability. It ignores the fact that frequent hospitalization and medical treatment is itself one of the most disabling factors about being disabled.

But the truth is, like everybody else, we have a range of things we can and cannot do, a range of abilities both mental and physical that are unique to us as individuals. The only difference between other people and us is that we are viewed through spectacles that only focus on our inability, and which suffer an automatic blindness--a sort of medicalized social reflex--regarding our abilities. The dustbin definition of us as the "disabled" is a way of looking at us not as people with different abilities, and consequently different needs, but as non-people with non-abilities. We are not viewed as people who can construct a life out of our different abilities, but as helpless individuals who have been forced into a life that is constructed for them.

Disability vs. Disease In order to break this disabling definition of a disability being exclusively a medical problem, with medical and para-medical solutions (which in most cases means "no solution"), we must distinguish between a disability and a disease, for there is frequently a confusion of the two. Whereas a diseaseHas a demonstrable physical manifestation (with the exception of the controversial area of mental illness), a disability is by no means so tangible. It results in the inability to carry out certain activities. It is entirelyinappropriate to see someone with a disability as a person who "suffers" from a disease, as this does not contribute to an understanding of the life they lead. It may well be drawing the individual back within the medical model and its debilitating emphasis on physical limitations and its consequent low expectations.

Many disabilities are clearly not diseases, as they might have resulted from traumatic accidents, but even in cases where a disease can be named, it is tangential to see the individual as a "diseased" person. The disability is simply a part of being the person one is, in the context of the social world one lives in. Indeed, there is literally no case in which a disabled person should be seen as "diseased", because no disease related to disability (or anything else for that matter) extends so completely into a person's life as to define that person.

In the independent living movement, we reject definitions that limit and control us, because they do not describe our aspirations. We emphasize our desire for a place in society, to participate as equal members with something to say and a life to lead; we demand the right to take the same risks and seekThe same rewards.

We raise our voices against being victims of a vicious circle, for the control that is defines the disabled individual by the medical profession, social services, relatives, etc., conditions that individual to accept a dependent status in which their life only takes place by proxy, resulting in them being unable to visualize independent ways of living.

The control that we demand over our own lives is one that accepts that we are as irresponsible as everybody else and that we may not always do the right thing from a medical point of view. This is what I mean by the right to take risks. If we are to be treated as individuals who are due the same respect as other people, then we must be allowed to choose a way of living that confronts all the options and risks throughout life that are inherent to living in, rather than outside, society. We believe fundamentally that allindividuals have the right to live independently in the community regardless of their disability.

Yet it is important to note the sense in which we use the word "independence" because it is crucial to everything we are saying. We do not use the term "independent" to mean someone who can do everything for themselves, but to indicate someone who has taken control of his life and chooses how that life is to be led. It cannot be applied to someone living in an institutional setting, therefore, because the routine of their life will be predetermined, to a greater or lesser extent, by the needs of the professionals in charge of the

institution. However, it can be applied to the most severely disabled person who lives in the community and organizes all the help or "care" they need as part of a freely chosen lifestyle. The most important factor is not the amount of physical tasks a person can perform, but the amount of control they have over their everyday routine. The degree of disability does not determine the amount of independence achieved.

We believe that the choice of independent living is not a privilege conferred on us by a generous society, but is the right of all individuals, regardless of disability, to live in the community. We see it as a right that has to be restored to us rather than a freely given gift. Those people with disabilities, who have achieved it in our society today, usually have done so through a process of struggle that continues day in and day out. Yet the benefits far outweigh the disadvantages of the struggle, and the struggle becomes less difficult as more and more people with disabilities assert their right tolive independently.

www.disabilityindiajournal.com/nov2000/article2.htm

THE SOCIAL MODEL OF DISABILITY EXPLAINED

Editor's Note: This item is reprinted with permission of the copyright holder, the Southampton Centre for Independent Living. http://www.southamptoncil.co.uk

IntroductionMore and more disabled people are talking about the social model of disability. For many, understanding it has changed their lives. S.C.I.L. sees it as it's guiding philosophy, but it is still widely misunderstood. This page aims to explain the social model of disability in a way that is easy to understand.

This page serves as an introduction to these concepts. They are usually explored in more detail on disability equality training <http://www.southamptoncil.demon.co.uk/equality_training.htm courses and personal development courses (available from S.C.I.L. and many other organizations run and controlled by disabled people). These courses enable disabled people to relate the principles of the model to their own life.

The social model of disability has changed many people's outlook on life--and it could change yours. If, after reading this, you would like to talk to people whose lives have been dramatically enhanced as a result of the social model, please contact S.C.I.L. or your local organization of disabled people.

A different way of looking at ourselvesThe social model of disability enables disabled people to look at themselves in a more positive way which increases their self-esteem and independence <http://www.southamptoncil.demon.co.uk/independent_living.htm .

Disabled people often feel a loss, for all the things they would like to do, but cannot; a loss of goals and dreams that seem unobtainable. Disabled people often feel they are a burden on family and friends, and a problem for doctors who cannot cure them. This traditional view of disability is called "the Medical Model of Disability", because it sees people as medical problems. As a result disabled people are expected to see their impairment as their problem, something they will have to make the best of and accept that there are many things they cannot do.

The social model of disability starts from a different perspective. It ignores how "bad" a person's impairment is. Instead, it establishes that everyone is equal and demonstrates that it is society which erects barriers that prevent disabled people from participating and restricts their opportunities.

How does the social model of disability work?The social model looks beyond a person's impairment at all the relevant factors that affect their ability to be a full and equal participant in society.

What else is relevant?Heavy doors and inaccessible public transport are just two examples of what makes traveling such a hassle--not the fact that someone is disabled. Every disabled person can make their own list of the barriers that limit their participation. When these barriers and other people's negative attitudes are considered, it is easy to see how disabled people's opportunities are limited by a multitude of barriers.

The social model of disability states that the solution is to rid society of these barriers, rather than relying on curing all the people who have impairments. (in many cases this is not possible or desirable) For example, people with poor eyesight are given a simple piece of equipment--a pair of glasses. Without them they would be excluded from full participation in society and would therefore be disabled. Similarly, the social model solution to the fact that a wheelchair user is disabled because they cannot use public transport, is simple--make all public transport accessible to everyone!

Examples of how society could change to allow disabled people to participateequally:Medical model problem: Painful hands, unable to open jars, doorsSocial Model Solution: Better designed lids, automatic doorsMedical Model Problem: Difficulties in standing for long periodsSocial Model Solution: More seats in public placesMedical Model Problem: Unable to climb steps into buildingsSocial Model Solution: Ramps and lifts in all buildingsMedical Model Problem: Other people won't give you a job because they think you couldn't do it Social Model Solution: Educate people to look at disabled people's abilities rather than looking for problemsThis social model approach to disability that sees the problem as society's barriers, rather than the person's condition, allows disabled people to lift the blame from their shoulders and place it squarely onto society's. The social model of disability empowers disabled people to challenge society to remove those barriers.

Medical model says:* You are a sufferer; * You are the problem; * Your disability needs curing; * You cannot make decisions about your life; * You need professionals to look after you; * You can never be equal to a non-disabled person. Further reading:Disability politics: Campbell J & Oliver M. (1996 London: Routledge)Pride against prejudice: Morris J (1991 London: Woman’s Press)

MY NAME IS GREG SNIDER: I HAVE A DISABILITYBy: Greg Snider

Editor's Note: Greg Snider is Chair of the Ontario Public Service Employees Union's Disability Rights Caucus. The following is an excerpt of his address to OPSEU's annual Equity Leadership Meeting, September 10, 2003, in which he describes how he has dealt with his disability.

I have a disability. Eleven years ago I would not have admitted that.

Some believe that that was the attitude that insured that I didn't allow my disability to set any limits. In fact that's not the case. Let me tell you a story.

I use to work at an institution for persons with Developmental Disabilities. During this time I considered myself to be a person without a Disability. My daughter, Sarah, then was only a little over a year old. At lunch I would rush to the washroom and scrub a layer of skin off. Then while smiling from ear to ear, I would hurry off to Kinderplace Daycare Centre to feed Sarah lunch. I would rush down the hall, through the Daycare's doors and down to their dayroom where several children would be lined up in their highchairs, bibs in place, ready for their lunch. Then I would slow down. You see, I couldn't make out which was my daughter. A father should be able to pick out his daughter.

But don't be telling me about my vision problem, because I didn't have one. You can't imagine how much those few minutes ate away at me, and yet I would tell no one because to do that would be to admit I had a disability.

It took the staff a week or so to pick up on what was happening, and from then on when they saw me coming, they would tap Sarah's highchair and point out to her that I was there, ensuring that in the process I noticed. Wouldn't it have been easier if I had admitted to myself that I had a disability and asked for assistance when I first needed it? If it had been anything less than feeding my daughter lunch, I would have stopped going. As it was, I came close.

If I had, what would have been the result? The staff at Kinderplace would never have picked up on what the problem really was. Instead, they would have decided that I simply wasn't as good a father as they thought I should be. I would have told everyone who would listen that I didn't want to bring anything from the wing to the daycare. It's a weak argument, but I would not have needed one. Opting out was an option I frequently used.

Several years later, I was transferred from a job where I needed little accommodation, and requested none, to a position where I was expected to be working at a computer all day. At age 33, I learned that I had a disability.

Years later I learned that, if I brought a magnifier, I could read something other than hardcover books, and if I went to the large print section of the library, I could read without having to take a break every couple of pages.

So hear I stand today. Greg Snider, President of Local 714, Acting chair of the Thunder Bay Area Council, church board member, NDP riding executive member and more important for today, Chair of the Disability Rights Caucus.

Handicapped. Does anyone here know how the 1983 United Nations World Program of Action for persons with disabilities defined handicapped?

Handicapped: a disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal depending on age, sex, social and cultural factors, for that individual.

The important words here are "A disadvantage". Therefore, I'm not handicapped--the sign on the bathroom door is. Fix the sign, and my disability no longer impedes me. Therefore, no Handicap. This bears repeating.

Change the set-up of the office so that people in wheelchairs can access the office, and there is no disadvantage to entering the office for anybody, and no handicap.

The solution to an access barrier can only be to view it through an Equity lens prior to making decisions. That means that we look at not just cost and requirements, but that we also look at the effect that has on minority groups.

I don't wish to leave you with the impression that we are only talking about physical structures. In fact, we could be talking about anything from the board structure to the attitudes held by a local executive. Either of these could represent a barrier to a person with a disability.

So let me wrap up by telling you what the members of my caucus want. They want better benefits, better wages, a government committed to improving the Public Services, a fair social assistance program for those in need, and they want the killing of union activist in Columbia to stop, and they think the way to do this is through their union. To put a twist to an old saying:

Lead or follow, but get the barriers out of the way. We're stronger together.

DISABLED PEOPLE SPEAK ON THE NEW GENETICSBy: DPI Europe

Disabled Peoples International (DPI) is a human rights organization committed to the protection of disabled people's rights and the promotion of their full and equal participation in society. Established in 1981, DPI is represented through active membership of national organizations of disabled people in over 130 countries, including 29 in the European region (DPI Europe). This policy statement was developed through a project on bioethical issues and initiated in accordance with DPI Europe's Action Plan 1999-2002, adopted in Syracuse, Italy.

Ten Key DemandsDisabled Peoples International (DPI) is a human rights organization committed to the protection of disabled people's rights and the promotion of their full and equal participation in society. Established in 1981, DPI is represented through active membership of national organizations of disabled people in over 130 countries, including 29 in the European region (DPI Europe). DPI Europe has become greatly concerned about the threat to our human rights posed by developments in human genetics research and practice. In the meantime, our voice struggles to be heard in the bioethical and scientific debates. Recognizing that advances in human genetics and medical-based quality of life decisions raise serious ethical issues for both disabled and non-disabled people, issues which must be considered within the framework of the essential enduring diversity of humankind; We demand that:

The use of new human genetic discoveries, techniques and practices are strictly regulated to avoid discrimination and protect fully, and in all circumstances, the human rights of disabled people; Genetic counselling is non-directive, rights based, widely and freely available and reflects the real experience of disability; Parents are not formally or informally pressured to take pre-natal tests or undergo "therapeutic" terminations;

All children are welcomed into the world and provided with appropriate levels of social, practical and financial support; Human diversity is celebrated and not eliminated by discriminatory assessments of quality of life, which may lead to euthanasia, infanticide and death as a result of non-intervention; Organizations of disabled people are represented on all advisory and regulatory bodies dealing with human genetics; Legislation is amended to bring an end to discrimination on the grounds of impairment as exceptional legal grounds for abortion; There is a comprehensive program of training for all health and social care professionals from a disability equality perspective; As the human genome is the common property of humanity, no patents are allowed on genetic material; The human rights of disabled people who are unable to consent are not violated through medical interventions.

GENETIC ENGINEERING IS DISABLINGBy: Sal Vella

Editor's Note: The following article is reprinted from the Hamilton Spectator, July 18, 2002.

As part of an ethics course, I was recently reading Genohype: The Overselling of Genetics by Neil Holtzman. When a fellow disability rights advocate phoned and asked what I was doing, I told him I was reading about genetics. "You mean the new wave quick fix for getting rid of us?" he joked.

His reaction isn't uncommon among disabled people, especially those of us who advocate disabled people's rights. We feel a strong sense of community, have an understanding in who we are and have become acutely aware of the many forms of discrimination and human rights abuses which, for us, define disability. We now see another abuse is being added--discrimination because of what genetics claims to offer.

So what does it offer? Cures, of course--the final solution for disability.

This sounds great for most people. After all, does society want children born with spina bifida or cystic fibrosis? If these and other conditions can be prevented with the help of clinical genetic treatment, what could possibly be the problem? There are, of course, a great many problems. But the most obvious is that after billions of dollars and a decade of orchestrated hype from the biotech-medical industry, there is no gene therapy that has worked.

With no effective somatic gene therapy likely and even researchers like Dr. William French Anderson, the pioneer of gene therapy, admitting that we are probably two decades away from successful germ-line therapy, where does this leave disabled people right now?

Well, we can talk about "what if" forever. Visionary ideas have their place, but instead let's talk about what is. And "what is" is simple: The only proven cure for most genetic conditions is Peter Singer's infanticide, abortion following genetic testing, or embryo selection as part of in-vitro fertilization.

Singer is a controversial Princeton bioethnicist who is arguably the most influential philosopher in the world today. He is a utilitarian philosopher who argues strongly for animal rights. Yet on the other hand, he banishes disabled people from the realm of "personhood" by advocating the elimination of severely disabled babies, who he claims would only become burdens to society.

Now, and for some time to come, the biotech steamroller has nothing to offer disabled people. But perhaps the worst aspect of the entire project is that it has come in a wrapping that is, itself, disabling. To justify the steamroller, disabled people have been presented, at best, as objects of pity, and at worst, as costly mistakes that could be avoided. Why else would we need so desperately to be cured? Why else would Bob Edwards, world-renowned embryologist and IVF pioneer, have said recently: "Soon it will be a sin of parents to have a child which carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of children."

This view is reminiscent of mediaeval religious ideas of disability being a punishment for "the sins of the fathers”. Talking about the genetic "quality control" of children as a new public responsibility is reminiscent of ideas prevalent in the 1930's about threats to the population stock from those classed as "imbeciles," criminals or alcoholics. What do such ideas about the supposed new responsibilities arising from genetic knowledge mean for disabled people and society as a whole?

Genetics is a fast-paced field of scientific development. Disabled people are involved by default because our impairments are used as justification for enormous resources being used for research. In fact, the big bucks may reside more in the increasingly consumer-led approach to reproduction--"positive eugenics"--and the tests to screen out individuals with "bad genes"--"negative eugenics"--rather than ineffective treatments for people with quite rare genetic conditions.

In addition, "new hope" for disabled people is accompanied by the danger of disabled people and others experiencing increased discrimination in employment, insurance, health care provision and education. This is where disabled people feel a responsibility to raise the alarm. There shouldn't be unfair discrimination in our health service, in employment, in insurance--but there is. For years, disabled people have been turned down for jobs that they were qualified for, denied or charged high premiums for insurance for spurious reasons. The discrimination that disabled people have faced and continue to face should act as a warning about what may come.

Many in society see disability as a purely medical problem--and genetics offers new "empirical" evidence to bolster this view, alongside the promise of potential miraculous solutions. For those of us who see disability as a political and human rights issue, the "cure" for the negative experiences that many disabled people face lies elsewhere--in according value to people's lives, in ensuring that society is accessible and open to the needs, rights and talents of disabled people. It does not mean a rejection of good quality health care available on an equal basis according to need, not resources or judgments about "quality of life”.

It is clear that while the hype has been about cure, the reality is about termination. Under the wheels of the biotech steamroller, a climate of intolerance against disabled people is being encouraged.

Most disabled people do not oppose medical research or genetic testing--if it is part of an ameliorative therapy or the treatment of illnesses or genetic conditions. What is opposed is eugenic cleansing carried out in the name of treatment. The price is too high for everyone.

PHYSICIAN-ASSISTED DEATHDisturbing Developments

By: Mel Graham

Editor's Note: The following article is reprinted, with permission of the Council of Canadians with Disabilities, from Abilities magazine, Spring, 2001. http://www.abilities.ca

Recent reports from the Netherlands about its new legislation permitting the qualified practice of sanctioned, physician-assisted death is causing grave concern for vulnerable people in Canada. It also moves the issue to a new, frightening level of immediacy.

Canadians are lucky in that this development's implications have been exhaustively laid out in an 80-plus-page paper commissioned by the Council of Canadians with Disabilities (CCD) and sponsored by the Canadian Bar Association's Law for the Future Fund. Lawyer Orville Endicott, author of "Legalizing Physician-Assisted Death: Can Safeguards Protect the Interests of Vulnerable Persons?", completed the final draft just days before the story broke internationally on November 29. Endicott is a lawyer with years of experience working on disability rights issues.

The nub of the news for us is that, rather than resource health system items such as pain management research and palliative care, the Dutch appear to have opted for a rationale based on the philosophy that life is for the young, the well and the able-bodied and -minded. Has the slippery slope we keep on harping about arrived at last?

Although Canada --rather than euthanasia "hot spots" like Holland, or the jurisdictions of Oregon or Australia's Northern Territory--comprises Endicott's major focus, the situation he outlines does not encourage complacency, no matter where you live. Since the early '80s, numerous Canadian court actions and legislative activities, too, have had the effect of emphasizing the open-question status of physician assisted suicide/euthanasia.

The 5-4 split decision in Canada's Supreme Court in the famous Sue Rodriguez case of 1993 highlights the volatility of this discussion: how the otherwise admirable intentions of one individual can irreparably lead to devastating effects for an entire class of a nations' citizenry. By that slim margin, Section 241(b) of the Criminal Code of Canada, which prohibits aiding or abetting another person to commit suicide, was saved from being struck down as violating the guarantees of liberty and equality in Sections 7 and 15 of the Canadian Charter of Rights and Freedoms.

Ultimately, Section 241(b)'s capacity to withstand mounting pro-euthanasia/assisted-death pressures may or may not stand, but it will surely be tested.

The common thread in the three physician prosecutions that Endicott discusses in detail involves how criminal and justice system administration has been operating vis-a-vis euthanasia/assisted suicide in recent years. The full force of prohibitions against these offenses remains, but their practical status is ambivalent, to say the least. That is partially because of a convenient, lesser charge of administering "a noxious substance or thing." It relates as well to a stretched interpretation of what specific intervention does or does not "cause" death. Their exercise has effectively removed jury involvement from the "de la Rocha”, "Genereux" and "Morrison" cases.

And how many more in the future? Such temporizing administrative ploys may buy some time, but if they are allowed to continue indefinitely, much of our ability to hold the line --at least until a consensus favourable to the interests of vulnerable Canadians can be worked out --may be hopelessly snarled in legal interpretation and precedent. For example, in two of these cases, doses of potassium chloride, which has no salutary effect on a dying patient other than to stop the heart, was administered along with morphine in the final hours. In neither instance were murder charges a part of the final outcomes. Also, Robert Latimer's

being charged with second- rather than first-degree murder is relevant, because assistance in regard to suicide has always been one of his main defenses and because the Crown, before a particle of evidence was adduced in court, assumed that a jury would not convict on first-degree murder in a case where the spectre of "mercy" could be raised. Thus the statement and intent of the law in respect to physician-assisted suicide may be clear and unequivocal --but our legal-system practitioners' commitment to it is not.

Though Endicott's study reveals nothing from which we could literally take comfort, there is one bright spot in connection with the work of the 1995 Special Senate Committee on Euthanasia and Assisted Suicide. The Senate body established in 1999 to review the committee's report, "Of Life and Death”, was a subcommittee of the Standing Senate Committee on Social Affairs, Science and Technology chaired by Sharon Carstairs. Since it was charged to consider only the Special Committee's unanimous recommendations, the title of the subcommittee's June 2000 report, "Quality End-of-Life Care: The Right of Every Canadian”, tabled on the fifth anniversary of "Of Life and Death”, denotes what appears to be a quite different take on the entire discussion. Unfortunately, it almost certainly does not reflect that order of change in Senate sentiment, especially when we consider that, among the recommendations to Parliament of the 1995 committee report, one called for legislation providing for a third category of homicide sentencing for cases involving so-called "compassion" or "mercy”.

CCD will be publishing Mr. Endicott's paper in the near future.

Mel Graham is CCD's Communications Officer. For more information, contact the Council of Canadians with Disabilities: voice/TTY: (204) 947-0303; fax: (204) 942-4625; or email: ccd@ccdonline.ca

REFLECTING ON FEAR OF BLINDNESSBy: Seville Allen

Editor's Note: This article is reprinted from the Braille Monitor, November, 1997. http://www.nfb.org

It was almost noon on Saturday at the vestry retreat. The morning meeting was breaking up, and we were about to move down the hill for lunch. My usual anxiety began to rise as I contemplated yet another social situation in which I find myself feeling isolated and awkward as people divide into dyads and small knots, often moving away from me as I approach to join them. As I put my slate and stylus into my purse and closed my notebook, one of my fellow vestry members came and said, "Seville, I want to go to lunch with you because I need to talk to you."

Pleasantly surprised, I answered, "Certainly." What followed was one of the most honest and positive experiences I have ever had in dealing with blindness. The young man who asked me to go to lunch with him had just joined the vestry. I knew him by name and reputation as an excellent youth leader, but we had not spoken before.

As we left the building to walk down the hill to the cafeteria, I explained that I could take his arm as we talked, or walk beside him. He offered his arm, I took it, and we started down the hill as the snow fell on our heads. We had only walked a few steps when the young man announced that he wanted to talk to me because he was afraid of me as a blind person. "Seeing you frightens me because I would be helpless if I couldn't see." I was shocked at his honesty, paused for a few seconds to gather my thoughts, and then answered that I was not surprised to learn how he felt, but surprised that he was so up front and honest about it.

As we continued our walk to the retreat centre cafeteria, we discussed his fear and the realities of not seeing. When I explained to him that, most important, blindness has nothing to do with darkness--the thing he feared

the most--he began to relax. I explained that blindness means the lack of eyesight, nothing more, nothing less, and that darkness must be seen to be experienced. I also told him that, if he were to lose his vision, he would be frightened, depressed, and probably angry. I assured him that would be a very normal reaction. I explained that he would need time to learn how to function as a blind person and that this learning would take several months in a good rehabilitation centre. Using our Federation philosophy, I explained that we have come to understand blindness as a characteristic, which is often inconvenient, but not a tragedy.

By the time we reached the cafeteria, we had moved on to other subjects, such as the lunch menu, and I explained how he and I would navigate the food line, carry our trays, and reach the table to join our colleagues.

I share this delightful experience because I hope it may provide you, as it did me, a reminder that, as we are changing what it means to be blind, the change takes place slowly and will be accomplished through incidents such as this one.

Unfortunately, my conversation with our new young vestry member was an exception to our usual fatiguing treatment as helpless children, unaware of where we are or what we are doing, and from the social isolation caused by neighbours and colleagues who avoid us because they are afraid to talk to a blind person. This positive, honest interaction certainly has renewed my desire to continue the much-needed education that we must effect as we journey on our road to full equality.

TALES FROM THE BLINDNESS CLOSETBy: Julie Sanfacon

Editor's Note: Julie Sanfacon is currently participating in an international development project in Mali, West Africa.

Some people say that I am mystifying. I sometimes do not use my white cane during the day but need to use it at night. From time to time, I also put on my inline stakes and go for a spin. My behaviour is quite mysterious for some people but clear to eye specialists.

I am legally blind but have useful remaining vision; however, darkness and glare have a strong impact on my remaining vision. I experience night blindness. Since late 2002, my vision has changed. I developed photophobia, an intolerance to strong light. This new eye condition causes new problems because strong sunlight and neon lights blind me and hurt my eyes. I have also lost a good deal of depth perception and trip more often on low obstacles.

It took me time to cope with my various limitations. In 2001, I asked my local rehabilitation centre for a white cane. I was ashamed, however, to use it. I was afraid that my neighbours would think I was acting strangely. I can imagine that it can be strange to see someone on inline skates during the afternoon and see that same person walking with a white cane at night. I put my cane away in a closet until I gathered enough nerve to use it.

My cane came out of its closet in late 2002, when I was living in Australia and developed photophobia. I dared to use it from time to time and enjoyed walking safely in the street. I avoided injuries caused by tripping, missing steps and bumping against obstacles. It was a great step forward. I now use my cane on a regular basis.

Since I have been using my white cane, though, many labels and assumptions started to materialize. I noticed that some people felt that activities such as camping or adventure travel were "unsuitable" for me. In

February 2003, I took legal action against an Australian travel company and a tour guide because of discrimination based on disability that occurred on several occasions during an adventure tour I took part in as a solo traveller. My advocate received a letter from the tour guide in which he clearly stated that legally blind people are not to be booked on these tours. I won my case against this company, but the travel guide's discriminatory behaviour and remarks left many scars.

I also feel that I am accountable for the risks I take. Three years ago, when I did not use my white cane, I ran towards attractive things such as a cage full of colorful parrots and the ebb and flow of cool waves on a beach. People were happy to witness such enthusiasm. Now, if I suddenly run towards something attractive, I "dash off" and disappear out of sight, leaving my companions in a state of anguish. They perceive me as reckless rather than curious.

Many things changed since I came out of the blindness closet. But it is not I who has changed, but people's perceptions of who I am. Now, some people see my cane, not me. I strongly believe that taking my white cane out of its dusty closet was a step towards freedom. I need to rebuild my self-confidence, however, and above all, tackle the task of educating people around me about the use of the white cane. To achieve this, I need help.

The blindness community should work together for the betterment of everyone longing to get out of the blindness closet. It should raise public awareness to help blind and partially sighted people to use their white cane with a renewed sense of confidence and pride. The white cane should not be a source of misunderstanding, pity and discrimination. People should perceive the white cane as a symbol of independence, as a tool to walk with swiftness and grace.

CANADA'S MEDICARE SYSTEM: IT'S ALL ABOUT EQUALITYBy: Derek Fudge

Editor's Note: Derek Fudge is National Director of Policy Development and Liaison for the National Union of Public and General Employees (NUPGE), based in Ottawa, and is the former Chair of the Canadian Labour Congress's Disability Rights Working Group.

Most nations proclaim a passionate love of equality. And, most nations do little to prove it. Canada is not most nations.

One of our basic operating principles is to use public policy in unique and daring ways to ensure and promote practical, day-to-day, equality. Medicare was our best example. No one single public policy instrument ever did more to let us live up to our equality ideal.

But, as we desert and diminish Medicare we desert and diminish our commitment to equality for all. No one knows this better than Canadians with disabilities. Thus, the campaign to respect, restore and expand Medicare is, for them, not just about better medical care. It is also a campaign to respect, restore and expand the equality of Canadians with disabilities.

A Giant Step BackwardsStatistics readily show us that it's the most vulnerable citizens of our society--people with disabilities and seniors--who benefit the most from our Medicare system. After all, they are less likely to have the financial resources to access the growing for-profit element of health care in Canada.

Since the inception of Medicare, Canadian society has become much more inclusive of, accessible to, and accepting of people with various types of disabilities. However, the growing gaps and privatization of our

Medicare system mean less access to health support services for seniors and people with disabilities, and represents a step backwards in their struggle for equality. This is seen mostly within the community and continuing care sector of our health system. The irony of this situation is that preservation and expansion of this sector of our public health system not only promotes equality, it makes good economic sense.

No Money for the New ModelThe problem with respect to inadequate access to health support services in the community has existed for decades, but reached a crisis point in the mid-1990s when provincial governments began to restructure health care in Canada. The health care buzz words of “closer to home” health care and the “continuing care model” of health care were to be heard in every jurisdiction across the country, giving rise to the closure of close to 300 hospitals and the elimination of thousands of acute care beds in the lastdecade.

Unfortunately, when it came to implementing a community-based health care model, our politicians failed to provide adequate infrastructure and resources to community care--the less expensive preventative side of ourhealth care system. The result has created an overburdened Medicare system that provides less equal access for persons with disabilities and seniors.

Canada's ability to promote equality should be measured by the degree to which our most vulnerable citizens can fully participate in all aspects of society. An important vehicle to achieve this is through the provision of a range of public services that supports the integration and participation of our disadvantaged citizens. Most of these services support and form a community-based health care system.

Paul Martin Pulls the PlugAround the time that health care was being restructured across the country towards a community-based model of health care, our federal government, through its war on the deficit, cut back on its funding of health care and eliminated its funding for the many services that support a community-based health care system. The biggest single factor in this regard was the 1995 federal budget of former Finance Minister Paul Martin, which reduced federal funding for health care and eliminated an important public policy instrument that promoted greater equality in Canada--the Canada Assistance Plan (CAP).

CAP would have also gone a long way in providing financial resources to support a community care model of health within Canada. CAP was a federal/provincial fiscal arrangement dating back to 1966 whereby the federal government provided provincial governments with 50 cents for every dollar they spent on community-based health and social services. These federal “50% dollars” provided provincial governments with a significant incentive to expand services and programs to allow our more vulnerable citizens, like people with disabilities, to fully participate in the lives of their communities.

The support services funded under CAP included such programs as home care, homemaker services, attendant care and respite care. CAP also contributed to the costs of medical and assistive devices that allowed seniors and people with disabilities to be integrated and fully participate in society.These inexpensive people-oriented services not only improved their quality of life, they helped keep them out of long-term care institutions and/or hospitals. Without CAP funding and no recognition under the Canada Health Act, these services now lack stability and can be changed or eliminated atthe drop of a hat. As a result, the real-life needs of many people with disabilities are being ignored.

A Half-Million ShortchangedIt's estimated that more than one million Canadians with disabilities need help with one or more everyday activities--but over half of those persons are not getting the help they need. There are many examples where provincial governments across the country have slashed, privatized and/or downsized a range of services that

would have greatly supported people with disabilities in overcoming barriers to participating fully in daily living, including economic and social activities.

Since the elimination of CAP, provincial governments have failed to provide adequate funding for the necessary support services to sustain a community-based health care system. Private expenditures on community-based services have increased by almost 200%. The increased demand for healthsupport services has greatly outstripped the increases in public spending.

The elimination of CAP has affected the lives of persons with disabilities disproportionately to other Canadians. The loss of the national standards of CAP meant the loss of any assurance of access to many of the vital services they relied on for independent living in their communities.CAP ensured that the sharing and caring values of Canadians formed a part of our country's overall prosperity. CAP also provided a strong signal that the state had a collective responsibility for the associated costs related to an individual's disabilities.

The “For-Profit” Sharks Close InThis instability in funding for these vital support services has greatly Attracted “for-profit” interests, and thus spread the growth of two-tier health care. The growth of “for-profit” private services in community health will always hit those with the lowest incomes hardest, resulting in less access to health care services for them, compared to those who can afford to pay directly for health care. People with disabilities are disproportionately poor, and as a result, their access to health services will decrease as a result of increased fees and privatization.

Choking on the Cost of DrugsThe same can be said about access to drugs that many people with disabilities need to ensure their health and well-being. As with health support services in the community, Canadians with disabilities need to haveaffordable access to drugs. The spiraling cost of drugs, as well as the de-listing of many drug therapies for people with disabilities by provincial governments, is undermining many of the advances that the disabled community has made in terms of independence, equality and full participation.

Drugs are the fastest growing single cost of our entire health care system. While a majority of Canadian workers has access to drugs through private insurance, the same cannot be said for the majority of Canadians with disabilities. They don't have access to a private drug plan, and are being denied proper access to drugs as a result of many provincial governments increasingly de-listing medications and introducing co-payment plans. If we are committed to community-based care that promotes health, then we must have a national pharmacare plan. Such a program would not only ensure greater access and equality, it would provide an overall savings to Canada's health care system.

Welcome to the 17th CenturyFor people with disabilities, the goals of Canada's Medicare system should be to ensure equality of opportunity, full participation, independent living and economic self-sufficiency. A health care system that increasingly relies on private financing results in the opposite--it creates unequal access. In fact, private sector involvement in our health care system only forces people with disabilities to rely more on the old “charity” model of care--a model that emphasizes dependence and segregation, and transfers the costs of disabilities away from the state and towards families and charitable organizations.The disability rights community strongly objects to this model as a throwback to the old British Poor Laws of the 1600s.

Three Priorities to Get Us StartedCanada's Medicare system needs to be revamped and strengthened through the development of additional national standards that ensure it no longer discriminates against people with disabilities.

There are many essential health support services that are unavailable or unaffordable to thousands of Canadians with disabilities. While these necessary supports are diverse, the most widespread and acute needs relate to three areas:* Personal support services of all kinds (such as self-directed attendant care, home support services, sign language interpretation, communication supports, and support workers);* Assistive devices and supplies (such as mobility aids, hearing aids and other communication aids, incontinence supplies, home oxygen, etc.); and* Prescription drugs and related health needs (such as special diets).

A priority for improving our Medicare system should be a coordinated plan involving the Federal/Provincial/Territorial governments in each of these areas. Such a plan must be developed in consultation with disability rights activists, to ensure that Canadians with disabilities are guaranteed thesesupports.

Four Fundamental PrinciplesThe fundamental principles that should form the basis for this type of plan are:* Health support services made available to all Canadians regardless of type of disability, age or geographic location;* Health support services provided on an equal basis to all, regardless of their residential or living arrangements. In particular, persons living independently or with families and other caregivers in the community should be eligible on an equal basis with persons living in residences and institutions;* Health support services provided based on national standards applicable to Provinces and Territories, and be portable across jurisdictions;* Access to health support services not restricted by user fees or co-payments.

These principles are essential for cementing the link between equality, full participation and health care. By incorporating home care, other health support services and Pharmacare into the Medicare system, the federalgovernment could go a long way in promoting better health outcomes, greater equality and independence for Canadians with disabilities, and ensuring that our public universal health care system is accessible, sustainable and equitable.

This paper was prepared by the CLC Disability rights Group, November, 2002.

QUALITY PUBLIC HOME CARE AND HOME SUPPORT SERVICES:It's All About Equality for Persons with DisabilitiesBy: Derek Fudge The most vulnerable and poorest citizens of our society--people with disabilities and seniors--benefit the most from home care and home support services. However, the growing gaps and privatization of home care and home support services means less access to essential services for seniors and people with disabilities, and represents a step backwards in our struggle for equality.

According to Statistics Canada, 3.6 million people, 12.4% of our population, have a disability. Survey results confirm that the disability rate gradually increases with age--10% among adults aged 15 to 64, and then dramatically rises to more than 40% among persons aged 65 and over. More than half ofCanadians who are 75 years of age (53.3%) report having a disability. Approximately 9.7% of adults [2.3 million] report having difficulty with everyday activities, such as getting dressed or undressed, or cutting one's food.

The Romanow Report on Medicare recognized the need to expand the Canada Health Act to include home care services. Unfortunately, the report distinguishes between home care services and home support services such as help with laundry, food preparation, and housekeeping services. For many persons with disabilities and seniors, these support services are critical to facilitate their active and full inclusion in Canadian society, as well as their ability to live independently in their communities.

Home support services are those services provided by other people and include personal attendant care, home making, respite, etc. It is these important services that support many people with disabilities in obtaining education, being employed and active in their communities. Home supportservices not only help ensure a stable level of health for people with disabilities, but provide them the same equal opportunity as all other citizens to participate in the social and economic fabric of our society.

Without adequate home support services, many of our citizens with disabilities are often forced to live at home under conditions that put health and well-being at risk, or live in an institution where they are segregated from the rest of society.

Many of the home care and home support services critical to the independent living of people with disabilities were once funded under the pre-1995 federal-provincial cost sharing arrangement known as the Canadian Assistance Plan (CAP), that was eliminated by the famous slash and burn federal budget of then Finance Minister Paul Martin in 1995. The elimination of CAP represented the biggest step backward in the struggle of persons with disabilities to live independently in their communities.

Canada's Medicare system needs to be strengthened and expanded to include a national and comprehensive public system of health and home support services that are unavailable or unaffordable to Canadians with disabilities. While these necessary supports are diverse, the most widespread and acute needs relate to three areas:

* Personal support services of all kinds (such as self-directed attendant care, home support services, sign language interpretation, communication supports, and support workers);* Assistive devices and supplies (such as mobility aids, hearing aids and other communication aids, incontinence supplies, home oxygen, etc.); * Prescription drugs and related health needs (such as special diets).

A priority for improving our Medicare system should be a coordinated plan by the Federal/Provincial/Territorial governments in each of these areas, developed in consultation with disability rights activists, to ensure that Canadians with disabilities are guaranteed these supports.

Incorporating home care, home support, other health support services and Pharmacare into the Medicare system would go a long way to promote better health outcomes, greater equality and independence for Canadians with disabilities, and ensure our public universal health care system is strengthened, sustainable and equitable.

NOW, MEDICAL WAITING LISTS INCLUDE HEALTH CARE REFORMProposed Changes Collecting Dust; Ottawa, Provinces Blamed for DelayBy: Thomas Walkom

Editor's Note: This article is reprinted from the Toronto Star, September 20, 2003, courtesy of Torstar Syndication Services.

Ten months after his much-anticipated royal commission recommended crucial changes to Canada's health care system, a frustrated Roy Romanow says Ottawa and the provinces are just spinning their wheels.

Ticking off his key recommendations one by one, Romanow says all have been stalled by either federal inaction or provincial obstinacy.

It's not just his report that has been dead-ended, he says in a telephone interview from Regina, but the entire Medicare reform file.

"It's like a patient on the waiting list," the former NDP Saskatchewan premier says.

"What progress has there been on aboriginal health? Rural and remote health? ... What is the position of the federal government on health and globalization (protecting Medicare from international trade agreements)?"

But his barely concealed anger was directed at governments' failure to move in three key areas.

He criticized Ottawa for not giving the provinces enough money to bring federal Medicare contributions to their historic levels.

Ottawa's latest $27 billion, five-year transfer, announced in February, still falls well short of Romanow's recommendation that the federal government pay 25 percent of the Medicare bill.

And, in his own polite way, he blasted the provinces for reneging on their promise, also made last February, to set up a national health council that would report to the public on how Medicare is doing.

"It's amazing to me that four months after this thing was supposed to be set up, it's still a work in progress," he says.

The health council, which should be the least controversial of Romanow's recommendations, was sandbagged this summer by Alberta Premier Ralph Klein and Ontario Premier Ernie Eves.

Klein said the proposed council would allow Ottawa to muscle into Alberta's jurisdiction over health; Eves threatened not to sign on unless he got more money from Ottawa.

All parties insist some aspects of the national health council are still going ahead. But there is still no agreement over what it will do or to whom it will report.

Indications are it will be far more ineffective than even the modest body Romanow proposed.

Far more telling, though, is the failure of the country's governments to expand Medicare coverage beyond just physicians and hospitals. This was probably the central element of last November's royal commission report.

Romanow recommended broadening Medicare to include a limited amount of home care services and, eventually, some drug treatments. He also called for an amendment to the Canada Health Act, the law defining Medicare, to specifically include advanced diagnostic services such as MRIs.

His argument, backed up by research from around the world, was that a so-called single-payer public health insurance monopoly like Canadian Medicare is the most efficient way to deliver health care.

But so far, nothing has been done in Ottawa to bring any new services under the ambit of Medicare. Romanow says that's frustrating.

"If the single-payer system is the most efficient, as every study shows it is, then surely we should be adding to the core basket of Medicare services," he says.

Ontario already has some home care services that the government partly covers, as well as a drug plan for those overwhelmed by catastrophic illnesses such as AIDS. However, in the area of advanced diagnostic services, it has been going in the opposite direction.

In a move denounced by the two main opposition parties, Ontario's current Conservative government is allowing private firms to set up clinics that will offer computed tomographic (CT) and magnetic resonance imaging (MRI) scans to those willing to pay out of pocket.

Theoretically, Ontarians will be able to get these out-of-pocket scans only if they claim they don't need them. That's to get around the Canada Health Act, which says all medically necessary services must be covered by Medicare. By law, only medically unnecessary services can be offered to those willing to pay cash in order to get faster treatment.

Romanow says he does not want to comment on the health platforms of the three main parties in the current Ontario election campaign.

"This is something for the people of Ontario and the politicians of Ontario to work out," he says. Both the Liberal and NDP health platforms refer glowingly to Romanow's report. The Conservative platform ignores it.

AGEISM IN HEALTH CARE IS REALLY HIDDEN RATIONINGBy: Judy Gerstel jgerstel @ thestar.ca

Editor's Note: The following article is reprinted from the Toronto Star, September 26, 2003, courtesy of Torstar Syndication Services.

It's been almost two years since my mother woke up one autumn morning in the apartment we shared and said she didn't have the strength to move. It was a couple of months before her 96th birthday, and her dementia and frailty had been getting worse.

I took her to a downtown hospital and, after a night on a stretcher in the emergency room, she was transferred to a room on the geriatric floor.

I knew, of course, that she might never come home again. But I also knew that she would choose not to go gently into the night, that the same fierce will to live that had sustained her for 95 years, including 90 winters on the Prairies, would be a force to reckon with.

What I didn't know was how horrific the last six weeks of her life would be in the hospital as she fought to live--or that the health system to which I'd entrusted her would not always be her ally in that fight, but would declare it to be over well before she had given up.

David Globerman, who is 51 and trained as a social worker, knows what can happen to the elderly when they become patients in Ontario hospitals or nursing homes.

He talks about withholding of tests, about "passive euthanasia through omission--what we're talking about are not errors." And he refers to "horrific acts of dehydration, lack of feeding, lack of attention to bedsores, allowing people to lay in vomit and feces, using drugs to dope people."

This week, the Running To Daylight Foundation, which Globerman founded five years ago, co-sponsored a forum at the St. Lawrence Centre on Ageism in Health Care. It took place on the 7th anniversary of his father's death, at age 85, in an Ottawa hospital after a stroke that was not diagnosed because a CT scan was not deemed necessary, despite the family's pleas.

When Globerman surveyed people at the forum--about 85 attended including hospital reps, health care professionals, elderly people, and family members of elderly patients--100 percent responded affirmatively to the question: "Do you believe that some health care providers would have treated you (or a senior you know) better if you or they had been younger?"

At the forum, they talked about what Globerman calls "age-inappropriate care" at best and "conscious neglect and elder abuse" at worst.

I call it unacknowledged rationing in an underfunded health system.

"It is rationing," Globerman agrees. "At a time of scarce resources, the elderly fall to the bottom of the barrel. It's a glaring double standard.

"There's huge abuse and neglect going on in health care institutions, and it should be addressed by all those existing initiatives that currently deal with elder abuse. It's plain dangerous to go into hospital if you'reelderly. And it can be dangerous and a threat to health if you go into a long-term care facility."

One speaker at the forum talked about a 79-year-old woman with Alzheimer's whose broken arm wasn't set properly, and the bone finally protruded, causing a life-threatening infection. "No doctor visited the patient throughout the hospitalization," recounts Globerman.

Other speakers talked of substandard care in nursing homes, with elderly relatives left to lie in their own waste or vomit and going for days or even weeks without baths or showers.

In some, if not many cases, the care and treatment of elderly people in hospitals and nursing homes "is not meeting acceptable standards," he says.

"If it were a child receiving the same care, there's no way that people would accept it."

He says, "There is no mechanism to ensure accountability."

Globerman's goal for Running To Daylight is not only to continue questioning standards for the care and treatment of elderly people, but also to provide independent patient advocates for them.

He can be reached at 416-782-3249 or at rtdlf @ aol.com

BOOMERS BEWARE: PEOPLE WITH DISABILITIES FALLING BETWEEN THE CRACKS

Editor's Note: This item is from the Canadian Council On Social Development, May 20, 2003.

Too many Canadians with disabilities are failing to get the medication or medical attention they need according to Gail Fawcett, Senior Research Associate at the Canadian Council on Social Development (CCSD). This situation is particularly worrisome at a time when the demographic bulge of the baby boomers is heading into age groups which are at higher risk for disabilities.

Fawcett has found that nearly 15% of Canadians with disabilities report being unable to access the health care they need at some point during the year, more than three times the rate among persons without disabilities. To make matters worse, 19% of working age women and nearly 12% of working age men with disabilities are, at times, unable to afford the medication they need. Among those with severe disabilities, these figures climb to 25% for women and about 18% for men.

"It's a Catch-22 for some individuals who may not be able to work due to a lack of medication or medical attention, but for whom paid employment might be the very thing that provides better access to this required medical support," says Fawcett. "We also find that employment is strongly linked to the overall well-being of people with disabilities."

CCSD research shows that the existing Medical Expense Tax Credit (METC) is not providing relief to those who need it most. The majority of persons with disabilities don't claim the medical expense tax credit, perhaps because expense thresholds are high, the credit is worth only a small fraction of the costs incurred, and it is only relevant to people with taxable incomes. Among those persons with disabilities who do attempt to claim the medical expense tax credit, and who are sometimes unable to purchase required medication, about three in ten report that they do not end up actually receiving any benefit from the credit. Moreover, those who are most severely disabled are less likely to receive the credit than those who are mildly disabled.

"In contrast, we see a lower percentage of Canadians with disabilities aged 65 and over reporting an inability to purchase required medication. This is likely due to the effectiveness of provincial drug assistance plans for seniors," says Fawcett. "We need to be looking at a fully refundable tax credit that is better structured or a drug assistance plan for working-age Canadians who are not covered by a private health plan."

The CCSD's greatest concern is that, as a society, we are not taking the measures needed to prevent people with disabilities from being marginalized.

"Exclusion can start at an early age," says Fawcett. "Negative attitudes toward people with disabilities are already evident in grade school, where children with special needs are more likely to report feeling excluded at school and twice as likely to report being bullied."

In addition, many people acquire their disability in adulthood. In fact, it is well known that the risk of acquiring a disability increases with age. This puts the ageing baby boomer workforce increasingly at risk and makes it more important than ever to set in place supports which will allow people with disabilities to continue leading active, healthy lives.

For more detailed data and analysis on issues affecting people with disabilities, see Disability Information Sheets 9-12 at www.ccsd.ca/drip/research/. For more information or to arrange interviews, please contact Janet Creery at 236-8977 extension 228, or e-mail media@ccsd.ca

The Canadian Council on Social Development (CCSD) is an independent, national, non-profit organization focusing on issues of social and economic security.

Disability Research Information Program, Canadian Council on Social Development, 309 Cooper Street, 5th Floor, Ottawa, Ontario, K2P 0G5Tel: (613) 236-8977; Fax: (613) 236-2750; Web: www.ccsd.ca; Email: council@ccsd.ca

DISABLED AND POOR IN CANADAMany Lack Post-Secondary Education, EmploymentBy: Steve Arnold

Editor's Note: The following article is reprinted from the Hamilton Spectator, September 12, 2003.

A new Statistics Canada study confirms what activists for the disabled have argued for years—being handicapped in Canada is a near total guarantee of poverty.

Figures reported yesterday in the agency's 2001 Participation and Activity Limitation Survey conclude handicapped Canadians across the country and across age groups are less well educated, less employed and much poorer than their able-bodied neighbours.

"It's no surprise for us that the figures continue to show Canadians with disabilities are significantly disadvantaged and face tremendous barriers in trying to live," said Laurie Beachell, national coordinator of the Winnipeg-based Council of Canadians with Disabilities. "Living with a disability in Canada frequently means living in poverty."

Conducted for Human Resources Development Canada (HRDC), the 104-page collection of charts and graphs paints a dismal picture of life for the more than 1.9 million disabled Canadians aged 15 to 64. Among its conclusions:* 60 percent have no more than a high school education and 37 percent haven't even finished that, compared to just under 52 and 25 percent of the "normal" population. In Ontario, with a population of 815,930 disabled, 60 percent ended their education after secondary school compared to 51.2 percent of the general population;* 54.5 percent are either unemployed or not in the labour force, compared to only 7.7 percent of their neighbours. In Ontario, 55.2 percent of handicapped residents are either unemployed or not looking for work compared to only 23.7 percent of the general population;* Disabled Canadians reported average income of $21,510 compared to $29,556 for the non-disabled population, a difference of 27 percent;* Disabled women trail handicapped men in all measures --60 percent have high school or less as their top educational achievement, 57 percent are either unemployed or not looking for work, and 81.4 percent reported income under $30,000.

For Beachell, the high unemployment and low income of the handicapped are directly linked to the failure of the education system to accommodate their special needs.

"Until recently, many Canadians with disabilities were products of the segregated school system where the education wasn't of the quality it should have been," he said. "If they do go to university or college, they'll find that many of the institutions are virtually inaccessible to them."

Accessibility, he added, includes not only the problem of getting to classrooms on upper floors in buildings without elevators, but getting to the institution in an era when support for accessible transit and living aids has been slashed in the name of deficit reduction and tax cuts.

"It all becomes a vicious cycle," he said. "We've made some progress over where we were 25 years ago, but in the last eight years we've had to fight battles tomaintain what we have rather than trying to move ahead."

Deborah Tunis, director-general of HRDC's Office of Disability Issues, said efforts are being made to improve the situation. "The analysis certainly confirms that post-secondary education is really, really critical."

On the positive side, she noted that in 1998 the federal and provincial governments agreed on a vision statement for improving disability services, and for the past five years have been working on getting a program in service. Ottawa has also increased education grants to help disabled students buy support services, and agreement in principle has been reached on the terms of a labour force needs study for the disabled.

Changes to the Canada Pension Plan disability system are also planned. This branch of the Canada Pension Plan allows workers to "retire" if their disability prevents them from working. If they later try working again and fail, they can't get back on the pension. Allowing them to automatically return to the pension within two years has been approved by cabinet, but implementation is delayed pending legislative changes.

HEALTHY PEOPLE 2010 GOALS INCLUDE PEOPLE WITH DISABILITIES

Editor's Note: This article is reprinted with permission from the Accessible Society e-letter. http://www.accessiblesociety.org/eletter.shtml

Disability status is typically equated with health status. "The health and well-being of people with disabilities has been addressed primarily in a medical care, rehabilitation, and long-term care financing context," says the National Centres for Disease Control, which is now making an effort to include people with disabilities in its entire public health agenda.

Its "Healthy People 2010" program, a set of health objectives for the nation released in January, 2000, now includes objectives for people with disabilities. ("Healthy People 2000" did not have a chapter specifically establishing public health objectives for people with disabilities.) HP 2010's Chapter 6, on health issues of people with disabilities in the U.S., is available online at http://www.health.gov/healthypeople/Document/HTML/Volume1/06Disability.htm

"More than 54 million Americans experience some limitation in their activities as a result of chronic health problems," says HP2010. "This prevalence of activity limitations or disability will likely increase by about 50% by the year 2010 due to overall increased survival and life expectancy among the very young and aging population, thanks to public health successes in preventing premature death and improved medical and assistive technology." It's a misconception that "all people with disabilities automatically have poor health," says the report, and includes environmental barriers among things that undermine the "health, well-being, and participation in life activities" of people with disabilities.

Objectives set by the project include:--Reducing the number of people with disabilities in congregate care facilities;--Eliminating disparities in employment rates between working-aged adults with and without disabilities;--Increasing the proportion of children and youth with disabilities who spend at least 80 percent of their time in regular education programs;--Increasing the proportion of health and wellness and treatment programs and facilities that provide full access for people with disabilities;--Reducing the proportion of people with disabilities who report not having the assistive devices and technology they need;--Reducing environmental barriers to participation in home, school, work or community activities.

Read more about the CDC's Disability and Health project at http://www.cdc.gov/ncbddd/dh/

Please visit the website of The Centre for An Accessible Society at http://www.accessiblesociety.org To start getting this e-mail letter, send an email to info@accessiblesociety.org with the word "subscribe" in the subject line.To stop getting this e-mail letter, send an email to info@accessiblesociety.org with the word "unsubscribe" in the subject line.

The Centre for An Accessible Society is funded by the National Institute on Disability and Rehabilitation Research to focus public attention on disability and independent living issues. The Centre is a project of Exploding Myths, Inc. a media enterprise company.

AN OVERVIEW OF COMMON EYE CONDITIONSBy: Sara Bennett

Editor’s Note: Sara Bennett is a certified rehabilitation teacher of the blind and vision-impaired. This article is compiled from information taken from the websites of the CNIB and RNIB, as well as from the book, “The Human Eye”, by Kay Ferrell and Naomi Tuttle, the Hadley School for the Blind, 1996.

Blindness takes many forms. While legal blindness is generally defined as visual acuity of 20/200 or less with best possible correction in the better eye, or a visual field of 20 degrees or less, vision loss varies among people in degree, cause, age of onset, prognosis and treatment. This article attempts to outline some of the most common eye conditions today, starting with the eye's anatomy.

The human eye and vision system are often compared to a camera--with a shutter, lens and film. As with an automatic camera, light enters the eye, an image of what is seen is projected, interpreted and produced.

Light enters the eye through the pupil, which is the black hole in the front of the eye. The coloured part of the eye, known as the iris, acts much as a camera's shutter, opening and closing over the front of the eye, causing the pupil to either contract or dilate. In good light, the iris "closes", causing the pupil to contract, thus allowing less light into the eye. Conversely, in dim light, the iris "opens", causing the pupil to dilate, enabling more light to enter. Overlaying the pupil and iris, on the surface of the eye, is a clear tissue called the cornea. The cornea directs light into the eye. Toward the front of the eye, fluid known as aqueous humor circulates and nourishes the eye.

Once inside, light is further refracted by the clear lens, which is behind the iris in the centre of the eye, and suspended from the eye's rim. The lens directs light onto the retina at the back of the eye by changing shape, a process known as accommodation. Toward the back of the eye, fluid known as vitreous humor fills the eye and helps to provide its shape.

The retina is the innermost layer of the wall at the back of the eye. It is comprised of light-sensitive cells called rods and cones. Rods, primarily located on the outer edge of the retina, are responsible for night vision and peripheral vision. Cones, on the other hand, mostly lie in the centre of the retina (macula), and are responsible for fine, detailed, colour, central vision. Like a camera's film, the retina receives the light or image, and then converts it into electrical impulses. These impulses are transmitted via the optic nerve to the visual cortex in the brain. This part of the brain receives and interprets the image, thus producing "vision".

A structural or functional anomaly with any part of the eye or vision system can cause blindness or vision impairment.

The most common cause of corneal scarring in the world is trachoma, an inflammation of the eyelid's lining, caused by a micro-organism. Usually found in the developing world where poverty, overcrowding and inadequate sanitation exist, this condition is contagious. Vision becomes increasingly blurred as scarring of the normally clear cornea progresses. Improved hygiene, antibiotics and possibly corneal transplant surgery serve as preventive and treatment measures.

Glaucoma is one of the most common eye conditions in North America, and results from the blockage of the circulation of aqueous humor. An abnormal build-up of pressure within the eye damages the optic nerve. It can be congenital or adventitious. Initially, in open-angle glaucoma, peripheral vision is gradually affected, and vision loss is unnoticed. Once vision changes are detected, the damage is irreversible. Central vision is usually the last to be affected. In closed-angle glaucoma, vision lossis sudden. Depending on the type of glaucoma, medication or surgery may be used to relieve the intraocular pressure. The best treatment, however, is prevention--through regular eye exams that monitor eye pressure.

The most common condition affecting the lens is a cataract. This clouding of the eye's lens, once begun, cannot be prevented. It may be congenital--sometimes as part of a genetic syndrome or resulting from an infectious disease of the mother--or it can be acquired--through age, trauma, medications, infections or other eye diseases. In most cases, symptoms progress slowly, with vision becoming blurry, colour perception diminishing, and problems with glare (photophobia) occurring. Surgery is usually performed to remove the cloudy lens and replace it with an artificial implant.

Retinopathy of prematurity is a major cause of new blindness in babies in the developed world. Unknown before the use of high oxygen levels for premature, low birth weight babies, this condition stems from the indiscriminate growth of retinal blood vessels. Vision levels can range from near normal to total blindness depending on the retinal areas affected before diagnosis and treatment. Possible interventions range from observation and monitoring, to cryotherapy and laser treatment to allay the retinopathy's progression. Milder forms may regress spontaneously.

Diabetic retinopathy also involves abnormal growth of retinal blood vessels. Fluctuating blood sugar levels change the structure and function of these vessels. This condition's most common form is non-proliferating, which affects only small vessels, and may not affect vision. The proliferating form, on the other hand, involves the retina and vitreous, and may lead to severe vision loss. In this form, the blood vessels grow and bleed into the vitreous. Laser treatment to seal the blood vessels, a victrectomy to replace the vitreous, or increased control of the diabetes, may be used to minimize vision loss. Regular eye exams are important. Diabetic retinopathy is a leading cause of blindness.

Finally, macular degeneration, estimated to be the most common form of vision loss in Canada, involves the loss of central vision. The "dry" form involves distortion of the macula, and gradual, almost unnoticeable, vision changes. The "wet" form, however, involves abnormal growth and leaking of retinal blood vessels, with quick and often severe vision loss. Problems may occur in reading and driving. Blurring, distortions in colour, haziness and blind spots or scotomas develop. People can usually use their peripheral vision, however, or look around the blind spot. Age and genetics are primary contributing factors in this eye condition. Certain vitamins may help the dry form and again, laser surgery and other therapies may be used to seal leaking blood vessels. Research is underway to develop other possible treatments.

These are just a few common eye conditions. Others are discussed, to a greater or lesser degree, elsewhere in this magazine. Whatever the eye condition or situation, however, people adapt and live healthy and productive lives.

EYE DOCTOR APPOINTMENT CHECKLIST

Editor's Note: The following item is reprinted from Prism, Winter, 2001, the newsletter of Community Services for the Blind and Partially Sighted. http://www.csbps.com

One of the best ways to get the most out of any doctor's appointment is to show up prepared. Whether it's a list of questions, or a request for a referral, it's a good idea to plan ahead before visiting with your doctor to ensure you don't leave the office without all the necessary information.

The following is a checklist of questions and tips provided by the National Society to Prevent Blindness (NSBP) that can help you make the most of your next visit to the eye doctor.

When you call to make an appointment:

* Be prepared to describe any vision problems you are having.* Ask if you will be able to drive yourself home. Will the eye examination affect your vision temporarily?* Ask how much the exam will cost. Do any of your health insurance plans cover any of the cost? How is payment handled?

Before you go in for your examination:

Make a list of the following:* Signs or symptoms of eye problems you have noticed (flashes of light, difficulty seeing at night, temporary double vision, loss of vision, etc.)* Eye injuries or eye surgeries you have had (approximate dates, hospitals where treated, etc.)* Prescription and over-the-counter drugs you are taking.* Questions you have about your vision.* Your general health conditions (allergies, chronic health problems, operations, etc.)* Family history of eye problems (glaucoma, cataracts, etc.)

Take along the following:* Your glasses or contact lenses or both.* Prescription and over-the-counter drugs you are taking.* Medical or health insurance card or your membership certificate.

During the examination:* Ask questions about anything that seems unclear to you, such as the names and purposes of test you may undergo.* Ask when it's best to call the doctor with questions.* Find out when you should return for your next exam.

If the doctor finds a potential or existing vision problem:* What is the problem called? How did I get it?* What can be done about it? What are the recommended treatments? Are there any alternatives?* How likely is it that I may lose my sight?* Can other members of my family inherit the problem?

If your doctor recommends surgery:* What are the benefits and risks of the surgery?* What will my vision probably be like afterwards? Is it likely that I will need glasses and medication? * What will recuperation be like? Will I need a nursing aid?* What precautions will I probably need to observe, and for how long?

* Will surgery be necessary? Who will perform the surgery?* Would any of my health insurance plans cover any of the costs of surgery?* Where will surgery be done?* Will I need a local or general anesthetic?* How can I get a second opinion?

If your doctor finds that you have a vision problem that cannot be restored through glasses or contacts, medication or surgery:* Can I enhance the sight I have through low-vision aids?* Where would I get these devices?* Are there any support groups nearby for people with vision loss?* Are there any local vision rehabilitation agencies that can help me?

UNRESTRICTED VISION By: Lisa McGauley

Editor's Note: Lisa McGauley holds an MSW, and works at the Fraser Health Authority, Peace Arch Hospital.

It was April of 1961. I was born into a world of boundless potential. The Russians had beaten the Americans in landing the first man on the moon. Martin Luther King was in full swing with the desegregation movement . This was also the year the Berlin Wall was erected, severing east from west Germany.

I was the eldest of four children and an active grade 2'er with a voracious appetite for the written word. My parents describe me as being compelling and driven, with little need to be directed. I was driven to school, picked up and taken home for lunch. One day I ran over to my mom's regular spot and jumped into a green car, not my mother's car. My mother wasn't sitting in the driver's seat. Surely a mistake of childish excitement, but it was repeated over the next few weeks as my mom struggled to understand my behaviour.

A visit to the eye doctor made the family none the wiser as there seemed to be no measurable deficit in my vision. Grade two ended, and we headed off for summer vacation. In the car, I insisted on reading my books very close up, but my parent's insisted that I read them at an appropriate distance.

"Be firm," The eye doctor had encouraged, "as there seems to be no reason for her to read so close." Six hours later , strong-willed and determined, I had had all of my comic books and readers confiscated.

As a rule, I was a compliant, happy child so this dogged determination to read so close puzzled my parents.

The fall of grade three wasn't any better. I had even more trouble with the smaller print textbooks, and struggled excessively to distinguish the yellow chalk on the green board. The year before it had been white chalk on a blackboard, providing greater contrast. Once again, a visit to the eye doctor confirmed no measurable vision change despite the significant change in my visual functioning at school. The only explanation was a "conversion reaction". I was choosing not to see. The diagnostic equipment in 1969 could not measure subtle changes in visual acuity as they can today. Conversion reaction was a large label to put on an active and otherwise healthy eight-year-old. It suggested a loss or alteration in physical functioning from a physiological cause representative of a psychological conflict or need.

I was watched closely by my family and teachers. Reading the small print was definitely a challenge. It was hard. I had been a voracious reader and was frustrated by my inability to consume the amount of written material I desired. Gym class and social playing seemed unaffected.

At nine years old, I sat again in a darkened ophthalmologists office with my dad. I was fighting with a nurse to keep my arm stretched straight in a cold metal sleeve . She wanted to inject dye so the machine could take pictures of the back of my eye as the dye was absorbed. This part of the eye is known as the retina.

"I am sorry. It looks like your daughter has an extremely rare case of juvenile macular degeneration. For some unknown reason, her retina is dying prematurely, and there is no known treatment. I am sorry." He spoke clinically, arousing no concern in me.

The doctor and dad looked at pictures for a while, the doctor pointing out patterns and using a lot of medical jargon. "Nothing too different from other visits," I thought as I patiently sat looking at my lap.

The specialist continued, "In the best case scenario, she will retain her present vision. The disease is progressive, and in the worst case scenario, I would expect her to lose all her central vision. The peripheral vision will not be affected at all."

"And there is absolutely no treatment, nothing we can do?" my father asked.

"I am sorry. There is nothing at all."

Juvenile macular degeneration (also known as Stargardt's disease or fundus flavimaculatus) is the name given to a group of inherited retinal dystrophies that typically involve a loss of central vision over the first few decades of life, although peripheral vision usually remains. Stargardt's usually affects one in every 3000 people. Visual loss in Stargardt's disease usually occurs prior to noticeable clinical changes. Over time, however, physical changes in the retina appear, including degeneration of the central retina or macula.

By my late 30's , my world looked like a shattered mirror. Pieces of fragmented light, images and shadows. Splinters of movement and vision completely dependent on high light levels and contrast. In the dark I could not see anything. Quiet candlelight dinners in restaurants meant feeling for the chair, eating invisible food from an invisible plate and holding conversation with invisible partners. My central vision was a large, growing blind spot with ragged edges. The area was black with thousands of honeycombed, flashing, pinprick lights and floating shadows.

This was the worst case scenario the ophthalmologist had talked about.

Following the birth of my second child , my vision began to deteriorate peripherally, and by the age of 41, it became difficult to ignore the functional changes. My peripheral vision was continuing to deteriorate.

Another visit to the retinal specialist and more tests. This time, there was news, not the familiar "I am sorry, but it is a natural progression of your disease". Instead, it was reported that this degree of vision loss was definitely not juvenile macular degeneration, as thought for the past 30 years.

My diagnosis was changed to retinitis pigmentosa. Again, I was the odd man out. I had an extremely rare case of RP, where the macula dyes first, and then islands of blindness form in the periphery, grow, and eventually join the central blind spot, creating a black continent. As before, this disease was progressive and with no treatment. The prognosis, however, was much worse. I would go completely blind.

RP, a group of inherited retinal conditions characterized by degeneration, typically begins with peripheral vision loss, and gradually encroaches on central vision over decades. RP is estimated to affect at least one in every 3000 people, and is caused by mutations in any of a number of genes. Generally, RP is considered to be a "rod-cone" degeneration, where the rods begin to die off first, followed by the cones.

"Researchers are always investigating a variety of possibilities to restore vision in persons with RP and Stargardt's, including gene therapy, artificial retinas, computer chip implants and specialized low vision devices."

So Macular Degeneration or RP? Perhaps One is superimposed on the other. The reality is I am going blind. Does the name really matter anymore?

DIFFERENCES IN BRAIN USAGE AMONG BRAILLE READERS SHED LIGHT ON RELATIONSHIP BETWEEN THOUGHT, LANGUAGE

Editor's Note: This article is reprinted from Ascribe Newswire, November 30, 2001. http://www.ascribe.org

NASHVILLE--Individuals who have been blind from birth use different parts of their brain when they read braille than do those who lost their sight later in life--a difference that sheds new light on the relationship between thought and language. That is the conclusion of a study performed by Vanderbilt researchers and reported in the November issue of the scientific journal Human Brain Mapping.

The research is one of the latest efforts to understand the structure of the human brain and how it responds to injury. Twenty years ago most neuroscientists thought that the adult human brain had a very limited ability to reorganize itself following major injuries to the brain itself or to the peripheral nervous system that provides it with sensory information. In recent years, however, researchers have discovered that mature brains, as well as developing brains, display more flexibility than they had thought.

One way to study the phenomena associated with the brain's plasticity--its ability to adapt to changes--is to examine differences in brain organization in people who have lost their sight at an early age. In sighted individuals, nearly one-third of the brain is devoted to processing visual information. Cutting Off all sensory input to such a large region of the cortex creates a situation Where recruitment of some of the unused areas by the other senses seems likely. So scientists have looked for, and found, evidence that some of the areas of the idle visual cortex can be recruited to process other types of sensory information.

In 1996, a Japanese scientist, N. Sadato, working at the National Institutes of Health, reported that positron emission tomography [PET] scans averaged from the brains of several blind subjects displayed activity in parts of the visual cortex while reading braille. It was unclear, however, to what extend this activity might represent activation of visual memories that individuals had acquired before they were blind, and how much represented an actual repurposing of visual areas of the brain to handle touch information.

To help answer this question, Psychology Professor Ford F. Ebner and Research Assistant Professor of Psychology Peter Melzer--with technical assistance from members of Vanderbilt's radiology department-turned to functional Magnetic Resonance Imaging [fMRI], a technique that can detect active areas of brain activity by measuring activity-induced changes in blood flow.

In order to distinguish between activation of visual memories and processing of touch information, the investigators recruited a group of five men and five women, half of whom had been blind since birth and half of whom lost their sight early in life. The researchers reasoned that those who had been blind since birth would not have had an opportunity to store up visual memories, so all the brain activity that they exhibited in areas associated with the visual system would be areas that had been recruited to process sensory touch information.

The subjects were asked to read a series of single words in braille. Ten percent of the words were nouns that referred to abstract concepts, while 90 percent were nouns that referred to objects associated with visual images.

FMRI takes snapshots of brain activity much more quickly than PET scans, which must average brain activity over several minutes and pool the data from several individuals. By asking their subjects to alternate reading and resting, the researchers were not only able to measure which areas become active but also when the activation occurred relative to the initial stimuli. This allowed them to differentiate between areas involved in the response to the touch information and those that were not activated by act of reading but by some type of higher-level processing.

Surprisingly, the researchers did not find major differences in the magnitude and expanse of activation in the visual cortex between the two groups. But they did find striking differences in the activation behaviour, the relationship between the timing of the activation of specific visual areas and the task.

In the blind-from-birth group, activation of a region in the posterior temporal lobe that is involved in phonological word processing--keeping track of the sound patterns and rules of pronunciation in speech- was more strongly correlated with reading than it was in the group with some visual experience. Conversely, an adjacent region associated with semantic word processing--determining the meaning of similarly sounding words like flour and flower--had the stronger correlation with the task in the group with some visual experience than it did in the group that was blind from birth.

The researchers hypothesize that even a short period of early visual experience may make it harder to recruit certain areas in the visual cortex than is the case for those who are blind from birth. They propose that this may be one reason why those who are blind from birth tend to be much better braille readers than those who loose their sight later in life.

The study also provides new support for the proposition that a kind of mental imagery exists, which is independent of the five senses. The subjects who were blind from birth reported having non-visual associations with some of the words.

The areas of the brain that are involved in high-level processing of the words in the study strongly suggest that this non-visual imagery is closely related to language. So there is a good chance that further studies may shed new light on an outstanding issue in philosophy and psychology: the relationship between language and thought.

Also contributing to the study were Assistant Professor Victoria L. Morgan, Associate Professor David R. Pickens and Professor Ronald R. Price from the department of radiology and radiological services, and Robert S. Wall, assistant professor of hearing and speech at Vanderbilt's Bill Wilkerson Centre.

Funding was provided by the National Institute of Neurological Disorders and Stroke, the John F. Kennedy Centre for Research in Human Development at Vanderbilt University, the Vanderbilt Vision Research Centre, the Hobbs Foundation and Dr. and Mrs. Irwin Eskind.

For more news about Vanderbilt, visit the News Service homepage at http://www.vanderbilt.edu/news

CONTACT: David F. Salisbury, 615-343-6803 David.Salisbury@Vanderbilt.Edu

EYE CELLS MAY HELP REGULATE BODY'S CLOCK By: Sandra Blakeslee

(Reprinted from The New York Times, February 8, 2002)

Editor's Note: This article is reprinted from the Braille Forum, Volume XL, No. 11, May 2002. http://www.acb.org

With the help of three kinds of blind mice and some ugly frogs, scientists have discovered a new class of light-sensing cells in the retina. The cells, which are different from the rods and cones that enable vision, appear to reset the body's master biological clock each morning and night. The researchers said that while the finding was made in mice, it was certain to hold true for humans, with implications for possible treatment of sleep disorders, jet lag, depression and other maladies involving the body's internal clock.

"We thought we knew everything about the retina," said Dr. Michael Menaker, a neuroscientist at the University of Virginia and an expert on biological clocks, who is familiar with the research. "Now we find we have two separate systems in the eye, one for vision and one for setting the clock. We have a new way of thinking about how light is interpreted by the nervous system."

Dr. Ignacio Provencio, an assistant professor of neuroscience at the Uniformed Services University in Bethesda, Md., whose work on frogs helped lead to the discovery, called it "heretical." Not every day, Dr. Provencio said, do scientists find a new body function.

The cells were discovered by Dr. David Berson, an associate professor of neuroscience at Brown University, and are described in today's issue of the journal Science.

Dr. Berson said a deeper understanding of the new photoreceptors might lead to novel treatments for disturbances of the body's internal clock. It may turn out that people who have defects in the newly described system could suffer from "time blindness," similar to colour blindness.

The traditional view of how light is handled in the eye has held for more than 100 years, Dr. Berson said. It states that the retina has only two kinds of light-sensitive cells: rods and cones. Together they carry out two jobs. One is to capture light and send it to the brain, where images are formed in visual processing. The second is to send light-induced signals to a tiny region in the brain that sets the body's biological clock.

This region, called the suprachiasmatic nucleus or SCN, is just above the optic nerve on both sides of the brain. A pinhead speck of tissue, the SCN measures the passage of every 24 hours by making and consuming proteins in precisely timed fashion --letting the body know when to wake up and when to go to sleep. This circadian clock works independently to measure time, Dr. Berson said, though it must be resynchronized every day as light levels change with the Earth's movement around the sun. But experiments over the last five years --Dr. Berson calls them "head scratchers" --raised questions about the role that rods and cones had long been assumed to play in setting the biological clock.

Three kinds of blind mice posed the problem, said Dr. Russell Foster, a neuroscientist at Imperial College in London. The first was a mutant mouse that lacked all its rods and 95 percent of its cones. "These animals are blind, yet they are as good at responding to light in setting their daily rhythms as their sighted litter mates," Dr. Foster said. Perhaps the biological clock could be reset with just a few cones.

To find out, Dr. Foster and his colleagues genetically engineered a coneless, rodless mouse. These completely blind animals aligned their clocks to natural light and dark cycles just as normal mice did. In a third experiment, Dr. Foster removed the eyes from mice. They could no longer set their biological clocks in response to light.

Meanwhile, Dr. Charles Czeisler, a physician at Harvard Medical School, found similar patterns in blind people. Some, without rods and cones, could set their biological clocks in response to daily changes in light levels. Others could not.

Then Dr. Provencio found a head scratcher --a light- sensitive molecule in the skin cells of the African clawed frog that changes colour when the light changes. The molecule, melanopsin, is in the family of proteins that help convert photons of light into electrical and chemical signals used by the nervous system. Rods and cones use rhodopsin, a mammalian protein in the same family. A search in genetic databases turned up a surprise. Melanopsin is found in a small number of ganglion cells in the retinas of mice, monkeys and humans. Moreover, these ganglion cells project to the SCN, the region that sets the body's clock.

"When I heard this, my eyes got huge," Dr. Berson said. To find out whether the ganglion cells reacted to light, he isolated them so they had no contact with rods or cones and monitored their electrical activity. "I'll never forget the first time we did the experiment," Dr. Berson said. "We gathered around the rig. The cell was sitting in darkness. We hit it with light. Nothing happened for almost a second. Then all of a sudden it began to spike. We went crazy. The missing photoreceptors in the retina and the cells that talk to the clock are one and the same."

COLOUR PERCEPTION IN THE BRAIN UNLOCKED

Editor's Note: This article is reprinted with permission of ABC Online, January 31, 2003. Visit the Lab, ABC Science Online at http://www.abc.net.au/science/news/stories/s773718.htm

Scientists have discovered how the brain perceives colour in a finding that could one day help people who have lost their sight.

By studying macaque monkeys, researchers at the University of Texas-Houston Medical School have shown how modules of cells called "thin stripes" in a particular region of the brain are arranged and perceive colours.

"This finding provides the first physiological basis for the perception of the full gamut of colour," said Daniel Felleman, a professor of neurobiology and anatomy.

Felleman and his team mapped changes in blood flow along the stripes in the brains of the monkeys while showing them a series of colour. Their findings are reported in the science journal Nature.

While looking at different colours, the blood flow peaks in the brains of the monkeys shifted systematically in specific portions of the stripes. An area with a peak flow for red was next to the portion that peaked for orange, then yellow, etc.

"We believe that the brain uses a spatial code for colour such that the location of the peak activity within these colour maps determines the colour that you see," Felleman added in a statement.

Although the research was done in macaques, the scientists believe mechanisms in the human brain would work in a similar way, and that the knowledge could be used to develop devices to help the blind.

"You always hope that knowing the basic mechanisms of brain coding and perceptual processing would allow you to some day have a prosthetic aid that would activate the brain in the same way that the eye normally does," Felleman added.

RECOVERING VISION NO OVERNIGHT BLESSING By: Jay Ingram

Editor's Note: The following article is reprinted from the Hamilton Spectator, August 29, 2003.

One of the most fascinating things about rare medical conditions is that, rare as they are, there are usually one or two similar cases that have popped up in previous decades or even centuries. Each new such case allows the experts of the time to bring the latest thinking and technology to bear on them, creating new insights, but also usually confirming the wisdom of those who came before.

One of the best examples is of those rare individuals who have regained their sight after being blind, either from birth or from early childhood. A new case like this has just been reported, and it sheds dramatic light on the surprisingly difficult adjustments such patients have to make.

I don't use the phrase "sheds light" lightly; it is a testimony to the fact that we are visual creatures, so much so that we tend to assume that vision follows automatically from a pair of eyes that work. But these cases of the recovery of sight have shown just how wrong that is.

The most celebrated case dates back to 1728. Surgeon William Cheselden removed opaque cataracts from the eyes of a teenage boy. It might come as a surprise to know that the boy was not instantly transformed into a normal seeing person. For many months he had great difficulty realizing that the object he just touched was the same as the object he was now looking at.

For instance, confounded by dog versus cat, he would pick up the cat, feel it, then set it down and stare at it, reportedly saying at one point: "So, puss, I shall know you another time." He was perplexed by the fact that those things he liked best, including people, were not the most beautiful things that he saw. And solid objects were a huge challenge: it took him a long time to realize that the reflecting surfaces of objects, and their shadows, weren't simply surfaces painted differently. Then, when he had finally absorbed that information, he was again troubled by pictures of those objects, because he expected them to be three-dimensional as well, not flat.

This case, and the handful since, have generated more theory than anything else--there's been little of the scientist's preferred currency, objective data.

That is, until now. In last week's issue of the journal Nature Neuroscience, a team in California reported a new case of restored vision, the subject "MM" who had lost his sight at three-and-a-half and had it restored a couple of years ago at age 43. Although he quickly made progress in some areas (for instance, he had no trouble identifying colours), he had problems with other visual challenges that most of us would find routine.

He couldn't identify a line drawing of a cube as a representation of three dimensions; transparency threw him completely, and he had great difficulty telling whether a face was female or male, or whether the face was angry, happy or sad.

That last finding was explored further by imaging MM's brain. The MRI showed that the places in the brain that are usually involved in the recognition and interpretation of faces were silent in MM's brain. His brain did react to faces, but in areas whose activities are usually confined to conventional visual processing. In other words, he was "seeing" faces as objects to be sorted out and identified, not as familiar and significant things which require a higher level of analysis.

The explanation for both his visual abilities and disabilities seems to be that those visual perceptions that are wired into the brain early --like colour and movement --were preserved, but those which would have developed later, like analysis of depth (had he retained his vision in childhood), had been lost.

MM seems to be progressing steadily. He had been an accomplished blind skier, but when he first regained his vision, the sight of hurtling down the ski hill was so frightening that he reverted to closing his eyes. He now skis open-eyed--except on the most challenging slopes.

MM's story is like others from the past: recovering vision is never an overnight blessing, and is never 100 percent positive. As strange as it might seem.

Jay Ingram hosts the Daily Planet program on the Discovery Network.

BLIND WOMEN AT LOWER BREAST CANCER RISK

Editor's Note: This article is reprinted from The Braille Forum, Volume XXXIX, No. 12, June 2001. http://www.acb.org

(It is important to point out that these findings apply primarily to totally blind women. Please do not interpret the reduction in risk, reported below, to mean that self-exams for abnormalities and mammography are not still important.)

NEW YORK (Reuters Health) --High blood levels of the hormone melatonin may explain why blind women have significantly lowered risks for breast cancer compared with sighted women, researchers report.

Melatonin, which is secreted by the pineal gland in the brain and plays an important role in the body's sleep cycle, is thought to influence the secretion of estrogen, which in turn influences breast cancer risk. "Our findings give support to the 'melatonin hypothesis,'" write Dr. J. Kliukiene and colleagues, of the Cancer Registry of Norway in Oslo.

Reporting in a recent issue of the British Journal of Cancer, the researchers used Norwegian government health data to track breast cancer in over 15,000 visually impaired women, nearly 400 of whom were totally blind.

The investigators found that totally blind women had a 36 percent lower risk of breast cancer compared with sighted women. Women who became blind relatively early in life (before age 65) appeared to be especially protected against breast cancer, with incidence rates 49 percent below those of sighted women.

Only total blindness --not visual impairment --seemed to protect against breast cancer. According to the authors, this supports the theory that increased nighttime exposure to artificial light reduces melatonin levels, altering estrogen secretion rates and upping risks for breast cancer.

Blind women are by definition unreceptive to light, however, and may maintain high melatonin production at night regardless of external light conditions. Kliukiene's team believes this may be the mechanism whereby blind women are protected from breast cancer.

THE 12-STEP INTERNET RECOVERY PROGRAM

Editor’s Note: This item is reprinted from the Braille Forum, Volume XXXIX, No. 7, January 2001.

1. I will have a cup of coffee in the morning and read my newspaper like I used to, before the internet.

2. I will eat breakfast with a knife and fork and not with one hand typing.

3. I will get dressed before noon.

4. I will make an attempt to clean the house, wash clothes, and plan dinner before turning on my computer.

5. I will sit down and write a letter to those unfortunate few friends and family that are internet-deprived.

6. I will call someone on the phone who I cannot contact via e-mail.

7. I will read a book … if I still remember how. (Let's see now. Dots 1, 3, 5 … Oh, that's an "o”!)

8. I will listen to those around me and try to pay attention to their needs and stop telling them to turn the TV down so I can hear what my screen-reader is saying.

9. I will not be tempted during TV commercials to check for e-mail.

10. I will try and get out of the house at least once a week, whether it's necessary or not.

11. I will remember that my bank is not forgiving if I forget to balance my checkbook because I was too busy on the internet.

12. Last, but not least, I will remember that I must go to bed sometime, and the internet will always be there tomorrow!

REJECTION MASSIVELY REDUCES IQBy: Emma Young, Blackpool

Editor’s Note: This article is reprinted from New Scientist, March 15, 2002. http://www.newscientist.com

Rejection can dramatically reduce a person's IQ and their ability to reason analytically, while increasing their aggression, according to new research.

"It's been known for a long time that rejected kids tend to be more violent and aggressive," says Roy Baumeister of the Case Western Reserve University in Ohio, who led the work. "But we've found that randomly assigning students to rejection experiences can lower their IQ scores and make them aggressive."

Baumeister's team used two separate procedures to investigate the effects of rejection. In the first, a group of strangers met, got to know each other, and then separated. Each individual was asked to list which two other

people they would like to work with on a task. They were then told they had been chosen by none or all of the others.

In the second, people taking a personality test were given false feedback, telling them they would end up alone in life or surrounded by friends and family.

Aggression scores increased in the rejected groups. But the IQ scores also immediately dropped by about 25 percent, and their analytical reasoning scores dropped by 30 percent.

"These are very big effects--the biggest I've got in 25 years of research," says Baumeister. "This tells us a lot about human nature. People really seem designed to get along with others, and when you're excluded, this has significant effects."

Baumeister thinks rejection interferes with a person's self-control. "To live in society, people have to have an inner mechanism that regulates their behaviour. Rejection defeats the purpose of this, and people become impulsive and self-destructive. You have to use self-control to analyze a problem in an IQ test, for example--and instead, you behave impulsively."

Baumeister presented his results at the annual conference of the British Psychological Society in Blackpool, Lancashire, UK.

10 TIPS FOR MENTAL HEALTH

Editor's Note: This item is reprinted from the Canadian Mental Health Association's website. http://www.cmha.ca

1. Build a healthy self-esteem2. Receive as well as give3. Create positive parenting and family relationships4. Make friends who count5. Figure out your priorities6. Get involved7. Learn to manage stress effectively8. Cope with changes that affect you9. Deal with your emotions10. Have a spirituality to call your own

FIGHTING MENTAL ILLNESS

Editor's Note: This editorial is reprinted from the Toronto Star, September 5, 2003.

For too long, Canadians with mental illness have quietly suffered--shamed into silence by the stigma associated with their condition.

A new Statistics Canada survey shows almost half of those afflicted have never sought care, even though medications have evolved to a point where many could now be helped, and even cured.

Instead, lives are lost to suicide. And thousands more lives are mangled by what some call the "the black dogs" of depression, and by other problems.

The latest findings are sobering: More than 2.6 million Canadians suffer from a mental illness, including drug or alcohol dependence. Mood disorders, including depression, are the most common affliction, burdening 1.2 million people.

Teenagers and young adults are hit hardest, but only one of every four facing a mental problem turned to a doctor, religious leader or support group for help.

"That's a crisis in anybody's terms," says Phil Upshall, head of the Canadian Alliance on Mental Illness and Mental Health. "You might even want to call it a scandal."

For the sake of millions of sufferers, there must be an end to society's stigma, and to the self-imposed neglect of those tormented by mental illness.

It would certainly help to have more money allocated to this area, especially for research programs, more public awareness, and improved access to treatment.

But health care budgets are sorely stretched, and money tends to flow toward those patient groups that are the most skilled at lobbying and presenting their case to the public.

No wonder the mentally ill have been shortchanged.

Reform can start even before additional health care dollars are pried from closed-fisted politicians and bureaucrats.

All Canadians can help--and it needn't cost a penny.

Instead, it will take understanding, acceptance, and a willingness to look past the stigma surrounding mental illness to see the people trapped within it.

Quite simply, our attitudes need to change--the lives of our loved ones, our friends, our neighbours and our co-workers depend on it.

DEPRESSION AND DISABILITY: WHAT YOU SHOULD KNOW

Editor's Note: This item is reprinted with permission from the North Carolina Office on Disability and Health's website. http://www.fpg.unc.edu

Depression is not just feeling sad, blue or discouraged; and it is much more than the normal downs that can be a part of everyday living. It is an illness that affects the whole person--their thoughts, feelings, behaviour and physical health.

When people are depressed, they have symptoms nearly all day, everyday, that last at least two weeks. It is when many of these symptoms occur together, cause difficulties in day-to-day functioning, and last longer than a few weeks that they may be signs of a depressive illness.

Depression affects more than 17 million Americans each year. Many are people with disabilities. Not everyone with a disability becomes depressed, and those who do become depressed may not be depressed because of their disability. However, people with disabilities face unique challenges and stresses which place them at increased risk for depression.

Studies have shown that symptoms of depression may be 2 to 10 times more common in individuals with disabilities or chronic illnesses, and depression is one of the most common secondary conditions associated with disability and chronic illness. But the good news is that effective treatments for depression are available.

Symptoms of Depression * Feelings of sadness, anxiety, hopelessness, or emptiness * Loss of interest in activities that used to be enjoyable * Sleep problems, such as sleeping too much, having trouble falling or staying asleep, or waking very early in the morning * Changes in appetite with weight loss or weight gain * Feelings of restlessness, increased irritability, or frustration * Decreased energy or becoming tired after normal activities * Difficulties with memory, concentration, decision making, or mental slowing * Feelings of excessive guilt, worthlessness, or helplessness * Decreased interest in interacting with others * Crying more often than usual * Recurring thoughts of death or dying * Thoughts of suicide or suicide attempts

Treating Depression There are many effective treatments available. With appropriate treatment, the majority of people with depression can improve significantly, often within a matter of weeks. Counseling or talk therapy, medications, or a combination of the two are the most common and effective treatments.

If you think that you or someone you care about may be depressed, get help. Have yourself evaluated for depression so that you can get treatment if you need it. People and places you can contact for help include your family doctor and your local hospital, mental health centre, or public health clinic.

When Blue is Your Primary Colour Everyone has days when they'd rather stay at home than face the world. While finding strategies that work best for you may be trial and error, there are tried and true actions you can do to help feel less alone, discouraged or blue.

The following are things that will not only help you feel better on a bad day, but also will help reduce your risk for developing a serious depression. * Talk to friends or family about what you are feeling. Feeling sad or disappointed is nothing to be ashamed of, and sometimes just letting people know that you are feeling down can help you begin to feel better. If you can't get out of the house to see friends and family, write a letter or talk with them on the telephone. * Get in touch with other people with disabilities. As much as they may try, non-disabled people can't always understand what it's like to live with a disability. If you are feeling alone or misunderstood, talking with someone who has a similar disability can make all the difference in the world. Your health care provider may be able to give you information about local support groups or provide the names of other individuals who have had similar experiences. Many public libraries have computers that can be used to search the internet for groups and agencies that provide education and support for individuals with disabilities. * Become an advocate for yourself and others. If you think that environmental and social barriers are contributing to your feeling discouraged, down, angry, or bad about yourself, find out what you can do to make a difference. Become involved in local advocacy groups. Talk to store managers who make aisles too

narrow for wheelchairs. Write your congressman about the problems with health care and insurance often faced by people with disabling conditions. * Volunteer. Volunteering can be a meaningful and rewarding way to spend your time. It can get you out of the house and provide opportunities for interacting with others. If you can't get out of the house, make phone calls, write letters, or do other kinds of volunteer activities from your home. Spending time and energy helping others can help take your mind off your own troubles and make you feel appreciated by others. * Exercise. Physical activity can be one of the most effective ways to combat depression. Even if you have significant physical limitations, increasing your level of physical activity, even just a little bit, will help improve your mood. * Manage Stress. Although stress doesn't always cause depression, stress tends to make depression symptoms worse. Finding stress management techniques that work for you--relaxing, meditating, praying, watching funny movies, doing crafts, keeping a journal, or any other activities that make you feel less stressed--can make you less vulnerable to depression.

Mental Health Resources* Depression and Disability: A Practical Guide by Dr. Karla Thompson, NC Office on Disability & Health, UNC-CH, CB# 8185, Chapel Hill, NC 27599-8185 For a free copy, call 919-966-2932 or email: odhpubs@mail.fpg.unc.edu Copies may be downloaded from the NCODH website in pdf or html formats: www.fpg.unc.edu/~ncodh * National Depressive and Manic Depressive Association, 730 N. Franklin St., Suite 501, Chicago, IL 60610, 800-826-3632, www.ndmda.org * National Foundation for Depressive Illness, Inc., P.O. Box 2257, New York, NY 10116-2257, 800-248-4344, www.depression.org/ * National Mental Health Association Centre, 1021 Prince St., Alexandria, VA 23314-2971 800-969-6642, www.nmha.org/

FROM HERE TO THERE: BUT HOW?By: Sara Bennett

As my parents drove me to the hospital for eye tests, I said, “I wish I were dead.” Not that I really meant it, but I was leaving all that was familiar--my family, friends and school--to be told what was wrong with me. I already knew. I didn’t need some stranger to tell me about my vision. To this quiet, ten-year-old, middle child of three heading off into the unknown, it seemed like the end of the world. Where was I going? When and how would I feel alive again? Hence began my journey from life to death, and back to life again.

It had all started about a year earlier with a lazy right eye--one that drooped, turned and blurred. My left eye was fine, and I relied on it for my vision. My left eye had done the seeing--until now.

In recent months, my vision had begun to deteriorate further. Standing at the back of my classroom sharpening my pencil, I saw the blackboard fade in and out of focus. Colouring, I noticed I did not stay within the lines. My handwriting wandered above or below the lines in my notebook. Letters and words bobbed, weaved and merged when I read. Worst of all, television and movie screen images sometimes doubled. Sitting in a local cinema at age ten, I watched clear images of Han Solo and Chewbacca repeatedly blur into writhing blobs, and then sharply crystallize again, all within a matter of seconds. It struck me that the Empire Strikes Back was somewhat less than striking--as was more and more of what I was seeing.

I had noticed the gradual and subtle changes, and I had subtly tried to hide them. I would act nonchalant when answering a blackboard question incorrectly, pretend I hadn’t heard when asked to read aloud in class, and slip out to the washroom just as my turn approached to perform some task that required effective vision.

It was almost like a game. Now, however, the game was up. My parents had noticed my face-in-the-book reading and wandering writing. So here I was, on my way to hospital. It was about midway through September, and I had just started grade five.

About two months after entering hospital, I was released. It was just before Christmas, and I was blind.

I didn’t feel much of anything at the time. I had had a benign brain tumour, and I had contracted meningitis while in hospital. As a result, my basic functioning, memory and level of consciousness were affected. Although I re-learned how to sit, stand, walk, talk, eat, etc., it was like operating on automatic pilot--moving from day to day, never considering or being confronted by the reality of my blindness. I connected no particular value to it--negative or positive. It was only when I returned to school over a year later that the implications began to dawn on me.

How had “the blind student” and “the blind girl” replaced my name? Why were teachers seemingly and suddenly uncertain of my academic capabilities? What was this unfamiliar, intangible distance between myself and old friends? Why did people either focus entirely on my blindness, or avoid it altogether? Why did I vacillate between thinking I could do anything, and thinking I could do nothing? I had lost my footing, and I needed to regain it. But how?

Clearly, things were different. Expectations had changed. Funny, I thought, because I don’t feel much different. Had I changed, or others? Whose perceptions had altered? Who did I want to be, or should I be? And, in the end, who makes those decisions? I needed to find the answers.

I started with the practical, learning relevant skills to living independently as someone who is blind. Once I knew braille, I could read textbooks, enjoy Nancy Drew mysteries, and write notes. Once I had some orientation and mobility skills, I could walk with a sighted guide or white cane at school. I learned to rely on my memory and other senses in order to determine my spatial position, and to identify personal and household items such as hygiene products, record albums and food packages. All of these skills I learned quickly and effectively.

But well-being involves more than just having the requisite skills. I often felt self-conscious and that everyone was watching me. Often, they were! Soon, my embarrassment over popping on a slate and stylus at my desk, loudly pounding on a brailler in class, having to answer questions about my vision loss, or tapping down the hall with my white cane became generalized feelings of shame about being blind. I never heard the word “blind” without cringing inwardly, and I never, ever, said that word myself! This attitude was not conducive to good health.

The first step in dealing with a problem is admitting there is one. I confided in page after page of Braille paper in the form of poems. From fear, anger, envy and disappointment to loneliness, I poured out my wretchedness into words only I could read. Years later, when I read over these poems, I saw someone who felt trapped by her blindness--the things she could no longer do, the things she feared to do, and the things that others could not conceive of her doing. For years, I lived in the past, longing for the days of old; feared the future, dreading what new embarrassment, pain or disappointment awaited me; and avoided the present, not wanting to deal with my anxieties or face the pity, ignorance or idle curiosity of others. I was slowly sinking into depression, but I didn’t know it.

The next major step I took was attending the school for the blind in Brantford, Ontario. In hindsight, this was one of the best things that could have happened. Here, I was on an equal footing with my peers. I was free to be myself, to excel or fail regardless of my vision loss. Friendships formed based on common age and mutual interests. Just as it should be.

At the W. Ross Macdonald School, I was able to discover my abilities, recognize my limitations, and learn what is possible for people who are blind or vision-impaired. I had come to identify with a peer group. By the time I graduated, several lifelong friendships were in place. Personally and socially, I was on my way.

Midway through my high school career, health problems and depression re-asserted themselves. Doctors tested, diagnosed and treated a variety of physical conditions, some of which I still have. My depression, however, remained undiagnosed.

As with my decreasing vision years earlier, I had become adept at hiding the truth. Though I sometimes cried uncontrollably, isolated myself and dabbled in addictive behaviours, I smiled and acted cheerful, for the most part, when around others. But I knew that I was feeling sad more often. A psychologist enlightened me with “Don’t focus on yourself. Reach out, and help others.” But how? I couldn’t see beyond my own problems.

During my senior year, my life took a turn. I became a Christian. In the depths of despair--feeling sad, angry, lonely, helpless and afraid--and with unpredictable health, I responded to God’s offer of love and forgiveness. I decided to follow Christ. I haven’t been the same since.

Post-secondary education and volunteer work were the forums in which I continued my identity development and adjustment. I began volunteering at a distressline, and subsequently took positions as a braille tutor, speaker and transportation coordinator. In these positions, I learned new skills. I realized that I could make a difference.

At school, I learned that I could compete with sighted peers. I learned how to learn and how to motivate myself. In both arenas, I saw the need, and took up the challenge, of self-advocacy and public education. Expressing my needs to others in terms of accommodations, setting personal boundaries in relationships, and informing others (and myself) about blindness issues are now ongoing activities--activities I once shied away from and considered beyond my comfort and competence levels. Another few steps taken.

Throughout my post-secondary education, I experienced periods of depression. On several occasions, I considered quitting school altogether. The bouts were getting longer and deeper, moving from lasting a few days here and there to months, and requiring more effort to shake off. And I was beginning to think about death. It was time to take my depression seriously! Up to this point, my attempts at getting help had been haphazard and not altogether honest. I would no longer consider it weak to ask for help or fear what others thought. Such attitudes were costing me! Another step.

My family doctor referred me to a psychologist who specialized in chronic illness. Perfect! She worked in a hospital, and the government would fund my visits. Double perfect! I quickly learned that much of my problem was the way I thought about things. Negative. Unrealistic. Not based on fact. Before long, I was feeling better, and I returned to university in the fall.

Things went well until, sometime after graduation, my mother had a stroke, and I hit a brick wall. Sessions now were more frequent and probed deeper. By the final session, I had learned a great deal about myself.

First, I was depressed. Although I already knew that, a clinical diagnosis validated my experience.

Second, I had unconsciously been living, to a great extent, according to others’ expectations. I was frustrated, consequently, and never really knew where I stood. It would be in my best interest to establish my own expectations for myself, and set my own goals. These should be realistic, yet challenging enough to motivate and reward me. By suggesting I set an “achievement” and “pleasure” goal each day, my psychologist encouraged me to take control. And it helped! A further step.

I was learning that the super “adjusted” place or person doesn’t exist. Despite the view, held previously by myself, that one can reach that optimal level of adjustment in a given area, it is false. Experts posit that one cycles through psychological or emotional stages, and the process has no end-point. When I learned this truth in a college class, it provided another validation of my experience. One more step.

But where do these steps lead? If that destination, the “adjusted” place or person, only exists in theory as some ideal, what is this journey on which I travel? Perhaps it’s one merely of personal growth.

I learned the importance of a support network. My psychologist pointed out that we, human beings, are social creatures and need each other. I intuitively already knew that also, but I had tried to distance myself nonetheless from others. What I needed (and still need) was a network of people to which I could turn in time of need and, likewise, to which I could be a support. Whether it’s two or twelve people, this network is an integral part of well-being for everyone. It often takes time and much trial-and-error to develop. Now, my support network consists of a handful of people--family members and friends--people I trust . One further step.

Finally, the psychologist remarked--to my horror, utter resentment and ultimate relief--that I was not taking full responsibility for my life. Well! After the alarm bells died down, the floor ceased shaking, and my ears and nose stopped expelling smoke, I thanked her for her insightful comment. Initially, I had thought, “How dare she! Doesn’t she know what it’s like to be blind? If she’d been through what I’ve been through … If she’d known the people I’ve known …” But there’s no point in going to counseling to hear what you want to hear and, when I got right down to the nitty gritty of the matter, she was right! My circumstances weren’t responsible for my current situation but, rather, the ways in which I chose to respond to them. The real revelation was that I had a choice in how I respond. And I could choose to take control. That was a leap!

Today, I’m miles ahead of where I was some twenty-some years ago. I’m still blind, have unpredictable health, and still feel sad sometimes, but now I’m further along the road to well-being. Although I can’t control some situations, I choose how I respond to circumstances. As a result, I feel and enjoy an increased sense of well-being. My journey might not have a destination (that is, that “adjustment” target), but my journey, and what I learned along the way, has served to bring me back to life--physically, emotionally, psychologically and spiritually. What God has started in me, He will finish.

THE ADJUSTMENT PROCESSBy: Lisa Bentz-McGauley

Adjustment: What does it mean? The Oxford dictionary defines adjustment as: 1. To adapt or harmonize or 2. to regulate. Tabor’s medical dictionary defines the word as: 1. Adaptation to a different environment or 2. A change made to improve the function or condition.

Adjustment models of counselling typically look at the process in five stages: 1. Shock; 2. Denial; 3. Anger; 4. Acceptance ; 5. Reintegration.

These steps have been referred to by many names, and more recently include this fifth stage of reintegration. Older models focus on Acceptance as the goal. I have walked with many patients and their families through this process.

Acceptance is a psychological goal. How to integrate new circumstances into life is a new challenge that requires learning and reflection. Life will continue to throw us curveballs, but we are responsible for how we choose to react to change.

I encourage patients and families to complete inventories of available strengths and resources, both internally and externally. Identify areas or gaps, and build on these areas. If you are solely dependent on family for social functioning, this might be a good time to take the risk of meeting new friends, joining a community group or activity centre. If you are strengthened primarily by your work and vocational pursuits, now might be a good time to regroup with your family and friends or develop some leisure activities.

I use a series of concentric circles for people to visually be able to assess their social supports. These supports are fluid and can move back and forth between the rings. You will be in the centre of your ring. An example of a fluid support in your life might be your doctor. My work in acute care sees this all the time. In times of wellness, the doctor often resides in one of the outer rings as an available resource, but in times of acute need, the doctor often moves towards the centre with you.

The other area I focus on is realistic goal setting. If you are blind or severely vision-impaired, and your goal is to read a printed book, you might have to seriously reconsider your intent until you master alternative techniques of blindness. If you have just been discharged from hospital, a realistic goal for the first day might be to get up, shower and eat breakfast.

We are faced with setting goals and making choices daily. I recommend breaking goals into manageable pieces. If you are a student writing a term paper, and your goal is to complete it by the end of term, I would suggest an outline be drawn up with “mini sub-goals” along the way. Within the next two weeks, you could research your topic, the following week develop a structure, etc. By breaking goals into manageable pieces and reviewing your resources along the way, you are less likely to become overwhelmed and paralyzed by seemingly daunting tasks.

I work with patients and families who are coping with anxiety, bipolar disease, Psychosis, schizophrenia and depression. These patients are challenged to adapt to new and unexpected limitations. I find these techniques of resource inventories and realistic goal setting very effective tools.

Adjustment is a process we experience daily. We do not graduate from it. It is not a goal we achieve and then rest on our laurels. Adjustment, realistic goal setting and assessing internal and external resources are integral parts of day-to-day lives. We can not control what life presents to us or takes away. We can exercise control through the choices we make everyday. We can choose how we react to changing life circumstances.

ONE IN FOUR ON DISABILITY HAS MENTAL DISORDERBy: Eric Beauchesne

Editor’s Note: This article is reprinted, with permission of CanWest News, from the Ottawa Citizen, November 19, 2002.

Mental disorders have become a leading cause of disability among workers, according to a federal government study.

They account for nearly one in four persons now receiving a public disability pension, double the proportion only 10 years ago. And among younger workers, mental disorders are now the predominant cause of disability, says the study by the Office of the Chief Actuary.

Mental disorders accounted for 23 percent of those on CPP disability pensions in 2000, up from 12 percent in 1990 and 11 percent in 1980, it noted.

Mental disorders are a more common disability for women, accounting for 25 percent of women on disability, compared with 20 percent of men.

The report does not attempt to explain the surge in mental disorders, although there have been numerous studies on the increasing stress among workers, particularly women, who are forced to juggle work and family responsibilities.

While mental disorders are the leading cause of new disability cases, it remains second to musculoskeletal disorders among existing disability beneficiaries, accounting for 29 percent of all cases.

The increase in the proportion of workers who have been disabled by a mental disorder contrasts with a decline since the mid-1990s in the proportion of CPP benefits that are going to disabled workers.

In 2001, the $2.6 billion paid in CPP disability benefits to 279,000 disabled workers accounted for 13 percent of all CPP benefit payments, down from 17 percent in 1994.

"In comparison to other benefits paid by the CPP, the disability expenditures have levelled off in recent years," the report said.

It credited in part money-saving reforms that have made it more difficult to qualify for, and then to keep, benefits, and measures to get people back to work.

FEELING FINE? YOU OBVIOUSLY NEED MEDICATIONBy: Linwood Barclay Editor's Note: The following article is reprinted from the Toronto Star, September 6, 2003, courtesy of Torstar Syndication Services.

The makers of Normallix would like you to take a moment and do the following quiz. It could change your life:

1. Do you find that some days you want to lie in bed, and other days you get up feeling refreshed and can't wait to start the day? 2. Have you ever, after working a gruelling eight or nine hours at your place of employment, come home feeling exhausted? 3. Do you find that you go to the bathroom, and then, several hours later, have to go again? 4. When you are lost in the middle of the woods and are being chased by a large bear, do you feel overwhelmed by anxiety? 5. Do you ever keep reading the newspaper, even when your spouse is talking to you, and then have to ask: "What did you say?"

If you answered yes to any of these questions, maybe you need to speak to your doctor about Normallix, the new prescription medication for people who don't have anything particularly wrong with them.

Do you see your friends taking medication every day to combat heartburn? Are more and more of your adult friends taking drugs because they find it hard to pay attention for sustained periods? Is just about everyone you know taking something to level out his or her moods? Are you tired of the guy in the next

cubicle bragging about what he was able to do the night before after taking one of those little blue pills? And don't you feel left out that you're not on a prescription?

That's why there's Normallix.

Just because you're not showing any signs of acid reflux disease, erectile dysfunction, attention deficit disorder, mood swings and anxiety, or even hair loss, is no reason that you shouldn't be on something.

Normallix is designed with you in mind. Just one Normallix a day will keep your life exactly the way it is now and, once you've been on it for two or more weeks, you'll be convinced that if you stop, all hell will break loose.

Normallix, of course, is not for everyone. You should not take Normallix if you raise elephants in your backyard, have large green scales on more than 90 percent of your body, sneeze from any orifice other than your nose, wish that someone would make a movie of the life of John Manley, or have ratatouille more than three times a day.

There are some side effects. When you are prescribed Normallix, the share price of the drug conglomerate that produces Normallix may go up, and dividends to shareholders may increase, which means they will be able to buy more things, which is good for the economy. As well, the chief executives of the company that makes Normallix will receive huge bonuses, and maybe even have a little money left over to develop other new pharmaceutical products that, 10 years ago, no one even knew we needed. And, finally, Normallix may cause diarrhea, abdominal cramps and constipation, but then, really, what doesn't?

Your drug plan may not yet cover Normallix, but that's no reason not to get it. Your drug plan doesn't cover food, either, but you buy that, don't you? Should you subsequently determine, through the guidance of your personal physician, that you need a prescription for one of the other conditions described above, you can still take Normallix.

Normallix has been developed not to interact with other medications. That's because, to the best of our knowledge, it has no active ingredients. That's what makes it one of the safest medications available today. So, if you've been feeling left out of the pharmaceutical revolution, consider Normallix. Just one a day, although, if you feel like it, you can take more.

Linwood Barclay's column appears Monday, Friday and Saturday. E-mail him at lbarclay @ thestar.ca

BRAILLE MEDICINE LABELS INTRODUCED IN KOREA

Editor's Note: The following article is reprinted with permission from the Korea Herald, February 2, 2002.

Two pharmaceutical firms will begin selling medicines with braille labels for the first time in Korea, officials with the Ministry of Health and Welfare said yesterday.

Officials said Aronamin Gold, a multivitamin, and Optgent, a brand of eye drops, will be available with the braille labels at the end of the month.

Ildong Pharmaceutical Co. and Samil Pharm. Co., the manufactures of Aronamin Gold and Optgent, respectively, will bear the between 9 and 30 won in additional costs for the use of braille. In the case of Ildong Pharm., the new packaging is expected to cost the firm about 60 million won per year.

The adoption of braille by the pharmaceutical firms came about as the ministry and organizations for visually handicapped people sought cooperation from the pharmaceutical industry.

According to the Korea Blind Union, which represents 250,000 visually handicapped people in Korea, misuse of medicines among visually disabled people is prevalent.

The organization's survey of 324 visually handicapped people in 2000 showed that 27.6 percent had misused medicines due to inability to read the labels, and 4.3 percent of those had to be hospitalized.

The Ministry of Health and Welfare said it is determined to make efforts to encourage pharmaceutical firms to expand the use of braille on medicine labels, not only those frequently used by visually handicapped people such as eye drops and insulin, but also more common medicines, such as those used in the treatment of inflammations and ulcers.

The ministry recently implemented a revised pharmaceutical law that includes a clause encouraging the use of braille on the labels of medicinal products.

An official of the Korea Blind Union said the adoption of braille by pharmaceutical firms will do more than help blind people in everyday life.

"We expect the occasion to help the general public gain deeper understanding for visually handicapped people by coming across braille letters," the official said.

TALKING PRESCRIPTIONS HELP "READ" LABELSBy: Susan Lang

Editor's Note: This article is reprinted with permission of iCan News Service, April 9, 2001. http://www.iCan.com

Talking prescription bottles are available for those with low vision to help them reliably identify their medications and follow the instructions printed on the label. Both Aloud and ScripTalk use "smart" labels with embedded microchips that contain information about the prescription. A portable reading device then translates the contents of the microchip into speech, so that the user can "hear" what the medication is and how to use it.

If you have trouble reading the labels on your prescription bottles, wouldn't it be nice if you could listen to them instead? Why run the risk of possibly taking the wrong medication or using the inappropriate dosage because written labels are not suited to your abilities? Now there are devices available that let your prescription bottles tell you what medication is inside and how to properly use it.

Two products that provide this capability are called Aloud and ScripTalk Both systems employ "smart labels" that are affixed to the prescription bottle and contain tiny, embedded microchips. The microchips are pre-programmed at the pharmacy with information such as patient name, prescription number, type of medication, recommended dosage, and number of refills. This information is translated to audible speech when the patient engages the bottle's label with a special reading device, allowing the patient to hear the information stored on the microchip. When a prescription runs out, the audio label is returned to the pharmacy to be reprogrammed and used on a new medication container.

The reading devices used by each system are slightly different. The Aloud system's audio label replay unit is a small cylindrical stand that is slightly larger than a typical prescription bottle. When the audio-labeled bottle is placed in the stand and pressed downward, the prescription information is read audibly. The ScripTalk reader is a wireless, hand-held box that's about the same size as a deck of cards. When the prescription bottle is brought within an inch of the reader, the information contained in the smart label is converted into audible speech.

The costs associated with these systems include the prices of the reading device and the audio labels. The Aloud replay unit is available at no charge from Rx Partners when using their mail-order prescription services. The ScripTalk reader will be priced at around $200 when the system becomes available later this summer. However, some health insurance policies may cover this cost for qualified recipients. Participating pharmacies may offer special pricing as well. Audio labels are typically available for a one-time fixed cost of about $20, or are paid for by adding a minimal charge (e.g. $1) to the cost of each prescription issued, depending on the individual pharmacy.

For those who are blind, have low vision, or have difficulty with printed text, a talking prescription system can bring them peace of mind and independence when it comes to using their medications properly.

BARRIERS ARE TOPPLING FOR MEDICAL STUDENTS WITH PHYSICAL DISABILITIESBy: Linda Villarosa

Editor's Note: This article is reprinted from the International Herald Tribune, November 27, 2003.

NEW YORK--As a fourth-year medical student, Jeffrey Lawler listens --really listens --as his patients run through their lists of physical complaints. When he touches a scar or feels for bumps, lumps or growths, he directs all of his focus into his hands, moving his fingertips slowly over skin, tissue and bone, occasionally pressing and prodding gently. A talking blood pressure cuff recites readings in an automated voice, and a nurse or fellow medical student lets Lawler know that a patient's temperature is hovering around 100.

Lawler's hearing and sense of touch are extra-finely tuned, because he cannot look into a patient's eyes or see if a wound has healed. He cannot read the numbers on a thermometer, a blood pressure monitor or his pager. His eyesight began fading 20 years ago, as a result of the disease retinitis pigmentosa. By 1993, Lawler, now 43, was legally blind. Still, he took the medical college application test with the help ofa reader and a scribe and was accepted to Western University Medical School in Pomona, California. He will graduate in June near the top of his class and hopes to practice physical medicine and rehabilitation.

"The human body fascinates me, but my greatest strength as a doctor is patient contact," said Lawler, who is rarely without his guide dog, Burke. "Yes, my knowledge is good, but I also bring empathy to the bedside. I've been treated by doctors who didn't really listen to me or said things like 'You're not planning on having children are you?' So I take my time with patients and try and really listen and thoroughly explain things."

In the past, students with physical disabilities were rarely accepted to American medical schools, and those who were rarely completed it. But Lawler has joined a growing number of students with disabilities who are thriving in medical school.

Though no statistics document how many disabled students are attending medical school or how many disabled doctors are practicing, experts in the field note that laws like the Americans With Disabilities Act of 1990 allowed disabled students access to every level of education and helped propel the increase in medical students.

"Over the past several decades, the doors have opened for kids with disabilities to go to school, get diplomas and graduate, so we've seen huge increases in the numbers of disabled students in undergrad," said Martha Smith, project coordinator of the Centre on Self-Determination of Oregon Health & Science University.

A survey of the American Council on Education notes that the number of full-time freshmen with disabilities has increased to 11 percent from 7 percent from 1988 to 1999. Smith and colleagues at the Centre on Self-Determination have trained faculty and staff at about 25 medical schools in the last three years, focusing on ways to accommodate the students without sacrificing medical standards and patient safety. But despite increased acceptance of people with disabilities and changes in laws, attitudes may still be hard to sway, particularly in medicine.

"Doctors are the least comfortable and often the least knowledgeable about disability issues," said Julie Madorsky, 58, whopracticed from 1969 to 1995. She had childhood polio and was the prototype for the character Kerry Weaver, the attending physician who walks with the aid of a crutch on the television series "E.R." She added: "There's a concept that it's 'them' and 'us.' The idea that someone can enter medicine with a physical disability is counterintuitive. It goes against the notion that doctors are healthy and perfect and able-bodied and patients are not."

Some people in the field worry that the physically disabled cannot fulfill the clinical requirements of medical school, and that they need special treatment to graduate. There is no national criterion for technicalstandards for admission and graduation, and each of the nation's 126 medical schools is responsible for creating and publishing its own graduation requirements.

"It's very tricky," said Robert Sabalis, associate vice president of student affairs and programs at the Association of American Medical Colleges in Washington. The organization soon plans to produce an updated overview of legal requirements for disabled medical students. "Some medical schools, for example, say that one cannot rely on the physical skills of a third party for assistance, but other schools don't have that."

Advocates for disabled students argue that some medical school standards that create hurdles for the disabled are outmoded. "Too many schools are using the standard that a doctor has to see perfectly, walk perfectly and hear perfectly, but if they really followed that standard, no one would graduate," said Brenda Premo, director of the four-year-old Centre for Disability Issues and the Health Professions at Western University.

The disabilities legislation may have had other influences as well. No studies have looked at malpractice and whether disabled doctors and medical students are at higher risk. But according to the Physician Insurers Association of America, a trade association of medical malpractice insurance companies, there is no difference in underwriting medical liability policies for doctors who are disabled and those who are not.

"Our application and underwriting process is blind to disabilities," said Frank O'Neil, a senior vice president at the ProAssurance Corp., one of the nation's largest medical liability insurers. "As long as a doctor is trained and able to perform the procedures for which they are applying for coverage --with or without an accommodation, like a physician extender --we don't care."

Lawler, the student, said he had a hard time getting a surgery rotation, a medical school requirement, because of his blindness. "Me being in the operating room became a big issue," he said. "In the third year, you don't do anything except hold retractors during surgery, but it was very challenging finding a site where I'd be accepted. Finally, I was able to scrub in on a procedure, and I was extremely focused. All I did was

hold the retractor like old medical students do to keep the cavity open, but I really concentrated because I knew I was under a microscope and didn't want to screw up."

Lawler said he trained with a physician who was also blind, Stanley Yarnell, who practiced rehabilitation medicine in the San Francisco area for 27 years before retiring in June. Yarnell, 55, who began losing his vision in 1969 because of recurrent optic neuritis, said he considered medicine to be a cognitive process. "When I can't see something, I was able to get what I need in terms of a description from a resident, nurse or even a patient," Yarnell said. "But there are other low-tech ways to practice without vision."

Margaret Stineman, an associate professor of rehabilitation medicine at the University of Pennsylvania, was born with a deformity of the skeletal system, a reduced lung capacity and missing muscles to move her eyes. She consults on rehabilitation of patients with neurological injuries.

"I look for settings where my mind and creativity are valued," she said, "because these are the two particular gifts I have." She said that early in her career, some mentors were concerned that she might have difficultygetting through medical school. To her knowledge, however, "there has never been a patient who has been uncomfortable with my disabilities," she said. "I work in a trauma service, and as a person who has lived with disabilities, I can help my patients figure out how to develop ways to overcome their physical problems and grow. The life experiences that I've had are part of what I bring to patients, and they appreciate that."

IS THE INTERNET CREATING A NEW GAP BETWEEN PHYSICIANS AND PATIENTS?By: Andrew Freeway

Editor's Note: This article is reprinted from Disabilityworld, a bimonthly web-zine of international disability news and views, Issue no. 14, June-August 2002. http://www.disabilityworld.org

Almost at the same time, The New York Times and the BBC News came with interesting stories about using the internet: "Why Doctors Don't E-Mail" by Katie Hafner and "Website unites patients," by Sarah Frost.

According to Katie Hafner of the New York Times, some doctors are very advanced in using computers and internet for quick access to reference materials and medical records or just a visit to the web. But they simply refuse to communicate with their patients through the internet. Face-to-face interaction is first and a pitiful second is the phone. But e-mail is out of the question. Many doctors have added e-mail to their daily rounds. But most physicians are very reluctant to exchange e-mail with patients. Most patients, on the other hand, are very much in favour of communicating with their doctors through e-mail.

Why are doctors so reluctant? They worry about the confidentiality of the doctor-patient relationship. Others are concerned about the mail-trail they are creating; a malpractice liability is always around the corner. And some think that it will hit the core of medical practice: time seems to be the most essential and scarce attribute of a physician and e-mail will just add to the workload instead of unloading it.

But there are also technical reasons for not using e-mail. Every question and answer can develop the need for more questions and answers. Perhaps e-mailing is not fast enough for the sometimes dynamic interaction between doctors and patients.

But there are also some emotional reasons: it is a relative new way of communication. Many physicians have a tendency to stick to the things they know.

The American Medical Association adopted a set of guidelines for e-mail between doctors and patients. Whether anyone else will be reading the message, how to avoid group e-mail and how the messages are going to be archived are some of the questions answered in these guidelines.

There are, of course, a lot of doctors who are very experienced in using e-mail to communicate with their patients. The doctor-on-line can prevent stress among patients because they have easy access to their physician. And it is very easy to monitor on a day-to-day basis the development of patients in specific circumstances. Also for patients with a disability, e-mail could break down a lot of barriers between themselves and their doctors. Especially when those with fragile health and mobility problems suddenly find themselves having a doctor on hand.

BBC News reported about the way websites unite patients and gave www.thirdaid.com as an example of new communication. This website enables people, who are coping with a disease or injury, to contact others in the same situation. An instant peer-to-peer site to exchange experiences, to share common grief over their situation. And maybe to join an advocacy group to improve their situation.

The founder of this site, Sarah Frost, dreamed up the idea following a serious skiing accident. She had compressed vertebrae in her spine and was left bed-bound and immobile. She felt the urge to communicate with people who had been through the same experience, to share her problems with people who understood what she was going through. When you are bed-bound or housebound, the internet and e-mail are very liberating. You can orchestrate your own communications as though you were getting around at work or in a mall. For her, using e mail to consult her doctor or talk over her daily life with a friend is as normal as can be. She has never been so close with some many people on so many issues as she is now using the internet.

Closing the gap before it gets any bigger is a real priority for the medical world. People have a need for instant answers, zapping through life makes it necessary to have all resources quickly available and accessible. Come on Doc give it a try: reach out and touch your keyboard and mouse. Create your own website and start to be just a part of the World Wide Web. Get rid of your high chair or your fear of liability. E-mail is here to stay; make sure you stay with it!

THE PROMISE OF DOLPHIN-ASSISTED THERAPY By: Julius Debuschewitz

Editor's Note: The following article is reprinted from the Whitehorse Star, September 19, 2003.

Animals have served humans well for thousands of years now. We are all familiar with guard dogs and dogs trained to sniff out explosives and drugs. We have heard about the role carrier pigeons played during the First World War, several of which were the recipients of medals.

In Iraq right now, there are a number of unusual animals performing dangerous tasks for their military masters: dolphins and sea lions are used to patrol for and remove underwater explosive devices that threaten shipping lanes and harbours. The sad part is that animals used in military and police services sometimes die while performing their duty.

Seeing-eye dogs are common, as are dogs helping people with other disabilities. The beauty is that these animals can perform their duties with little or no danger to themselves. They are priceless to their human companions.

A newer program offered in some penal institutions now trains inmates to train dogs for helping the disabled--a great way to have inmates do useful work and to ensure that more disabled people end up with a four-legged helper.

An animal that is a relative newcomer in terms of peaceful, not wartime, help to human beings is the dolphin. Apparently, the idea to utilize dolphins in therapy was first conceived by Dr. Ludmila Lukina, a Russian scientist who trained dolphins--formerly used by the Soviet military--to be the stars of a study called Dolphin Assisted Therapy.

In the study, there were more than a thousand patients, both adult and children, suffering from a variety of diseases. Often referred by their physicians whose normal treatments were not working, they were aided in their healing by dolphins. Patients suffering from specialized phobias, cerebral paralysis, and stammering showed remarkable improvement after interaction with dolphins.

Since these early but promising beginnings, dolphin-assisted therapy has made great strides. In Great Britain, Dr. Horace Dobbs has found that dolphin therapy works very well for patients suffering from anorexia nervosa and similar ailments. He also came up with the idea that the sonic communication utilized by dolphins could help alleviate depression, much like music can alter moods and be beneficial to human beings.

The Dolphin Research Centre (DRC) on Grassy Key, Fla., has been helping adults and children with dolphin therapy since 1988. In particular, they have been successful in conjunction with human therapists, of course, in helping patients expand speech, reduce stress, and focus attention on specific tasks. The success rate has also been phenomenal in the treatment of autism, Downs syndrome, visual impairment, cerebral palsy, Post-Traumatic Stress Disorder and cancer, to name a few. Indeed, the program has expanded so much that many program participants are sponsored by groups such as the Make-A-Wish Foundation, Sunshine Foundation, Children's Wish Foundation, Dream Foundation, the Easter Seal Society, and others around the globe.

What is most fascinating, though, is the way in which the dolphins interact with their human charges. One of the reasons for the way dolphins act seems to be their ability to use echolocation (biosonar) to zero in on the physical differences of their human swimming partners. For example, when one of the dolphins worked with a visually impaired youngster and time came for the dolphin's backrub, the animal stood upright in the water and gently rotated, offering all its surface to the hands of the child without being asked to do so. Another dolphin, blind in one eye herself, constantly clicked while swimming with a blind youngster, as if knowing that he needed audio input to know where she was at all times.

Another dolphin seemed to sense that a young woman, who was just regaining the use of her hands, had a hard time grasping its dorsal fin. When the young woman became frustrated, the dolphin (Nat) simply swam alongside her and pushed his dorsal fin into the crook of her elbow, taking her for a gentle ride. By the way, years later Nat's half-sister performed the same manoeuvre under similar circumstances, even though she had never witnessed Nat's elbow dorsal.

The dolphin's use of biosonar probably also accounts for the fact that they sense healed broken bones, implanted metal plates, injuries, and even pregnancies in their human companions. It has been observed that the dolphins seem to pick up on special needs of their human swimming partners without prompting.

How do they do that? Can dolphins and humans communicate with each other without the use of language or even the hand signals dolphins are trained with? The evidence certainly seems to suggest that possibility.

The healing work that's being done with the dolphins is simply amazing. Yet, I think we have only just begun to realize how helpful and intelligent these gentle creatures can be. I only hope that we continue to use that intelligence for the good of both species.

THINKING AND LIVING PROACTIVELY WITH DIABETESBy: William F. Schley

Editor's Note: This article is reprinted from Voice of the Diabetic, Spring, 2002. http://www.nfb.org/vod

Living with diabetes is no longer the struggle it once was. Living well with diabetes, even with diabetic complications, is now possible through advances in medicine and technology, but your mental and emotional condition will also affect your diabetic health. It is possible to live a fulfilling life, to define and accomplish important life goals, and to have a happy and healthy family life as a long-term type 1 diabetic; but you need to know what to do, how to do it, and above all, you must be willing to do whatever it takes to attain maximum results. I'm still reaching for some of life's brass rings as my diabetic history nears its 45th anniversary, but I've attained a number of my objectives, and you can, too.

If you've got a glucose monitor, USE IT. If you don't have one, GET ONE. Many doctors will give you a high-quality monitor, and some pharmacies even have 100% rebate coupons available for the asking when you purchase one. Check out the special offers! Test regularly, keep track of your tests, and adjust your insulin according to your diabetic specialist's orders. This step is imperative for good control and to help avoid long-term neuropathic damage.

See your doctor regularly. Make sure your MD orders the appropriate blood tests, including a glycoslyated hemoglobin test every three to four months. If you can't have your doctor test your blood pressure regularly, buy a good quality blood pressure cuff, called a sphygmomanometer, and do it yourself. High blood pressure is common in both types of diabetes and a root cause of many circulatory and neuropathic problems. If you are already on blood pressure medicines, don't forget to take them as prescribed. Take a good diabetes "patient education" course, often available at your local hospital and usually covered by medical insurance.

Monitor all your physical changes carefully. If you have a wound that doesn't heal, don't delay--call your doctor. If you gain or lose weight suddenly, you may need to make changes in diet, lifestyle, or medications. If your vision changes, especially if you see floating or moving particles within the eye, or you have persistent eye pain, see an ophthalmologist immediately.

Quit smoking! Along with all the other reasons not to smoke cigarettes, you should be aware they cause rapid and often irreparable damage to capillaries in the eyes and extremities. If you smoke cigars or a pipe, do so ONLY IN STRICT MODERATION, and only in a well-ventilated area, to avoid inhaling second-hand smoke.

Moderation goes for alcohol consumption as well. Small amounts can be factored into your diet, but remember that it is especially difficult for insulin dependent diabetics to digest alcohol without experiencing a rapid rise in blood sugar, generally followed by a rapid lowering of blood sugar. Ask your doctor for the latest information on moderate alcohol consumption in a diabetic diet.

See a dietician. You'll be surprised at recent advances in dietary medicine. If your blood sugars tend to run high, you may need to increase consumption of both water and dietary fibre, since high BGS can dehydrate the lower tract. High protein diets were once considered fine for newly-diagnosed type 1 diabetics; but if you have any sign of kidney trouble, your doctor should instruct you on how to lower the amount of protein

in your diet. A high protein intake is very hard on impaired kidneys, so a weight loss diet that's all meat and fat should be avoided.

Exercise at least five days each week. If you don't want other complications of long-term diabetes to occur, exercise is imperative. If you're saying "Well, that's not going to happen, " just remember that 30 to 45 minutes of fast walking can often take the place of more strenuous workouts. Someone once quipped, "Whenever I feel the urge to exercise, I lie down until it goes away." I hope he wasn't diabetic!

Park your stationary bike directly in front of the TV. When you snack, try grapes, celery, cucumber slices, or popcorn without butter. Drink at least eight ounces of water for every ten pounds of body weight every day, and more if you're working up a good sweat. Take a good quality multi-vitamin with chelated minerals, one that's high in anti-oxidants.

I recently took the ANSCORE test, available from Boston Medical Technologies. This unique test monitors the cardiac autonomic nervous system. Ask your endocrinologist where you can have this important test performed. I recommend it highly to ALL diabetics, as it measures responses of the heart muscle over timed and painless stress periods. It then gives a quantified measurement of any neuropathic damage in the cardiac autonomic nerves. The autonomic nervous system is responsible for involuntary bodily functions, things like keeping your heart beating, adjusting the heart rate to match your level of stress, telling the body when it's time to sweat, sexual response, and other functions that aren't consciously controlled. After 44 years as a diabetic, some in which I was not maintaining good control, my test showed that my cardiac autonomic neuropathy response was abnormal for all three tests. When ANSCORE results are abnormal, it may mean that the diabetic patient is at risk for silent heart attack, coronary infarction without normal symptomatic warnings. The good news is that there are positive steps that can be taken to maximize one's ability to avoid myocardial infarction. No one wants to have a heart attack.

If you've just been diagnosed diabetic, you need to exercise each day, every day, if your doctor says it's okay. If you're an old hand at diabetes and need to increase your exercise, see your cardiologist and have him adjust your regimen.

Watch your feet. Keep them clean, and don't trim nails too short. Wear comfortable shoes that fit properly and provide good support. Since diabetic circulatory problems usually first develop in the lower extremities, it is wise to get acquainted with a good podiatrist as soon as possible.

Enrich your spiritual life. The first stage of any program designed to end habitual destructive behaviour is to surrender your care and concern to a higher power. Poor self-management of your diabetes can be a lot like a chemical or behavioural addiction, since it can cause chronic damage. You need to be actively involved in a diabetic health maintenance program, one with a positive outlook. It's important to not only stop destructive diabetic behaviours (the activities and inactivities that keep your blood sugars too high), but to replace bad habits with good ones. Prayer and meditation have been positive influences for me and other diabetics I've interviewed. For the nearly 20 years that I've been visually impaired, I have done all that I am able to introduce spiritual light into my daily life and practice. It doesn't cost anything, it doesn't require special equipment, and it absolutely can't hurt you, so why not give it a try?

Stay positive! No matter what life throws at you, each time you wake up Breathing, you are better off than the 1,500,000 humans each day who will not live to see tomorrow's dawn. Be thankful! Every day we are blessed with life is another gift. If you don't believe this, go out and give some of your life to someone else. Once you get involved with helping others, you'll find you have more to give.

Don't sit. If you're not regularly active, employed or as a volunteer, get a part time job. Visit somebody who's lonely, volunteer at a retirement centre, a veteran's centre, or offer to mentor a child. Go talk to a

friend, and never miss an opportunity to tell them why you care for them. If you are dealing with depression, do not be afraid to seek professional counseling. Those seeking counsel are not weak, but smart enough to know when they need assistance. One of the best habits you can develop is to quit depressing yourself by incessant complaining.

In your leisure time, read a good book. Studies show that you'll burn more calories reading a good story for one hour than you will watching three hours of television.

Diabetes isn't the end of your life. You have many options and lots of choices to make. Choose to be alive, to be thankful, to be positive, and to get involved. Even with long-term type 1 diabetes, I live a very full life. I lost my eyesight to my disorder, and yet I'm a professional writer, writing two columns monthly, the manager of a prosperous machine vending company, a part-time "house husband" who does most of the shopping and cooking for my wife of more than 21 years, and an active lay minister. I am totally blind, and have mild neuropathic damage in my toes and kidneys, yet I hunt deer, elk, or antelope each fall. I play and teach drums, rough-house often with my three dogs, and read an average of 1.5 books from the Talking Books Library each week.

Remember, even if you are dealing with diabetic complications, it is still your responsibility to determine your own mental attitude. Follow the steps I've mentioned, and compare how you feel about your situation after just one month.

Those who believe nothing can be done to improve their situation, and those who believe there is always something they can do to improve things, are both right.

HEALTH CLUBSBy: Maggy Bower

Editor's Note: Maggy Bower is a former database analyst, now married and living in Bexleyheath, Kent, UK, who has varied interests including a love of poetry.

I am a very independent, competent and capable totally blind lady who believes fervently in integration at all levels, and in keeping my body toned and healthy. In 1994, I joined a health and fitness club, and have been a member of one ever since, working out two or three times each week.

When choosing the right club for my needs, it soon became clear to me that adapting equipment is virtually impossible. It could perhaps be achieved on some of the older machines, but the modern ones have digital displays showing a whole range of information, from calories burned to speed, resistance, incline, and even such messages as "pedal faster". I therefore use the following checklist:

Staff. I look for friendly, cooperative and preferably well-qualified instructors. This means that new clients can undergo an initial assessment to determine fitness levels, and individualized programs can then be developed to enable them to achieve their goals; e.g. weight loss, body building, aerobic fitness, etc. Staff need to be on hand at all times, to set up each piece of equipment as required.

Guide dog. It's important that my dog can be tied somewhere, so that he can see me at all times and is not stressed. Of course, it follows that staff who love dogs are of great benefit.

Price. Health clubs vary enormously in cost and facilities, and I need to find a place that is affordable.

Equipment. I like a reasonable range of equipment; e.g. steppers, jogging machines, cross-country ski machines, rowing machines, etc.

Accessibility. My first club, for example, was only ten minutes from my office. I could, therefore, take out my frustrations as an advanced computer systems engineer on the machines, rather than on my colleagues. It also meant that I would be far more likely to make use of the club than if, say, I had to take a twenty-minute bus ride to get there.

Saunas, hot tubs and swimming pools. These are fun and relaxing after a workout. Check, however, that the staff have lifeguard qualifications.

I hope you have found this of help and interest, and that it will persuade some of you to join your local club, make new friends, have fun and, most importantly, get fit and live longer!

BLACK BELT-WHITE CANEBy: Jody W. Ianuzzi

Editor's Note: This article is reprinted from the Braille Monitor, February, 1992. http://www.nfb.org

A blind woman is traveling alone down a dark, deserted street. There are some people who might consider her helpless and vulnerable. I would like to change that image. That blind woman just might be me on my way to teach my judo class.

As we all know, the challenges of blindness can be overcome by learning alternative techniques, but some situations can be a bit more challenging than others. As a child in public school, I remember the schoolyard bully, who tested my vision by punching me in the face. My gym teacher gave me a permanent waiver from class after years of sitting on the sidelines while the rest of the class played a variety of ball games.

Eventually I found a solution to these challenges as well. Judo became my ultimate alternative technique. When I first heard about judo classes, I was hesitant. Based on my past experience, I didn't think the judo instructor would consider me as a student. Happily, I was wrong! The instructor didn't care that I couldn't see. He was more interested in what I could do, and I could do judo. I sincerely mean it when I say that my life hasn't been the same since that day.

It is now twenty years later. Life has come full circle. I am the instructor, and I am recruiting blind and sighted members to my judo club. I want to give to my students what judo has given to me.

Unlike some other martial arts, judo needs no adaptation for blind players, who have been active in judo for many years, practicing with sighted players on an equal basis. For blind children, judo can provide an opportunity to be just one of the kids, both at practice and during club activities. This is as it should be, because it benefits both the blind and sighted players and embodies the philosophy of judo as well.

Judo is a full contact form of self-defense that includes throwing techniques, pins, chokes, and joint-locks. A basic principle of judo is that a small person can throw a larger by using that person's motion to complete the throw. In this way, if a person pushes you, you pull him or her into a throw.

The physical benefits of judo practice include self-defense training, weight control, and physical fitness. With regular practice, there is a noticeable improvement in balance, coordination, and orientation. Judo can be enjoyed by men and women of all ages, from small children to adults. It is a great way to get back into

shape and stay there while having a lot of fun too. One enjoyable aspect of judo is that it challenges the mind as well as the body. Other forms of exercise can be boring, and it is easy to lose interest in them.

My students and I have attended many tournaments and clinics, both large and small, and we have never been excluded or shown any favouritism. I remember one tournament we attended at West Point. One of the club instructors wanted to present my student with the Best Player trophy, based on her blindness. The tournament director's reaction was to say, "It's no big deal that she's blind; I'll give her the Best Player trophy when she comes here and wins." She won a lot more than a trophy that day. On the way home from the tournament she told me that it was the first time in her life she felt like she was just one of the kids. And for the first time, I began to realize that I was giving back some of what judo had given to me.

There is a philosophical benefit to judo training. As you challenge yourself, you gain a feeling of accomplishment that carries over to all aspects of life. The knowledge that you can handle a physical conflict makes a verbal conflict much less threatening. You will find that you develop a strength of mind to stand up for what you believe in, but also a strength of mind that will allow you to step back when that is the wise thing to do. You actually become less defensive and more relaxed. In twenty years, it has never been necessary for me to use judo for self-defense, but I have used the strength of judo every day in all types of situations.

Part of this strength comes from a feeling that you are in control. You carry this control with you in confident body language, in the way you walk and communicate with people. When you project confidence, you are less likely to be confronted.

The self-confidence that can be gained from judo is very important to children. The blind child, who is frustrated by his or her limitations in mainstreamed gym classes, or who is segregated in classes for disabled students, can feel less capable than classmates. Judo gives the blind child the opportunity to participate in mainstreamed activity on an equal basis with his or her peers. When the other kids are talking about their sports and club activities, the blind child can join in with talk of personal accomplishments. This equality is important to blind children, but it is also very important to their sighted peers as well. The focus is on what you can do, not on what you can't. It becomes less important that you can't play baseball when there is something unique you can be proud of. "I can" is the concept that becomes important.

Self-defense is important to everyone nowadays, but as blind people we are perceived by some as more vulnerable than others. Judo gives a balance to this misconception. All of us should learn to defend ourselves, not just for our own benefit, but as a means to change society's image of blindness.

Self-defense can be as simple as being sure of who is at your door before you open it, or as involved as defending your life. You should avoid shortcuts through less traveled areas, and stay in places where there is safety in numbers. Also, avoid walking next to buildings since doorways and alleys are places where someone might hide. Stay in the centre of the sidewalk so that you can be clear on all sides. When I walk down the street, I try to identify the age, sex, number, and location of the people around me. This is kind of a game, but it is also a way of training yourself to be more aware of everything around you, so you can anticipate a situation before it develops.

Judo classes are usually taught in a club setting, which includes men, women, and children of all ages. Judo is often a family activity. There are judo clubs all over most states. Judo instructors usually teach at no charge. This might seem surprising, but we enjoy judo, and we teach because we love it. Class fees are usually minimal and include club dues, a uniform, and United States Judo Association membership. The United States Judo Association has been very active in encouraging instructors to recruit blind players, and the instructors are already familiar with the benefits of judo to blind players.

As you learn judo, your skills and attitude will develop. The school bully will be less of a threat. You can walk down that deserted street and be a lot less vulnerable than some might think. Those people who attempt to dominate you will not be successful. The unsolicited helper who attempts to take you across the street or the airline employee who attempts to load you into the wheelchair will both be surprised to find that you are in control of the situation. Judo is a way to even the odds and change what it means to be blind. I have made judo my ultimate alternative technique, and I hope you will make it yours as well.

I hope I have sparked an interest in you to learn judo. It can change your life as it has changed mine. If you would like more information or if you would like to locate a judo club near you, contact Larry Lee, Executive Director, United States Judo Association, 19 N. Union Blvd., Colorado Springs, Colorado 80909, (719) 633-7750. He is waiting to hear from you! MY INNER VOICEBy: Anu Pala

The date was July 19, 1991, when I had my eye surgery due to a retinal detachment. Little did I know then that this would be a turning point in my life--a time which would clearly mark the beginning of a new chapter--a long challenging chapter. I had never taken sight for granted, having had sight in only one eye since birth, but I was not prepared to lose what I did have.

The first few months were terrifying. An uncertainty of what was to happen next, a definite fear of the unknown. It was as though my past flashed before me. A glimpse of everything I had done, gone to school, travelled, worked, danced--everything that may not be again. I would have to start my life over, but with new rules, rules that I didn't know, rules that I didn't like. What do I do, and where do I begin?

It was fast approaching the fall months and holiday season. Diwali, the most auspicious festival of the Hindu faith, was just around the corner, and the organization of different social events was under way. Until now, this was a celebration of which I had always been a part. Since the age of eleven, dancing in the various Diwali celebrations was a tradition for me. A tradition that may no longer be mine. As the date grew closer for one particular event, I could feel the emotions raging. A voice from within telling me that I had to perform.

Performing was something that I had always enjoyed, it was a part of who I was. I listened to this inner voice and decided that I would follow my heart, I would continue doing something I loved. I may have lost my sight, but I wasn't going to lose my vision of who I was. When I shared my thoughts with those closest to me, I was confronted with mixed responses; some of natural concern (for example, falling off the stage or facing the wrong direction), yet others of sheer discouragement and disapproval. Comments such as "are you out of your mind?" Despite all the comments and concerns, I decided to dance.

Finding the perfect song would be a pleasant challenge. In Indian dance, there is usually a story behind each song. Through the use of hand gestures and facial expressions, dance is used as an instrument to interpret the story behind the song. Through much searching, I had found the ideal piece. It was a song which expressed the strength and determination of a young woman who had fallen in love. In love with a man, with life, with everything around her. Her message was one of how she would follow her heart and dance with joy, despite what others thought. Sentiments that expressed exactly how I felt. The symbolism portrayed in that song was, indeed, my reality.

The day of the show had finally arrived, and even the family and friends that were initially concerned and afraid for me were now supportive and encouraging. I was standing back stage as the MC introduced me.

The moment felt so surreal. I couldn't believe that I was about to take such a huge step, yet it felt so right. The anticipation and excitement was growing as I felt the rush of adrenalin through my body. Within seconds, the curtain opened--it was time.

As I danced my way to centre stage, I could hear the silence of the audience in sync with the rhythm of the music. As I danced across the hardwood floor, I remember experiencing true joy for the first time since my surgery. As I expressed the meaning of the song through my dancing, I was sending a message to the world--that I was ready to face it head-on with confidence and ready to face the challenges of life--(despite) no matter what others thought.

As the song neared its end, and as I twirled in circles in the final moments of the performance, I heard the roar and applause of the audience grow louder, only to be followed by a standing ovation. A moment which had made all the efforts worthwhile--a moment which will remain engrained in my memory and my heart forever.

Since that first performance, there have been many challenges I have faced, and many obstacles that I have overcome. There have also been many accomplishments, which have made the joy of overcoming those obstacles all the sweeter. From my experiences, I have learned that, if we truly believe in something, we can accomplish it. What made it possible for me was the belief in myself, faith that I was capable of accomplishing anything I set my mind to, and listening to the most important voice of all--my inner voice. It has been said, and I truly believe, that "Life is a gift given by God. What we make of it is a gift from us to God." INTERNATIONAL CORNER:

DEAF-BLIND CHILDREN TO PRESENT CHARTER TO GOVERNMENT

Editor's Note: This item is reprinted with permission from Sense's website. http://www.sense.org.uk

Deaf-blind children and their families are to hand in a charter to the Government demanding equal rights with other children on Monday, 27th of October, 2003. Thousands have signed the charter, from Zoe Ball to Anne Begg MP, asking for better support for deaf-blind children and young people.

Sense, the national charity for deaf-blind people, has organized the charter which will be handed to Baroness Ashton at the Department for Education and Skills.

The charter describes four key areas where action will change the lives of deaf-blind children and young people for the better. These are:

* Pre-school deaf-blind children should be given the support they need to play, learn and develop. * Deaf-blind children should be given the chance to take part in the life of their community.* Deaf-blind young people should be able to participate in activities with people of their own age.* Deaf-blind children and young people should receive information in a way that suits their needs.

Children are coming from all over the country to the hand-in. They range from four-year-old Jesse, who is deaf-blind, to 16-year-old Zara-Jayne, who has a rare condition called CHARGE syndrome.

The charter has been signed across the country and online. Sue Brown, Head of Campaigns at Sense, said "more than 4200 children in the UK have dual sensory disabilities. This charter asks that the basic rights most people take for granted are provided to children who are at such a critical learning age and deserve a

decent childhood. The Government has recognized the needs of deaf-blind children in guidance to local authorities. Sadly, too many families still have to fight to get the support to which they are entitled."

Deaf-blindness is a combination of both sight and hearing difficulties. There are about 23,000 people in the UK who have a serious impairment of vision and hearing. Some of these people are completely deaf and blind, but others have some remaining use of one or both senses. A further 250,000 people experience some degree of dual sensory impairment, many in older age.

Causes of deaf-blindness include premature birth, birth trauma and exposure to rubella during pregnancy, which can cause babies to be born deaf-blind. Some genetic conditions, such as Usher syndrome, can also result in deaf-blindness. People can also become deaf-blind at any time through illness, accident,or in older age.

Further information can be found on Sense's website: www.sense.org.uk/reachout

The Reach Out campaign to raise awareness of local authority duties is supported by the Newsco Insider group, which publishes a series of regional business magazines.

A GERMAN VOYAGER'S BOLD VISION FOR TIBET'S BLINDBy: Jim Yardley

Editor's Note: This article is reprinted from the Braille Monitor, November, 2003. http://www.nfb.org

Upon arriving in Tibet, Sabriye Tenberken decided to tour the countryside, not from the comfort of a car, but atop the hard saddle of a horse. It was a chancy decision, not only because the rugged Tibetan landscape can be unforgiving and treacherous, but also because Ms. Tenberken is blind.

She thought the horse was perfect. She knew that blindness carried a terrible stigma in many parts of Tibet, and she had been told that many blind children were living in isolated, rural villages. She had started riding as a child in her native Germany, one of many lessons in self-reliance, and she wanted to instill a similar sense of independence in Tibetan blind children. So she saddled a horse and, with three other people, began riding.

She was less prepared for what she and her traveling companions discovered. "It was quite depressing," she recalled. "We met blind children who were four or five years old and looked like infants. They hadn't learned to walk because their parents hadn't taught them."

The memories are still fresh six years later, though now Ms. Tenberken is seated in a bright second-floor sitting room above the school she has founded for blind Tibetan children in the land she has adopted.

Her partner, both personally and professionally, Paul Kronenberg, is working on a computer in the next room, as voices of children drift through an open window from a courtyard below. The children are practicing a play written by one of them.

In a Himalayan region known as "the roof of the world", where high-altitude sun exposure contributes to unusually high rates of eye disease, Ms. Tenberken and Mr. Kronenberg, who is sighted, now run Braille Without Borders, a program for blind children in Tibet.

She created the first Tibetan Braille system, which she is now teaching to her students, and her memoir about Tibet, now available in the United States, was popular in Germany.

Nor is Ms. Tenberken, thirty-three, finished. In coming months she and Mr. Kronenberg plan to open a second Braille Without Borders program in northern India, a first step in their goal of expanding their work to other developing countries. Mr. Kronenberg, an engineer by training, is also trying to develop a lighter, less expensive braille machine.

Tall, with straight, sandy brown hair, Ms. Tenberken still remembers the skepticism she faced when she presented her plans to local officials in Tibet. She had first tried to get a job with different international aid groups, but she says she was told that blind people were prohibited from doing field work.

So she decided to start her own organization. Everyone, she remembered, thought she was crazy. "They couldn't imagine I could come to Tibet," she recalled. "They said, ‘It's not possible. She's blind; who can take care of her; who can take her around?'"

The chaotic streets of the old Tibetan quarter near the Jokhang Monastery present a disconcerting mess for sighted people, yet Ms. Tenberken navigates them herself and expects her students to learn to do the same. Her own childhood was filled with such challenges.

Ms. Tenberken was raised in Bonn. Her father was a pianist, and her mother directed children's theatre. Her brother is now an artist, prompting her to observe lightly that she came from an artistic family.

"I'm the only one who is a little bit practical," she said. She learned about independence from her mother, who as a student in Turkey during the 1960's dressed as a man on research trips because women were forbidden to travel. In Turkey her mother also chose the name "Sabriye," which means "patience" and "small hedgehog."

When Ms. Tenberken was only two, her parents learned that she would gradually lose her sight. They did not tell her about her condition, and by age thirteen, she was blind. Her parents, though, had spent the intervening years filling her life with images. They took her to museums, traveled extensively, and filled her eyes with colours. "I have all my visual images in my head," she said.

She says she agrees with her parents' decision to keep secret her impending blindness, because knowing might have terrified her. But not knowing did make her condition baffling. She kept banging into things without knowing why.

She finally put a name to her problem when she met another young girl who was blind. "It was a relief because suddenly I had a word for something that wasn't functioning as well as others were functioning," she said.

Her parents encouraged her to discover her own boundaries as a blind person, a philosophy reinforced when she attended a leading German high school for the blind. She learned to ride horses, ski downhill and cross country, and kayak in white water. "They showed us the teaching and methods and said, ‘Okay, you have to do something,'" she recalled. "The whole world was open to us if we knew the techniques and methods."

She has adopted a similar philosophy for teaching her twenty-nine Tibetan students, ages four to twenty-one. In August the group went white-water rafting, and they plan to climb a nearby Himalayan peak next year. The program emphasizes living skills like cooking, hygiene, and self-reliance, yet it also teaches workplace skills like computer use and Tibetan, Chinese, and English. Training is also offered in careers like massage therapy and music.

Ms. Tenberken's interest in Tibet took hold at Bonn University, where she decided to major in Tibetology. She was the only blind student in the program, and Tibetan had not been translated into braille. So she did it herself. Her first trip to Tibet, in 1994, ended quickly. She came down with altitude sickness and had to fly home.

Undeterred, she returned for good in 1998, starting her school with one teacher and six students. They were quickly evicted from their first building for lack of money.

Financing remains a juggling act. The monthly budget for the entire program is $1,900. Proceeds from her memoir, My Path Leads to Tibet, helped buy the current building, while donations have come from people in Germany, the Netherlands, and Switzerland.

She has set up a website called < braillewithoutborders.org .

Finishing her cup of coffee, Ms. Tenberken offers a tour of the school while the students practice their play. The playwright, Kyila, seventeen, who once lived in a small village in northern Tibet, could not read or write when she came to the school a few years ago. Now she is making plans to become a massage therapist, while her twin brothers, both blind, want to open a teahouse.

Soon four other students will leave the program to enter a regular Tibetan school, the first to make that transition. "The kids ask us every day, ‘When do we go?'" she said.

Her own future will remain busy, with planning for more programs in more countries. She and Mr. Kronenberg hope one day to open a training centre, possibly in southern India, where they could train others in starting up their own programs for the blind. The main goal remains instilling self-confidence and self esteem so that blind children will "not be embarrassed anymore."

A blind child, she notes, will never be able to drive a truck. "But they can read and write in the dark," she said. "And who can do that?"

HIGHLIGHTS OF RECENT NFB:AE ACTIVITIES

* New Contractors

We are pleased to welcome Allan Shaw of Toronto as our new Coordinator and Geoff Fierce of Winnipeg as our new Public Information Coordinator. Allan has extensive experience in the IT field and is a Financial Planner. Geoff has 10 years of valuable experience with disability work. They join Karen Leboe, Lois Benko and Monika Penner, and together give us a strong team of contractors for the year ahead.

* 2004 Scholarship Program

The deadline to apply for NFB:AE Scholarships in 2004 has been changed to October 15, 2004. Full details will appear in the next issue of the Canadian Blind Monitor, on our website www.nfbae.ca and will be distributed widely to colleges and universities throughout Canada.

* 2004 AGM Set for Saskatoon

The 2004 AGM will be held in Saskatoon on Saturday, May 15, 2004.

* Accessible Banking

At our 2003 Montreal conference, Resolution 2003-4 concerning accessible banking Services was adopted. Following correspondence with the TD Bank, which indicated they will not be rolling out their first automated banking machine until 2006, we have switched all of our accounts to Royal Bank Financial, the bank which introduced the first audio-enabled ABM in Canada.

* Fast Food Restaurants

Following a series of in-depth articles in the Toronto Star in September concerning accessibility to various fast food chains in the greater Toronto area, we wrote to the head offices of several chains raising our "accessibility" issues. These usually involve access to printed menus and the quality of customer service. We are following up on this issue.

* Toronto Chapter meets with TTC

At the Toronto Chapter's regular September meeting, Glen Johnston, Systems Accessibility Service Planner with the Toronto Transit Commission (TTC), made an extensive presentation on access to transportation issues that had been raised by the Chapter, and a lengthy and spirited exchange took place which was very informative. The Chapter will be discussing follow up work.

* NFB:AE Participates in PAWS International Guide Dog Conference

Linda Bartram and Paul Thiele participated in the PAWS International Guide Dog Conference, Vancouver, October 16-18, 2003. This year's theme was "On the Move", emphasizing mobility, travel and safety of blind persons using dog guides. Conference sessions included presentations on Changes in Travel Restrictions to the United Kingdom for Dog Guide Users, Recognizing Stress in Your Guide Dog, Discrimination (Refusal of taxi and other accommodations), Dental Health of Guide and Assistance Dogs and Street Smarts of Blind and Partially Sighted Persons, plus many more.

During our Show & Tell session, Linda Bartram outlined some activities of the NFB: AE, including the expanded Mentorship Program, and Paul Thiele listed some of the planned activities as Membership Committee Chair, including plans to bring new members on board, a membership contest to find a new, catchy name for our organization and a survey of present members to determine demographics, member satisfaction and to identify areas of greater membership involvement in the running and decision-making of our organization. Both stressed the NFB: AE is very supportive of dog guides and their users and cooperation with dog guide training organizations.

Our display featured information items on the NFB:AE, including membership forms and brochures, copies of The Canadian Blind Monitor, brochures on history and goals of our organization, all in at least two or three formats. By far the most popular item were cool blue “pooper-scooper” bags, which became the “must have” item for many attendees. Most of our pamphlets and all of the scoop bags were gone by the end of the day.

* NOVEMBER 2003 ACAT MEETING

Marcia Cummings represented the NFB:AE at the November 2003 ACAT meeting. The resulting recommendations to the Minister of Transport included: * That the Minister examine, within the mandate of the department, issues affecting seniors and persons with disabilities resulting from seat configuration (pitch and width) on aircraft.* That the Minister invite the airline industry to consider suggestions from ACAT consumer members on improvement of their online booking systems to accommodate identification of needs, and to improve

accessibility of the websites for use with adaptive technology.* That the Minister require "a knowledge of accessibility issues" to be a criteria for appointment to the Board of Directors of an Airport Authority.* That ATAC provide consumer members with the full details of Air Canada's new meal policy, and how dietary requirements may be accommodated.* That the Minister has committed to an examination and report on the progress in accommodations for accessibility in new construction at the 26 National Airport System (NAS) airports.* That the Minister look at the membership of ACAT and consider expanding it to include a consumer organization of deaf-blind Canadians. * That a review of training programs in the airline industry be conducted with the goal to improve training and delivery of issues on accessibility and disability.

NEW RESOURCES

New Website on Health: For up-to-date and free health information and research, doctors, health care workers and patients can access a new Toronto-based site of the Institute for Clinical Evaluative Sciences. Reports, newsletters and summaries of current medical research, as well as an archive section, are available. Most items are free. Visit http://www.ices.on.caa and click on “publications” and “informed” for newsletter articles.

New NIH Site for Seniors: This website provides health information for seniors, and also provides screen magnification, colour contrast options and speech capabilities. Visit: http://www.nihseniorhealth.gov

New NIH Website: A new website, from the National Institutes of Health, lists ingredients in more than four thousand household products, from shampoo to ant spray, and also gives possible health effects of more than two thousand ingredients. It lists specific chemicals in brand-name products, and provides links to manufacturers. Visit: http://householdproducts.nlm.nih.gov/

Talking Products: Talking Products Limited has invented talking labels to help those with low vision identify different objects of similar shape. “Talking Tins” come in the form of magnetic caps that sit atop steel tins. A short voice message can be recorded to identify the tins’ contents, use and date. By using a special adapter, these labels can also be used for other household objects, such as bottles, sprays and plastic containers. Visit http://www.talkingproducts.co.uk for more information.

Guide for Support Groups: This online guide, designed for support group leaders, consists of several “sessions” and provides information on such subjects as discussion topics, conversation starters and aspects of vision loss. Visit: http://www.lighthouse.org/supportgroup/discussion_guide/t_index.htm

Anger Management Resources: * Effective, eight part audio program, on cassette or CD: Visit http://www.family-counseling.com * Learn to manage anger at home. A private, quality online program: Visit

http://www.angermanagementonline.com * Anger a bigger problem than you think? Transform a life. Learn about the anger habit: Visit

http://www.theangerhabit.com

Publication on Children: “Helping Children Who Are blind”, by Sandy Neimann and Namita Jacob, launches the Early Assistance Series for parents, caregivers, teachers, health and rehabilitation workers. It is designed for those living or working with children in the first five years of life. Visit the Hesperian Foundation at http://www.hesperian.org for more information.

Updated Book on Adaptations: “Making Life More Livable: Simple Adaptations for Living at Home After Vision Loss”, revised by Maureen A. Duffy, includes chapters on living independently with vision loss, principles for adapting one’s environment (room by room), additional health conditions, and a resource guide. It dispels myths about vision loss. It is available for sale in large print from American Foundation for the Blind: phone: 1-800-232-3044; website: http://www.afb.org

Low Vision Resource Guide: This publication outlines major causes of eye disease, strategies and products for independent living, resources and organizations of interest. It can be downloaded free of charge from http://www.telesensory.com or a printed version ($5.00) is available by writing to: Low Vision Resource Guide, Telesensory, 520 Elmener Avenue, Sunvale CA 94085.

Guide for Caregivers: “Living With Vision Loss: A Guide for Caregivers” includes chapters on eye conditions, low vision aids, resources, facing change and adjusting to vision loss. Visit http://www.cnib.ca for more information.

Self-Defense Course: The Hadley School for the Blind offers a tuition-free, distance education course in safety and self-defense. Available in braille, large print and audiocassette, this course is specifically designed for people who are blind and vision-impaired. The course is comprised of nine lessons. New Access Technology Course: The Hadley School also offers “Adaptive Technology: Beginnings”, which provides information on selecting appropriate computer hardware, software and adaptive technology. This distance education course is suitable for blind and vision-impaired individuals, their families and teachers. It is available online, in braille, large print and on audiocassette.For more information on these courses, contact Student Services: phone: 1-800-526-9909; email: studentservices@hadley-school.orgg; website: http://www.hadley-school.org