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TABLE OF CONTENTS
Editorial: Protecting Canada's Health Care System
Independent Living and Medical Model of Disability
The Social Model of Disability Explained
My Name Is Greg Snider: I Have a Disability
Disabled People Speak on the New Genetics
Genetic Engineering is Disabling
Physician-Assisted Death
Reflecting on Fear of Blindness
Tales From the Blindness Closet
Canada's Medicare System: It's All About Equality
Quality Public Home Care and Home Support Services: It's All About Equality for Persons With Disabilities
Now, Medical Waiting Lists Include Health Care Reform
Ageism in Health Care Is Really Hidden Rationing
Boomers Beware: People With Disabilities Falling Between the Cracks
Disabled and Poor in Canada
Healthy People 2010 Goals Include People With Disabilities
An Overview of Common Eye Conditions
Eye Doctor Appointment Checklist
Unrestricted Vision
Differences in Brain Usage Among Braille Readers Shed Light on Relationship Between Thought,
Language
Eye Cells May Help Regulate Body’s Clock
Colour Perception in the Brain Unlocked
Recovering Vision No Overnight Blessing
Blind Women at Lower Breast Cancer Risk
The 12-Step Internet Recovery Program
Rejection Massively Reduces IQ
10 Tips for Mental Health
Fighting Mental Illness
Depression and Disability: What You Should Know
From Here to There: But How?
The Adjustment Process
One in Four on Disability Has Mental disorder
Feeling Fine? You Obviously Need Medication
Braille Medicine Labels Introduced in Korea
Talking Prescriptions Help "Read" Labels
Barriers are Toppling for Medical Students with Physical Disabilities
Is the Internet Creating a New Gap Between Physicians and Patients?
The Promise of Dolphin-Assisted Therapy
Thinking and Living Proactively with Diabetes
Health Club
Black Belt-White Cane
My Inner Voice
Deaf-Blind Children to Present Charter to government
A German Voyager's Bold Vision for Tibet's Blind
Highlights of Recent NFB:AE Activities
New Resources
Membership Form
Subscription Form
EDITORIAL
PROTECTING CANADA’S HEALTH CARE SYSTEM
By: 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 DISABILITY
By: 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 people
as a category of rejects, as people flawed on some aspect of their humanity. The medical mode of
disability 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 given
an 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 and
little 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. We
Are 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 a
depersonalization, 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 disease
Has 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 entirely
inappropriate 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 seek
The 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 all
individuals 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 to
live 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
Introduction
More 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 ourselves
The 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 participate
equally:
Medical model problem: Painful hands, unable to open jars, doors
Social Model Solution: Better designed lids, automatic doors
Medical Model Problem: Difficulties in standing for long periods
Social Model Solution: More seats in public places
Medical Model Problem: Unable to climb steps into buildings
Social Model Solution: Ramps and lifts in all buildings
Medical 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 problems
This 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 DISABILITY
By: 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 GENETICS
By: 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 Demands
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).
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 DISABLING
By: 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 DEATH
Disturbing 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-pluspage 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: [email protected]
REFLECTING ON FEAR OF BLINDNESS
By: 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 CLOSET
By: 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 EQUALITY
By: 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 Backwards
Statistics 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 Model
The 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 last
decade.
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 our
health 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 Plug
Around 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 at
the drop of a hat. As a result, the real-life needs of many people with disabilities are being ignored.
A Half-Million Shortchanged
It'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 health
support 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 In
This 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 Drugs
The 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 have
affordable 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 Century
For 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 Started
Canada'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 these
supports.
Four Fundamental Principles
The 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 federal
government 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 Disabilities
By: 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 of
Canadians 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 support
services 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 REFORM
Proposed Changes Collecting Dust; Ottawa, Provinces Blamed for Delay
By: 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 RATIONING
By: 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 bed
sores, 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're
elderly. 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 [email protected]
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 0G5
Tel: (613) 236-8977; Fax: (613) 236-2750; Web: www.ccsd.ca; Email: [email protected]
DISABLED AND POOR IN CANADA
Many Lack Post-Secondary Education, Employment
By: 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 to
maintain 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 [email protected] with the word "subscribe" in
the subject line.
To stop getting this e-mail letter, send an email to [email protected] 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 CONDITIONS
By: 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 departmentturned 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 speechwas 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 [email protected]
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 threedimensional 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 IQ
By: 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-esteem
2. Receive as well as give
3. Create positive parenting and family relationships
4. Make friends who count
5. Figure out your priorities
6. Get involved
7. Learn to manage stress effectively
8. Cope with changes that affect you
9. Deal with your emotions
10. 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: [email protected]
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, 800-2484344, 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 PROCESS
By: 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 DISORDER
By: 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 MEDICATION
By: 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" LABELS
By: 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 DISABILITIES
By: 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 of
a 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, who
practiced 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 technical
standards 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 difficulty
getting 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, PostTraumatic 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 DIABETES
By: 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 CLUBS
By: 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 CANE
By: 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 VOICE
By: 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 BLIND
By: 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
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* 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:
[email protected]; website: http://www.hadley-school.org