Transitio
n
BC COALITION OF PEOPLE WITH DISABILITIES

N0V7DEC. 1997

Aging and Disability
Aging with a Spinal Cord injury
Planning with Representation Agreements
AIDS and Aging
Latimer Decision Shocks Community

$1000 Winners
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62 Charities
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Cover photo, by David Low,
of his grandmother

transition

is published eight times per year by,
the Transition Publication Society.
Founding Editor
Richard A. Watson:
Editor
AnnVrlak
Contributing Editor
Geoff McMurphy

Layout

in this issue
Letters to the Editor.......................................................
Editorial
by Tina Matysiak.............................................................
Feature

Cover Design
Geoff McMurchy

Research/Proofreading
Eleanor Pasholko

Data Input
Teresa Kubaseck-Berry
Alternate Formats
Val Stapleton

Mailout

PusHPA Patel
Carol Dixon
Steve Wong;
; Mark Rogen

Voice Recording
Eleanor Pasholko

Partial funding for Transition is
provided by Human Resources
Development Canada, Thanks also to
our sponsors, advertisers, members
and subscribers.,

We welcome articles, graphics,
creative writing, et al (maximum
length for articles should bel 000
words). The editors reserve the
right to edit material.

Please send material to:
Transition Publication Society
c/o BC Coalition of People with
Disabilities
204-456 W. B roadway
Vancouver, BC V5Y1R3
875-0188 ‘TTY 875-8835
Fax 875-9227
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Canadian Publications Mail

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S

AIDS and Aging
by Tom Mountford..........................................................
Latimer Decision Shocks Community
1 7
BCACLand BCCPD.......................................................
Deaf Community Wins at Supreme Court..................
Action Needed to Protect Seniors
9
by Scott Adams..............................................................
Parents Launch Human Rights Action
by Carol Walshe............................................................. 11
Climbing the Mountain of Aging
by Barbara Alldritt........................................................... 17
Planning a Safe and Secure Future............................
24
Aging with a Spinal Cord Injury
by Coleen Heenan.........................................................
Planning with a Representation Agreement..............
News&Notice

s

Travel Info.....................................................................
Changes to CPP...........................................................
Government Backtracks on Education Cuts.............
Sunnyhill Health Centre for Children.........................
International News.......................................................
Inclusion Resource Network Closes..........................
Board Members Retire................................................. 22
Job Placement Program..............................................
Classified Ad...............................................................
Editorial Note: The views and opinions expressed within the pages of Transition are
not necessarily those held by the total membership or Board of Directors of the B.C.
Coalition of People with Disabilities. The material presented herein is meant to be
thought-provoking and to promote dialogue. Transition is your opportunity to share information and to introduce issues which you feel should be brought to the attention of
the disabled community and the general public. It is also an opportunity for disabled
individuals to display creative talent.
November/December 1997

Transition

______ letters
Thanks to Massie
Dear Editor:
In September 1997, Margo
Massie stepped down from
the BCCPD Board of Direc­
tors after eleven years of
service. I would like to wish
Margo well in her new life as
she takes up residence in
Victoria.
As a fellow advocate and
past board member of the
Coalition, I would also like
to acknowledge some of the
contributions that Margo
made to the disability com­
munity. When she first
joined the Board in Febru­
ary 1986, a BCCPD task
force was touring the prov­
ince to find out people’s
concerns regarding trans­
portation. Two years later,
during her first year as
BCCPD president, a major
goal became a reality when
lift-equipped buses were
introduced in Vancouver.
Margo was president of
the BCCPD for seven years.
Some of the achievements of
the organization during this
time include: implementapage 2 • November/December 1997

tion of Section 3.7 of the
building code, initiation of
the AIDS as a Disability
project, the beginning of
Advocacy Access, a program
which grew from two em­
ployees to the current ten,
the introduction of the
Mental Health Empower­
ment project, and support
for Sue Rodriguez during
the very difficult controversy
surrounding assisted sui­
cide.
Most recently, Margo
was a member of the advo­
cate team that successfully
lobbied for changes in legis­
lation with respect to GAIN
for Handicapped.
People know Margo as a
warm, genuine person with
a love of advocacy and a
deep commitment to people
with disabilities. She is
highly respected within the
disability community and,
together with her many
friends and colleagues, I
would like to say “thank
you.” Thank you Margo, for
your leadership and the
countless volunteer hours
that you dedicated to plan­
ning strategies, preparing
briefs, lobbying, managing
the business of the Board,
working on committees and
attending numerous meet­
ings with individuals, com­
munity groups, non-profit
society representatives,
government officials and
others.

Welcome to Vancouver
Island and best of luck—
wherever your future path
may lead.
Sincerely,
Ronnie Phipps
Duncan, BC

Latimer
Dear Editor:
In considering the death of
Robert Latimer’s daughter,
Tracy, people with disabili­
ties seem to have lost sight
of something that is outside
of being disabled. Our fight
for our rights in so many
areas has been long and it is
easy to be locked into a way
of responding to Tracy’s
death, as though we were
defending the rights of a
disabled person. This blinds
us to what we are really
defending: the right of a
severely suffering young
person to be treated with
the same compassion as
anyone else, regardless of
the fact that she is disabled.
I am familiar with the
condition of being in con­
stant, unendurable suffer­
ing. As a widow with two
young children, I was largely
bedridden for most of three
years. Constant pain when
one is a parent can be en­
dured if one can still carry
on. But unendurable pain
and inability to function is
something else. I realized I
could not be a parent to my

(continued on page 28)

E d ito r ia l

Transition

e’ve all heard the
looking at aging with a
statistics about
disability. One of these is
our aging popula­
understanding flow the
tion. According to
aging process interacts with
Health Canada, by the year
an existing disability. Some
2016, 16% of Canadians connections
will
have been
be over 65. And, becausemade.
we
For example, re­
are living longer, more and
search is showing that
more people will be joining
people who have Down’s
the ranks of the “middleSyndrome are at higher risk
old” (75-84) and the “oldfor developing Alzheimer’s
old” (over 85) in the coming
disease and are more likely
decades.
to develop symptoms at a
A statistic we don’t hear
younger age. Also, according
as much about, though, is
to the American Association
the increasing number of
on Mental Retardation,
the “aging and disabled.”
people who have been tak­
That is, people with disabili­
ing some psychotropic or
ties who are growing older
anti-seizure drugs for ex­
and older people who are
tended periods of time may
becoming disabled.
be more likely to develop
The National Coalition
conditions, such as tardive
on Disability and Aging in
dyskinesia or osteoporosis.
the United States has esti­
Overall, though, very
mated that approximately
little research exists which
85 million people in the U.S.
explores the relationship
will be aging with disabili­
between aging and disabili­
ties by the year 2000. This
ties. Does the aging process
is more than the rise of a
aggravate particular condi­
new “special interest” group;
tions? Are people with cer­
this is an issue which has
tain conditions more liable
relevance for all of us as we
to develop secondary dis­
continue on our way to
abilities as they age? This
joining the ranks of the “oldgap was highlighted for me
old.”
while I was searching the
It is also a development
World Wide Web to research
that demands cooperative
this article. I came across a
efforts between disability
web page titled “Cerebral
and aging organizations to
Palsy and Aging” (http://
ensure that the concerns of
WWW. geocities. com /Tokyo /
people aging with disabili­
7970/cpage.htm) and, in­
ties are addressed.
stead of the medical and
There are a number of
social information I was
issues that arise when
(continued on next page)

■

November/December 1997 • page 3

(Editorial, cont'dfrom previous page)
ments do. They also may be
expecting, there was a plea
discouraged from using
from the page owner for
services and assistive tech­
more information so that he
nologies that could help
could post it and share with
them maintain their inde­
others. Obviously, there is a
pendence and autonomy
need for more information
because many are geared
and it needs to come quickly
more to the needs of
for those approaching mid­
younger people. We also
dle and old age.
have to be aware that, as life
On the other hand,
expectancy increases, so
there is much more infor­
does the length of time older
mation available about how
people will spend living with
people can become disabled
these disabilities. This
as they age. Considerable
makes the promotion of
more appropriate and sup­
portive attitudes and serv­
ices even more critical.
There are many other
issues which need to be
considered. If more people
are aging with disabilities
and are living longer, the
need for more accessible
research exists explaining
(and affordable) housing and
transportation becomes
how vision and hearing
even a higher priority.
changes, arthritis,
osteoporosis, heart disease,
Income support is also
important for people with
stroke, etc. can cause im­
pairments among older
disabilities as they age.
Some people with disabili­
people. However, since these
ties have spent little or no
impairments are associated
time in the paid work force
with aging, they often are
dismissed as simply “part of
and, as a result, have no
getting old” and not consid­
employment pensions to
ered distinct disabilities. As
draw on when they become
a result, older people may
seniors. Another problem is
not receive the same accept­
personal care/support for
ance and support for their
people as they age. There Is
conditions as younger peo­
a long-standing myth that
ple with similar impairfamilies have abandoned

Overall, very little research
exists which explores the
relationship between aging
and disabilities.

Page 4 • November/December 1997

their oldest members. In
fact, according to research
done for Health Canada, 8090% of “dependent” seniors
are cared for by their fami­
lies, generally spouses and
daughters. If supporting
people to live in the commu­
nity and in their own homes
remains a priority, more
effective ways to assist and
support their caregivers
need to be found. This is
especially true when the
caregivers themselves are
elderly and disabled.
This is just a brief over­
view of some of the issues,
but I hope that it begins to
bring the common ground
between people with dis­
abilities and older people
into clearer focus. Issues
particular to each group
should continue to be ad­
dressed separately, but it
can only strengthen our
collective voice to work
together whenever possible.
In doing so, we can help
ensure that everyone can
enjoy an old age character­
ized by dignity, autonomy
and respect.
Tina Matysiak is a resi­
dential supervisor with a
local Community Living
Society and is also a gradu­
ate student in social work at
the University of British
Columbia. ~

Transition

AIDS.,
Aging

by Tom Mountford

There are many different
issues to look at when we
consider AIDS and aging.
Very little information exists
relating directly to the more
than 10% of people with HIV
infection who are over 50
years of age. Also, the pro­
gression from initial infec­
tion with HIV to full-blown
AIDS is a unique aging
experience. Along with the
successes of the new combi­
nation drug therapies,
comes the problems associ­
ated with a growing elderly
population disabled by
AIDS.
For example, the
behavioral risks of the eld­
erly have not been dealt
with adequately. A study
was done by scientists at
the University of California,
San Francisco and sup­
ported by the National Insti­
tute on Aging and the Na­
tional Institute of Mental
Health. It found that older,
at-risk heterosexual indi­
viduals are one-sixth as
likely to use condoms dur­
ing sex and one-fifth as
likely to have been tested for
HIV when compared with a
group of people in their 20’s
who take the same risks,
the most prevalent types of
behavioral risks reported in

this age group were having
multiple sexual partners,
having a partner with a
known behavioral risk or
having a blood transfusion
before the mid 1980’s.
Growing evidence exists that
many individuals are sexu­
ally active well into their
80’s and that they seldom
use condoms (DeHertough,
1994). However, our ageist
society refuses to believe
that older people are sexu­
ally active.
It was reported in the
New York Times (July 31/
97) that the cases of HIV
infection in women over 60
have nearly tripled in the
last ten years. The immune
systems of these women
have slowed down and they
often do not see themselves
at risk. A decade ago, the
majority of infections in
women were the result of
tainted blood transfusions,
while 69% can now be at­
tributed to heterosexual
contact. Since women are
often not diagnosed, or are
misdiagnosed, the statistics
available do not reflect the
extent of the increasing
problem. A surprising 13 of
257 persons (5%) 60-years
or older who died in a major
New York hospital were

found to be undiagnosed
HIV positive at the time of
their death (El-Sadr &
Gettler, 1995).
Older HIV-infected
individuals deteriorate more
rapidly than younger pa­
tients due to an accelerated
loss of CD4 helper T-cells.
Scientists from Geron Cor­
poration and the UCLA
(continued on next page)

transition
thanks.».
We’d like to thank the
following people for helping
out at our casino fundraising
this year. This is a big
commitment of volunteer
time and their support is
much appreciated.

Mark Rogen
Steve Wong
Brian Thomas
Mary Ayles

May Ng
Freda MacLellan
Carol Dixon
Linda Neumann
Tom McGregor

page. 6 • November/ December 1997

(AIDS and Aqinq, cant'd from previous paqe)
School of Medicine exam­
As baby-boomers in­
ined the immune cells of
crease the numbers of those
patients with late-stage HIV.
over 50, the care and sup­
They found that these cells
port of those surviving with
had apparently aged to a
HIV disease will be challeng­
level similar to those of a
ing health-providers and
normal 100-year-old person.
support organizations. The
It appears that the immune
support systems of older
system is working overtime
people with AIDS may not
during many years of fight­
include those who are able
ing the virus, resulting in
to provide the complex and
the premature aging of
intense care they need. Our
certain immune cells. Im­
elders are often a silent
mune cell senescence or
population and need advo­
aging is a newly described
cates. They must not be
feature of HIV disease. It
forgotten or excluded from
has previously been impli­
testing, education and serv­
cated in atherosclerosis, an
ices. Research is needed to
age-related cardiovascular
learn better ways to reduce
disease, and may have
their risk of infection and
implications for therapeutic
provide health care that
intervention in AIDS.
meets their needs. ~
Have a Disability? Need More Money? Disability Benefits from
BC Benefits, Ministry of Human Resources: How to apply

The booklet, describing how to apply for
full disability benefits (level II), is now
available on audiotape and on disk (ascii/
text-only version).
Order the audiotape and disk from:
Legal Services Society
Distribution
Publishing Program
Suite 1500-1140 Pender St.
Vancouver, BC V6E 4G1
Fax: (604) 682-0965

The audiotape version is also available on
loan from:
Crane Resource Centre
1874 East Mall
Vancouver, BC
V6T1Z1
Tel: (604) 822-6111
Fax: (604) 822-6113
© Legal Services Society, 1997

Latimer Decision Shocks Community
Joint statement from
BCACL& BCCPD
The BC Association for
Community Living (BCACL)
and the BC Coalition of
People with Disabilities
(BCCPD) are greatly con­
cerned that the use of a
constitutional exemption to
reduce Robert Latimer's
sentence to two years less a
day has put the citizenship
rights of Canadians with
disabilities into serious
question.
The unprecedented
leniency given Mr. Latimer
has signaled that we have
taken a giant step toward
creating two standards in
law-one for Canadians who
are deemed to be ablebodied and competent, and
another for people with
disabilities. Mr. Latimer's
original charge of first de­
gree murder had already
been reduced to second
degree murder, despite the
fact that he intentionally
murdered his 12-year-old
daughter Tracy.
We believe that the
extraordinary accommoda­
tion now given Mr. Latimer
has virtually eclipsed the
rights of his daughter and
has put the very lives of

many children and adults
living with disabilities at
risk.
What does this sentence
tell people with disabilities
about the value of their
lives? What does it say
about the vulnerability
many people with disabili­
ties now face should an
individual, charged with
responsibility for their care,
decide to end their lives?
Tracy Latimer was not
dying of her condition, and
there is no evidence that she
wanted to die. Whatever
motivated Mr. Latimer to
take it upon himself to kill
his daughter, it is critical
that society does not allow
someone's perceived pain or
suffering to become legiti­
mate grounds for murder.
Many of the assump­
tions about Tracy's quality
of life reflect society's limited
understanding about people
with disabilities generally
and the mythology that
surrounds them.
Not only did Tracy lose
her citizenship rights, but
we fear her murder will be
used as a lever to erode the
rights of others. ~

Comments from the
Council of Canadians
with Disabilities
"The victim's disability did not
confer upon her father the
right to end her life, nor should
it now confer upon the court
the right to reduce the manda­
tory sentence called for by the
conviction." Eric Norman,
Chairperson, CCD
"In reducing the sentence, the
court is clearly saying that it
has sympathy for the con­
victed murderer, and to a
chilling degree is validating
similar actions against people
with disabilities. It is also
lending support to the notion
that the killing of a person with
a disability is different from the
killing of any other person. "
Hugh Scher, Chairperson, CCD
Human Rights Committee

November/December 1997 • page 7

Travel Info
The Fall 1997 edition of
We’re Accessible: News
for Wheelchair
Travellers is full of travel
tips and tales. Stories
are included from
wheelchair users who
travelled to South
America, Austria and the
no-less-challenging
Ottawa. There are also
miscellaneous tips and a
guide to travel
information for people
with disabilities on the
Internet.

For more information,
contact Lynn
Atkinson, 32 1675 Cypress
Street,
Vancouver,
BC V6J 3L4, tel/fax
(604) 731-2197, E-mail
lynn@istar.ca

COMPREHENSIVE
UNIVERSAL
DESIGN SERVICES

Tel/TT: (604)873-0066
Fax: (604) 873-3145

page 8 • November/December 1997

Deaf Community Wins at
Supreme Court
In a historic and unanimous
decision, the Supreme Court
of Canada has ruled that
EC’s medical services must
include sign language inter­
pretation for Deaf persons.
The Court decided that the
refusal to fund this service
discriminated against Deaf
persons on the basis of
disability. The Women’s
Legal Education and Action
Fund (LEAF) and its coali­
tion partner, DAWN
Canada: DisAbled Women’s
Network Canada, intervened
in this case in April of this
year to address the effect of
the exclusion of sign lan­
guage interpretation on Deaf
persons.
EC’s courts decided that
there was no discrimination
because sign language
interpretation is not itself a
health care service. In a
stunning reversal, the Su­
preme Court ruled that a
cornerstone for effective
medical services is the abil­
ity to communicate with
one’s doctor. Communica­
tion cannot be separated
from health care. Therefore,
to the extent that (hey can­
not communicate with their
doctors. Deaf persons re­
ceive substandard health
care solely because of their
disability. Such differential
treatment of Deaf persons is

prohibited by the Canadian
Charter of Rights and
Freedoms.
The law in question did
not specifically target Deaf
persons for discrimination;
it simply did not mention
them. The Supreme Court
reiterated its earlier rulings
that discrimination need not
be intentional, but can also
arise as a result of “adverse
effects.’’ The Supreme Court
also acknowledged that
people with disabilities will
often be negatively affected
by legislation that appears
neutral.
The Supreme Court also
clarified when non-govern­
mental organizations must
conform to the Charter.
Ordinarily, the Charter only
applies to provincial and
federal governments. EC
had argued that because
hospitals—not the govern­
ment—provide health serv­
ices, the Charter could not
apply. The Supreme Court
dismissed this argument
and ruled that whenever
anybody carries out a gov­
ernment objective, for which
it is funded by the govern­
ment, that body must con­
form to the Charter just as
the government must.
(From Women’s Legal
Education and Action Fund
(LEAF) -

transition

Action Needed to
Protect Seniors
by Scott Adams
me Representation Agreement Act, the Health Care
and Care Facility Admission
Act, the Adult Guardianship
Act and the Public Guardian
and Trustee Act are all
100% unconstitutional. All
four Acts begin by giving
“the adult” more or less
complete authority concern­
ing his or her affairs, rights
and health care.
However, they end by
saying, in effect, that the
Office of the Public Guard­
ian and Trustee (OPGT)
can under certain circum­
stances override an adult’s
request or decisions. The
way it is explained, this
sounds reasonable. But in
practice, these four acts
and the existing Patients
Property Act allow and
condone the arbitrary
confinement and extortion
of our elderly citizens-and
some who are not so eld­
erly. Many of those who
are confined have abso­
lutely nothing wrong with
them except a hearing
problem or some other
minor disability which

makes them appear incapa­
ble to the casual observer.
My experience is that
with age comes wisdom.
Some of the things younger
people say, think and do
seems to prove the point.
The Charter and Consti­
tution make it clear that the
Patients Property Act is
unconstitutional. Our
courts should not have the
right to take away anyone’s
rights on the opinion of any

two doctors or psychiatrists.
Every Canadian must have
the right to refuse medica­
tion or treatment and to
leave a hospital or other
institution at any time.
I believe that the Action
Plan for Representation
Agreements from the Com­
munity Coalition for the
Implementation of Adult
Guardianship is the best
way to go. However, if the
continued on
next page

November/December 1997 • page 9

Transition

(Seniors, cont'd from previous page)
friends or relatives, good
lawyers, and money. But for
Act is not overruled, and
the vast majority, the whole
specifically, if our courts
appeal process is a sham.
retain the authority to take
So, I am tentatively
our rights away as they are
suggesting
that we hold
now doing, even a Represen­
peaceful rallies on a regular
tation Agreement will be of
basis, perhaps on the first
little or no help to most of
Saturday of each month.
us.
Also, we need a campaign of
We should not think
letter-writing, phone calls,
that the conventional legal
faxes and e-mails. Hope­
process will be of any help;
fully, the daily newspapers
our government and courts
and talk shows will also join
are not going to convict or
in and oblige our politicians
discipline themselves. Our
and courts to act on behalf
courts do award certain
of our elderly citizens.
individuals justice from time
I'd also like to clarify a
to time, but only to those
paragraph in my article that
with media attention or
was published in the June/
those who have strong

July /97 edition of Transi­
tion. A sentence in para­
graph one, page 12 states
that, "...our Charter, Consti­
tution, and the Patient's
Property Act allow the arbi­
trary confinement of our
elderly citizens." With the
exception of Section 33, the
"notwithstanding" section,
our Charter and Constitu­
tion are excellent.
If you would like to help,
meet with me or get more
information, please write to
me at:
Habitat Canada
Box #538 - 1027 Davie St.,
Vancouver, BC
V6E 4L2. -

A list of actual English subtitles used in films made
in Hong Kong:
• I am damned unsatisfied
killed in this way.
• Fatty, you with your thick face
have hurt my instep.
• Same old rules: no eyes, no
groin.
• A normal person wouldn’t steal
pituitaries.
• Damn, I’ll burn you into a BBQ
chicken!
• Who gave you the nerve to get
killed here?
• You always use violence. I
should’ve ordered glutinous rice
chicken.

(From The Sun, Saturday, Oct. 18/97).
page 10 • November/December 1997

• I’ll fire aimlessly if you don’t
come out!
• You daring lousy guy.
• Beat him out of recognizable
shape!
• I have been scared S_ _ _ tless too
much lately.
• I got knife scars more than the
number of your leg’s hair!
• Beware! Your bones are going to
be disconnected.
• The bullets inside are very hot.
Why do I feel so cold?
• How can you use my intestines
as a gift?

T

R

A

As you may be aware, the
federal government is mak
ing various changes to the
Canada Pension Plan as a
whole. One of the most
important changes is
around the eligibility criteria
for Canada Pension Plan
Disability Benefits (CPP
Disability).
The amount of CPP
Disability Benefits a person
receives is entirely depend
ent on how many years she
or he has worked and con
trlbuted to the plan. Cur­
rently, the period of time
that an applicant must ha
worked and contributed to
the Plan is two out of the

N

S

I

T

Changes to CPP
What You Need to Know'
last three years or five out of
the last ten years.
As of January 1, 1998
the period of time that a
person must have worked
and contributed to CPP will
be four out of the last six
years. This could mean a
number of people who are

I

O

N

currently eligible for CPP
Disability Benefits will not
be entitled to benefits.
This new legislation will
only effect the amount of
contributions and the period
of time in which the contri­
butions were made. It does
not change the disability
criteria. At this point, we
understand that there will
be no changes to the legisla­
tion around incapacity and
late applications.
If you are in this cat­
egory, and have any ques­
tions, please contact Cindy
Marshall or Ted Hobbs at
the BCCPD’s Advocacy
Access Program. «

Parents Launch Human Rights Action
by Carol Walshe, Citizen Staff Reporter
The parents of a Lake
Cowichan girl with a medi­
cal condition that requires
catheterization have
launched a human rights
complaint against School
District 79.
Kevin and Fiona Law­
rence maintain their daugh­
ter’s rights have been vio­
lated by the school district
and allege bureaucratic
procedures have taken
precedence over her health.
Six year old Kristi Law-

bifida, and requires cath­
eterization three times daily.
The process involves insert­
ing a sterile tube into the
urethra to allow her to
relieve herself.
The aid Kristi became
comfortable with in Kinder­
garten is certified to catheterize her. Her parents
wrote to Dr. Ed Armstrong
of SD 79 in June, outlining
Kristi’s medical condition
and asking that the aid she
was comfortable with con-

received no reply to the
letter.
Kevin Lawrence says he
and his wife had no idea
how the school district’s
hiring processes worked,
and assumed that the na­
ture of Kristi’s case would
guarantee special considera­
tion.
A district wide “cattle
call’’ at which teacher’s
aides and assistants are
given an opportunity to
choose assignments with
(continued on next page)
November/December 1997 • page 11

{Parents, cont'd from previous page)
particular students resulted
something as personal as a
in an aide with more senior­
catheterization on her.”
ity from the former District
Armstrong and Alastair
65 being assigned to Kristi.
Ferguson, special services
The new aide, a former
district principal, acknowl­
nurse, is fully qualified to
edge the role played by
amalgamation in the bump­
catheterize Kristi. Described
by her parents as a sensitive
ing of Kristi’s aide. Both
child unwilling to allow a
agree that if the job selec­
relative stranger to catheter­
tion process had been done
ize her, Kristi has stead­
according to the old school
fastly refused to allow the
district boundaries, the aide
new aid to perform the
Kristi had in Kindergarten
catheterization....
“Kristi has been severely
Lawrence
traumatized by years of
poking and prodding,” said
maintain their daughters rights
Fiona Lawrence. “It’s unre­
alistic to expect her to allow
have been violated by the
just anyone to perform

Kevin and Fiona

school district and allege
bureaucratic procedures have
taken precedence over her
health.

would likely have stayed
assigned to her....
Kevin and Fiona Law­
rence say the bureaucratic
aspects of the case don’t
interest them. They say
their primary concern is for
the health of their child.
“Seniority and the col­
lective bargaining process
are endangering our child,”
said Kevin Lawrence. “If she
is not catheterized regularly,
she could develop a bladder
page 12 • November/December 1997

infection and be in hospital
getting IV antibiotics for ten
days.”...
Armstrong says the
school district has some
discretionary powers, but is
ultimately bound by hiring
practices dictated by the
collective agreement with
CUPE.
“The situation is akin to
that found in a hospital,” he
said. “In a hospital, you
have no choice about which
nurse cares for you.”
Ferguson says he un­
derstands the concerns of
the family, but sees no way
around the terms of the
collective agreement. “I don’t
have the answer to this,” he
said....
Kevin and Fiona Law­
rence expect the human
rights suit could take up to
18 months to be settled.
“We don’t have that kind
of time. Kristi’s progress has
already been set back a
year. She was getting to the
point where she was begin­
ning to feel comfortable
about herself, and learning
to catheterize herself, but
now that’s all been set
back.”
The family is investigat­
ing further action against
the school district.
(from the Duncan Citizen, Sunday, Nov. 9/97). ~

Government
Backtracks on
Education Cuts
The provincial government
had planned funding cut­
backs for people with dis­
abilities seeking post-second
ary education. Lobbying by
BCCPD and others resulted
in a reversal of the decision.
The following is from a letter
sent to Tom McGregor at
BCCPD from the office of
David Mitchell, Manager of
Vocational Rehabilitation
Services.
I am writing to thank
you and your organization
for your valued input into
proposed changes to Voca­
tional Rehabilitation Serv­
ices (VRS) operational policy
over the recent past months
and to advise you that,
although we will not be
introducing any changes to
VRS policy at this time, we
are continuing to explore
opportunities to expand
community-based services
and through these, address
the growing demand for
services.
Over the past few
weeks, the Honourable Paul
Ramsey, Minister of Educa-

tion, Skills and Training,
has been actively lobbying
the federal government on
the issue of post-secondary
student debt. As a result of
these discussions, the Min­
istry has decided to put on
hold any changes to VRS
policy that would require
students with a disability to
seek Student Financial Aid
funding for post-secondary
education. This decision
may be reviewed after the
federal government has had
an opportunity to respond
to the many calls for greater
post-secondary student
funding assistance.
VRS is committed to
assisting people with dis­
abilities to access the goods
and services necessary for
education, skills training
and employment. Our goal
is to provide services to
more people next year than
we have this year. In order
to accomplish this, we will
need your help. It is our
intention to expand our
current partnerships wit h
agencies and contractors,

and to develop new services
for people with disabilities
as much as our current
budget and program allow.
We recognize there will
be some challenges as VRS
seeks ways to improve its
service delivery system.
(continued on next page)

Mothers who have lost
custody of their offspring
due to mental illness can
meet other Moms of like
mind and situation for
coffee meetings.
We share experiences
and interests and create
friendships. We hope
together to lessen the
burden of living without
our offspring.
We meet one-to-one with
Dawn and as a group.

For more information, call
Dawn at 871-0151.

November/December 1997 • page 13

(Government, cont'dfrom
previous page)
Some of the steps that VRS
will be taking over the com­
ing months include:
• Development of new
VRS and Student Serv­
ices Branch program
brochures that will
provide people with a
disability and service
providers with up-todate information on
what is available
through these two fund­
ing sources.
• VRS and its Community
Partners will work with
Special Needs Coordina­
tors in Colleges to en­
sure that students have
support to secure fund­
ing and other assistance
needed to participate in
post-secondary educa­
tion.
• The Ministry of Educa­
tion, Skills and Training
will be conducting a
formative evaluation of
VRS to determine the
effectiveness of our
delivery model and to
recommend changes to
improve the level and
quality of service being
provided.
Thank you for your
continued support. ~
page 14 • November/December 1997

HEALTH

CENTRE

FOR CHILDREN

The Sexual Health Resource Network (SHRN)
is a provincial Service which includes:
• Directory of Service Providers
• Training and Education
• Resource and Information Library
the main goals of the SHRN are:
• (o increase’ (he understanding of healthy sexual
development among Children and young people
with disabilities, and
• to ensure those who have* e*xperienced sexual abuse will
have* access to information about available services.

You can reach the

SHRN by:

Mail
Sunny Hill Health centre for Children
Sexual Health resource Network
Slocan street, Vancouver, BC
VSM 3E8
Phone:
I 8003311533 toll free across Canada)
16044341331General Information)
fax:
1604431 7395
E-mail:
mharber@sunnyhill.bc.ca

Transition

There are about 140 million disa­

bled children In the world.
97% of disabled children In poor
countries have no rehabilitation.
98% are without education.
90% ofdisabled children will not

survive beyond the age of five.
This horrible list of
statistics about disabled
children opened the The­
matic Day of the United
Nations Committee on the
Rights of the Child on Octo­
ber 6.
The members of the
Committee on the Rights of
the Child looked at the right
of disabled children to life,
development, inclusion and
self-representation.
There were two of us
who had been disabled
children; there were parents
of disabled children, and,
for the first time ever at
such a meeting, there were
two young girls from South
Africa who spoke about
their own experiences.
Pearl, deafened by riot­
ing in Soweto, spoke of her
loneliness and isolation
from her hearing friends.
Chantal told how she' and
her family had had to move
from their home to the city

Report on the Committee
on the Rights of the Child:
Disabled Children
so that she could get medi­
cal support, crutches and
an education.
They had both experi­
enced the stigma that is
attached to disabled chil­
dren and their families.
They had experienced the
poverty and difficulties in
just trying to lead an ordi­
nary life.
Family members spoke
with passion about the
stigma and fear which give
society the excuse to sup­
port eugenic laws of abor­
tion and sterilisation.
We all spoke about (he
huge numbers of disabled
children who are abused
and abandoned, whose
rights to life and inclusion

are violated on a massive
' scale.
The Committee set up a
working group which will
include representatives of
international disability
organizations. The Commit­
tee will monitor what coun­
tries are doing for disabled
children when they do their
regular work of looking at
member states’ reports on
their implementation of the
Convention on the Rights of
the Child.
They stressed that all
articles of the Convention
impact on disabled children
and must be monitored
accordingly. They have
issued a statement which
says that the violation of the
right to life was the worst
discrimination and abuse
faced by anyone. Their
statement calls for governmental
and legal action. But
above all they called for an
end to the stigma and a
Celebration of diversity.
It is up to all of us to
ensure that our govern­
ments take action and that
disabled children take their
rightful place within their
families and their communi­
ties.
(From Disability Awareness
in Action, November
1997, by Rachel Hurst ). ~
November/December 1997 • page 15

Your Membership is Valuable
helping agencies depend on government
funding and fear funding cuts. They need an
independent advocate like the Coalition to lobby
for their interests.

The B.C. Coalition of People with Disabilities is a
province-wide, non-profit organization run by and
for people with disabilities. We are an umbrella
group representing all people with disabilities and
our strength comes from membership support.

•

Will you join the Coalition today and help build
the voice for people with disabilities?

policy research and development on areas of
concern to you.

•

membership voting rights, if you are a person
witfl a disability.

As soon as you begin your membership, you'll
enjoy a number of benefits:

•

an organization that can lobby the government
on behalf of people with disabilities-too many

If you would like more information on BCCPD,
please feel free to contact the office at the address
below, or call (604) 875-0188.

t^^^ways thought that life after 50 would be meaningful

climbing the Mountain of Aging By Barbara Alldrit

Illustration by Maria George

and productive. I’d travel, write stories inspired by my life’s
experience and devote more time to good causes. In the
meantime, however, I had a list of goals to achieve in my
career, education, fitness and wilderness adventures. One of
these goals was climbing Mount Kilimanjaro.
Then three years ago, at 41, I was diagnosed with multi­
ple sclerosis. It was said to be chronic progressive MS which
has no “cure”, only drug therapy for acute symptoms. In
other words, I was told the odds were that my health and
functional ability would continue to decline, although I
should still have a near-normal life expectancy.
Assimilating this information, and my creeping func­
tional losses, forced me to come to terms with my own mor­
tality and the knowledge that my body was aging much
faster than normally expected (one naturopathic doctor told
me my biological age was 65).
I realized that if I maintained my achievement-oriented
mindset, and accepted my prognosis as presented, I would
have to use my declining energy to “fast track” those goals
still within my abilities. Alternatively, I could put my list
aside and simply try to live well each day, looking outside of
the conventional medical system for therapeutic approaches
that would restore my shatby genetics (for people with
tered sense of hope and
MS this figure is 25%). The
control in my me. I chose
remainder, however, is
the latter course.
related to environmental
My choice was influ­
factors, such as air and
enced initially by my socio­
water quality, to lifestyle
logical education which had
choices such as diet and
taught me that the determi­
exercise, and to social fac­
nants of health have more to
tors, such as whether one
do with lifestyle choices and
has an adequate income, a
social factors than with the
sense of purpose and a
offerings of the dominant
supportive network of family
“drugs-and-surgery” ori­
and friends.
ented medical care system.
These factors resonated
Statistically, access to
with memories of my mother
our “high tech” medical care
who was a lifelong devotee
system explains only 12 to
of what is now known as
25% of the collective health
“alternative” or “complementary
status of Canadians. An­
” medicine. She was a
other 12% can be explained
(continued on next page)

November/December 1997 • page 17

T

R

A

N

S

I

T

(Mountain, cont'dfrom previous page)
only essential to recovery
traditional healer who un­
from injury and chronic
derstood the healing powers
illness, it is one of the best
of foods, herbs, hot baths
anti-aging strategies as
and vinegar packs, as well
well—and that it is never too
as the power of love and
late to start. Getting regular
prayer. Her wisdom and
exercise for strength, flex­
skills were often the first
ibility
and aerobic capacity
option for many with aches
is more challenging with a
and pains in the small
Mennonite farming commu­
nity where I grew up.
My mother insisted I
take a tablespoon of cod
liver oil and a handful of
vitamin and mineral rich
stress
kelp and malt tablets every
reduction,
day no matter how foul they
tasted to me. Science is now
proving that daily supple­
mentation with a vitamin
and mineral tablet boosts
having
the immune system, and
that a deficiency of the
team
omega 3 essential fatty
acids, abundantly present in
disability, but not impossi­
ocean fish (including the
ble,
as I am learning.
infamous cod liver oil) and
My mother believed in
flax seeds are a factor in
the redemptive powers of
many debilitating chronic
the practice of hope, love
illnesses including MS.
and prayer. Many scientiflc
My mother insisted that
studies are now demonstrat­
helping her plant, nurture
ing the health restoring
and harvest our five acre
effects of stress reduction,
garden (which also provided
meditation, support groups,
an abundance of organic
creative visualization, spir­
vegetables) was good for
itual beliefs and simply
both of us. Science is con­
having faith in one's health
tinuously validating the fact
care team and therapies.
that regular exercise is not

Many scientific studies are
now demonstrating the health
restoring effects of
meditation, support
groups, creative visualization,
spiritual beliefs and simply
faith in one's health
care
and therapies.

page 18 • November/December 1997

I

O

N

We need to redefine
health care to include all
these elements: therapeutic
choices that put the indi­
vidual, not the expert, in
control; a clean environ­
ment; a secure and ad­
equate income; and, a soci­
ety structured to value its
members and provide a
sense of connection and
purpose.
I hope to see the day
when my neighbourhood
health clinic will provide
nutritional balancing, thera­
peutic touch, massage,
energy balancing, yoga
classes, and psychological
and spiritual counselling,
along with antibiotics and
wound stitching. Right now,
this is just a pipe dream,
but at one time, so was
universal access to hospi­
talization and medical care.
Collective action changed
(hat.
I don’t know what the
future holds, but I still plan
to climb Mt. Kilimanjaro one
day. My mother always said
that luck favours prepared
ground, so it’s up to me to
use the power of my own
thoughts and actions to
redirect my health. She also
said that every problem has
a solution. And if my own

T

R

A

N

S

I

T

I

O

N

legs won’t cany me up
Mount Kilimanjaro, there is
always the option of hiring
porters to do the job for me.
In any event, that’s where 1
plan to be for my fiftieth
birthday on March 1, 2003.
Whatever my future
holds as 1 approach my
second half-century, 1 be­
lieve the lessons of my dis­
ability have given me the
grace to accept the inevita­
ble aging of my body earlier
than many. It has also
taught me that I am in
control of making that proc­
ess as painless and fulfilling
as possible. ~

Network Closes
The Inclusion Resource Network (IRN) is no longer available for
consultative services for educators and parents of children with
special needs. After three years of operation, the BC Ministry of
Education has decided not to continue funding this service.

However, the BC Teachers’ Federation will continue to update
the IRN Homepage which includes the opportunity to browse
the IRN database. Watch for the Elementary Modified and
Adapted Materials database to also be online. After October
1997, the IRN database will not be updated.
Some of the materials that were distributed through the IRN will
be available for purchase through the BCTF Lesson Aids
Service. See their online catalogue through the BCTF’s Web
site (www.bctf.bc.ca).

November/December 1997 • page 19

Planning a
Safe and
Secure
Future

page 20 • November/December 1997

Many people haven’t heard
of the Planned Lifetime
Advocacy Network (PLAN).
We’re often asked, “Who is
PLAN?” and “What do you
do?” Maybe the best way to
answer these questions is to
tell a story. Consider the
story of John.
John was a healthy and
active boy living in the lower
mainland of B.C. In addition
to the many interests young
boys have John was a
mountain bike enthusiast.
John rode his bike everywherc. No hole was deep
enough, no curb high
enough.
One (lay during John’s
12111 year, he collided with a
transport truck.,John sus­
tained severe head and
spinal eord injuries. John’s
injuries were so severe
spent th(* r<‘st of his adoles­
cence in Sunny Hill Hospi­
tal. He was unable* to speak
or move any part of his
body, except bls month, and
was completely dependent
on others for all of his care.
His family, overwhelmed by
the loss of their healthy son,
and their inability to com­
municate with him, eventu
ally stopped visiting. John

became increasingly lonely
and isolated.
Fortunately, a visitor to
the hospital noticed John
and told PLAN about him.
Members of PLAN met with
John and, shortly thereaf­
ter, PLAN “adopted” John.
We developed a circle of
caring and committed indi­
viduals, enrolled John in
school again, and eventually
moved him back into the
community. PLAN has made
a lifetime commitment to
John—to advocate for him,
to monitor his quality of life,
and to maintain his circle of
support.
John is now 26 years
old. He enjoys laughing,
joking, loud music and
watching sports, especially
hockey. His great gift is a
winning smile and his abil­
ity to draw people into a
relationship with him. With
Plan’s help, John has
affected many people and in
return many people have
affected him. This is one
example of what PLAN does.
PLAN works with fami­
lies who have a relative with
a disability. The group was
formed in 1989 by a group
of senior parents of adult

children with disabilities.
These parents recognized
that the closure of institu­
tions and the re-introduc­
tion of individuals with
disabilities back into com­
munity meant many parents
were the primary supports
for their adult children with
a disability. These parents
also acknowledged their own
aging and realized they
would need a plan to ensure

Most importantly, we develop
and maintain circles of support
which surround the individual
with a disability with caring
and supportive people.
a safe and secure future for
their son or daughter with a
disability when they were no
longer around to care for
and advocate for them.
These parents also
shared a common desire—to
establish a system of sup­
port independent of govern­
ment whereby the care
provided to their sons and
daughters would not depend
upon the goodwill of politi-

cians. They also believed
service providers need to be
regularly monitored and
held accountable, and that
those attempting to hold
government accountable
could not themselves be­
come reliant upon govern­
ment for their own financial
survival. As a result, the
founding members of PLAN
resolved to provide services
for adults with disabilities
without the financial sup­
port of the government.
PLAN is unique in other
ways too. We are the only
organization which plans for
the future. PLAN designs
and offers services to pro­
vide a safe and secure fu­
ture for individuals with a
disability. We advise families
on will and estate planning,
assist in identifying and
securing housing options,
including home ownership
for an individual with a
disability. Most importantly,
we develop and maintain
circles of support which
surround the individual
with a disability with caring
and supportive people.
Plan monitors the quality
of services provided to an
individual with a disability

and advocates on his or her
behalf when necessary. And
we will provide these serv­
ices for the life of the indi­
vidual with a disability. This
is just what those senior
parents wanted when they
first met in 1989.
PLAN has grown over
the years. We now provide
advice and assistance to
over 3,200 families across
Canada. We have 450 PLAN
associates and maintain
circles of support for 42
individuals. And these num­
bers are growing daily. If
you are aware of a family
who might benefit from
PLAN’S expertise and serv­
ices, give them our phone
number.
You may also consider
purchasing a copy of our
book. Safe and Secure. The
book outlines six steps
relatives should consider, as
well as seven worksheets
and an appendix of re­
sources for securing the
future of an individual with
a disability.
For more information,
contact PLAN at 10IB 3790 Canada Way,
Burnaby, BC V5G 1G4 or
phone (604) 439-9566. «
November/December 1997 • page 21

Transition

Board Members Retire at AGM
\t our AGM this year, two
long-time BCCPD Board
Members resigned. Margo
Massie and John Maddison
have both been with the
BCCPD for so long, during
so many important times,
they will be greatly missed.
In the fall of 1979, John
Maddison was introduced
to the BCCPD through his
work with Jill Weiss on
transportation issues. This
work led to the creation of
the handyDART custom
transit service. During his
many years as a Board
Member, John has held
various positions on the
Executive Committee. He
was also a member of the
Human Rights Committee
of the Coalition of
Provincial Organizations of

page 22 • November/December 1997

the Handicapped, now
known as CCD.
John will continue his
work on transportation
issues as Chair of
COMPACT, the Committee
to Promote Accessible
Conventional Transit, and
as a Board Member of
Pacific transit Cooperative.
John's wisdom and
clarity of thought-and
that distinctive voice-will
be missed by all of us.
Ronnie Phipps' Letter
to the Editor in this edition
is a very fitting tribute to
our other retiring Board
Member, Margo Massie.
Margo has filled numerous
roles at BCCPD over the
years, and has been a
tireless and dedicated
voice for people with

disabilities on many issues.
BCCPD was honoured to
have her as Chair for many
years and, through her
work and sincerity Margo
became a respected figure
both within the disability
community and
government.
Perhaps most of all, we
all remember Margo's
warmth and humour, and
wish her all the best in her
well-deserved retirement.
We know that Margo will
continue to be involved in
the community in her new
home on the island.
The BCCPD Board of
Directors would like to
thank John and Margo for
the years of support
they've given us and the
disability communities.

Mission Statement
The BC Coalition of People with Disabilities was founded
upon the belief that:
people with disabilities want and are entitled to equal

opportunities in all the activities and privileges that
other Canadians take for granted,
full Inclusion of people with disabilities within our

JOB PLACEMENT
PROGRAM
Are you looking for work? Do
you have any type of disability?
Our program has been
developed to assist you in
securing quality employment or
reaching other vocational goals,
such as further education.

communities is a fundamental necessity for a diverse,

We provide funding for
education and transportation.

product ive and economically vibrant social

WHO QUALIFIES?

environment, and

•

people with disabilities have the right to expect
equality, fair treatment and respect

•

Because of these beliefs, the purposes of the BC Coalition
of People with Disabilities are;

to use educat ion, advocacy and special projects to

WHAT ARE THE BENEFITS?
•

work toward the dissolution of the physical,
attitudinal and systemic barriers in our society that

deny us equal opportunities,

to provide a st rong coherent voice for the cross­

•
•
•
•

disability communities in B C.,

to share information with and support other self-help
disability organizations with common goals, and

to carry out our mission and projects within a self­
help model.

Anyone who has a barrier to
employment such as a
disability.
You must live in the New
Westminster or Burnaby
Area.

•

Professional Resume and
Career Counselling
We find your next employer.
Funding for education.
Funding for transportation.
Funding for a special
modification to the worksite
you may need to do your
new job.
All services are free!

WHERE?
BC Rehabilitation and
Recovery Centre
#208 - 88 10th Street
New Westminster, BC VSM 6FI8
Tel: 520-3468 Fax: 520-6240

November/December 1997 • page 23

Transition

Aging
with a
SPiNAL
CURD
Injury
by Coleen Heenan. MS, RN

page 24 • November/December 1997

Aging with a spinal cord
injury (SCI) is a relatively
new occurrence. Due to
highly technical and devel­
oped health care, a person
with a SCI is not only ex­
pected to survive the early
years, but is in the unique
position of having to cope
with growing older. For the
first time, this population is
experiencing aging-related
concerns. Now that people
are not dying from medical
problems related to their
disability (renal problems
and pressure areas), they
are experiencing problems
related to normal aging, as
well as problems related to
aging with a disability.
Aging is not necessarily
a medical problem or a
sickness that needs to be
treated. It is a new stage in
life and with this new stage
comes changes in physical
function and changes in
people’s lives. Planning for
changes in lifestyle and care
needs can help maintain a
sense of control and ease
about the future.
People are noticing
physical changes the longer
they live with a SCI. Fatigue
and chronic exhaustion, for
example, associated with

reduced energy are common
complaints. People are
finding they need to pace
their daily activities and
often need to reduce the
number of activities in a
given day. This might mean
rescheduling daily activities
so important things are
done earlier in the day,
cutting back hours of work
or getting assistance with
personal care so there is
energy left over for spending
time with family and
friends. There may be a
need to re-think their dayto-day lives and focus on
putting energy into the
things that are most mean­
ingful.
Muscle pain and joint
pain are also common com­
plaints. Wrist and shoulder
wear-and-tear from years of
doing adapted repetitive
tasks, such as pushing a
wheelchair, can affect func­
tion. Many people find rest
and change in routine help­
ful in relieving pain. Doing
things differently, however,
may mean altering equip­
ment and mobility tech­
niques to decrease discom­
fort and prevent further
problems. For example,
switching to a power chair.

TRANSItion

a van with a hydraulic lift, a
sliding board for transfers,
or a manual chair for those
who previously walked.
Adapting to age-related
changes and decreased
function is not easy for
people to accept. Change
that results in an altered
lifestyle may Increase emo­
tional distress. An individu­
als’s sense of self-reliance
can be threatened by a fear
of loss of independence. In
addition, people may have
feelings of failure or “giving
in” to the disability. For
others, their quality of life
becomes the issue.
Declining function and
energy can threaten a life­
time of self-confidence. As
all of us age, we become set
tn our ways, less tolerant of
change in routine, environ­
ment and companions.
Therefore, as physical func­
tions decrease, we resist
new equipment, new proce­
dures, new ways of doing
old things at a time when we
need to be open to making
changes in our way of doing
things. Understanding the
importance of making
changes early can increase
people’s quality of life. Find­
ing new ways of doing old

things requires great cour­
age, but allows people to do
more with less pain, less
fatigue and more mobility,
resulting in more independ­
ence.
A person’s level of per­
ceived control over their life
also correlates with meas­
ures of well-being. Research
has found that those living
with a disability for twenty

or more years perceived
their lives to be as good as
the able-bodied population.
Environmental factors
can also play a significant
role in how well people age.
These factors include in­
come, transportation, family
and interpersonal supports,
and availability of assist­
ance for personal care needs
(continued on next page)

November/December 1997 • page 25

T

(Spinal Cord Injury, cont'd
from previous page)
if required. The majority of
people with physical dis­
abilities are on fixed in­
comes, so growing financial
demands are a serious
concern for individuals
trying to maintain inde­
pendence. For example,
shoulder pain and weakness
from years of overuse may
lead to a decreased ability to
maneuver a manual wheel­
chair; however, a power
chair is an expensive alter­
native. Increasing economic
constraints can be another
worry for people trying to
adapt to changes accompa­
nying the aging process.
Dealing with disability
takes time and energy. With
aging comes a decrease in
both. Priorities must
change. People who have
survived many years with
disability are not just lucky,
they are capable, resource­
ful, knowledgeable individu­
als who know their bodies
and take responsibility for
themselves.
(Coleen Heenan is the
Canadian Coordinator of BC
Rehab's Spinal Cord Pro­
gram). ~

page 26 • November/December 1997

S

'

Planning with a
Representation Agreement
many people think about
making a will—taking care
of their affairs after they
the—but they don’t plan for
what might happen if they
are alive, but unable to
manage their affairs.
Powers of attorney,
which many people make,
only apply to legal and
financial matters. They do
not cover personal and
health care decisions such
as consent for medical treat­
ment or admission to an
extended care facility.
Representation agree­
ments do. They are a new
type of legal document in
B.C. that allow adults to
name someone they trust to
represent them if they
should need help managing
their affairs. The agreements
are flexible, allowing repre­
sentatives to help out tem­
porarily, permanently, or on
an as-needed basis. The
agreements can also Include
statements of your beliefs
and priorities, or important
instructions.
Don Beddows, a senior
from White Rock, Is one of
the volunteers with the new
Representation Agreement
Resource Centre, currently

housed at BCCPD. Don
meets with individuals and
groups to give them infor­
mation about representation
agreements.
“I used to be immortal
and invulnerable,” explains
Beddows. ‘‘But once you get
past 70, life gets to be quite
dangerous. It is vital to be
able to pre-plan not just
wills and funerals, but the
sorts of care we need and
decisions that might have to
be made on our behalf.”
For people who have
extensive contact with the
health care system, it is
particularly important to
appoint a representative for
health care. Although many
people do make written
plans such as living wills,
pieces of paper are not as
effective as a person you
trust, who can be on the
spot talking to the medical
staff when you are unable to
speak for yourself.
Your health care repre­
sentative has legal access to
medical records and legal
“clout” in decision making.
Your representative can ask
questions, demand explana­
tions, explain your wishes
and defend your rights.

transition

B.C.’$ Representation
Agreement Act has not yet
been proclaimed, but people
are already making and
using representation agree­
ments now, and getting
them ready for when the law
is proclaimed.
The Representation
Agreement Resource Centre
was founded by the Com­
munity Coalition for the
Implementation of Adult
Guardianship Legislation
which includes BCCPD, the
BC Association for Commu­
nity Living, the Alzheimer
Society and the Council of
Senior Citizens Organiza­
tions.
The Resource Centre is
a volunteer-driven non­
profit society which assists
people to make representa­
tion agreements. The Centre
offers workshops for com­
munity groups, and training
for community advocates
and peer counsellors on how
to help others to make
representation agreements.
For more information on
the Representation Agree­
ment Resource Centre,
contact Donna McMahon or
Christine Gordon c/o
BCCPD at 875-0188. «

Want to start your own multi-million dollar
business, plus put people to work? My wife and
I have invented and patented a padded "Street
Hockey Suit." With this Suit, plus wearing elbow
and knee pads, helmet and cup-and your
favorite NHL team jersey-you will be fully protected. You can use a regular
hockey ball without fear of bruises and welts.

Because I have a disability, we are not able to start our own business. So,
we are selling the patent for the "Street Hockey Suit." Part of the proceeds
of the sale will go to the BC Coalition of People with Disabilities. A proto­
type has been made and tested-the kids love it.
Please contact Joanne and David Gray, phone or fax (604) 572-8539.

THe

BUSH

To Moses

tell me
Birkenstocks

November/December 1997 • page 27

Transition

Norma's will continue to accept
new ads as usual by phone, letter
or email. These will be posted to
the Internet as soon as received.
Ten dollar ads will appear in the
next printed issue, so, in effect,
one-month ads will be valid for up
to three months.
To encourage email ads, I am
offering free one-month ads
(Internet only—print version not
included) throughout this period.
NIDEC’S ads will continue to be
free for viewing on the internet. Our
address is http://www.lights.com/
classifieds/This list will be
updated every Thursday and so will
remain an up-to-date service.
NIDEC is a service dedicated to
helping people with disabilities buy
the equipment they need at a
reasonable price, or sell/exchange
used disability equipment. You can
contact NIDEC at Norma’s
Independence & Disability
Equipment Classifieds (NIDEC),
269 Carleton Dr., Saskatoon, Sask.
S7H 3P1, Tel/fax: (306) 955-0071,

Classified Ad
For sale; electric,
adjustable bed. Remote
controlled. Double size.
Excellent condition; very
clean. $800. Call 985-3730
(evenings).
page 28 • November/December 1997

(Letters, cont'd from p. 2)
children, nor could I endure
the untreatable pain (my
doctors had made a decision
not to do further surgery). I
planned my own death to
liberate me and my children
who could then be adopted
and have a chance for nor­
mal lives. A sudden emer­
gency changed my plan and
I was rushed to hospital. My
doctors then decided they
would do a further drastic
operation. Due to unantici­
pated complications, I am
now permanently disabled,
but I am free of all pain. I
now have a worthwhile life.
Tracy’s situation was far
worse than mine and for so
many more years of her
short life. When one has
experienced the pain that I
did, then one is able to
speak with the knowledge of
what she was going
through. It is true that more
community support could
have helped Tracy’s coura­
geous parents, but Tracy’s
worsening condition could
not be alleviated by further
medical intervention.
I don’t doubt that her
loving parents knew, with­
out her being able to talk,
that it was her wish to cease
her anguished living. It is
true that our compassion is
aroused when we think of
her and hear the details of
her life. It is aroused, not
because she is disabled, but

because of her unbearable
life. It is simply ignorance
that equates suffering with
disability. This is not neces­
sarily true, as I know so
well.
Yours truly,
Daphne Naegele
Vancouver, BC

Dear Editor:
We should all be grateful to
the Saskatchewan jury who
convicted Robert Latimer for
the murder of his 12 yearold daughter Tracy. That
conviction not only affirmed
that all members of our
society have intrinsic
value—in the end, it meant
that Tracy died a “citizen.”
We at the BC Associa­
tion for Community Living
do not underestimate the
obstacles many parents of
children with disabilities
face in attempting to secure
opportunities, support
services, and an acceptable
quality of life for their sons
and daughters.
However, regardless of
Robert Latimer’s personal
feelings or motivations at
the time, it is clear that he
murdered his daughter
without her consent. Acting
entirely outside the law, he
took away Tracy’s funda­
mental right to live. The fact
that Tracy lived with a dis­
ability does not, and should
not, lessen the crime.

T

R

A

We will never know
what Tracy Latimer would
have wanted for herself. But
we assume we know.
We assume her needs
outweighed her gifts. We
assume her pain outweighed
her joy. We assume that
because she could not
speak for herself she was
neither intelligent, nor
thoughtful, nor talented.
And perhaps, most disturb­
ing of all, we assume her
death was a liberation.
Viewed this way, is it
not we who are confined by
our severe Ignorance and
profound misunderstanding
of who Tracy Latimer was?
Is it not we who suffer in
our limited understanding of
who she was and who she
may have become? And in
the wake of her death, is it
not our ability to grow and
reach for the stars that is
now truly at stake?
Should Latimer and his
supporters now be success­
ful in their bid to weaken
Canada’s existing murder
laws, not only will Tracy’s
citizenship be put into ques­
tion—so will the citizenship
of all those Canadians who
live with disabling condi­
tions.
We should all think
twice before allowing Tracy’s
murder to be used as a lever
to erode the rights of others.
If we don’t, the unfortunate,

N

S

I

T

legacy of Tracy’s death will
be to have put any one of us
who experience pain or who
require multiple surgeries at
the individual mercy of
those who are charged with
our care and well being.
Our collective challenge
now is not to find a way to
make murder easier. The
challenge is to change those
attitudes and assumptions
that are based on lack of
knowledge and fear of differ­
ence. We must be willing to
discover and learn about the
abilities, dreams and wishes
of those who have been
labelled profoundly handi­
capped. We must be willing
to put an end to the isola­
tion and lack of support
experienced by people with
disabilities and their fami­
lies, and we must be willing
to ensure that those who are
vulnerable enjoy the same
fundamental human rights
afforded all citizens in this
country.
Without commitments
such as these, we will con­
tinue to put those who are
deemed less valuable at risk
and we will have lost a
tremendous opportunity to
transform perceptions based
on “pity” into actions based
on “respect.”
Anita Dadson, President
B.C. Association for
Community Living
Vancouver, BC «

I

O

N

resources
women with Disabilities
We came across some
information about a doctor who
is doing research around
menopause, osteoporosis and
women with disabilities.
Unfortunately, we heard about
her just as Transition was going
to print.
If you would like more
information in this area, please
contact: Dr. Sandra Weiner,
MD, 8484 16th Street, Suite
707, Silver Spring, MD 20910,
Tel: (301) 587-6396, Fax: (301)
585-5467, Email:
welnersmd@aol. com

People with
Developmental Disabilities
In July 1996, the BC
Association for Community
Living held a Forum on Aging
and People with Developmental
Disabilities. A 30-page report,
including recommendations, is
available.

For information, contact
BCACL at #300 - 30 East 6th
Avenue, Vancouver, BC V5T
4P4, Tel. (604) 875-1119, fax
(604) 875-6744.

November/December 1997 • page 29