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Fast cars and youthful exuberance are often a dangerous
combination. In 1974, Norm Haw was 20 years old and the proud owner of
a 1967 Triumph GT6 -- a sporty little British car built more for the speed-friendly
European autobahns than for the twisting, winding roads of rural
British Columbia. It was that combination that led to Norm's crash and
to his spending the remainder of his life unable to walk, using a wheelchair
to get around. This is the story of a man who is living proof that a traumatic
injury, in his case a broken neck, does not have to keep a person from
fulfilling his life's goals. The crash changed Norm's life, and even his
direction. But did it change the man?
I first met Norm Haw in 1995. Working as we did in similar
circles, his name had come up in conversation on many occasions, but we
had never met. His reputation was such that I recommended him to lead
an employment pilot project being initiated by the federal and B.C. provincial
governments. I knew that the British Columbia Paraplegic Association (BCPA),
of which Norm was the Executive Director, had the credibility and the
networks the project would need to succeed.
When I first met Norm, his eyes immediately caught my attention.
A rich indigo blue, they reflected an enthusiasm and a genuine caring
that I came to learn define Norm's approach to life. It has been said
that the eyes are the windows to the soul. Norm's eyes shone with a self-confidence
that comes from years of experience. He had pretty much seen and done
it all, as far as disability issues were concerned. And yet, more than
twenty years later, he remained unjaded.
Sitting across the table from him during our first meeting
I recognized a true gentleman, a man committed to a cause greater than
self. For Norm, working with people to help them rebuild their lives wasn't
simply a means to pay the bills -- it was a passion.
Some people are uncomfortable with the word "passion,"
particularly in the context of work. They may feel that passion lessens
a person's ability to be objective, clouds one's judgement and that "commitment"
is a more appropriate sentiment for the workplace. But the people I admire
the most are the ones who are passionate about their work. Passion hasn't
clouded their vision; it has clarified it. It hasn't taken away from their
ability to do a good job; it has added to it.
Norm is a pragmatic optimist. When it comes to testing
new approaches to serving clients, he'll make every effort to ensure a
project succeeds. If it does -- great. If one approach doesn't work, he'll
try something different. He doesn't give up. When all is said and done,
Norm's goal in whatever he does at work is to improve the quality of life
for people with disabilities.
Norm is a man who doesn't waste time skirting issues. Within
minutes of our first meeting, which included almost a dozen representatives
from government, industry and the NGO community, we were deep in conversation
about the merits of the project. Norm's passion was infectious. When he
spoke about helping others, everyone in the room bought into it. This
is perhaps Norm's greatest gift: his ability to engage others, to inspire
them to take ownership of an issue. He does it in a non-threatening way,
using tact and diplomacy. He has no need to prove himself -- he did that
years ago, as a counsellor helping hundreds rebuild their lives after
they experienced a spinal cord injury.
Robb Dunnfield, an internationally acclaimed painter and
former client, has known and worked with Norm for more than 20 years.
"He really is very humble and he goes along in life very quietly," he
says. "But he gets so much accomplished, he knows how to delegate and
he knows how to inspire a team of people."
Norm is always quick with a smile or a laugh. Being passionate
doesn't mean that he takes life, or himself, too seriously. During meetings
he stays focused on the issues, but at the end of a meeting he'll be the
first to suggest we go out for a drink to unwind. At that point the conversation
inevitably turns to his latest "fish story." Norm's two great loves outside
of work are family and fishing, and to truly understand the depths of
Norm's passion, one only has to learn the lengths to which he will go
to catch a fish -- only to release it!
Edie Ehlers, manager for Rick Hansen's Man-in-Motion World
Tour, has worked with Norm for more than a decade. She describes him as
"a hardworking, responsible person, a good friend and a person who always
has solid advice."
Norm has spent his entire life helping others. At 48, he
has no regrets about the paths he has chosen. As you get to know Norm
you realize that he is genuinely concerned about people. And every day
he turns this caring into action.
"People can be happy with so little"
To understand the origins of Norm's sense of community
responsibility, you need only look at his upbringing -- his family and
his environment. Norm was born on April 29, 1952, the eldest of three
boys -- each born five years apart. His mother, Iris, and father, Earl,
are both from Saskatchewan. Iris moved to Kelowna with her family as her
father headed west to search for work. Norm's father, already smitten,
followed. After they married, Earl and Iris, also in search of work, moved
to Quesnel, a small town in northern British Columbia.
Norm was raised with the belief that being a good neighbour
means more than simply lending a hand with the lawn or watering the plants
when the neighbours are away. When Norm was growing up, a neighbour was
part of an extended family. Norm's desire to be a "good neighbour" has
defined much of his life.
"Quesnel was a relatively small community at that time.
It was a really great place," he says. "Everybody was so close. If somebody
needed an addition to the house, all the neighbours helped. If somebody
knocked down a moose, all the men would go out at night and bring it in
and share the meat." He adds that the Quesnel area was ideal for fishing
and hunting, and he grew up loving these activities. He also enjoyed a
range of sports: he played basketball, soccer, rugby, badminton and ice
hockey.
In 1971, at age 19, Norm decided to spend the year following
high school graduation travelling through Europe. The trip had a profound
impact on Norm, one that has lasted to this day. It expanded his horizons.
The people he met and the places he saw particularly affected how he relates
to issues of visible minorities, immigration and even the environment.
While travelling across Europe, he was struck by the extent of the pollution,
particularly in Italy, and has always felt fortunate to live in Canada,
where "we have so much we take for granted." Today he is concerned with
the extent of the environmental issues facing Canada. "We’ve regressed
a lot since the 1970s," he asserts.
Originally Norm had planned to travel with a group of friends,
but for one reason or another none of them could go. At the last moment
even his closest friend had to back out, leaving Norm on his own. He decided
to go anyway.
The trip got off to a rocky start. On the advice of his
aunt, he flew into Athens. After clearing customs, he walked out of the
airport and got onto the first city-bound bus he saw. He soon discovered
that no one on the bus spoke English. "I ended up way behind the Acropolis,"
Norm says, "where, again, nobody could speak English. It was a Sunday.
The banks weren't open. I didn't have very many drachmas. It was
raining. I had nowhere to stay.
"It was a really low point," he says. "After three days
of rain, I was beginning to think I'd made a mistake and considered going
home." The sun eventually rose and, with it, Norm's spirits. Travelling
by himself, Norm set out to explore as much of Europe as he could, wending
his way from country to country based on advice from fellow travellers.
One of Norm's most vibrant memories from his time in Spain
-- "other than developing a fondness for paella, which I just love"
-- occurred one night when he and some Australians he'd met up with in
England were at a bar. It was crowded and everyone was drinking. They
got into a fight with a group of sailors -- not such a rare occurrence,
according to Norm. "It was actually a very impersonal fight. Everybody
just kind of hit each other. You bumped into somebody and either they
hit you or you hit them." Within minutes he was picked up by two guys
and thrown out the window -- which ended up being a stroke of luck, since
the police arrived soon after, and Norm was "the only one who didn't end
up in jail for the night."
Morocco, like Spain, holds fond memories for Norm. Like
most young people in the early 1970s, Norm had long hair ("in those days
I had hair," he laughs). It was rumoured that Morocco had an agreement
with the United States not to admit long-haired travellers into the country
(long hair went hand-in-hand with drug use, according to local officials).
Several times Norm attempted to board the ferry from Spain directly to
Tangiers, but was refused passage by the authorities, who told him straight
out to get a haircut. He finally chose the only other route from Spain
to Morocco: He took a ferry to Algeria and then a bus across the border.
"It was actually very funny," he says. Everyone on the
bus kept making scissor motions with their fingers at him, "which meant,
'you're going to have to get your hair cut'... When you leave Algeria,
you're more or less in no man's land on the way to Morocco. Your passport
is stamped out of Algeria, so you can't go back, and then you get to the
Moroccan border." Sitting on the bus in "no man's land," Norm pulled his
hair into a ponytail while the border guard produced a pair of scissors.
By the time they reached the Moroccan border, Norm was a different man.
"I looked like a pageboy," he recalls.
Of his European trip, Norm says: "It was fascinating to
have the opportunity to experience so many different cultures, people
with so many different attitudes and living in so many different circumstances.
Some of the people I met in Morocco and Turkey had absolutely nothing.
The conditions of the poor people in particular were just terrible. On
the other hand, I was always amazed at how happy people can be with so
little."
After nine months of touring on his own, Norm returned
to Canada to work, so he could pay for university. Life, however, had
other plans for Norm. In 1974, Norm was involved in a serious car crash.
And, like Europe, the crash had a profound impact on Norm's life, as well
as on the lives of those around him.
"I had no idea what the future held"
It came at a time when just about everything seemed to
be falling into place. Norm was registered to start university in the
fall. He was working on the pipeline during the summer -- making enough
money to pay for his tuition and carry him through the school year. He
owned his own car and was having a good time with his friends and family.
Life was good. And then one day, while out driving with a friend, Norm's
life, like the road he was on, took a drastic turn.
"I made two stupid mistakes," says Norm. First, he hadn't
kept his car tuned up. Second, he tried to pass a friend driving a Fiat
but didn't have enough power to get by in time. As they rounded a corner,
a truck appeared in the oncoming traffic lane. "My recollection is that
I drove into the side of the bridge and bounced across it to miss the
truck because at that speed we couldn't turn in." However, as he
was later told, oil on the road caused him to lose control.
"The bottom line," Norm says, "was that I had a car crash
and I was in a wheelchair."
Norm's first concern, upon waking up in the intensive care
unit, was for the friend who had been in his car. At first no one could
tell him whether or not his friend was safe (he was). "I was so fearful
that he was also paralyzed or something had happened to him... You do
something to yourself, you can live with it, but it would be devastating
to be the cause of somebody else's injury."
Slowly the full impact of the crash began to dawn on Norm.
He had broken his neck at the cervical 6/7 level, partially damaging the
spinal cord. As a result he had incomplete quadriplegia, with full paralysis
in both his legs and some paralysis in both arms and hands, but with sensation
maintained throughout his body.
Norm was 20 years old with a broken neck, a head full of
questions and very few answers. It was the 1970s and rehabilitation for
people with spinal cord injuries, particular for those with a broken neck,
was limited. No one ever took the time to explain to Norm the implications
of his injury -- the limitations or the potential.
The physical trauma, of course, is only one element of
a spinal cord injury. Being told you will never walk again and perhaps
not even be able to live independently has a huge emotional and psychological
impact. For a physically active young man, the injury was "totally devastating...
In a matter of seconds, you go from being totally independent to totally
dependent, and I had no idea what the future held."
Norm adds, "That was devastatingly hard, and it's not a
thing you talk to a lot of people about. At night, when you're all alone
in your room, you're going through hell. And on top of all of this you're
concerned about your family and friends, trying to put on a brave face,
one that says to the world that you're doing well with it."
Even during the time immediately following his injury,
Norm was concerned about the emotional state of his family and friends.
This desire to help others was as defining a characteristic of young Norm
as it is today.
Entering college after his accident, Norm recognized that
his disability limited the fields of study he could pursue. More importantly,
he knew that the job market for a person with a disability would be much
smaller. "If an able-bodied person loses a job, they have a range of options,"
he says. "They can do manual labour jobs. I, on the other hand, was limited
in what I could do -- I had to rely more on my intellect. If I were suddenly
out of work, finding another job wouldn't be as easy, so I wanted an education
that would provide me with a strong set of easily transferable skills."
Norm enrolled in a commerce program with a career as a chartered accountant
in mind -- a good, reliable specialty with a potential for long-term job
security. Norm was being practical.
His resolve didn't last the semester. His heart simply
wasn't in it. It wasn't that the studies were difficult, he simply found
them boring. They lacked the personal interaction that he was looking
for. When he returned to college in the fall of 1975, Norm studied psychology.
Two years later, following graduation, the British Columbia
Paraplegic Association, which had previously hired him for a summer research
position, offered Norm a full-time position in its rehabilitation department.
In the end, the injury may have changed whom Norm worked
with, but it didn't change what he did. Norm was social-work oriented
before his injury -- he was a rehabilitation counsellor after his injury.
Twenty-five years later, he is still a social worker. He is still helping
disadvantaged "neighbours" put their lives back together after experiencing
a significant trauma.
"I wanted to enjoy what I was doing"
In 1978 Norm was asked to give a lecture to nursing students
on working with people who have experienced a spinal cord injury. He invited
Jennifer, a young social work student whom he had recently met, to sit
in on the lecture. She agreed, although it was never made clear whether
her interest lay in the topic or the teacher! After the lecture, Norm
invited her to dinner. A year later they were married.
"Norm is the most positive person I know," Jennifer says
simply.
Norm's family continues to play a central role in his life.
Outside of work, he and Jennifer spend a great deal of their time with
their family, many of whom now live in Hope, B.C. As he gets older, Norm
finds that his family is becoming more central to his life.
The wilderness also continues to have a strong hold on
the man who was raised in rural B.C. Weekends and holidays are often spent
fly-fishing in some remote corner of the province. While his disability
necessitates adapting his fishing style, it doesn't slow him down. He
doesn't mind asking for a hand to get to a good fishing spot, and quite
often is the one helping others -- offering tips on where to fish and
what flies to use. Hours spent in the freezing cold, being eaten by mosquitoes,
and near brushes with death by drowning only add to the adventure! Because
he is mostly a catch-and-release fisherman, he usually returns from a
fishing trip with only one or two fish, but with a tackle box full of
fish tales! Last year, Norm bought a small inflatable boat and can now
be found fishing in any one of the myriad of mountain lakes that make
up the B.C. interior. With Jen in tow -- she assures me that she enjoys
it as much as Norm -- he shivers with cold or swats flies in his quest
for the next great catch.
Even though Norm's beloved GT6 was destroyed in the car
crash that paralyzed him, his love for fast cars hasn't diminished. Today,
Norm drives a Camaro Z28 convertible -- "midlife-crisis" red, with a black
leather interior and, according to Norm, the best value on the market
today for a high-performance car.
Edie Ehlers remembers, "When he bought a red, hot Camaro
convertible, we called it his 'over-40 car.' He was in at least four accidents
in the first year -- it became a major joke at the office -- but he kept
his sense of humour throughout." Norm insists that none of the accidents
was his fault. Five years later he is driving the same car and has not
had an accident since!
Despite what might be implied by the car, Norm is a shy
person. He doesn't like to be the centre of attention, but rather likes
to work behind the scenes.
Dr. Peter Wing, a physiatrist at the Vancouver Hospital
and a board member of BCPA, has worked closely with Norm on a number of
projects. "He's quiet, he's pleasant to work with, he's never impatient,
and he never raises his voice. He acknowledges that people have to work
through things at their own speed," says Dr. Wing, adding that Norm "never
wants to draw attention to himself. As long as progress is made, he doesn't
need his name attached to it particularly. He'd rather just see things
happen."
For the past two years, Norman Haw has worked as a rehabilitation
counsellor with the British Columbia Paraplegic Association. Yet for the
six years prior, Norm was Executive Director of the BCPA.
For most people, a typical career involves climbing up
the corporate ladder in one organization, then looking laterally to other
organizations for more career opportunity. In 1992, Norm reached the top
of the ladder at the BCPA -- assuming the executive director position
with a mandate to bring financial security to the organization.
"I didn't aspire to being executive director," explains
Norm. "I really enjoyed the job as director of rehabilitation. I worked
on programs that would improve our members' quality of life." He adds
that he had originally accepted the position of executive director only
because the organization had been experiencing financial difficulties,
and Norm had felt an obligation to assist.
So in 1992 he took over the helm of an organization with
an operating deficit and a debt of almost one million dollars.
By 1997, it was operating in the black and had an established
endowment fund of more than four million dollars.
But after five years as the head of the BCPA, Norm was
restless. His job lacked the direct client contact that he loved. After
much thought, Norm decided it was time to climb off the ladder and do
what he most wanted -- return to the field to work directly with clients
with a disability.
It was a bold step. Many of his colleagues questioned the
decision. But those who knew Norm well supported him. They knew that he
would be happier working in the field.
Looking at Norm's curriculum vitae is like reading
a telephone directory of disability-related committees and organizations
in British Columbia. While working at BCPA, Norm has led more than 30
organizations and committees. Board member, chair, co-chair, founding
member, executive director (of three organizations -- the BCPA, the B.C.
Paraplegic Foundation and the Gordie Howe Disabled Athletes Foundation
-- at the same time!), honourary president... and the list goes on. They
all required Norm's attention and, eventually, they all took their toll
on Norm's physical and psychological health. More significantly, all the
committee meetings and related work distanced him from what he really
enjoyed the most -- working with clients.
Norm says of his years as executive director that "while
I found it an exciting challenge, after a while I honestly didn't find
it rewarding." Once he had succeeded in putting into place the necessary
funding to support the organization, "I found myself losing the passion
for the position... I wanted to enjoy what I was doing."
Norm called it quits. He informed the board that he wanted
to step down and, after giving the organization time to hire his replacement,
Norm left the executive directorship to resume a position he had first
occupied more than 20 years before.
Although returning to the role of rehabilitation counsellor
represented a significant cut in pay (Norm has never been in the position
for the money), Norm felt a great weight lifted from his shoulders. And,
thanks to the network of senior officials he has come to know over the
course of his term as executive director, Norm is often able to use these
contacts to open doors for his clients -- doors that might have otherwise
remained closed.
A holistic approach to rehabilitation
The Canadian Paraplegic Association (CPA) was established
shortly after the Second World War to support returning war veterans who
had experienced a spinal cord injury. The CPA helped with rehabilitation
and reintegration into society.
Meeting the needs of soldiers with spinal cord injuries
in 1946 wasn't an easy task. Medical knowledge about spinal cord injury
was virtually non-existent. There were no rehabilitation models anywhere
in the world. Until the return of these veterans, there simply wasn't
a "critical mass" of people with spinal cord injuries in Canada, and therefore
there were no supports in place for them.
Most of these veterans were young, otherwise healthy men.
They had fought for their country and expected to be supported by their
country, as their non-disabled peers were, upon their return. The government's
response was to support the creation of the Canadian Paraplegic Association.
The CPA was unique at the time, in that those affected
by its decisions, people with paraplegia and quadriplegia, played a leadership
role in managing the organization -- both as board members and staff.
This tradition continues today: The majority of BCPA's rehabilitation
counsellors are people with physical disabilities. They have been trained
as rehabilitation specialists, but bring the added value of personal experience
when working with clients.
Rehabilitation counsellors at other, more traditional,
agencies often work within a "bottom-line paradigm," with the emphasis
on cost of service and return on investment. Agencies working in this
model may ask the question, "Is the cost of re-education worth the expense?"
The issue isn't what the client needs or wants, but the associated costs.
In many cases, current-year costs outweigh potential long-term gain, so
even if it is understood that a high short-term cost can lead, some time
down the road, to a client's return to work, the need for staying within
budget overrides the longer-term benefit.
The fundamental result of this emphasis on cost is that
clients do not always get the supports they need, when they need them.
There is little room for thinking outside the box. Risk taking is extremely
low and assessments tend to be by category of disability rather than on
a case-by-case basis. For example, some insurers consider quadriplegia
a contraindication to employment -- either because of the severity of
the disability or the length of time it would take to retrain. Although
they will pay for income support and certain technical aids as required,
they are unwilling to invest the time or money in a return-to-work strategy
for the individual. This limits a person's ability to train for and find
a job, not to mention self-esteem and participation in the community.
The BCPA is not looking to reduce the cost of service or
the length of time a client is on claim. As early as the mid-1970s the
BCPA had the alacrity to adopt the philosophy of full community participation.
BCPA's rehabilitation counsellors take a more holistic approach when dealing
with clients, providing a broader range of service. They are trained to
help clients obtain whatever supports they need to live independently.
It is not unusual for BCPA to maintain a relationship with a client throughout
his or her life; for the BCPA, a file is never really closed. And because
most of BCPA's rehab counsellors have a disability themselves, they can
often relate to the tangible issues and act as role models for clients.
Recognizing this benefit of the BCPA, many funding agencies are now contracting
with it to deliver some of their rehabilitation services.
Norm spends much of his day on the phone, often dealing
with very basic, very practical issues that are not such a struggle for
the able-bodied population -- issues such as transportation. "I had a
client who was offered a job on the far side of town," he says. "With
our current system, each municipality manages its own transportation service
for people with disabilities, and they don't cross into other municipal
areas. In the end, the client couldn't get there from where he lived.
Here's a case where someone was willing to work and even had a job offer
but, unless something changed with the transportation service, he would
have had to turn it down. We had to intervene, but even then it was considered
an exceptional case. Although they accommodated my client, the policies
weren't changed."
Many issues, such as funding for technical aids, require
an understanding of the policies and regulations of all levels of government
and insurance companies, as well as the voluntary sector. "My electric
chair is busted and I don't have $8,000 to buy a new one. What do I do?"
is not an uncommon question. Addressing problems like this usually requires
Norm to deal with more than one agency. To be successful requires a great
deal of patience and a predilection to creative problem solving. Norm
has an abundance of both.
Some of the problems Norm encounters while working with
clients are environmental: the lack of accessible transportation or housing.
However, often the greatest barriers to being able to live and work in
a community are more complex: Financial disincentives to work, employer
attitudes, low self-esteem and poor motivation are all factors that lead
to a social isolation not easily overcome. Still other barriers include
understanding and navigating the patchwork quilt that is this country's
disability service sector.
Most program criteria relate not to an individual's needs
but to how or where an individual acquired the disability. This has resulted
in people with "non-compensatable" or congenital disabilities having much
less support when looking for work than someone injured on the job or
in a car accident, in which Workers' Compensation or private insurance
covers many of the disability costs. With no centralized service in Canada,
people with disabilities can spend hours shuffling from one income support
or disability aid program to another. A good BCPA counsellor is able to
work with clients in each of these areas.
Norm continues to demonstrate the passion and excitement
that first motivated him almost 25 years ago. Norm likes his work and
is successful at it, in part because, whatever the circumstances, he is
almost always able to convince decision-makers that his requests are reasonable.
People collaborate because they want to, not because they feel pressured
to.
Realizing the impact of employment on community participation
During the 1995 return-to-work project with government,
it was apparent that Norm was motivated by what was in the best interest
of the client. The project was being led by a steering committee of senior
officials -- deputy ministers, assistant deputy ministers, CEOs and senior
vice-presidents -- from the provincial and federal governments, crown
corporations and the private sector. Norm chaired the committee. He also
chaired a more junior, working-level committee. He was comfortable working
at either level. On both committees, Norm constantly emphasized the importance
of work to clients. He became the conscience of the project.
As far as Norm was concerned, if the pilot was going to
succeed, everyone, including senior managers, needed to take ownership
of the issues. Each person was expected to push the issue within his or
her respective organization.
As Norm chaired these meetings, it was quite obvious that
beneath his always-formal attire of jacket and tie beat the heart of a
true rehabilitation counsellor. He knew intuitively when to push an issue
and when to let it go. The partnership benefited greatly from his leadership;
even the "bottom-line" insurance companies remained engaged throughout
the duration.
Disability researchers have consistently reported that
the single greatest barrier to full community participation for people
with disabilities is getting a job. A job provides not just financial
independence but social acceptance into the community.
Norm believes that work plays a larger role in an individual's
life than simply putting food on the table. One gains self-esteem from
contributing to the community. Norm places a high value on work and believes
that everyone should have the opportunity to participate in the labour
market.
"When you go to a party or get together with a group of
strangers," Norm says, "people invariably ask, 'What do you do for a living?'
For anyone not working, this can be an uncomfortable question. It marginalizes
people socially as well as economically. Within the population of people
with disabilities, the rate of unemployment is still above 50 per cent."
If work helps to build self-esteem in an able-bodied person, think of
the impact it can have on someone with a disability who faces added barriers.
Professionals who work directly with individuals in need,
such as rehabilitation counsellors or social workers, often face unique
problems that require innovative solutions. It is the creativity of front-line
staff that can turn a potentially difficult situation into success. With
his positive disposition, creativity and his inherent ability to convince
almost anyone to work with him and the client, Norm fits the description
of a good front-line staff person. While people with disabilities may
face similar problems -- access to housing, access to transportation,
access to education and employment -- each individual has specific circumstances.
There are, unfortunately, no standardized responses for everyone. Whereas
public transportation may work for one person, it won't work for everyone.
The challenge from Norm's perspective has always been to maximize a person's
quality of life, usually by maximizing his or her ability to live and
function independently in his or her own community.
The Creekview Project
What Norm views as his greatest accomplishment reflects
his fundamental belief that everyone, no matter how significant a disability,
should have the opportunity to live in his or her community. Norm believes
that living in and contributing to one’s community is the first step toward
a larger, psychological and emotional, freedom, not just a physical one.
Living in the community allows people the opportunity to take responsibility
for their own futures.
"I have to take you back to one of my early clients," Norm
explains. "You know, you go into the spinal unit and you meet a young
person whose life has changed instantly to being a paraplegic and everything
that entails. I've always been able to say to them, look, with a lot of
support and hard work, you're going to be able to be out in the community
actively participating. There are going to be very few things you can't
do if you really want to, if you really work hard to achieve your goals."
But one day in the unit he met a newly injured young man
lying in bed. The man was on a ventilator, paralyzed from the neck down,
and couldn't speak. "I knew where he was going to go," says Norm. The
only option for the young man would be to live in the George Pearson Centre,
an extended-care unit built during the polio epidemic. Residents were
in open wards shared by about 30 people. "Your privacy entailed a bed
with a curtain around it."
The young client’s name was Robb Dunnfield. Robb recalls
that when he told his social worker, while still in hospital, that he
would be moving to Pearson, she cried. "She knew what was in store for
me." Robb tried to remain optimistic, so that when he finally arrived
at Pearson, "it was a big shock! There were close to 30 beds, all in one
room, with a curtain dividing each guy into an eight-by-eight-foot space
with a single bed and a bedside table. That was it. That was what I was
supposed to call home at 19 years of age. They told us it was home, but
we had so many rules it was unbelievable.
"Basically it was a warehouse for ventilator people. It
really didn't hold opportunities to have an independent lifestyle. I was
told that this is the end of the road, this is what I'd live the rest
of my life out in, and don't rock the boat. "
In 1979, the traditional approach in British Columbia to
dealing with people with this level of disability was to keep them in
hospitals. These residents' lives had little freedom. They lived in isolation
that was broken only by the occasional recreational activity or weekly
outing. Living in this environment often meant foregoing many of life's
challenges and opportunities. The residents had a dream -- what they would
do if they could live in the community. For some, it was a dream that
lasted more than a decade and, without Norm's help, would probably have
taken another decade to achieve.
Six of these ventilator-dependent young men got together
to discuss how they might make their dream a reality. Norm was the rehab
counsellor of several of them. Recognizing that they wouldn't get far
with the medical establishment on their own, they enlisted, through Norm,
the help of CPA. Norm never considered turning them away.
Cody Tressierra, like Robb Dunnfield, is high-level quadriplegic
and ventilator dependent. Both men spent years in the George Pearson Centre.
"Pearson was not even rehab," says Cody, "because people who went there
weren't ever going to leave, and most of the people who lived there" --
his 50-, 60- and 70-year-old roommates with post-polio -- "didn't want
to leave anyway."
Cody notes that living with 20 other men meant that "you
had your time of day to get up, and if you missed your window, you kind
of just stayed in bed.
"It was very structured, very scheduled, and very regimented
-- there were days that, even if you didn't want to have a bath, they
gave you one anyway. They'd jar you out of bed and they'd stick you in
the tub even though you really didn't want to see anybody, let alone be
handled."
Hospital staff discouraged Robb and others from "doing
what 19 year olds do, which is hanging out with your friends, maybe partying.
You know, being 19! Anytime we tried to exhibit any of those feelings
or actions we'd get clamped down on by the nurses and health care workers."
Robb acknowledges that this is the mentality of an institution. "I realized
I couldn't live here for the rest of my life. There's got to be something
else, there's got to be! And that's when I approached my BCPA worker."
While on a personal level for Robb and Cody, circumstances
seemed bleak, at the collective level for Canadians with disabilities,
it was a time of fundamental change. In 1981, the Constitution, which
entrenched the legal rights of people with disabilities, was adopted.
1982 saw the launch of the International Decade of Disabled Persons --
a decade dedicated to levelling the playing field for people with disabilities
around the world. Also in 1982, the Government of Canada released its
action plan, The Obstacles Report, detailing the steps that needed
to be taken for our country to become inclusive of citizens with disabilities.
By 1980, wheelchair sports and other disability sporting events were commonplace.
Communities in general experienced the benefits of most
people with disabilities living outside of institutions. Many wheelchair
users were already living, playing and working alongside their able-bodied
friends and neighbours. Contrasting the circumstances of Cody and his
roommates with that of Norm's other clients was the impetus behind Norm's
push for a more acceptable housing option for this group of people who
depended on ventilators to breathe.
Still unsure of how he was going to accomplish this, Norm
set the wheels in motion. He began working with the group of young men
to plan how they could live safely outside the hospital.
The only examples of people with a similarly significant
disability living outside a hospital involved family and friends playing
a major role in providing the supports necessary for daily living. This
wasn't what Cody, Robb or the rest of the group wanted. They wanted to
establish an environment in Vancouver, funded by the provincial government,
that would provide them with the 24-hour-a-day services they needed. They
could even prove the cost benefits of the model -- it would cost 60 per
cent of what the government paid to keep them in a residential hospital
setting.
It had never been done anywhere in Canada. With no funding,
no support from the hospital in which they lived, and a great deal of
skepticism even among some of their roommates, the group of six embarked
on what was to become known as the Creekview Project. Little did they
realize the full magnitude of the barriers they would encounter, nor the
time it would take to realize their goal.
Norm helped the group form and manage committees, something
none of them had ever done. He set up meetings for them to pitch their
own cases. Norm knew that if they were going to succeed in living independently,
they had to have more than simply a strong desire and a secure physical
environment -- they had to have the skills and the confidence to make
something of their lives once they were in the community. Thus the process
became as much about empowerment as it was about community access.
"Norm was absolutely a key core person [in the Creekview
project]," says Dr. Peter Wing. "But he felt that his job was to bring
people together and let them do it. He felt that the design and planning
should be in the hands of the individuals who were going to live there."
Norm helped to identify the housing site and secured the
financial resources that would be needed to support the project. Costs
included the attendant services, the housing, adaptations to the housing,
and equipment. This was at a time when even support services for more
independent people with quadriplegia were inadequately funded.
Partway through the planning of Creekview, Norm was promoted
from counsellor to director of rehabilitation services and took on management
of BCPA's entire network of rehab counsellors. But Norm maintained responsibility
for Creekview. He hadn't finished what he'd started.
The greatest barrier to the Creekview Project was not physical.
It was attitudinal. In particular there was outright skepticism on the
part of certain medical practitioners in the rehabilitation field.
Barb Parsons, the B.C. government liaison on the steering
committee for Creekview, recalls, "At one point in the planning process,
we were told directly by one doctor that if we succeeded in helping these
men move into the community, it would be issuing a death sentence!"
With the logistical issues, funding arrangements, bureaucratic
red tape, building design issues, attitudinal barriers and the blatant
obstructionist stance of some health care professionals, Norm was faced
with the greatest challenge of his career. First he had to convince the
medical establishment, the Ministry of Health and the local community
that it was the right thing to do -- and that it was doable. Second, he
had to pull all the key stakeholders together to do it.
Fortunately, while some within the medical profession were
not supportive of the idea, many others were. In fact, at the invitation
of the six men organizing the effort, many got actively involved on various
committees. Staff even went so far as to establish a formal training program
for the service providers who would be working at Creekview -- most of
whom had no prior medical training.
From the beginning everyone knew that, without Norm's support,
without his contacts and without his leadership, they would likely have
remained in hospital, perhaps for the rest of their lives!
"I remember sitting on one of the committees," recalls
Norm, "and many wanted to just leave the project. In fact, the original
doctor resigned at the last minute. Many thought we would never get the
money for the home care. We'd be discussing something and they'd say,
why are we even discussing this? You're not going to get it. You can't
get the funding for the home care. You're not going to get the funding
for the equipment.
"I would always tell people, that's not your problem, that's
our problem. You tell me what we need and we'll get it. A number of professionals
at the institution felt that it would never happen; if it does, they're
going to die; or they're going to be back the week after it opens. I can
remember driving home from some of those meetings saying, it'll be done
-- somehow, we'll do it."
By the time all of the pieces finally came together --
almost three years after planning had begun -- Norm still hadn't received
confirmation from the provincial government that funding was forthcoming.
With the window for development rapidly closing, he decided to push ahead
without it. Norm met with his executive director and board of directors.
Although it meant BCPA would be liable for hundreds of thousands of dollars
should the federal and provincial governments fail to deliver, they supported
him. The sod turning went ahead as planned. Eventually government funding
was secured and the project was completed.
In May of 1985, six young men moved into their new home.
They ranged in age from 28 to 40. For each one, it was his first opportunity
as an adult to live on his own.
Before Creekview, they were six patients living in a hospital.
After moving into their own home, their lives changed forever. And not
one of them died -- a vindication of sorts for Norm.
Creekview, which many people thought was the final destination
for these men, proved to be nothing more than a stepping stone. Of the
six original tenants, five have moved out of Creekview. Four have jobs.
Three own their own homes. Two are married. Two are internationally recognized
artists. One recently had twin daughters.
Had Creekview not become a reality, all six of these men
might still be living in an institution. Today, thanks to pioneering efforts
like this, most people with high-lesion quadriplegia, including those
reliant on ventilators, live in the community. In addition to improved
quality of life, projects like Creekview save taxpayers thousands of dollars
per day in hospital costs.
And then there was the personal empowerment of those involved.
Creekview is an example of what can be accomplished by persons with the
most significant disabilities, given the right supports and the willingness
by decision-makers to work with, not on behalf of, people with
disabilities.
Recognizing the benefits of integration, the provincial
government, with the help of BCPA, went on to build another integrated,
self-managed community coop which housed people who are ventilator dependent:
Noble House. And the first formal rehabilitation program in Canada for
people with high-lesion quadriplegia was established at the G. F. Strong
Rehabilitation Centre.
During Independence 92, a disability conference and exhibition
attended by more than 3,000 delegates from around the world held in April,
1992, Creekview and Noble House became a showcase to the world of what
is possible with adequate community supports. And the people of Vancouver
became more aware of the potential everyone has to contribute, regardless
of the level of disability.
For Norm, the greatest satisfaction came from seeing his
community and his province become more accessible to citizens with disabilities.
Giving control to people with disabilities
It's been more than two years since Norm returned to front-line
service. Does he miss the excitement of being the BCPA's executive director?
"No," he says without hesitation. "I have a large caseload and I find
my work challenging and rewarding. When I go home at the end of the day,
I feel good about what I've been able to accomplish." He points out that
he also has more time to spend with family and friends and on avocational
pursuits.
For Norm, the desire to work with people to achieve their
goals will always be there. Considering the issues now confronting people
with disabilities in Canada -- housing, transportation, employment --
so, too, will the need.
"We're going to have to fight hard to protect what we have,"
says Norm. "Generally, society still has this welfare attitude toward
people with disabilities. I believe, whenever possible, we need to take
the person with the disability and their needs out of the social welfare
system.
"We need to put the money and decision-making in the hands
of the person with the disability. Let them control how those funds are
being spent. There certainly has to be accountability, but the premise
should be that the persons with a disability are capable consumers who
know their needs best. Professionals should be seen as educators who are
available to provide information and support."
Norm points out that if he needs a new wheelchair, he researches
his options, seeks appropriate advice, makes his purchase, and recovers
some of the money he has spent from his extended health care benefit.
In this process, "I don't need the involvement of a huge bureaucracy."
Norm would like to see a program that allows people, particularly
those who are working, to recover their full cost of disability through
a tax credit, "so they're treated like a businessperson." He feels that
such an initiative would remove people with disabilities from the working
poor and place them on equal footing with able-bodied workers who do not
have similar costs.
"In the long run, it will reduce costs, but most importantly,
it returns control and human dignity. There are a lot of individuals who
feel they lose some of their dignity when they have to constantly put
their hand out every time they need basic medical equipment. Giving control
to individuals with disabilities will pay huge dividends in both economic
and human terms."
And giving control to individuals with disabilities is,
after all, Norm Haw's passion.
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