If you think funding for equipment is
bad today, think about this: When
your grandfather was a young man, there
was no funding for wheelchairs. Individual
ownership of a wheelchair was rare. In fact,
“wheelchairs” were better known as “invalid
chairs,” and most were owned by hospitals
for patient transport.

A brief review of the modern history of
the wheelchair helps put the current fight for
funding in perspective. Who fought the battle?
What started the revolution? And why were
they successful?

“Lamentable & Pathetic Figure”

Before World War II, the survival rate after a
spinal cord injury was less than 20 percent.

What of those who survived? One man
described the World War I veteran with
a spinal cord injury as a “lamentable and
pathetic figure…dependent, at every moment
of the day, upon the ministrations of others…with a body that cannot feel, limbs that cannot
move, fingers without touch, and hands as
listless as the hands of the dead.”

It was expected that survivors would be confined to bed as invalids
without purposeful activity for the remainder of a short life, most dying
in a few months with horrible pressure sores and infections.

During World War II, great strides were made in the medical
management of spinal cord injuries, and the survival rate jumped to 90
percent. Unfortunately, there wasn’t much of a life to come home to.
Rehabilitation programs didn’t exist. Survivors lived in hospitals, as physical
and environmental barriers prevented mobility outside the facilities.

James Burke, injured in 1940, recounts that there was no chance
of returning home from the hospital because there was no outside
support. Even in the hospital, independent mobility was out of the
question.

“I didn’t have a wheelchair,” he said. “There were only a half
dozen wheelchairs in the hospital, and they had to be shared among
people…Wheelchairs were for transferring people to treatment… they
were not for patients to sit around in.”

Greater Expectations

All of this began to change with the introduction of the Everest & Jennings (E&J) folding wheelchair, and the determination of a
handful of individuals to show that a disabled person could lead a
purposeful life.

One of the first Canadian battlefield injured was a man by the name
of James Counsell, who had the financial means to buy himself an E&J
wheelchair, and with determination taught himself to transfer in and
out of bed and the car, as well as pull his wheelchair into the car.

With those skills and hand controls, community mobility and a return
to purposeful life became a possibility. In 1943, Counsell lobbied the
Canadian government to purchase E&J wheelchairs for veterans with
an SCI, but one pivotal official felt “The price of $162.50 is quite high,
and the intrinsic value of the chair certainly would not warrant payment
of such a figure.”

Counsell and others continued to lobby the government for rehabilitation
programs. In 1944, the government agreed to convert a
large Toronto mansion into a rehabilitation center. Finally, in February
1945, the Canadian government approved the purchase of E&J
wheelchairs for veterans with an SCI. The United States followed suit
later in 1945.

Counsell and others WWII vets with spinal cord injuries formed the
Canadian Paraplegic Association to secure rehabilitation and wheelchairs
for both veterans and civilians. Similar organizations were also
formed in the United States. At that time, there were no clinical rehab
programs, vocational rehab, accessible buildings, cars or buses. It
would be decades before change would come to include veterans and
civilians with all manner of disability, and laws requiring community
access for people with disabilities.

Specialized Rehab Has Become a Commodity

Those individuals had to push boundaries to show the value of the
services, equipment and policy changes that have made it possible for people with severe disabilities to enjoy quality of life and have
lives with purpose.

Decades ago, who would’ve imagined that a person with C5/6
level quadriplegia could live and work independently, drive a car, fly
an airplane? That a person with severe spastic
quadriplegia could drive a power chair with his
head, communicate with an electronic device,
go to college and work in the community? The
awareness that those early pioneers brought
to the value of the services and equipment for
affected individuals has changed their lives,
and created the industry we all work in.

However, as funding for equipment has
become more mainstream in this country, some
portion of what was once specialized rehab
service has become a commodity when advertising
leads many to believe that every person
with insurance deserves a free power chair.

But for all of us who work to improve the
quality of life for individuals who live with
a severe disability, we have an opportunity
to continue the work of those early “rehab
pioneers.” Each one of us can show that what
we do for the severely disabled is a valuable
specialty that is essential for the community.

You can do it by pushing boundaries for the
people you work with today. Learn new techniques,
implement new technology and educate
your clients to inform them about what they
can do in spite of deficits so that they have
the desire to push their own boundaries. Your
client will only fight for the possibilities they
know about, and you can be the source of that
information.

During the next few months, this new column
— Pushing Boundaries and Dispelling
Myths — will cover topics we hope you can
use to help people with mobility deficits to live
purposeful lives. Various contributors will be
collaborating to bring you ideas on new technology,
new practice methods, new use of
existing technology, application of research to
seating and mobility, and the integration of
standards of practice and outcome measures
into daily practice among other topics.

Author’s note: Historical information is from the paper “Going Back to Civvy Street” by Mary Tremblay.