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Themes:
Social
Services & Community - Stories
Needs and Good
Intentions
By Sam Sullivan
- "We’re going
down!" I shouted as the flimsy ultralight aircraft I was
taking off in started to free fall. I pulled up even harder on
the control stick but the plane was out of control. As we
hurtled toward the ground 150 feet below my instructor pushed my
hand away and in what seemed like a suicidal act throttled up
and pushed the control stick down toward the earth. The plane
sped up enough to gain control and we arched up into the sky.
Below I could see my empty wheelchair on the grass airfield
growing smaller and smaller.
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Flying was the first major goal I had after I decided to abandon
my attitude of passivity and dependence. It has also served as a
rich source of metaphors. My thoughts about good intentions and
intuition, for example. I was convinced that pulling up on the
controls would save me when in fact just the opposite was true.
If I could be that wrong about something so important what else
was I wrong about in my life? In my effort to create a new
identity for myself flying represented something in which
disability was inconsequential and I had a need, not just a
want, to leave my wheelchair and therefore my identity of
disability behind on the earth. But things were not always so
expansive.
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- My introduction to
disability came as a consequence of an over estimation of my
skiing ability and a resulting broken neck. As a reluctant
quadriplegic bewildered by my new status and with nothing better
to propose I watched myself collapse into the incredible safety
net of the welfare state. So began the transformation of my
identity from a capable and contributing person to one in which
I became just one of many inputs into the social service system
machinery.
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- From my vantage
point of some 20 years later I feel a resentment about my
relationship with the social service system that necessarily
contains a measure of guilt. After all surely only a
pathological ingrate could feel anything but positive feelings
after being the object of hundreds of thousands of dollars of
public spending. But these unsettling thoughts persist.
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- Among the many
things that provoked my resentment was the disincentives that
came with the benefits. The $392 per month that I received in
welfare payments was given under the condition that I would not
make any money outside of the system and if I did I was to pay
it all back to the government. In addition, I was told that if I
was successful in making enough money on my own I would lose
subsidies for my medical equipment and supplies. I would also
have to pay for my attendant care and absorb an increase in
rent. If someone had tried to design a system to keep me
dependent this is what it would look like. It seemed unfair to
me that the entire system was predicated on me and my needs and
yet I received the least money of anyone in the system and had
the lowest status.
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- The government would
often try to do something about my situation and would offer
short-term work subsidies. There were several problems with
this. First of all I would have to be economically irrational to
work in the face of the disincentives but additionally I was
expected to contribute in ways that did not take account of my
circumstances. Full-time participation in the industrial machine
was what was expected. It was all or nothing. There was no
conception of part-time or gradual introduction to the world of
work neither was there recognition of the contributions that
people with disabilities could make in non-traditional ways to
the well-being of their communities through their unique
experiences and gifts.
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- When my life spun
into a full-blown crisis I realized that I had to do whatever
was possible to reduce my contact with the system. Over the next
several years I dedicated myself to achieving autonomy and
created with the help of many others several organizations
dedicated to improving our quality of life.
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- After my brief
flirtation with ultralight flying I applied myself to starting
groups that would encourage empowerment and relationships. Tetra
Society harnessed the incredible goodwill of technically skilled
people who volunteered their time to create assistive devices
that weren’t available commercially. The Disabled Sailing
Association pioneered new boats and technology that enabled even
the most severely disabled people to sail. These two programs
can be found now in communities across the country. B.C.
Mobility Opportunities Society developed the Trailrider and a
program to enable people with significant disabilities to access
difficult wilderness terrain. The Vancouver Adapted Music
Society created opportunities for people with disabilities to
showcase their musical and other artistic talents.
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- Because of my
experience I became involved with a number of social innovators
and thinkers across Canada who were trying to understand the
experience of disability in our society and develop an
intellectual framework to change it. This effort came to be
known as the Philia Project: A Dialogue on Citizenship. Let me
describe to you some of our thoughts.
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- Our society has
chosen to be a moral one in which no member of our community
should be in need. In the modern conception of the welfare state
a need by one confers a right to the resources of the rest. Any
society in which needs are not rights has no basis to claim for
itself morality.
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- This assumption
underlies the basic tool of our social service system which is
the Needs Assessment. The most common mechanism of the welfare
state is to identify large numbers of similar needs and to
allocate tax revenue to institutions or agencies dedicated to
solving or mitigating them. But here lies a source of many
problems. People are seen and identified by their needs and not
by the many talents, assets and contributions they are able to
make.
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- Institutions with
their paid staff and their needs based mandates are entirely
different from the more informal non-paid relationships or
associations. Think of your own relationships and friendships.
They are always based on assets and contributions. No one
develops friendships based on what’s wrong with the other
person. It is always based on mutually beneficial gifts that
each brings to the relationship.
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- In the arena of
social services there is seldom if ever a consciousness of the
fact that government efforts can sometimes create harm as well
as good. Sometimes institutions or agencies destroy the fragile
web of more informal relationships in the name of serving needs.
Sometimes people like me have more than one need and a number of
agencies are layered around with programs that sometimes work
against one another. Philia asks whether government supported
efforts can support and encourage these healthy relationships
rather than destroy them.
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- The result of our
interaction with institutions and agencies is that we start to
believe their assumptions—that we are more than anything
people with needs whose skills and talents are not valued and
that our attempt to exercise them only undermines the system. We
become clients, people who look only to the social service
system and its often disempowering way of meeting needs.
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We need to become citizens more and clients less. We need to
develop our skills and talents and we need incentives not
punishments to make contributions. We will never be truly
citizens until we are defined by our contributions not by our
needs.
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- We need to make our
communities aware that everyone, regardless of their disability,
has important contributions to make. We need an awareness that
contributions are not only those that directly impact our GDP.
They include those that improve the well-being in its broadest
definition of our fellow citizens and that these contributions
can include gifts of being and not just of doing. Communities
are stronger when all its citizens contribute.
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- Philia is dedicated
to these concepts. We believe that human rights and social
services although important will never help us achieve true
citizenship and enable us to develop relationships based on
dignity and that are sustainable. Until we can be truly
contributing to the well-being of our fellow citizens and until
we construct our communities in ways that welcome and value such
contributions we will never achieve our fullest humanity.
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- Philia wants to
engage not just people with disabilities but the wider community
in a discussion on how we can achieve these goals. We believe
that the forces of globalization and the accompanying decline of
the nation state offer us a rare opportunity to make significant
changes to the place we people with disabilities have in our
society. We also believe that there is a great danger that these
forces could result in a much worse situation for all of us if
we don’t get actively involved.
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- Now is the time to
start developing a clear vision for the future. We need to
collect stories to be shared with the wider community that could
point a way toward more healthy relationships and
understandings. We need to engage the disability community and
our allies outside of it to promote this new vision. We need to
share our ideas and experiences with other marginalized people
to engage them in what must become a common cause.
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- When I reflect on my
experience with flying I am convinced of the ineffectiveness of
good intentions and intuition. We must navigate with an
understanding of the environment we are in. If we keep our eyes
on the sky and not on the ground I believe we can reach a place
where we are welcomed because of our abilities and not our
disabilities.
There are few groups of
people who are more affected by government decisions, levels of
tolerance for differences in the general community and the
organization of our institutions and agencies. Please consider
getting involved. We need your commitment and effort. Contact us
through our web site.
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