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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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