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Themes: Contribution and Community - Stramp

Prologue

by Judith A. Snow, M.A.
revised December 2000

Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example Afro-Americans and -Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.

These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility they experience in the present.

As the child grows, she or he may reject these interpretations and adopt or invent others. Even so the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.

Even while the material effects of marginalization are being experienced the child has an inner anchor to sustain a positive identity for herself or himself. It can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.

Children labelled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact their parents may very likely be champions of these stereotypes.

In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know to resist adopting these beliefs about themselves. In other works a labelled child has no choice in understanding themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.

For better or worse, human beings are easily moulded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is libelled disabled inevitably becomes a disabled child - broken, helpless and unable.

When I was seven months of age, I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labelled `severely physically disabled'.

When I was six years old I remember my Father telling me that some U.S. doctors were putting children labelled `mentally retarded' to death saying that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with `mental retardation' were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.

My Father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well being of the community.

Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated, while others, wittingly or not, hurt my body, deflected my mind, impoverished my circumstances and diminished my abilities and contributions.

I have long thought that living as a labelled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my Mother's lap, still a babe, if my Mother had known I needed such a story.

I invented such a story.

The Story

by Judith A. Snow, M.A.
revised December 2000

You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.

You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.

You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.

Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.

When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.

However, you must not strive to be completely like these people or you will break yourself.

While you are among these people, you must constantly search for ways to hang on to your true self and your true way of being, even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.

Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them.

It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.

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