and Community -
Judith A. Snow, M.A.
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
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
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
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
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.
Judith A. Snow, M.A.
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
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
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.
Reprinted with permission.
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