SIMILAR
CASE, VASTLY DIFFERENT APPOACHES
Jan 20, 2007
Helen Henderson, Life
Section, Toronto Star
At age 24, Rebecca Beayni has
three formal jobs and a lifetime commission to expand
hearts and minds.
One day a week, she listens to Grade 1 students
at her old elementary school practise reading aloud.
Another day she works as a facilitator at the Royal
Ontario Museum, helping visitors to a hands-on bio-diversity
exhibit discover things they might otherwise not
notice.
Then there's the Mustard Seed drop-in centre, where
she helps bring hope to those feeling vulnerable
and dispossessed.
I wrote about Beayni two years ago when she and
her mother Susan went to United Nations headquarters
in New York to present a submission to the group
working on an international human rights treaty
for people with disabilities.
Beayni does not communicate verbally. She is physically
and intellectually disabled and as a baby was given
a lifetime prognosis very similar to the American
9-year-old known to the world only as Ashley.
As discussed in this column last week, Ashley, who
was born with a severe type of brain damage, has
made headlines around the world. When she was 6,
her parents decided their daughter would "be
a lot more physically comfortable free of menstrual
cramps, free of the discomfort associated with large
and fully developed breasts, and with a smaller,
lighter body that is better suited to constant lying
down and is easier to be moved around."
After getting approval from the ethics committee
of the Seattle Children's hospital, they went ahead
with what they call "the Ashley treatment"
for their little "pillow angel." It's
all described on their website: http://ashleytreatment.spaces.live.com/blog/.
Over the next 2 1/2 years, doctors in Seattle removed
Ashley's womb, extracted the tiny knots of tissue
that would otherwise grow into breasts, took out
her appendix and started giving her large doses
of estrogen to curtail her growth.
The parents of children with disabilities walk a
very special path in life. It is one too often made
more difficult by a society that shuns both their
children and their needs.
Ashley's parents chose a medical intervention to
do what they felt will be best for their daughter.
Rebecca Beayni's parents chose a different route.
Beayni has a community of people who care for and
about her. They form a circle of care that will
be constant throughout her life. The members of
the circle may change and shift roles, but the circle
will always be there, whether or not her parents
are capable of playing a lead role.
Her mother feels keenly what her daughter is up
against.
"Rebecca has lived her whole life knowing her
limitations," Susan Beayni told members of
the family's church last year.
"She has encountered frustration and pain.
She knows what it means to be gripped by fear. She
knows what it feels like to be the source of fear
for people who look at her and see someone less
than human."
But as mother and daughter wrote in their presentation
to he United Nations: "Her success in overcoming
obstacles is mainly due to the deep and committed
relationships she has developed with family, friends
and her support circle, as well as collaboration
with community groups that she comes in contact
with regularly such as the church, schools and other
venues.
"Her support circle, who have been meeting
regularly for the past 13 years, help interpret
her goals and dreams. Rebecca does not speak, so
those around her ensure that she has many other
ways to express her feelings and desires. It is
imperative that she have long-term relationships,
both paid and unpaid, who can help build the capacity
of the community to welcome her gifts."
And what are Beayni's gifts?
"Rebecca forces people to slow down to communicate
with her and this is a gift to the world: slowing
people down to the point where they have to listen
to those, otherwise ignored, voices," her mother
pointed out to the UN.
"This guides us in the direction of a good
society; which is measured by how people treat,
listen deeply to, empathize and interact with its
most vulnerable members.
"...Rebecca's school and later work experience
is a testament to how one person can change the
entire culture that exists around them. Teachers,
administrators, fellow students, and co-workers
always say that Rebecca's mere presence changes
the very fabric of their relationships, making them
more collaborative, more compassionate, and more
intuitive to strategies that advantage all persons."
The Beayni family is part of the Ubuntu Initiative
(ubuntu.org), a group of people with developmental
disabilities along with their families and friends.
Ubuntu is a Zulu word meaning: "My humanity
is inextricably bound up in your humanity."
The group hopes to create "a different more
hopeful future, rooted in gentleness, interdependence
and deep friendship."
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Write: Helen Henderson, Life
Section, Toronto Star, One Yonge St., Toronto, Ont.
M5E 1E6. Email: hhenderson@thestar.ca
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