THE ART OF GROWING
by Nicola Schaefer
[This article is a "teaser" for our book - Yes, She Knows She's There ]
In a plane heading for Toronto, where I
was to be part of a conference to do with the inclusion of people
with disabilities in their own homes within typical neighbourhoods,
I found myself talking, as one does on planes, with a fellow
passenger. We were both middle-aged women with adult offspring.
Ellen told me about hers and then it was my turn.
"My youngest, Ben, is a tree surgeon
in England; next up is Dominic, who's a freelance photographer
in Vancouver, and my oldest, my daughter Kate, is a teacher in
"Oh yes," said Ellen, "What
does she teach?"
"She's not a conventional teacher,"
I said, "But I suppose one could say she teaches the art
of growing invisible antennae." Before Ellen's baffled expression
had time to become permanent I explained further. I told her
what an interesting and complex woman my daughter is and how
despite, or rather because of, the inconveniences with which
she has to contend - including quadriplegia and lack of speech
- she is indeed a brilliant, full-time (if unpaid) teacher to
anyone willing to learn.
As her first student, I told Ellen, it
took me a while to adapt to her teaching methods. There were
no lecture notes to be taken, no essays to be written, no exercises
to practice, no books (beyond the generic " Cerebral Palsy:
How to Deal with your Wonky Kid" type) to study. There was,
and still is, just this lovely person Iying or sitting around
and challenging me to help her have a life.
Anyone unable to move much, or to communicate
beyond body language, needs to have enormous patience when trying
to get their point across. So too, of course, does the recipient
of the information, so one of the first things I learned from
Kate was to slow down when I was "listening", and to
try first one thing and then another, and an other, until I felt
I had understood her. Consequently I also learned to watch her
expression carefully to see what made her demonstrate different
emotions. These emotions included amusement (the trigger for
which might be me drop ping something on my foot and hopping
around cursing, for example), alarm (the approach of a nurse
with a needle or a baby brother looming over her with a Tonka
truck), dreaminess or contentment (particular pieces or types
of music, having a massage), interest (when she was young it
was usually food but when she became a teenager this was superseded
by hairy young men), irritation or disdain (being encouraged,
sometimes of necessity forcefully, with the in take of fluids
when she wanted simply to be left alone), and pure joy (the appearance
of a favorite person, perhaps).
A major lesson I've learned in life with
Kate is the importance of becoming an advocate on her behalf.
Originally a shy person who accepted the status quo, I gradually
realized that Kate had rights and needs that weren't being addressed,
and wouldn't be unless I got together with the other parents
and, with them, spoke up for our children. Back in the '70s,
when there was literally nothing to assist parents like myself
and our children - integrated school, respite care and so on
were but dreams - I remember saying to a friend, "I'm constantly
putting up my hand at meetings, typing proposals, phoning bureaucrats;
I'm becoming nothing more than an irritant."
"Remember," said my friend, "irritants
create pearls" - referring, of course to the grain of sand
in the oyster that is the beginning of the pearl. It was a good
I reckon Kate also teaches philosophy and
ethics. Had I not known her I don't think I'd ever have appreciated
my own life as keenly as I do. Nor would I have given as much
thought to ethical questions about amniocentesis, abortion, the
implications of the words "quality of life," or the
frightening knowledge that certain individuals are devalued.
By her very being, she has encouraged me to ponder these is sues
and has guided me in my thinking.
Everything Kate has taught me sprang from
the same root - trying as far as possible to see and feel life
from her point of view. What must it feel like to be stuck in
a wheel chair half the time, to be unable to say, "l really
fancy a plate of fish and chips and then a meander round the
neighbourhood, now that spring is here", to have little
or no control over what is done to me or by whom, to be reliant
on others for every aspect of my life? I've learned to be as
empathetic as possible and to try to sense what's going on in
her head, in other words to grow invisible antennae.
During our conversation (I didn't do all
the talking!) Ellen told me how much she'd learned from her nephew,
who had Down Syndrome. Later she asked me where Kate lived and
what she did during the day. I described Kate's living arrangement
and then explained that because there was no suitable daytime
occupation in Winnipeg for her when she reached school-leaving
age, she stayed in the Multiply Handicapped class - or, as I
preferred to call it, Room 107 at Gordon Bell High School until
she was 23. Then, she and three other young women (including
Diana Tureski, now also in SWES), spent a couple of years in
Project Inclusion, an individually designed adult education program
at Red River Community College. When a decrease in funding caused
the demise of this initiative, I investigated daytime situations
for adults with significant disabilities and decided that SWES,
the one run by DASCH, would be best for Kate. Luckily, she was
accepted and has been there ever since.
As we headed down to Toronto, I told Ellen
that over the years I've often popped into SWES and have noticed
with interest and appreciation the way it has developed and adhered
increasingly to it's mandate of regarding participants and individuals,
each with their own specific contributions to make and needs
to be met. I also find it immensely gratifying that, almost without
exception, the people working in SWES have proved to be among
Kate's most exemplary students. First, they take a real interest
in Kate as a person and her methods of communicating. Second,
they have learned adapt to her specific and complex needs. And
third, I can rely on them to advocate for Kate when necessary.
I stressed to Ellen that these good staff people take a similar
interest in all the participants in SWES, and I'm sure have been
as open to learning from them as they have from Kate. I think
they would agree that Kate and company are extraordinary teachers.