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Speak Out August 2013 15
Start the Conversation...
Mark’s story
Starting a conversation was something Mark Giller
was only able to do by pointing to things he wanted
or flicking his hand to reject something. Both receptive
and expressive communications were limited to the needs
of the present moment. While some spiritual people seek
the state of being and living only in the present moment,
for Mark it was not a choice. It was the result of a blood
incompatibility in his parents (RH-factor) that isn’t a
problem today, but in 1952, this was just emerging onto the
medical agenda.
Mark was the fifth child in his family, with two healthy
older sisters, an older brother who died at nine days
old from the same condition, and an older brother who
was lucky to have the same blood type as his mother.
Forewarned, doctors gave Mark a full blood transfusion at
birth to save his life; however, Mark was left with Cerebral
Palsy profoundly impairing his motor function, profoundly
impairing his swallowing (that has nearly cost him his life
on numerous occasions and continues to be his primary
health concern), causing profound bilateral deafness,
and what came to be labelled as profound intellectual
impairment.
Mark survived and grew into a delightful little boy who
played with his siblings and learned idiosyncratic sign
language, mostly as a receptive tool (like a self-devised
key word signing), that his parents devised in response
to specific needs. But Mark had none of the educational
opportunities offered to children today who have multiple
disabilities. It was perceived by service providers (who
were very thin on the ground in those days) that Mark’s
deafness combined with his very significant physical
disabilities and perceived intellectual impairment meant
that learning complex communication skills was too much
to hope for.
The focus of Mark’s early learning was undertaken
mainly by family and centred around self-help skills:
Our international committee is drafting a Communication
Declaration or Pledge which we will invite people,
organisations and political parties around the world to
sign up to. The pledge will indicate their support for
communication as a basic human right and call for action
from governments, organisations and individuals to ensure
this is enshrined in policy and in practice.
One of our primary objectives is to obtain recognition of
communication disorders as a standalone disability with
enormous impact on participation. This would provide
a powerful tool for influencing policy and funding locally
and an impetus to improve the recognition and support
of people living with communication disability in our
communities.
It’s an ambitious agenda. We know these aims will not be
achieved overnight and action will need to continue well
beyond 2014. But we have a plan, we have a cause worth
fighting for and we have a simple compelling message.
But we need your help. We need your active, informed and
sustained participation to make this campaign a success.
We need people power. And you can start right now by
starting the conversation.
Below are ways to get involved, materials and resources
to use, as well as a few stories we believe illustrate why
it’s critically important that we speak up for all Australians
living with communication and swallowing difficulties.
Chris Stone
National President
How to get involved
Sign up to become a Communication Champion. Find
out more on the Speech Pathology Week webpage or by
emailing
Send your campaign slogan
for the chance to win
Go to the website for more information.
Raise awareness in
your local community
Go to
news-a-events/speech-pathology-week for resources and
activity ideas to start the conversation in your area.