The Information Award. The award is given for work that raises
awareness of AA C. It includes articles, lectures, public appearances, radio interviews or
public work of art.
This award goes to Jack White, of Shelley, Western Australia.
Jack died this year, he was only ten years old but kept using his AA C strategies until the
very last days.
Jack White is a 10 year old boy who has always just wanted to live an ‘ordinary’ life,
but in doing so, has been extraordinary. Jack has mitochondrial disease and due to
this, is unable to sit, stand, walk or talk without full support and assistance. Jack has
used the PODD communication system as his main means of communicating since
he was 3 years old. Through using his PODD, Jack has been able to share his
bright mind, wit and imagination and been able to live an extraordinary-ordinary life
full of adventure, travel, pirates and superheros, a passion for the ocean and all
creatures within it, and plenty of high-jinx spy games – finding the words to call his
nasogastric tube his ‘comms’ for example.
While visiting Sculptures by the Sea at Cottesloe Beach, WA in the summer of 2013,
Jack White was inspired by a glass sculpture of a whale shark. Set against the
turquoise blue waters of the Indian Ocean, the sculpture, named ‘Transparent Sea’,
so captivated Jack that he used his (PODD) to tell his communication partner that he
wanted to write a poem about it. Using partner assisted auditory/visual scanning
with a combination of head nods, squeezey big blinks and his voice to indicate yes,
Jack navigated his PODD, writing for over an hour. He used the same AA C
strategies and system to share what inspired him to write his poem. His poem, and
inspiration, was later entered in the Sculptures by the Sea writing competition and
Jack won first prize. This excerpt from ‘Jack’s Story’ written by his mother,
Charmaine White gives further insight:
“The message in Jack’s poem is profound. Like the whale shark, Jack is
It took Jack just over an hour to write his poem, all the while, fighting off
seizures and fatigue. His poem aptly describes how he yearns to experience
the freedom and mobility to move with ease and explore his environment just
like the whale shark, as mito has robbed him of the ability to use his legs and
he is confined to a wheelchair. On his entry form Jack was asked to comment
“What inspired your writing piece and why?” he answered: “I can not speak. I
know (what it may be like for the whale shark). I’m wanting you to know.”
I’m not dead,
I feel. I love affection.
Peaceful, I can know.
I can not talk.
I can not go.
Imagine I go to my park, beach, sand.
I, you, float, whale shark.
I need to swim.
Jack’s poem, along with Jack’s Story now sits on a plaque alongside ‘The
Transparent Sea’ sculpture as a permanent exhibit at the Maritime Museum in
Fremantle, WA. Through his poetry, Jack is raising awareness of AAC. His poem
and his story stand next to ‘The Transparent Sea’ sculpture in a public space, as a
permanent visual testament to anyone with complex communication needs trying to
have a voice, trying to make their voice heard.
Last year, Jack was chosen to be the 2014 Variety Bash Ambassador . His
involvement as the 2014 Ambassador meant he travelled up to Exmouth, opened the
water park there and formally led off the bash. Jack also had his dream come true,
going out whale watching, spotting his beloved whale sharks among other ocean life.
Throughout this remarkable experience, Jack of course had access to his PODD and
was able to use it in his ‘professional’ role as Ambassador, chatting with the
‘bashers’ and tour operators alike, advancing awareness of AA C amongst a wide
range of different groups of people within his state.
Sadly, after a long battle with illness, Jack recently passed away. That Jack was able
to communicate effectively albeit with great effort using his AA C system and
strategies right up to his last few days, meant he was, at just 10 years of age, able to
grapple with the hardest conversations one can expect to have in life when facing
the reality of one’s own mortality. It was during this time when Jack was told about
this nomination for an ISAAC Award. It gave him great joy to know that his work
would be recognised in the form of an ISAAC nomination.
We will send Jack’s parents the award certificate and the gift voucher telling them
to buy a gift for themselves from Jack.
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