SHOWBIZ WRITER TELLS EXPERTS - TALK TO THE HAND

GOLD Coast writer Marlena Katene has interviewed and met the biggest names in entertainment and politics. Think the Dalai Lama, Ed Sheeran, Kylie Minogue, Russell Brand, Snoop Dogg, Jimmy Barnes, Boy George, Minnie Driver and Sir Richard Branson. Yesterday, however, the 27-year-old Cerebral Palsy sufferer had to take to the street to defend the way she and others living with severe disabilities choose to communicate because experts refuse to acknowledge her message board technique.

A GOLD Coast writer has taken to the street to defend the way she and others living with severe disabilities choose to communicate.

Living with Cerebral Palsy, Marlena Katene uses a method called Facilitated Communication (FC) where she guides an interpreter’s hand across a message board.

The technique has allowed her to work as a journalist for half a decade and interview the biggest names in entertainment and politics.

Think the Dalai Lama, Ed Sheeran, Russell Brand, Snoop Dogg, Guns and Roses’ Steve Adler, Boy George, Minnie Driver and Sir Richard Branson.

Yet despite her success and a lifetime using the method, disability groups are refusing to publicly support the technique.

The International Society for Augmentative and Alternative Communication (ISAAC), which is hosting a conference on the Gold Coast this week, says FC is open to misinterpretation and abuse because the interpreter has the potential to control the message.

In 2014, ISAAC made an official ruling on FC, saying it did not support it in clinical practice.

Yesterday on the Gold Coast, it said it would not reconsider that position.

Protesting outside the Gold Coast Convention Centre at Broadbeach yesterday, Ms Katene said she was not looking for funding or for FC to be endorsed. She simply wanted it to remain an option for people with disabilities.

“This is not about me, but about people who will need all options to communicate in the future,” she said.

“My work in an example of how the use of FC can work for some people. After all, you can’t manipulate celebs to make up words. My communication needs to be direct and authentic.

“The danger is policy makers will take these positions on board and reconsider the teaching and validity of this method.”

Ms Katene, 27, says she has used five different communication devices, many of which have cost her up to $15,000, yet FC is preferable because it is quicker.

She agrees there are some cases where the use of FC has been abused, but doesn't believe ISSAC should have a blanket position ruling out opportunities for those who want to use it.

ISAAC president-elect Meredith Allan, who communicates via iPad, said ISAAC’s stand was backed by science and would not be revisited.

“It is about protecting vulnerable people,” she said.

“We have four papers by people who use FC in the program, and about five others attending the conference,” she said.

“As I said in my opening keynote this morning, I don’t see ISAAC changing its position but it must be remembered people who use FC are also people who use AAC.

“The statement does not stop people from using FC, and everyone has a choice to their method of communication.”

Speech Pathology Australia President Gaenor Dixon said the association did not support the method clinically.

“We do not recommend that speech pathologists use it (FC) as a method of communication,” Ms Dixon said.

“There are plenty of other strategies that can be used to allow people autonomous access to communication.

“As professionals, we are advised to take into account the evidence provided to us, and ethically given the risk of harm we don’t advocate the use of the method.”

Ms Dixon said it is not the association’s intent to devalue the voice of those who do chose to use FC.

“What we are wanting to do is engage and explore methods that allow autonomous communication,” she said.

Ms Katene said she and her interpreter Bert Hibbert would continue to fight for the recognition of FC during the conference this week.