Accomplished journalist with Cerebral Palsy fights to have communication technique recognised

DESPITE having interviewed the likes of Snoop Dogg, Boy George and the Dalai Lama, this local journalist — who suffers from Cerebral Palsy — is fighting to have her method of communication recognised publicly by disability groups.

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.

Marlena Katene has been forced to take to the street to get the attention of the non Verbal disability board ISAAC2018 at the Gold Coast Convention Centre in Broadbeach. Marlena Katene with her facilitator Bert Hibbert. Picture: Jerad Williams

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), who 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.

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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.

Marlena Katene and Kylie Minogue.

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

“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.

“ISAAC needs to ditch the position statement and stop slandering people that communicate like this.

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

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Over the course of her life 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.

Mr Katene questions the push toward expensive talking devices and therapy when a method is already available.

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

Marlena Katene with her facilitator Bert Hibbert raise their concerns with Meredith Allan, President-Elect of the ISAAC and National Treasurer of ISAAC-Australia. Picture: Jerad Williams

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.”

Gregor Renner President-Elect of the ISAAC and Meredith Allan, President-Elect of the ISAAC and National Treasurer of ISAAC-Australia. Picture: Jerad Williams

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.
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“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.