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Does Sharing Private Pain For Public Gain Actually Work?

Mitch Wallis and Lisa Cox have endured real hardships in life and are using their stories to empower change, but does it come at a cost?

It's an age-old technique. Charities and not-for-profits rely on ambassadors and lived experiences to help further their cause and inspire others to overcome obstacles.

Yet charities are challenged to attract donations of time and money from a compassion-fatigued public.

Where do you draw the line between using people's struggles for a worthy cause versus potentially exploiting vulnerability?

It runs the risk of being 'sympathy porn' or 'token pity party' if not approached correctly, two Australians who travel around the country sharing their story told 10 daily.

It's an important role, but one that can be burdensome, said Mitch Wallis, the founder of Heart On My Sleeve - - one of Australia’s fastest growing mental health organisations.

"Raw isn't the goal. Real is the goal," he told 10 daily.

Wallis's heart tattoo on his sleeve is emblematic of the mental health movement he is spearheading. IMAGE: supplied

"Like with a steak, if we just serve it up raw without searing it -- or without processing it to take off the bacteria -- it will end up hurting someone," he said.

His steak analogy refers to ensuring the speaker -- as well as the message -- is well-prepared.

Wallis has a Masters degree in psychology from New York's Columbia University and has two decades of lived experience with anxiety, obsessive compulsive disorder, depression and dissociation.

Hundreds of thousands of people around the world have watched Wallis during a mental breakdown, which he recorded on his lap top. He held onto the footage for several months before sharing it.

There have been times where I feel like I'm just a band, and I disconnect the sound of my own songs and I feel numb. That's when I re-evaluate, he said.

Wallis explained that if a person who is an ambassador or motivational speaker has not processed their trauma or doesn't have enough support, it can be counter-productive.

"If you're sharing a story publicly because you want help, that's not the right motivation. That should be done privately. But if you share your story publicly to help someone else from a position of strength, that is really powerful.," he said.

The work ambassadors do -- while often with the goal of challenging stereotypes -- can sometimes serve to reinforce them, said Lisa Cox.

Cox has been on the speaker circuit for over a decade talking about body image, living with a disability and sharing her long-term hospital patient experience.

IMAGE: Lisa Cox

In 2005, Cox had an unexpected stroke as a result of her brain injury. She had one leg amputated and heart surgery. She is now partially blind and has lost nine finger tips and uses a wheelchair for mobility.

"I have said no to presentation offers before because I feel I would just be rolled out as the token pity party girl," she said.

Cox refers to this as"disability porn" and tries her best to avoid it.

Cox was in ICU for two months. IMAGE: supplied

"Pretty much all of presentations I start with 'I'm not here to get your pity', I'm here to share my story because we can do better," Cox told 10 daily.

Fighting To Be Seen And Heard

There are now more than 50,000 registered charities in Australia competing for the public's charitable dollar.

The 2018 Giving Australia report, shows the total amount donated and claimed by individual taxpayers is down 7.2 percent.

One in three Australian taxpayers made a donation to charity and claimed a deduction. The top three reasons Australians gave was because ‘it’s a good cause/charity’, ‘I respect the work it does’ or ‘sympathy for those it helps'.

Dr Yvonne Luxford has led mental health and palliative care organisations, where sharing people's pain is part of challenging policy and perceptions.

"The sympathy porn concept ... have I been exploiting people’s struggles?"

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"I have worked in some difficult fields and have always recognised the power of people telling their own stories."

Luxford recalls a time when a child and family affected by children's palliative care policy spoke to politicians. She believes it's incredibly impactful for decision-makers to see living proof.

That kind of impact you can't get from me just saying it, she said.

"Yes, they invoke a strong reaction in the listener, but I think more importantly they keep the topic real -- each statistic is actually an individual human experience," she said.

Wallis speaking at a charity event in 2018. He also gives presentations and training to corporations around Australia. IMAGE: supplied
Looking After Yourself As You Help Others

"I've cried on stage before, it's not easy. But I know from the feedback I get how much people get from my story. Not just emotionally, but practical benefits too," Cox said.

Cox said the impact she has can be personal or political.

"Just yesterday I got messages on my Instagram from teenager girls saying you really helped me," she said.

In terms of more solid evidence of impact, she said in the 12 years she's been talking to medical professionals about pressure injuries from long-term hospital immobility, there is clear evidence to show these bed-sore injuries have declined in Queensland hospitals.

Cox speaking at a TedX event. IMAGE: supplied

Wallis's advice is to "always keep something for yourself" or else you  run the risk of become immune to your own trauma.

Luxford said charities have a duty of care to properly vet and support their ambassadors.

"It needs to be clear that they are willing to speak and share their story with strangers," she said.

"Equally it's important, as I have, that the relationship is maintained and you keep checking in on them."

Contact the author alattouf@networkten.com.au