What We Need!

Carrie is six years old. She is sitting at the dinner table with her family. She looks down at her Brussels sprout with absolute loathing. She isn’t going to eat it unless it’s forced down her throat. She gazes around at her family members who are all in conversation. Mum is in an animated discussion with her sister. Dad is typically silent, fork in mouth, while he watches Sally do her job as principal on Home and Away. Her two brothers, Aden and Finlay, are discussing something loudly and obviously not agreeing. She looks at her brothers and uses the universal sign for “What’s up?” Palms facing upwards, elbows bent and a shrug of the shoulders. Finlay, with over-exaggerated lip movements, replies, “Tell you later,” while clumsily signing, “Tell you over”.

Carrie sighs and toys with the idea of trying to find out what the others are talking about. In the end she decides not to. She knows that the response from other family members will be the same as Finlay’s “tell you later.” She looks back down at her Brussels sprout. It suddenly becomes more appealing.

The above comes from one of The Rebuttal Classics, Carrie. It is one of my favourite pieces of writing. I watched a parent of a deaf child read this story and she broke down in tears. She said that it was the first time ever that anyone had articulated what it must be like for her daughter at home. “Never again”, said the mother, “Will I ever tell my daughter not to worry. For the first time I have understood how frustrating it must be.”

This is the power of story-telling. Story telling is a much underrated tool in advocacy. Our politicians receive mountains of written information every day. Joanne Duhl is from America and is Vice President of TPI, The Philanthropic Initiative. In an article posted  on the blog Deep Social Impact she writes, “As someone who has been in the field of grantmaking – both in government and philanthropy – I’ve had many, many reports “submitted” to me and, truth be told, too many of these have been put directly on the shelf, where they have remained” Says Duhl, “An emerging trend in grantmaking is helping to empower community members to tell their own stories in a way that builds local capacity to strategically use information. “

Effectively what Duhl is saying is that people are beginning to realise the power of personal experience in creating change. The stories of real people, told by people that have experienced the issues are vital. In today’s age of double speak, where people try to use “appropriate” political speak and diplomacy we have forgotten the power of REAL people.

David is deaf. He comes from a single parent home. He grew up in a country town in NSW. For years he felt alone. He was the only deaf person in his school and seemingly his whole community. In fact he did not meet another deaf person until adulthood. David has a PHD and has published works on the social impact of disability. David talks about how his schooling has left him with deep scars.

“ ..On the bus going home from school I would always try to sit by myself. I liked to sit at the very back of the bus so I could see everyone in front of me. If I could not get a seat at the back I found myself anxiously looking around. I feared that someone would be talking to me and I would not know. I would wonder if they were staring at me, talking about me or making fun of me. Obviously being a teenager I felt a strong desire to fit in. My deafness set me apart from my school mates and I hated it. This fear of interaction and unwanted attention was my constant companion.”

Imagine David advocating for deaf kids. Imagine him talking to Governments. Explaining to them the experience of deafness and how it impacted on him. Imagine David telling his story as a way to create change and highlight the need for better counselling and mental health support for deaf kids. David’s stories carry weight. Why? Well because he has been there and done that. Imagine David collecting similar stories and advocating for increased funding and family support for deaf kids in mainstream settings. He would have, what we call, CLOUT! He has the ability to hit a raw nerve and bring the experience of deafness to life.

Andy Goodman is a communication consultant. Some people may recognise Goodman as the writer of the hit TV show The Nanny. Goodman is a key player in philanthropy in America and advises not for profit organisations of strategies to attract funding and support. Says Goodman, The fact remains: if your goal is to educate, persuade, or simply connect in a meaningful way with a particular audience, storytelling is the single most powerful communications tool available to you.”

Goodman is not naïve enough to think that story telling is the end product. He points out that data and numbers are needed. But says Goodman, “if a person hears a good story, it is hard to erase the impact with data.” Stories bring the data alive.

The lived experience is something that our advocates underplay too often. Bill Shorten, whether you like his politics or not, highlights the power of real people and real stories in influencing political debate and decision making. In a speech to the National Disability and Carer Congress, 2nd May 2011, Shorten had this to say;

“..I’d been around the traps. I’d travelled from end to end of our great country – from shearing sheds and steel mills to Beaconsfield – meeting hardworking men and women and listening to their stories. I thought I’d seen it all. But I hadn’t. I thought I knew my country. But I didn’t. My thousand days working with you were more than an education – more than a revelation. They were a privilege. I met a lot of great people and saw a lot of not-so-great things. It was sobering to realise so many of my fellow countrymen and women are literally exiles in Australia, disempowered, shut out of the Australian way of life … and unable to lead an independent life. It was a privilege to be among you when you started to unite into a disability movement determined to campaign to finally make civil rights accessible to all. And, let me tell you, I haven’t forgotten what you told me. I haven’t forgotten your stories.”

You can be a cynic if you want to. You can claim Shorten is all about Shorten. But there is one undeniable fact. It was the stories of real people that moved Shorten. It was these stories that led to the movement that created the National Disability Insurance Scheme movement. It was real people and real stories.

Advocacy is about creating change. To create change you have to know your stuff. That is why it is so important that our Deafness Sector organisations utilise the skills and experience of deaf people. Too often they fall into the trap of looking at a person’s PIECE OF PAPER and forget about the UNIVERSITY OF LIFE. Too often they employ people, imminently qualified academically, but with no background in deafness. It is as if experience in deafness is an afterthought. Often these ACADEMICS are simply playing catch up with deafness issues and left floundering. Often they are just using their role as a stepping stone to their next job. They often lack passion, desire and an understanding of the LIVED EXPERIENCE. As a consequence they often lack credibility when representing the deafness sector.

The lived experience is all too often underplayed. Who do you want representing you? A person with no background in deafness with six University degrees or a person with just one qualification, a life living as a deaf person, a history of tackling barriers head on AND A TRACK RECORD OF CREATING CHANGE.

Well unfortunately in our deafness sector they will go for the six degrees nearly every time. They will forever underestimate the value of the LIVED experience because someone is “imminently” qualified. What I do not understand is why organisations like Deafness Forum and most of our Deaf Societies cannot and do not TARGET deaf people for senior representative positions.

I know three deaf people who are unemployed at the moment, all who have been actively involved in deaf advocacy. One has a PHD that focused ON DEAFNESS. One is a lawyer with human rights background. The other is a person with an MBA. THREE vastly qualified people with not only ACADEMIC experience but also the LIFE EXPERIENCE that is so valuable. Why have these people not been targeted for key roles in the deafness sector? Surely these people have something to contribute. Or are they supposed to just volunteer their expertise?

Deaf sector organisations seek my advice all the time on anything from Aboriginal issues, to the NDIS or captioning. But will they pay me for it? NO! I do it from the goodness of my heart, apparently. The point is that there is a vast pool of talent out there, all deaf and none targeted or utilised by the deaf sector unless it is on a voluntary basis. Something is very wrong.

As Bill Shorten said REAL STORIES and REAL EXPERIENCES are what moved him in his policy direction. The deafness sector needs DEAF people with the lived experience leading them. Out there are wonderfully talented, experienced and qualified DEAF people but the deaf sector does not want or seek them.

It makes no sense to me.

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2 thoughts on “What We Need!

  1. I concur, the impact of the lived experiences helps shape the way the service delivery should be.. in relation to the Deaf sector not utilizing its talent, however scapegoating, abusing that knowledge to the point I often refuse to partake in such debates or information. When information is not shared, not congruent to the needs of the people then you have useless information that makes bad decisions and shows lack of appropriateness in service delivery. I can no longer allow the Deaf sector to THINK if knows what is best for Aboriginal or Torres Strait Islander Deaf people when they do NOT include them in the discussions in the first place.. now does that me me something I am not? no it makes me responsible for my ACTIONS and represent those of my COMMUNITY not to be TREATED like the DEAF who are not engaged with all their wealth of KNOWLEDGE…

  2. I agree, nobody cares much any more. I fight everyday to get access for deaf and HI alike, if I get ANY feedback at all it is negative. I often think why bluddy bother with them, most do not deserve support, I do it for those who can’t fight now and do not care for the rest…… The general approach is ‘We have rights in law’ and do nothing after to ensure those rights are actually there. Nobody uses their brain, in effect it’s a paper law and only demand and campaigns will make it real. Can you believe ardent campaigners get flak for the bone idle sitting on their ass ? believe it. Some deaf sadly do not deserve access.

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