In an age of cynicism about government and business intentions, what better way to show respect for community views and values than inviting people to tell their stories?
We are routinely asked to participate in surveys which constrict us into narrowly defined answers with little room for expression. Sometimes we engage in debates where winning is the objective and respect is in short supply.
A story is personal, will usually evoke respect from others and can capture those things we cherish most highly or feel most passionately about.
Stories for policy development
Take these stories from a consultation for the proposed National Disability Insurance Scheme in Australia as an example. Here are just 2 from 260 stories gathered online from those living with disability or from their carers, friends and families.
I Wish My Son Had Cancer….
I can almost hear the gasps and you all shaking your heads as you read this but I don’t care. It is true…I wish he did.
For nearly 17 years he has been through almost every type of test, scan and has had so many procedures and surgeries that I gave up keeping count long ago. Trying to keep him healthy has been a constant and a sometimes impossible goal. A good year is usually followed by a disastrous one and sometimes they have all blended together into a swirling blur. I try to keep his brothers and their interests a priority but sometimes they’re not. As for me and my husband….that is also something that has altered and bent and is somewhat more of a habit than anything else.
His surgery to de-tether his spinal cord was cancelled yesterday…24 hours after being told it was on. Apparently he isn’t as much of a priority as someone else. Either that or someone else complained louder than me. It has been 20 months since things started to change. A spinal fusion didn’t stop the changes as hoped. Since then he has been passed from professor to specialist and had every conceivable test possible. He has lost total control of his bowels. Not cool when you are a teenager. We have tried everything that has been suggested and he has been tested for numerous diseases, intolerances and disorders. All are clear.
For almost a year the symptoms have worsened. Bowel washouts are no longer effective as he has accidents before and after. School has been amazing….thank God for special schools or he would have spent the majority of the last 6 months at home. He has had accidents at work experience, youth group and during sport. His self- esteem has plummeted and tonight he refused to go out with his friends to social group just in case he had an accident. Which he did…
His last hope is a de-tethering which we were told would happen as soon as all other possibilities were ruled out. They have been and 6 weeks later nothing has changed. Oh, I forgot to tell you about the hip spasms which cause him pain and last week meant he had to get out of his chair as his right leg wouldn’t stay on his foot plate…
He NEVER complains….never has. Perhaps that is part of the problem. He needs to cry and complain and then someone will listen. Maybe…..
We struggle on…having to almost beg for someone, anyone to listen. He needs to be symptomatic before anything gets done. I said to someone the other day that because he is disabled he comes lower down the pecking order to many doctors. They were horrified at my suggestion but I have been doing this a long time and I know…….she will too in time. See, they can’t “fix” my son…there is no cure…..not ever. No glory in incontinence, paraplegia and brain malformation.
Whenever he needs something we have to find the money that we mostly don’t have. Sure we get some funding but it never covers the cost of stuff. Did you know that one rectal catheter costs $20 and they are supposed to be used once!! We use them til they explode up his bum. We get very little respite and there are definitely no nurses or support staff to coordinate his care and our lives.
Most of what we know we had to find ourselves and on a bad day it is all too hard. And he will never be cured….no chance. Oh, and would you believe that every couple years we have to fill out a mountain of paperwork and go to see all his doctors to prove that he is still disabled!
So yes I am angry, frustrated and upset because what does he have to do to be heard? How much more do you want him to go through? How many more times does he need to lose control of his bowels in front of his classmates, friends, girls and strangers before someone says enough! But he doesn’t complain just chooses to stay at home and watch tv in his room instead of going out.
And we all wait with him while someone, somewhere decides that he really isn’t as important. He doesn’t complain, he can’t be fixed so he can wait a bit longer.
So think about it and don’t condemn me for wishing that my son had cancer…..
I am a paramedic working in rural Victoria and I have a regular patient. Let's call him Tom. Every time I get called out to Tom, he's a little closer to death and he knows it. But the only thing he is ever worried about is what will happen to his two disabled sons when he does die.
They held the drip bags for me when their dad was having a stroke. They wiped away tears to pass me syringes full of drugs to get Tom through another heart attack. They love their Dad with a ferocity equalled only by that of their fathers love for them.
Not too long from now, I might be the one to have to tell them their father has passed away. When and if I am, I hope we as a society will be able to provide for Tom's sons the care that he can no longer offer them himself. I come close to tears knowing we won't; that I'm lying to Tom when I tell him the system will take care of them when hes gone. It fails thousands of people just like his sons and they will be no different. The NDIS isn't perfect but its an honest attempt to change the inhumanity we force on those who need our help most. Give it just a minute's thought.
A smart policy maker can learn a great deal more about the needs and concerns of the community from this sort of engagement than from a survey.
Notice that rather than jumping to a position on the policy issue at hand the contributors told of their own experiences and fears. Often when we are talking about an issue people jump straight into a position and it is very hard to then tease out the reasons they have taken that position in the first place.
If I say ‘I oppose this policy’ and people start to then try and ascertain why, it is likely I will be defensive. If asked for my story - how I relate to the issue before I have taken a public position I will be much more likely to reveal my motivations which gives a much better chance of all sides of a debate reconciling their diverging views.
Stories for celebration and recording history
Stories can also help us to celebrate, to relive the past and to archive and store our history.
Take, for example, these tales about the opening of the Sydney Harbour Bridge, which turned 80 last year:
My mother's uncle was the foreman in one of the workshops at Dorman Long, Middlesbrough, whose engineers designed, and whose works, produced the majority of the steel for the Harbour Bridge. She regaled us, her children, with tales of being taken as a 12 year old ( in 1932) to the steel works to see " The Harbour Bridge" - I think maybe a family day showing film of the opening in Australia. Then amazingly, as she would never have imagined in her wildest childhood dreams, in 1960 as the wife of an RAF officer posted to the RAAF, she actually saw the bridge for real in Sydney. Many years later, her granddaughter emigrated, married in the shadow of the Bridge, has taken citizenship and is now the proud mother of two young Australians. She passed away aged 92 on what we have just realised was the evening of the 80th anniversary. The Bridge is Us!
My mum is Barbara Kermode. She was born on the same day as the Harbour Bridge opened. Her parents named her Barbara Bridget (does that rhyme with something?). Her great grandmother, Mrs Maria Ryan, walked the Bridge the day it opened. She was 100 years old at the time and appeared in a newspaper article in the day. Mum is coming down to Sydney on her 80th birthday to do the Bridge climb this Sunday (yes, it's a day early), with her daughter, her daughter-in-law, and 3 of her grandchildren. Her husband John, her 5 children, 17 grandchildren, and 4 great grandchildren are all very proud of her. This is her time to shine on the iconic structure she was named after. Happy 80th birthday to mum and the mighty Harbour Bridge.
Stories for planning and development
Asking the community for their stories is a highly respectful way of beginning any project that will effect people’s lives and the places in which they live those lives.
Asking for stories about what is special about a place and what people might treasure about it before presenting proposals to change it can help planners,designers and architects to preserve the important features and to pay homage to history in new development. This can make for a much happier community and a much better result.
Here’s an example from a project looking to replace the Old Mandurah Bridge just South of Perth in Western Australia:
As a child growing up in the 1950’s we always had swimming lessons over the Christmas holidays, one year I spent my holidays in Mandurah and had swimming lessons by the old bridge. I remember we had to jump from the jetty and I was very frightened. An older boy swam toward me and said, ‘If you jump I’ll catch you’. Hearing this, I felt safe and jumped into the water. Thanks to this boy I was able to earn another swimming certificate. I have worked and lived in Mandurah for a number of years now and every time I cross the Old Bridge I think about that boy and how kind he was to a frightened little girl.
The Old Bridge has become a Mandurah icon, admired by locals and visitors alike and the many of us who enjoy walking, sitting or fishing under it. Hopefully a new bridge will encompass all that this bridge offers and more.
Story telling can be useful at any level, from a board meeting to a national policy debate. It helps people to understand, increases empathy and respect. Try it sometime.
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