What’s the point of personal stories?

A couple of weeks ago I asked the question whether posting my story online is useful to my readers or just mere entertainment. I asked it for a couple of reasons, not least being that I had seen another blogger do something similar and I thought it would be a really interesting exercise. I was curious to see what my readers are taking away with them and if the reality of their experience differs greatly from my expectation. I was particularly interested in inviting readers from outside the disability world to contribute and see if my story has an impact on those with little to no experience of Down syndrome.

I already suspected that publishing personal stories does have a positive impact on the people who read them (or else I wouldn’t publish mine!) but it was interesting to read why from other people’s perspective. I was thrilled to receive comments from a wide range of perspectives. You can read the comments at the bottom of the post here. https://embracingwade.wordpress.com/2014/06/24/is-my-story-just-a-story-or-is-it-useful/

A common thread that came through the responses was about finding stories that speak to us. A personal story can move us in a way that facts and figures just can’t.
We can read all the stats we like about improved quality of life and health outcomes for people with Down syndrome or how encouraging meaningful work options makes good economic sense for everyone but nothing gets a message across like reading about the reality of a situation through the eyes of someone who is living it. No matter how different our lives may feel, reading a personal story can make us find common ground we didn’t think existed but it can also help rationalise overwhelming thoughts when we read about others walking the same path as us.

Sometimes a personal story just sings to you because it was what you needed to read at that point in time. It’s important to find a voice that you can relate to or else the message rolls right off the back.

I have often struggled with the feeling of trying to be all things to all people on this blog. While I have been clear about my two main motives of providing a different voice for new parents and trying to normalise our life so that society will accept Wade for who he is….I often get bogged down mentally over trying to talk about controversial topics or trying to get everyone on board to my view of the world. I see my life as a giant canvas and blogging is like cutting it up into bite sized pieces and throwing them into the wind then wondering if anyone really gets it. It’s like I am seeing the picture but everyone else is only seeing the pieces and I have to try and explain each piece in detail and where it sits in relation to every other piece so that people can see the same picture as me. (Welcome to the mind of a chronic over thinker…..)

By posting the question and thinking about the answers, this theme sat in the forefront in my mind over the past couple of weeks and I found even more reasons why personal stories are much more important than I first realised. Recently, unfortunately, there have been a number of deaths that have impacted on me and a few people close to me. I’m not sure “enjoy” is the right word but I have come to appreciate funerals for the opportunity to celebrate a life and put into words the legacy of that person.
The other week, I went to the funeral of one of the lovely ladies at the home where my pop lives and listened intently to the recalling of her life. I only knew her from the 5 minutes or so I spent with her once a week as Wade would wander into her room and we would chat briefly. I knew her to be a happy, kind and lovely lady who adored her family but that was all I knew. Bearing witness to her life story as it was told in words and pictures at her service caused my mind to wander and reflect on what she had done and the challenges she had faced and overcome. How she had earned the respect and love of her family and friends. Her life was full of good deeds done simply, honestly and done well and it was rich because of it.
I chatted to my sister about this as she had been to another funeral that week. We spoke about how it is easy to feel overwhelmed by expectation in this world. We look at other people’s lives and feel like we should be achieving what they achieve or filling our time with pursuits that are as big and grand as the ones we see around us. Yet, when we go to a funeral of a family matriarch and listen to the stories of community service, baking cakes or games on a sunny afternoon. Of knowing there would always be a hug when you needed one or a cup of tea and a chat, we know that these simple pleasures and basic needs are often the qualities our families remember us for.

For my sister and I, these stories sang to us as mothers and made us remember that the path we are choosing to raise our children has value when everything else we read in society subconsciously forces us to fill our lives with an ever increasing amount of obligations and identities.

A few days ago, we lost someone close to us whose health had been deteriorating for some time. As he lived overseas, we didn’t see him as often as we liked but after he moved into a hospice, he was given an iPad so that he could stay in touch with everyone. His death made me think about how much he valued being involved in our story from afar. By sharing my story in depth and openly, I was connecting him to us when he may have felt further away than ever. This was something I hadn’t really realised until he was gone and I was feeling guilty about not getting a chance to see him one last time. That personal stories serve many purposes, not just the ones that the writer may intend and that’s a good thing.

I get nervous when I post something that might invite criticism or I imagine readers rolling their eyes or screaming at the computer screen over something I’ve said that they don’t agree with. Spending this much time thinking about it has shown me that personal stories serve a purpose whether the reader agrees with you or not. One person’s definition of “over sharing” is another person’s lifeline during a difficult period and that is something I have no control over when I publish. I have to remember that I love reading personal stories about people who have nothing in common with me too. I read about people who have made decisions that wouldn’t work for me or have an outlook on life that I don’t agree with because it helps me confirm what I believe and how I feel. By reading things I don’t agree with, I am forced to challenge my opinions and see how they stack up. Sometimes I am forced to rethink my opinion in the face of glaring new evidence or I am comforted by the fact that even though someone has written a passionate case for an idea, I am not swayed to change my mind and I am left feeling stronger about my path.

This experience has really opened my mind up these past couple of weeks. It has made me realise that one story is not the Holy Grail of All Answers to Everything! People read personal stories for a wide range of reasons and that’s the contract I make with the world every time I hit “publish.” For every person rolling their eyes or “thanking their lucky stars” my life is not theirs, there is someone frantically searching for answers after being told their child has Down syndrome or there is someone who learns a new appreciation about disability because of something I wrote….

It was great reading the different ways one story can effect different people but the main thing I be learnt is that my story is just one in a whole world of stories. Each one holds a different meaning for different people at different times which is actually quite a freeing feeling.

*So…let it go control freak….let it go..*

Bah! Who am I kidding….this whole blog is really just an excuse to show off this little face…and his new glasses!!!

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3 thoughts on “What’s the point of personal stories?

  1. Thank you for sharing the feedback. Professional guidelines by the Nat’l Society for Genetic Counselors and the American Academy of Pediatrics both recognize that personal stories can be very helpful to parents, particularly in a prenatal setting. Another study I read just this week of what moms of children with DS think about the newest prenatal testing shared a related point: it’s not the test result that determines a woman’s decision, it’s the information shared with the test result, which too often is next-to-nothing or negative. Personal stories do have an impact, a positive one, and I’m glad you’re sharing yours.

    • Thanks Mark! I feels like I’m stating the obvious with this post but its not until you pick the obvious apart and ask WHY it’s obvious that we get more clarity. I really love your blog for your ability to combine the facts and research (which is vital for credibility when telling a story) with a human voice. You always sound like a father first and a researcher second when you write and that’s what gives impact.
      Thanks again!

  2. Pingback: Narrative ethics: the power of story in prenatal testing for Down syndrome — Down Syndrome Prenatal Testing

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