Originally posted 2/6/14
The first came when a friend and fantastic writer focused her blog on “Choosing Stories.” In it, she talks about how we as parents who write about our children who have Down syndrome construct their story and choose how we portray them, and ultimately Down syndrome, to our readers. She skillfully links the way she, as an adult, feels about the stories her parents tell about her childhood, to the way our children will view what we write. Will they approve of what we said? Will they tell us we’re completely wrong about how we portrayed them? It’s a great piece – her work is always fabulous – and it gave me pause to think about what I share about Josh and how I feel about parent narratives in general.
As far as what I write about Josh, I try as often as possible to use his own words in the telling. I’ve also shared all the pictures / videos I post of him and he LOVES them. He likes the idea of being “famous” and you can tell he’s proud that I want to share them and others “like” and comment on them. But, the stories about my experiences of being his parent are more a commentary on other people – schools, doctors, government institutions – than they are about Josh.
In creating “The Road We’ve Shared,” my goal has been to create a space where all parent narratives are welcome and valued – even and especially if they don’t agree with mine. It’s my opinion that the only way we can grow and learn is if we actually take the time to listen and value other perspectives. For example, I chose guardianship as the first topic of the month specifically because I know that there are lots of different ways to see and experience it. From my perspective as facilitator on TRWS, it was a fabulous success! We had contributions and stories from a wide range of families – from parents who view guardianship as a last resort to those who see it as the only logical choice given the current legal system.
So what about the stories that are out there that some feel are detrimental to the social justice mission? There have been lots of stories and critiques from parents along the road. Some have said that certain stories about what parents really feel are harmful and may lead to further discrimination and stereotyping of people who have Down syndrome.
Today, I found another article about how we critique and attempt to influence other parents’ narratives. Both the writer and her daughter have a condition called osteogenesis imperfect – which causes their bones to break frequently. She talks about parents of children who have Down syndrome and what she has read: “parents are too often silenced or ostracized for fear their stories will provide fodder for the “opposing side.”” I’ve personally experienced this fear, and been afraid that telling my truth, as I see it, would lead some to accuse me of “dehumanizing” my son. That’s why diversity and respect are among the core values of TRWS. Dollar concludes with this sentiment:
“If a primary goal of advocacy for those with disabilities is to insist that society see us as fully human, let’s start by allowing people to tell true stories that bear the marks of that humanity—tension, paradox, regret, pain and grief as well as joy, success, happiness, love and accomplishment.”
First, I believe that (in addition to stories from self-advocates) parent narratives help create a kind of social history that is vital to the cause of social justice. By telling our stories truthfully, we can paint a picture of what life is really like in the current social environment. It does no good, for us or our loved ones, to distort our stories in order to reflect what we think people want to hear. Nor does it help to try to silence the stories that are different from our own – or what we think is “appropriate.”
If you’ve read this far I’m sure you can tell that I’ve been doing a lot of self-reflecting on this topic lately. I’d love to get some input from others! I’ll be doing lots more work on this over the next month.
If you’d like to hear more about it you can join me and the other founders of TRWS at the IDSC 321 conference.