I had an interesting experience a while ago when a person who knew my story very well and was completely on board with my philosophy about raising a child with Down syndrome enthusiastically told me that she was pregnant and all of her tests had come back ‘normal’ which was a huge relief to her…. I was happy for her, of course, but I couldn’t stop myself from thinking…
Do I achieve anything by sharing my story?
Or do people just grab a bucket of popcorn, read it and think quietly to themselves…
“Thank goodness that’s not me”?
Is the reader leaving with a different perspective or do people just like reading stories about other people’s lives as entertainment then move on?
There’s two main reasons why I choose to make my writing public rather than a private journal of my thoughts. The first is to provide another voice to the parents out there who have just entered our little club. There are a lot of stories out there but I guess I wanted to provide the type of voice that sang to me in those early days. I needed to hear from parents who could explain to me in minute detail EXACTLY how I was going to wrap my head around this thing. I wanted positivity that wasn’t wrapped in a sugar coating and a reality check of the challenges with practical advice, not wallowing in the depths of despair. I’m not a religious person so unfortunately trusting in God was not going to help me much either. It was also very helpful to hear from parents who admitted their faults and swore a bit…..!! I believe that a variety of voices are really important and no one gets all their information from one source but I hoped that my story and my style might connect with some new parents at a time when their heads were swimming after diagnosis and provide them with a port in the storm.
Being told prenatally that your child may have Down syndrome is a shock. It’s an even bigger shock if the only thing you know about Down syndrome are outdated stereotypes and the cold, hard medical information falling unemotionally out of the mouth of the doctor standing in front of you. (This was not my experience and I am forever grateful to my midwives for their compassionate professionalism with us but it is the norm for most parents, unfortunately…). I hoped, that if people found themselves in a similar situation, they might have a lot more up to date and positive information available to them after reading my story so that a diagnosis of Down syndrome did not have to be a bad thing….just a different thing. I hoped that people might be more empowered to make their own minds up about how they feel rather than feeling pressured by the medical world to see their pregnancy as a long list of ‘complications’.
The other reason I write publicly is pure self interest…. I want to make the world an easier place for Wade to live in. I am realistic enough to know that unless society’s attitude toward disability changes, it doesn’t matter how much work we do to give Wade the life skills he needs to exist in this world, he will never be truly accepted. I want to show that people with Down syndrome are more capable than people might think. To dispel some myths and remove some barriers so that with more understanding comes more acceptance and Wade stands a better chance of leading a life he deserves.
I wanted to join the revolution of new parents who are joining together to tell the world that raising a child with Down syndrome is not the end of the world and has its own unique rewards and benefits as well as the challenges.
One trap that you can fall into when you write in the disability world is remaining within that world….preaching to the choir. It’s wonderful to write amongst like minded people with everyone nodding in furious agreement about the topics we raise but I am really interested to find out what effect my story has had on people with little to no previous experience of Down syndrome in their lives.
crazily bravely going to ask you to tell me….
Has my story changed the way you view Down syndrome?
If you were to meet a person with Down syndrome now, would you treat them differently than you might have before?
Do you have a different view on the inclusion of people with a disability into schools/workplaces etc?
Have you changed the language you use to speak about people with a disability?
This one is very personal, but….
Has my story changed how you feel about potentially having a child with Down syndrome?
Would you feel better informed when dealing with doctors during a pregnancy now?
I guess I just want to know if personal stories can affect change or if they are just a good read…..
A few important points about this…. This isn’t a fishing exercise for compliments, (although I’ll gladly accept them…!) I am comfortable accepting difficult and challenging responses too and I will approve all respectful responses on the post. If you would like to contribute without your comment being published then say so at the bottom of your comment or you can email it to me instead. I will probably write a follow up piece at some stage discussing the range of responses (assuming I get some!) but I won’t identify anyone who wishes to remain anonymous.
If I receive any trolling or hate speech which is obviously intended to offend it will not see the light of day and I will spend as much time thinking about it as it takes me to push “delete” so don’t bother wasting your time…
I got this idea from a wonderful blogger Jen Jacob over at Blessings Beyond the Ordinary who does amazing work supporting new parents by co-writing a book “Unexpected”and co-establishing an online resource “Down Syndrome Diagnosis Network” in America. Thanks Jen….