We don't watch commercial tv in our house. We're too cynical for all the cheesy reality tv and we indulge ourselves in plenty of HBO and Apple tv for recreational watching. My personal pleasure is to watch the documentaries available on ABC iView. There have been some amazing insights into the world of disability and diagnosis in the past week and I have enjoyed sharing these with my girls.
The first was the story of Jono Lancaster who has Treacher Collins syndrome in the aptly titles 'Love me, love my face'. My middle girl asked 'Why does he look funny?'. I was so glad she asked and it opened the door to talking about how people my look differently, act differently or talk differently but that doesn't stop them being amazing people and we need to treat them with kindness and respect no matter what.
The second documentary was about Hayley, a girl starting high school who had a diagnosis of progeria. Again I had to explain to my girls why she looked different to them and correct them on asking 'Why does she look funny?'. I also explained to them that the story was about Hayley trying a new medication that would increase her life expectancy.
On both occasions I took the opportunity to teach my girls
1) the most respectful way to ask questions - language choice IS important
2) that tolerance of difference is the best way to treat others
3) that it is ok to ask questions
4) that once you have the answers to your questions you need to change the way you think and act
We all take up the standard for our own personal cause whether it is cancer, Down syndrome, ASD, diabetes - whatever. We learn so much about what affects our lives and hopefully that makes us more empathetic to the journeys of others in similar boats. However, not everyone takes up a standard that will expose them to what it is like to live a marginalised life. Ignorance is inevitable.
Just this week my husband was introduced as 'the father of 3 girls, the oldest has DS'. I am exasperated by the level of ignorance illustrated by the person doing the introduction. The DS DOES NOT define our daughter, nor does it define who we are as a family and it sure as hell has no business being the first thing you tell a stranger about us or our family.
Why is it that I can so easily share our journey through disability with the public via this blog, I can start support groups for families like us, I can reach out and actively help those who are going through the initial stages of discovery, but I can't walk up to this person and dispel their ignorance? I fear that I will not evoke empathy in them, but simply reinforce the 'crazy special needs mum' label applied to so many in our situation because I'm sure that is the reality this person has experienced in the past.
I must believe that I can make a difference. That I can change enough people's understanding that those who are ignorant are the ones in the minority.