I was approached last week by Aidan’s palliative care team to see if we would be interested in talking to the producer of a news program about our story. As always, when asked if we would be willing to participate in media, I agreed.
Over the years, Aidan has done a few media stories for varying reasons – to raise awareness of his disease, to ask for blood donors, or to encourage people to donate to various organisations. I have little problem with this, but it does beg the question, is it exploitation?
As an avid viewer of documentaries, I understand society’s need to learn about other people and, as bad as it sounds, I admit to enjoying reading stories in newspapers and magazines about people who have had tragic things happen to them.
Finding out about other people’s lives was the reason I studied journalism in the first place. Through my years in media I have come to learn the ‘value’ of a story. More than just feeding human curiosity, stories about other people’s lives have the power to educate, to inspire and to bring about change. How many times have you read a story about someone overcoming insurmountable odds and thought, “if they can do it, so can I”?
Many years prior to having Aidan, I worked as a media manager at a children’s hospital. Here, I quickly learnt that a cute, sick child could do wonders for raising funds. Yes, it’s exploitation but I truly believe it’s for the greater good.
The way I see it, there have been so many families who have come before us, families who have put their privacy on the line to raise funds and awareness about childhood illnesses, palliative care and blood donations. Without these brave people, we wouldn’t have access to the services we have today. Now it’s our turn to carry the baton, to fight the fight for future generations. There isn’t a lot we can do to save Aidan but we can raise awareness. Every story has the potential to drive change, to improve funding and to inspire someone to find a cure.
There’s also a bit of selfish reason for agreeing to do media. In my heart, I believe that talking about Aidan’s illness will give his life more meaning. I like to think that he will leave a lasting legacy and that his pain and suffering will be for the greater good. In some ways, telling his story is a little way of making that happen.
Don’t get me wrong, if Aidan wasn’t comfortable doing media then I wouldn’t even contemplate it but I know he loves seeing himself on television and in newspapers. Me, on the other hand, I hate it. Seeing myself on television makes me cringe about how fat I look, or how bad I sound or how I come across and I dread it. But none of this is about me, it’s about the story, Aidan’s story and he deserves for it to be told.