It's been a while since I ventured to a written blog where I speak entirely personally. Over the past few months I've stayed almost completely quiet, other than a single radio interview.
It is time for me to speak on what could and should be the issue that propels disability rights forward into our century.
First, a word for Chris and Connie.
Hold your heads high. Over 27 years for me, and 35 years for my parents we have seen parents who do not have the strength that you have to fight for their children. For some, their children were born at a time when possible treatments were decades away. They loved their children, but there was little in the way of treatment to fight for.
You have done everything and more than anybody could expect of two young parents in the scary world of a muscle-wasting disease for the first time. I hope you have felt the support from our small but strong community.
Have no regrets – you gave Charlie the chance he needed, and the love he deserved.
With that said, here's a word to the public:
I have spent time in paediatric intensive care, and spent at least half my life in hospital. Even more of my life we have administered hospital treatment at home. At age 10 I was discharged home on ventilation when I sleep without round the clock nursing care. I live with complex care needs – I am not sick all the time, but I am continually disabled.
I have dozens of friends with a tracheostomy and ventilator to enable them to breathe around the clock. They cannot blink. Some can only move their eyes, while lucky ones might be able to move one of their fingers or thumbs. They use these little ways – their eyes or tiny finger movements – to be part of our world. They chat, they lobby, they go out with friends, and some are able to work. They, too, are sick sometimes. But they are always disabled.
All of us contribute to society.
I have heard a lot from the public saying they wouldn't want to live my life, or a life unable to breathe on their own. I can understand that. But here's the thing – they have lived a relatively normal life. That gives them something to miss. I do not miss breathing unaided in my sleep. Nor do I have much of a desire to be cured. Would I like to be healthier? Yes! Chest infections and sepsis are never fun. If I could feel well more, I'd be quite happy with that.
Please do not assume that Charlie's life – or any of us who live with severe muscle-wasting conditions – do not have a life worth living.
If Charlie's parents said enough was enough at the beginning, I'd respect them and love their bravery no less or more than I do now. Parents know their children. They know when to keep fighting, and when there isn't a fight to be had any more.
Sadly, I've experienced my own time in the judicial system. It is inherently ableist to both extremes – either extremely sympathetic or extremely hardened to disabled people. I do not believe the care of any child or individual should go to court. If parents and family, who have not intentionally harmed the person or child in question to that point express wishes, then everything reasonable should be done to facilitate that.
I don't know everything surrounding Charlie's medical condition. That should not be something we are asking for as a general public. But I do know this – medicine is not an exact science. Medical opinion is named that way because it is often open to interpretation. Hirano was educated at Harvard – possibly the most renowned University in the world. He would not have waded in lightly. As such, this is a case where several experts on each side of the debate disagreed – and here is where parents should have the deciding vote.
Socialised medicine has not given rise to this case – ableism has. Because Charlie is disabled, he has been viewed by some as not worth saving or treating.
I now genuinely fear that, taken away from my own medical team who I trust with my life, if I was to fall seriously ill that they would just not treat me as worth saving. And sadly, I've had friends go through such things.
Please think before you speak. Just because you would not want to live in a set of circumstances does not mean that is no life. I live a fulfilled life. So does many others with the most severe disabilities and illnesses. Do not make us less worthy. Our fight to be treated equally and included in society is continuing because of attitudes that we do not have lives worth living. We do.
Please be kind to this family. While they've been experiencing trauma, their world is about to be flipped upside down once again. The hardest part is ahead of them.