I was watching TV on Tuesday night when a news story came on about a dad who is going to be walking Tasmania’s Overland Track to raise money for Life Without Barriers. So far so good, it sounds like a pretty nice news story. And he’ll be doing this with his son who ‘suffers from Cerebral Palsy’. And that’s when I felt annoyed.
The young boy in this story doesn’t look like he’s suffering to me. Far from it, it looks like he has a wonderful life with a loving and adventurous father who makes sure that he is right there with his dad experiencing life at full speed.
It got me thinking about language and how we simply adopt sayings as part of our rhetoric without really considering the words we are using. And unfortunately ‘suffers from’ has become part of that rhetoric. Even when I was writing the ‘about’ section for this blog, I had to stop myself from typing ‘Harry suffers from x, y and z’. In autopilot mode, those words were ready to simply fall from my fingers onto the keyboard.
Is Harry suffering?
He is joyful, boisterous, loving, inquisitive, determined, bright and impatient. He also has an acquired brain injury, cerebral palsy, epilepsy and various other medical and physical issues. There are times when his tight muscles cause him discomfort. I know that his noisy little sister who worships him to the point of constantly trying to crawl and climb all over him is probably fairly irritating. I also know that, occasionally, he can find his seizures scary. But is he suffering? Oh hell no!
I called a friend, to sanity check whether I was becoming unnecessarily outraged and reading too much into words. He has a chronic illness, so I felt that he would be a solid sounding board for my annoyance. He hears it plenty – ‘so and so suffers from X’. And for him it’s a choice. He could succumb and ‘suffer from’ X, but he chooses not to. Yes, it is part of him, but that’s just it. It’s part of him, not the whole of him.
I think the concept of suffering is complex and personal and it waxes and wanes depending on how we’re feeling at any given moment. But that feeling is ours to determine, not to be dictated to us by the media. I don’t care that they were simply trying to pull on our heartstrings, words have power. And none know that more than the media whose share index is determined by those words.
It’s pretty arrogant of us to assume to know what anyone is or isn’t suffering from at any given moment. And when it comes to disabilities, it’s an out-dated and ableist description. You are not like me, therefore you must be suffering.
Looking deeper, my visceral reaction to hearing those words on Tuesday night probably says more about me and where I am in my journey than anything else. Especially when admitting that I almost used those words to publicly describe my son just a few weeks ago. Ah, so this is about me – aren’t the things that annoy and frustrate us always about us anyway?! The path to true acceptance of an unexpected life is a long and winding one – one step forward, four steps back, two steps forward and on and on. But I feel that I am taking more and more steps forward and, for now, it’s time to drop the suffering.