What do you get if you place Jill Pantozzi, Michelle Goldsmith and Robert Hoge - 3 writers who are also prominent chronic illness and disability activists - in a room with a few microphones? A superbly insightful panel on the use of disability and illness in journalism and story telling.
On Easter Sunday morning, when I should have been at home figuring out how much chocolate I could fit in my mouth for breakfast, I was instead hanging out at Contact, a speculative Fiction convention.
The 'Access All Channels' topic was more of a conversation between the audience and panelists, which was great. I felt like they really wanted to get writers involved in how they treat, write, and talk about illness and disability. Some really valid points were brought up, that made me think about the way that I write, and how I react to things that are written about diabetes.
One of the classic things written by diabetics that I see is the '10 things not to say to a diabetic' list. They always put a bit of a wry smile on my face as I play bingo with the things people have said to me. The list is meant to entertain within the circle of those who have the particular illness, disease or disability that it talks about. But what does that list mean to people who don't have the condition? What if that list is the first thing they ever read about what it's like to live with that particular ailment? It says to the reader "Don't say anything to me". It makes them afraid to say the wrong thing, and so they don't talk to us. Which limits their sources when they do genuinely want to read or learn about the disease. If they're reading that list in the first instance, then obviously they are curious; and straight away we are stifling their curiosity and heading them towards a path of ignorance.
What we want is actually the opposite. We want people to write through their ignorance. You can't know every in and out of a disease if you don't have it, and you can't hope to gain any knowledge without being given the chance to acquire it. That's a problem on our behalf, and its something that we should be more tolerant of. We should be encouraging people not to be shy about getting things wrong, because then we have the opportunity to educate about what is right if the person really does want to learn and therefore help us to educate even more people. We need to chill out, and see that if it really is a mistake made because the writer doesn't have that real world experience, that we should be happy to send some friendly facts. If one person has pointed it out, then we don't all need to point it out. I am guilty of this, I know I am. I hope that I can keep a more open mind to diabetes in media and writing.
That's not to say that every case can be treated in this way. Sometimes things are written that are genuinely and truly offensive. Jamie Oliver is a pretty prime example of being given multiple opportunities to recognise the ignorance and mistruths that he spreads, but he continues to do so, so as far as I am concerned he is fair game. You also have people like Cross fit's Greg Glassman, who when confronted with disappointment at his comments about diabetes, decided to step up the offense to a whole new level of 'Wow, you half-wit'.
Experiences can also vary from person to person with the same condition. There are things said about diabetes and surrounding policies, technologies, treatments or day-to-day life that I don't always agree with, and I have had to learn to distance myself from the views and opinions that I don't like - and I know that people will sometimes disagree with my opinions too. I recognise that everyone considers their own opinions valid, and that the more we allow talk about diabetes, the better it is for us (again, there will always be exceptions).
Understand where your knowledge base comes from, and that if you have the condition being talked about, that your knowledge base is alot more personal than that of someone who doesn't have the condition.
The point I guess, is understanding that the more writing is done about illness or disability, the more normalised it will become in society. Even if we consider the writing to be bad, we don't need to jump all over it and discourage the writer or publication from ever trying to share our experiences again. It can be hard work advocating for an illness, and we need them to want to be on our side and want to understand. A simple message about what you thought was wrong, unsafe or offensive might be all it takes for an issue to be resolved, and for the writer to think of their mistake as a positive learning experience, rather than a deterrent. It also shows them that we can be approached before publication to fact check if we act like a friendly bunch of people.
I'm not saying I'm going to be perfect at tolerance. I will have my exceptions - media releases on the blueberry tea cure are one, and if I think something could be dangerous for the illness it is speaking about, or it is apparent that there was an ability to fact check but the author was too lazy (Hansel and Gretel) then I'm likely to arc up. But I will stop and think if what I say about a piece of writing is really helping, or if its just being picky.