‘It doesn’t matter to me; therefore, it doesn’t matter.’

Recently, former Prime Minister of Australia, John Howard was asked if he thought Australia was a racist country. This was in response to a survey which showed that 76 percent of respondents believed racism is indeed present in Australia. He replied: That has not been my experience. I have to respectfully, to that 76 per cent, say I don’t think there is underlying racism in Australia’. Surprise, surprise. The privilegest, whitest, mannest of privileged white men has had no experience of racism in Australia. 

I talk about privilege a lot, and I acknowledge mine daily. It’s an important and integral part of what I think about when working and playing in the diabetes space. Perhaps it’s because I’ve been working professionally in advocacy roles for a long time, often advocating for things that really don’t have all that much baring on me. But not once have I ever thought ‘That doesn’t matter to me, so it’s not important, and doesn’t matter, to others’.  That is critically important in my role at Diabetes Australia, because a lot of the work that I am involved in have little impact on my own diabetes management. 

And in my role as an activist outside of my day job, it is also important. When sharing my story or opinion, the two things that are important for me to relay (usually right up front) are that my story is but one story, and that due to circumstances well beyond my control, I am fortunate in many ways when it comes to access and affordability of diabetes healthcare and technologies. 

It’s for that reason that I get a little testy when people put down what others are doing with their own management, critical of others’ advocacy passions, or dismissive of someone’s opinion. 

Living in similar circumstances isn’t a guarantee of having the same experiences. Even when I am speaking with PWD whose situation may be similar to my own, I accept that what matters to me may not necessarily matter to them, and how I respond to certain circumstances may be different to their response. And vice versa. But I never ever belittle how they feel, or what they are for. And I never suggest that they are hysterical, or overreacting or being needlessly dramatic for feeling and behaving the way they do. 

It does happen though. 

I’ve seen people with diabetes shot down in our own community by others who have different opinions. Or if are really upset about something. And I’ve seen people scorn advocacy activities, or support and education programs that they think are unnecessary. 

I’ve been on the receiving end of criticism from people who don’t think the language matters movement is important. They say they have never felt stigmatised or judged, or that the words used by others about diabetes don’t negatively impact them, and therefore the whole movement is unnecessary. 

Not everyone has to have the same beliefs about diabetes. But to dismiss something because it’s not important to you is arrogant. And often, it’s because of privilege. Having the confidence to say something when you don’t like what you are seeing or hearing, or not needing a service or a resource does not mean it’s pointless. It just means that you have that already, or don’t feel you need it. 

There is a level of meanness to this as well. And an antagonism. It undermines others’ experiences and feelings. And it is a really crappy way of undercutting the work done by others. And it is, in effect saying, ‘Not important to me so not important at all’.

Last week, a response to an incident that happened during Australian Fashion Week resonated with me and the reaction by the woman at the centre of it all was interesting. Lisa Cox is a model who closed out the show, and as she made her way on the runway, something got caught in the wheel of her wheelchair, and she needed assistance in getting moving again. This was a high-profile show, and it got a lot of coverage. Many people from the disability community commented to say that while there may have been a few disabled models involved in the show, the end product was one of inaccessibility. They spoke about how Lisa’s runway experience mirrors their everyday experiences, with no thought given to people using wheelchairs or other mobility aids. 

Lisa wrote a piece for online women’s news network, Mamamia, about how horrified she was at this response from others in the disability community. She said that she wasn’t fazed, that being in a wheelchair means this sort of thing happens all the time, and she just gets on with it. It’s no big deal to her, and others should also just get on with things. 

Which is great! Her response is no less significant than others with opposing views. Others who have a different reaction have every right to be heard just as loudly. And they should not be called ‘difficult’, ‘angry’ or ‘aggressive’ for communicating their views in their own way. Appearance activist, Carly Findlay has made some excellent points about this issue, also addressing how it’s not okay that people are criticised for how they are addressing their concerns. Tone policing is rife. (You can read more from Carly here.) 

This goes far beyond the disability and other health condition communities. It is relevant when talking about women’s rights, LGBTQIA+ rights, and of course, when addressing racism. 

So, what happens when an incident like the one at Fashion Week, or a discussion about an issue like language pops up? Predictably, devil’s advocates jump on to suggest that ‘It’s a start’, ‘At least it’s something,’ or ‘They tried’. To that, I say, ‘A start is tokenism, and it isn’t enough’, ‘Don’t tell me I must be grateful for the bare minimum’, and ‘Try harder’. The thing is, devil’s advocates are often in a position of privilege, and when they don’t look beyond their own experience, that privilege is on show. Front and centre. 

More musings on privilege

This is what diabetes privilege looks like.