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Thursday, 31 March 2016

Access All Channels

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.

Monday, 28 March 2016

Happy Birthday, Sweet Morty

Happy chocolate sales day! I hope everyone managed to get some cheap chocolate bargains to keep aside for hypos.

As of yesterday, Morty (my diabetes) officially turned 4 years old. An Easter diaversary. Morty is nearly school-aged. I dread the day when Morty learns to count and realises that throughout the year I have only bought it 36 presents, throws a Dudley and starts screaming at me "36! But last year, last year I had 37!". I suppose I will have to do a quick Petunia on the situation and promise to buy it another 2 new CGM sensors to stop a full-blown blood sugar control meltdown from happening.

I suppose I might buy Morty a card. But what do you say to diabetes?

If I loved my diabetes more, I might talk about the day I bought it home from the hospital with me. And how bloody confused I was leaving after an overnight stay with a permanent part of my life that I didn't know how to care for. Would I tell Morty that I never wanted to bring him home with me, and wished I could leave him sitting in a bed of his own at the hospital forever? I probably wouldn't want to tell him he was unplanned.

I won't go off on that tangent though, because I don't love my diabetes enough to reminisce fondly about the first time I held a needle to my stomach.

I could talk about how it Morty has grown as a disease. The progressions I saw after getting past that initial 3 month period when my world became a complete blur of eating, injections, sleeping and crying everywhere.

How I saw changes as Morty grew from that volatile infant state to toddler stage. I sort of knew what I was doing and was managing to look like I had my shit together. I could leave my house with my hair and make-up done; looking composed and not at all like I had just dealt with a tantrum of epic proportions.

Maybe then I will talk about my dreams and hopes for Morty's future. How much I'm hanging out for him to grow up, because I'm not as fond of his childlike behaviour as he thinks I am. I have been told, however, that an unfortunate aspect of raising a condition like Morty, is that they don't grow up. The most I can hope for is that with lots of therapy (and money) his tantrums may become a little easier to control. That as he grows, I will get to know the early warning signs of a melt-down and soothe him before I'm left with a screaming toddler disease in aisle 3 of the supermarket, because he wants lollies NOW.

The sign off would probably read: 'Happy Birthday, sweet Morty.'

Saturday, 26 March 2016

Hypo Tax got me like....

I have been busily documenting my recent trip overseas, so please excuse my absence. I'm about halfway through that, and it's taking me a really long time. So I took a break from here.

This is relevant to my trip overseas, I promise.

The UK recently introduced a Soft Drink Tax, to come in to effect in 2018. Drinks that have more than 8gm of sugar per 100ml will be taxed at a higher amount. I'm just going to put it out there that I struggled in the UK to find adequate hypo treatment. Everything already has reduced sugar over there. I spent time way too much time when I was hypo desperately reading the labels of drinks trying to find something that was of a high enough quick acting sugar percent to bring my BGLs back up to a safe number. When normally in Australia I can drink 1/4 of a bottle of sprite to treat a hypo, in the UK I was having to guzzle half or a full bottle to treat a hypo because of the reduced sugar. Extra calories I didn't need, and it left me feeling really seedy, because I don't normally drink much soft drink.

The other point to to make is - I don't think that a soft drink tax is going to do jack for the UK, when a sample standard diet includes fish, chips, pies, clotted cream, beer, pasties, salt on everything and anything else you can name that will clog your arteries. Jamie Oliver is one of those that pushed heavily for the sugar tax and I did have the misfortune to eat in one of his restaurants. No surprise that the healthiest thing on the menu was a fatty pork burger. You did have the option to change the chips for salad - if you paid extra. But we already knew that Jamie Oliver is very hypocritical when it comes to healthy eating, so no surprise there.

So Australia has recently decided they would like to jump on the cave-man 'sugar bad' trend and is looking at introducing a similar tax. I'm disappointed. I'm sick of the sugar fear mongering that goes on. The more we talk about sugar in these terms, the harder it is for the public to truly understand diabetes and how it actually all works. The message about 'sugar bad' gets through all right - but only enough for everybody ever to question why I'm having sugar if I have diabetes, because that's what they're told it gives you. If I already have diabetes, I'm not sure what they think telling me 'sugar bad' is going to achieve; maybe if I don't drink sugary drinks it will stop me from getting some extra diabetes on top of my diabetes?

The 'sugar bad' fear messages only serve to instill in the senseless public that people with diabetes chose this disease. It encourages hate towards us, as a by-product of the fear they feel when they do a mental calculation of how much soft drink they have consumed and have conculded that they have put themselves at risk of Type 2 Diabetes. It encourages poor diets (such as that god-awful Paleo diet that people crap on about) in wrong-footed attempts to 'undo' all the sugar they have consumed in their life. 

Sugar saves my life, on an almost daily basis. I don't think it's fair to tax that, or disillusion the public about the role that sugar plays in helping me to control my BGLs, and more importantly, stay alive. 

Currently sugary drinks are the best and cheapest means I have to treat a hypo. Drinks are often the best way to treat a hypo because simply swallowing when you're in the brain fog of a hypo is much easier than chewing and then swallowing. 

Whilst the tax may be aimed at the drink companies, they are more than likely to pass this on to consumers, or start to make products with less sugar (and thereby less effective in raising BGLs to safe levels). A 2L Coles lemonade costs little more than a dollar and can be used for about 10 hypos. Similarly, a 6 pack of poppers is only a few dollars, coming in at something like 50c per hypo. Glucose tablets on the other hand, whilst they are great to keep in my handbag, cost a small fortune. If you go by the way of Amazon, you can get the bottles of 50 pretty cheap, but be prepared to offer up your first born to pay for shipping. Even buying the True Plus brand available in Australia is obscenely expensive. A pack of 50 costs $15 and will treat approximately 12 hypos. This is more than $1 per hypo, when a Coles Lemonade is less than $2 for 10 hypos. 

It should be the aim of the diabetes bodies in Australia to protect the interests of those with diabetes first. Which means that if they want to support this sort of sugar-hate (and in turn diabetes-hate) movement, they need to have a strategy for education about how sugar works so that I can stop being harrased by the know-it-all who sees my medic-alert tag as I save my life with a Sprite. Importantly, they need to be ensuring that we will continue to have fairly-priced access to hypo treatments. 

Add to this that we can't nanny everybody. At some point, you have got to realise that people are free to make their own unhealthy choices. Education about food needs to be introduced earlier to children so they can make the correct choices to look after their bodies. I understand that we would like to decrease the rates of type 2 diabetes, but the people who get Type 2 Diabetes from lifestyle aren't just drinking soft drink. There's so many more factors to Type 2 Diabetes than a like for soft-drinks. You need to be looking at increasing exercise rates, reducing portion sizes, educating about healthy food choices. They've also been making those choices for a very long time, and probably won't stop with a price increase.

And honestly? While Macca's, KFC, chips and other fatty, salty and calorie-laden fast foods are around, we don't have a hope on curbing obesity rates by introducing a simple sugary-drink tax. Extend the tax to them and maybe we can start talking about potential nation-wide health benefits.

Until you do that, I spend enough on my healthcare already, don't make me add 'hypos' to the list of reasons I will probably never own a house.