Before you make the sweeping assumption that I am late to the party (again) because I am FINALLY getting around to writing about the ALS icebucket challenge…when it’s already become a pop culture meme and millions of words and thousands of blogs have been written, shared, tweeted and retweeted–both to laud and decry it, you’re probably right to an extent–but there are some really important points regarding diabetes advocacy that I am going to make despite a thoroughly tired starting point. What I am going to discuss here is important but it may also make you uncomfortable–and I am totally ok with that.
What I learned from reading everyone (and their third cousins sisters boyfriend) opine about the merits of the ice bucket challenge was this: half of all people care about advocating for causes and the other half care so much that they hate on whatever form of advocacy is popular as a matter of principal because they want to do something that REALLY helps the less fortunate. The takeaway is that generally, people do care, even if that care manifests itself as silly social media games or silly social media criticism and rants.
In the diabetes world, I have seen numerous commentators extolling the need for a parallel ice bucket challenge to raise money for diabetes research. This made me wonder why the idea of “making a difference” is almost always universally equated with fundraising for research to the exclusion of all other needs in the global diabetes community. I want to challenge you as members of this community to look deeper and see the greater depth of need the world over, uncomfortable as it is to do so.
The diabetes community isn’t just YOU and ME here in the developed world. At the risk of being a judgmental (fill in the blank with your choice of epithet) I am going to assume that if you are reading this manifesto, it’s on a computer or mobile device (if it is on a mobile device then please accept my apologies for the length!) and that you, like I do, enjoy a modern lifestyle with access to the “basics” of diabetes care. To whit: I recently “downgraded” to syringes and vials. I announced this change on the LivingVertical facebook page and twitter and people were shocked and asked why I would voluntarily relinquish years of advancement for no apparent reason. The simple answer is because I like needles and vials and I don’t feel like a pump is the best delivery system for me. Even as a transient climber/artist with no conventional job at the moment, I have options in my diabetes care.
Being empowered and making true progress requires at minimum the basic tools to do so.
I take for granted the fact that I can get up every morning and take my insulin and go on with my day. I often try not to think of what my options would be with diabetes if I were in Africa, for example, or parts of central and southeast Asia. It’s really uncomfortable to think that over there I’d be thanking my lucky stars to have even the simplest forms of insulin therapy–and that many people don’t have that luxury and die as a result. The leading cause of death for children with type 1 diabetes globally is a lack of insulin.
I try not to think about that over my morning coffee. It makes me feel really guilty when I do. Guilty for what I take for granted and guilty for not doing more to help.
So what’s the point? Am I just trying to make you feel bad? No–I think we all have these feelings from time to time, and we all feel bad enough already. I’m just asking you not to look away without saying something.
The leading cause of death for children with type 1 diabetes globally is a lack of access to insulin. This is not ok.
The diabetes community isn’t just people you know on facebook. It’s not just the people who comment on your blog or retweet your blood glucose updates. The diabetes community includes those people in the developing world who can’t get on social media or write a blog about their situation while kicking it at their neighborhood Starbucks. I see hundreds of people posting on behalf of funding research every week on social media–and I’m not trying to rain on that parade (or walk-a-thon)–I am just asking you to join me in painting in the corners of the big picture to include the silent, unpopular problem in the diabetes community. Here’s where we can start:
Have you heard of the 100 Campaign? I challenge YOU to take a look and if you support the idea of greater access to insulin around the world then you can get involved there. I will be doing that and I highly recommend reading the statistics and breakdown of the issues that they have researched there. You don’t have to get wet or give money. Just give a little time and take a few steps off the beaten path to tell the world that no person with diabetes should die because they can’t afford to buy insulin.
I don’t have all the answers and I know the folks at the 100 Campaign don’t either, but public opinion matters a lot and it’s time to redefine what it means to advocate for our community. Join us.
the opinions in this blog absolutely reflect the views and values of LivingVertical and we stand resolutely behind them, however unsexy they may be.