After spending a great week at the Children With Diabetes, Friends For Life Conference in Orlando, I have been reflecting on what I want people to know about diabetes and what I want other people with Diabetes to know about how Diabetes is for other people who couldn’t make it to CWD.
As people with diabetes, it’s very easy for us to make our condition all about ourselves, to speak a narrative of sickness and suffering. In reality, I don’t suffer from diabetes. I just get pissed off by it sometimes. People do suffer from diabetes, people die from diabetes. I understand that some people in the USA, have died from hypos and i want that to stop. I can’t imagine how scary it is for a parent of a child with diabetes, likely those people suffer far more than I do. I’m still 20-something and “invincible”. But I find it somehow weirdly comforting to remember that as someone living with diabetes you’re still in way more danger driving a car than you are taking a bolus. We are very fortunate to have access to community (like that I found at CWD), education (again, plenty of that in Orlando), and supplies.
I also find that diabetes has give me a goal in life, which is to help other PWD who are less fortunate. None of us worked our way into being born rich. I’m always happy when young people I work with choose to test more and take a more active role in their blood glucose management, but I am as happy when they acknowledge the great good fortune they have to be able to make that choice. In general, I find that acknowledging the latter helps with the former. We realize that we didn’t earn our right to be privileged, but that it would be asinine to waste such great good fortune.
Diabetes is a condition which, with access to insulin and testing supplies, is of little impediment to my life. I’m very lucky to be able to travel, exercise and make a fool of myself every day despite the fact that my pancreas doesn’t do everything it should. As a young(er) person I spent a lot of time travelling, if I had been born in another part of the world, my life would have been very different. Life expectancy with type one diabetes is 8 – 12 months in Mali. That’s less than most cancers and even HIV in many places. As we know, Diabetes is a condition which is entirely treatable with access to insulin and supplies, but not everyone gets the medication they need.
There is only one barrier between my reality and a very different one where i die at 18 years old. That barrier is access to medication, I have it and many don’t but without it I’d be long gone. That makes me sad, but it also makes me feel very lucky.
I work with two organisations, one at home and one abroad:
www.Nativeexerciseempowermentproject.org works to empower Native American people living with diabetes to live healthier and happier lives through the use of exercise, education and peer mentorship. Please check it out.
www.100campaign.org works to ensure that everyone who needs insulin has some within 100 years of Banting refining insulin in a lab for the first time in 1922.
I say it a lot, but nobody should be poor because they’re sick or sick because they’re poor. Please take a second longer to think about this, to exercise your empathy and to think about life on the other side of the access divide. Cures are great, and important, but in the mean time let’s work with what we have first and make sure we share it with everyone who needs it.
Marx said that “Men make their own history, but they do not make it as they please; they do not make it under self-selected circumstances, but under circumstances existing already, given and transmitted from the past.”
I agree, I think the amongst the most empowering things we can do is be big and brave enough to step back from the narrative of agency and acknowledge the role of fortune. We don’t have to allot everything to luck, there’s a lot we can change still. But the fact that we get the chance to change our lives and those of others is, in itself, a great stroke of luck.
James Stout is a type 1 PWD from the UK, a graduate of Oxford University with a PhD from the University of California, San Diego. He’s made his living as a Professional Cycler and Cycling Journalist, is the founder of the NativeExerciseEmpowermentProject.Org and the Director of Programs at the Pascua Yaqui Riders for El Tour Against Diabetes.