Over the last couple of years I’d been studying narrative and its impact on us as humans. In the case of diabetes, I’ve tried to identity what the pervasive narratives are, where they come from, how they get reproduced, and who and how they are countered.
One narrative I’ve spent much time on in the diabetes context is the one that sounds like, “You can do anything. Diabetes doesn’t have to stop or limit you.” The intention, I surmise, in these types of statements is to inspire. The intention is to encourage diabetics to believe in themselves and to try the things they want to do. This narrative assumes that limits are about attitude.
But what is the impact of that? I ask because the undercurrent of this narrative is that if a diabetic person isn’t able to do something, it is because they didn’t try hard enough or because they had a defeatist mentality. That is the impact. That is the message so many diabetic kids and adults take away from the narrative that diabetes doesn’t present limitations.
What’s worse, this narrative also directly reinforces the public’s idea that diabetes is not a serious disease. They see us saying “diabetes doesn’t stop me from doing anything” and wonder, “then why are you telling me you need extra time on an exam or to keep juice near your desk at work?” When we downplay how much diabetes impacts our lives, we inadvertently encourage outsiders to dismiss our hard work – to see it as easy. We get accommodated less often, and when we do, it takes a bigger fight.
So, the “limitless” narrative is destructive to our community by sustaining stigmatizing perceptions of diabetes as a simple, easy, and non-serious disease.
Saying I can’t do something because I have diabetes doesn’t mean I am letting diabetes dictate what I do. To me, saying I can’t do something is finding peace of mind about the things I cannot control. Saying I can’t do this or that because of diabetes releases the pressure of having to fight my body and push it to do things that are painful or stress-inducing. It also allows me the narrative flexibility to request accommodations when I need them. It allows me the space to accept my body as it is and to let the public know that diabetes is hard to manage.
I think the medical profession, broadly, has the perspective that the only healthy mindset a disabled person can occupy is to desire to be as able-bodied as possible. Only when we are pushing ourselves and our bodies to appear normal, to function normally, to be normal, are we demonstrating a “healthy mentality”. Leaning into disability identity and accepting limitations is seen as disempowered. It’s seen as giving up. To those agree with those words, listen up:
Accepting limitation ≠ giving up.
Accepting limitation ≠ a defeatist or unhealthy mentality.
Accepting limitation ≠ letting diabetes/disability run your life.
I don’t want to be and appear as able-bodied as possible. I want to live in the body that I have. I want to listen to it and allow it to factor into all my decisions so I can be physically and mentally healthy where I’m at now.
A healthy mindset isn’t wanting to be like the ableds. A healthy mindset isn’t about pretending or performing that diabetes doesn’t prevent you from doing anything you want to do.
A healthy mindset is being okay with how, who, and where you are, right now.
Thanks for coming to my TED Talk.