The Current Representation of Diabetes Causes More Harm Than Good

"Does diabetes create complications? Yes. But as you browse the social media accounts of everyday people living with the condition, you see people living first, with diabetes second."

We've just launched an online photo exhibition exploring life with diabetes. You might wonder why a tech company would do that. I'll explain if you stick with me.??

The diabetes maze

When I joined Quin, I entered a world I understood nothing about. I thought diabetes was something old uncles got because of their diet. They might be amputated because of it. Didn’t know the difference between types. And before I started working for Quin I didn’t care that much. How could I possibly help build, promote and launch a product I couldn't use? To stay faithful to my way of practising my discipline, I needed to become an "expert". My experience had shown me that with the right methodologies, anyone can be part of the solution to any problem, so I embarked on a research journey with a huge dose of humility. On this journey, I had many questions. This photo shows what I drew on our whiteboard on the 19th of September 2018.

Making it personal

A few weeks in, as I despaired of ever being able to emotionally connect with people with diabetes and promote Quin’s mission, our former CTO – who had lived with the condition for over 2 decades – told me that living with diabetes is the same as being part of a historically-discriminated-against group. I resented that. Being a woman of African descent living in a Western country, I knew what she tried to imply. And I can’t deny that it did help me feel slightly better connected to the woes of people living with diabetes. People with diabetes are subject to a lot of judgmental behaviours and verbal abuse. A lot of neglect and misunderstanding by the very people who should care for them. Headlines portray them in negative lights and make them come across as irresponsible individuals, burdening society. The language used to refer to them is mostly offensive and the gaslighting they experience can be somewhat likened to experiences people who look like me have had.?

However, I will never agree with that statement in the way it was presented to me. Because people with diabetes don’t get shot on the street, beaten or choked to death, enslaved because they live with diabetes. They’re not left to drown while others laugh, systematically get discriminated against for basic life necessities such as access to financial and health services, accommodation or employment because of something they can’t help. But that’s another topic.?

Being an ally

I started familiarising myself with the domain and decided to become an ally. The sort of ally I would want to have in my struggles. I armed myself with the best weapon we could have at Quin to really innovate, disrupt and add value: people with diabetes. Loads of them. Children, young people and older people. Christians, atheists, Jewish and Muslims. British, Norwegian, German, Spanish, Swiss and American. Binary and non-binary, queer, cisgender. People from different socio-economic backgrounds, from different professions, people recently diagnosed and people living with diabetes for half a century. People with various disabilities and conditions. People with different access to technology, different diabetes stories and navigating different healthcare systems.?

"And one thing I realised. Nothing out there is representative of how diverse, rich and amazingly resourceful people with diabetes are."?

TRIGGER WARNING: Graphic image below. You've been warned!

As I moved further into my role, I had to start telling stories. Everyone underestimates how much time marketers spend trying to find imagery for storytelling that represents their target audience. I spent hours scrolling through picture libraries, video galleries, Pinterest boards, and memes. Most of the content was terrible. Inaccurate, clinical, food-related or outright offensive. At some point, I dreaded having to look through these images. Because there was the odd chance you’d come across a wounded foot without a graphic image warning. I’m squeamish, yes, but I doubt anyone would welcome seeing open wounds on the regular while trying to find pictures to do their jobs.?

I went from being shocked, to scared, to frustrated. I really no longer wanted to browse these galleries and heavily relied on 2 series of a few photos two photographers created that showed a few more realistic depictions of life with diabetes. I just wished there was a gallery of photos that looked like the very real lives of people found on Instagram, no graphic foot in sight. Does diabetes create complications? Yes. There’s no need to shy away from that. But as you browse the social media accounts of everyday people living with the condition, you see people living first, with diabetes second. This needed to be amplified.

Be the change. Or die trying...

I wanted that for Quin. And I thought maybe others wanted that too. I spoke to my team about it and as I showed them 2-3 pictures I had come across to illustrate my point. They were as shocked as I have been all along. And 2 of them live with type 1 diabetes. They backed me up and decided we should go for it, so we created a manifesto. We made a pledge to contribute positive imagery to the depiction of people with diabetes. When we shared our pledge with the diabetes community, the response was overwhelming.

Others wanted better representation too. Some didn’t even realise how bad the representation was.

As lockdown was easing late in the year, we decided we’d start making a contribution in the new year.?

Why this online exhibit, and why now?

We had big plans. Then another lockdown happened and we really felt defeated. People who pledged to help when we shared our manifesto kept emailing us asking for updates. We were well into the new year now and felt a sense of duty. We did promise, we couldn’t disappoint.?So we switched gears and decided to rely on the diabetes community.

We did a massive call out for people to share photos they’d take themselves. We received hundreds of them from all over the world and had to make a decision on what we’d do with them. They weren‘t all fantastic but we decided to find a way to make them work which is why we ended up with the idea of an online gallery. We didn’t want them to be boringly displayed in a slider on a web page and wanted to make it an experience. We wanted to tell a story.?So why now? Because if not now, when?

Our hope

What we have isn't representative enough. We don’t think what we have is inclusive enough. We don’t think what we have is diverse enough. But we think what we have is a good start. It’s for people with diabetes and we built it for them. They can make it what they want. All they have to do is participate. We want this online exploration to be a never-ending source of inspiration and representation.

We want people to send us their pictures, on a daily basis. We want them to share intimate moments other people have stripped them off of by dehumanising them. We want this gallery to be a living and breathing daily diabetes experience. It can be so much more, and we’re just getting started.

What about Quin?

This is something we’re very proud of at Quin and underpins every single thing we do as a company. The technology we’re building addresses the mundane other technologists in this space often ignore and healthcare systems often exclude from clinical settings. We have listed sex as an activity in the app because it is an activity most people engage in regularly. We hyper-personalised because no two people with diabetes are the same, and they need support that is as unique as they are. And to build technology that way, you need to REALLY know who you’re building it for. And this is a never-ending process.?

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So if you wonder why a tech company is bringing you a photo exhibition, this is why. This is so you understand what breathes life into every feature in our app.?

We hope we've done a good job of representing what diabetes looks like. I truly hope you enjoy this piece of work, and if you don't, help us make it better by giving us feedback in the comments.?