Is There Room For More Voices in the DOC?

Wednesday’s #dsma Twitter chat discussed the issue of inclusiveness in the Diabetes Online Community, inspired by my hour of the World Diabetes Day chat last month.

As I caught up on Wednesday’s #dsma chat, I was surprised at how different the response was compared to the hour of identical questions I hosted on World Diabetes Day. While World Diabetes Day highlighted alienation by type, access, technology and opinion, Wednesday’s chat went into feelings of alienation by things such as race, religion and sexuality. I felt that in Wednesday’s chat, I saw more people actually stand up and say that they did not feel included in the DOC. It definitely surprised me.

When I think about the importance of diversity in the DOC, I think the answer is simple. If we were all the same, the DOC would be boring and we wouldn’t hang around so much! If we all agreed on everything, we wouldn’t feel stimulated or challenged to think beyond our own needs and concerns. For me personally, connecting with organisations like T1International has really opened my eyes to more pressing issues of access in less fortunate areas of the world.

When asked if the DOC was inclusive of different voices and opinions, there were two very good points that resonated with me.

Firstly, the DOC is heavily weighted by those with privilege. Those who have access to the very best tools available to manage their diabetes. Private care, Continuous Glucose Monitors, Insulin Pumps…the list goes on. Count me guilty. The latest tech and gadgets receive a great deal of attention and enthusiasm online, and it’s easy to see why those without would certainly feel left out. I always lament the sad fact that the mostly privileged DOC is not representative of the diabetes population. There’s all these exciting developments and advancements in diabetes care, and yet how many people will be able to get their hands on it? I suspect those facing basic access issues would hardly have the ability to Tweet or blog about it, but I would personally love to see more of these stories brought to light. I do applaud T1International for giving these groups a voice.

The second point raised was the heavy skew of type 1 voices in the DOC. Many questioned whether type 2s felt alienated because of stigma…you know, diet and exercise shaming. Some suggested raising up the type 2 voices that are heard, and fighting or not contributing to stigma. I no longer feel the urge to get angry when I see a politically incorrect statement about type 1 diabetes, because I realise I probably end up shaming or stigmatising someone with type 2. Nobody asks to get diabetes, let alone be told why they got it. We’re all in this together, and we need to raise each other up.

Cherise, operator of the #dsma community, stated that her goal has always been to support everyone touched by diabetes. Judging by the strength of the #dsma community, she’s clearly doing something right. I would hope that I am inclusive. But, naturally, we all have different goals, needs and areas of interest. So where does that put someone who is sitting in a minority area of interest?

I think of my friend Laura (@KidFears99) on Twitter. A few months ago when everyone was talking about the right to their choice of insulin pump (aka #DiabetesAccessMatters), she felt that nobody else cared about the rising cost of insulin in the US. She was passionate about her cause. It mattered to her. So she kept talking about it. She went to the media with her story. Today, she has drummed up a great deal more interest in this issue that there was several months ago.

So if you do feel in the minority, I encourage you to speak up. I guarantee that there is at least one more person out there who will be interested in what you have to say. I don’t really think it matters whether you have the support of 1 person, or 1000. If its important to you, then it’s worth sharing. I will always be willing to listen.

The DOC constantly challenges my thinking, and that tells me that we must be doing something right. We just need to make sure that we keep making room for more. There will always be room for more voices.

3 Comments

  1. Rick Phillips

    Frank, there is no doubt to me that the DOC could be more inclusive. But I also think that we are open. By open I mean it does not take much of an effort to join. I am proof of that. I had no participation until 2014. While I am not well known I feel very comfortable. We need more voices, and we also need discussions like this to remind us of that fact.

    This item has been referred to the TUDiabetes Blog page for the week of December 12, 2016.

  2. I love this! Today I received my T1advocacy kit and plan to get cracking. Right now in South Africa living right next to a community I have the chance to go and teach yoga to people with Type 1 and 2 diabetes who don’t have the access to insulin and info we do in Australia. Its a project I am really excited about. In the mean time one of the themes that comes up in my world is meeting people who are allergic or having trouble with insulin injections to manage their diabetes. How can we support people who are dealing with higher sugars and when taking Insulin is a scary prospect because the body rejects it…This is where complimentary medicine and alternatives can help and things like yoga and meditation can help associated stress…Frank your thoughtfulness and care is such an inspiration.. can’t wait to see what Type 1 writes brings to 2017!

  3. I have never really understood the conflict between people of different types of diabetes. To me this is all irrelevant. We are all in the same boat. And I agree, that a lot of the focus in the DOC tends to be centered around new technologies. Which,, in many ways, is a good thing because these technologies can help so many of us in being successful with our diabetes. But as you say,, there are many people who cannot access these technologies for various reasons. And there are a lot of folks, even in the USA, who continually struggle to even obtain their basic supplies. Frankly, I would be ecstatic if the DOC was able to become a cohesive force. Not just in advocacy, but also in creating greater understanding and awareness at a grassroots level. Like I said, the technology are indeed a wonderful thing but there is a significant disparity in people’s ability to take part in these advancements. I still think that the most important thing is laying a solid foundation of all the basics for every person diagnosed with any type of diabetes. As far as I am concerned anyone who is touched in any way by diabetes is automatically included.

Leave a Reply