Patient Voices Winner Chelcie Rice: Diversity Needed in Community and Innovation

Talking with D-Advocate Chelcie Rice

DM) First off, tell us how diabetes came into your life…?

CR) I was diagnosed around 1988 when I was 25 years old. Developed symptoms and was hospitalized for maybe four days. Not a great deal of family history of diabetes except for my grandmother who I believe was type 2.

And you do comedy for a living?

Yes, I started performing stand-up in the early 2000s. I’ve performed at comedy festivals and clubs around the country. I’ve appeared on Comcast and multiple online programs. I was also a spokesperson for a diabetes supply company back in 2013.

At one point I was helping a friend with fundraising shows and thought I could do the same for diabetes. I eventually started producing shows at local venues for the ADA and the ADA walk. When I’m not doing shows, I bring awareness through comedy online.

How did you first get involved in the Diabetes Online Community (DOC)?

I was introduced to the DOC by (DSMA founder) Cherise Shockley by way of Facebook and the rest is history. I’d like to think I got in on (the DOC) in its infancy and now its reach is worldwide.

What observations do you have about how D-tech has changed over the years?

So many more choices in pumps to the size of meters. Many of the devices we used years ago have been replaced with apps on our phones or tablets that are free.

Which D-tools do you personally use?

My tech is pretty simple. I got my first pump around 2005. I’ve always used a tube pump. I got my first CGM two years ago and I don’t know how I lived without it. I never was much for too many apps because it just gets to be a bit overwhelming.

You’ve been vocal about the need for more diversity and inclusion in the Diabetes Community on many fronts… can you address that?

It’s usually no surprise that certain groups feel alienated if they don’t see themselves represented in clubs or organizations. For example, I’ve been listening to an audiobook where the author says that the book is targeted towards men and women but throughout the book she’s always referring to “she or her.” So while she says her book is for men and women, she even went so far as to say that a larger percentage of her target audience is female. So nice try, but I’m still not feeling like the book is for me.

The same is true for social media. I can think of two large orgs on Instagram whose feeds I scrolled through recently. I scrolled at least 8 times before I saw a person of color. It’s common knowledge that diabetes affects people of color more but these groups apparently have no interest in representing them. Of course there are a slew of excuses, and the claim, ‘We don’t exclude anyone.’ Well you don’t include everyone either.

The say, ‘We show the people who have sent their pictures to us.‘ Really? So you just sit back and close your eyes? Not everyone is on social media yet, so maybe as opposed to organizing another walk or bike ride, you can pack a van and go to a Native American reservation and take pics of them while spreading information about the importance of diabetes care.

To me, it’s just these groups being lazy and in a way disingenuous.

Where do you think that comes into the conversation on “innovation” for diabetes?

Simple. If people of color aren’t represented then those people aren’t informed. What sense does it make to be an advocate if you’re not attempting to help everyone? There’s a level of complacency I see when it comes to inclusion in this country. Just because you think it’s easy to obtain internet access or a cell phone doesn’t mean it’s easy for everyone.

Redlining prevented blacks and Hispanics from having rights to a simple grocery store with fresh food being built in their neighborhood. That’s a fact! So it stands to reason that if a child living in a poor neighborhood was raised in the same poor neighborhood as their great-grandparents, where nothing much has improved, they wouldn’t have the proper information or tools they need to manage their diabetes.

With the American Diabetes Association now having a black woman at the helm for the first time ever, do you think that will change things on embracing diversity in the diabetes world?

That’s up to her, in my opinion. She needs to push her org to be more visible. Just because she’s black doesn’t mean black people will automatically gravitate towards her. The ADA needs to be more visible in black media, because half the time we never see TV ads for the ADA. They just need to do better.

What do you see as the biggest overall challenge in diabetes right now?

Making insulin and diabetes supplies more affordable and accessible.

What can the diabetes industry do better?

Better marketing and information. Maybe tone down the pharmaceutical ads and spread better information about how to live a fuller life with diabetes. Address the effects of depression while living with diabetes. Make November (National Diabetes Month) mean something. Make a genuine effort to address people of color so they understand how seriously diabetes affects their communities.

What steps do you think advocates should take?

More effort needs to go into getting the information to the patients, especially in lower-income communities. Advocates need to reach more people living with diabetes and encourage them use whatever tools they can to keep these corporations in check. If it comes down to shaming them on social media, then do it. It’s ‘time out’ for this foolishness when the end goal is innovation that just leads to bigger profits.

You mentioned the many people who are not plugged in to social media, who may miss out on a lot. More thoughts there…?

Not everyone is using social media, let alone using it to find help with their chronic illness. There’s always been a divide in what people see the Internet and social media as good for. Many people of a certain age don’t realize the wealth of support they can find on Facebook, for example. Because they may see it as something for young people who like to waste time.

That’s a shame, but we’re glad you’re involved! What are you most looking forward to at the Innovation Summit?

Addressing my concerns, meeting more advocates I don’t know, reconnecting with advocates I do know and coming home with a wealth of information to share.

Thanks, Chelcie! We so appreciate you being a part of the DOC and raising awareness on important issues. Can’t wait to see you connecting and learning in person this Fall.