“The overall bottom line is that anybody who has any connection or interest in Type 1 Diabetes should feel like they can come today to JDRF, be welcomed, and feel like there’s a space for them. Period.” – Carmen Ashley, JDRF Georgia Community Board Member and Volunteer Chair of JDRF’s National Volunteer Engagement Diversity and Inclusion Working Group

Let’s be honest. How many of the thousands who read JDRF’s press release early in the summer of 2020 about a Diversity and Inclusion Task Force would Google the names of the people on the task force to see how representative they were, then follow up to see what they were doing, get impatient with their progress, and write a passionate email to the CEO?

Meet Carmen Ashley, who did just that, and decided that she had “better put up or shut up”. She now heads the National Volunteer Engagement Diversity and Inclusion Working Group, an externally focused sub-group of the D&I Task Force that is responsible for looking out in the wider T1D community to further the goals of the D&I Task Force. She has been involved with JDRF ever since her 9-year-old grandson was diagnosed almost 7 years ago. Two years ago she became a Georgia board member and, at the same time, became the Georgia Advocacy Committee Co-Chair until she took up her current role at the national level.

Sitting down for a conversation with the GA & SC Chapter, she explained that her experience with JDRF, for the most part, has been “incredibly wonderful.” Of her interaction with JDRF she said, “I am very much a public service oriented person. I work for CDC, and almost all of my other career positions have been for nonprofits. I love the staff that JDRF has had and continues to have. So overall it has been awesome. Where it has been a bit of a pullback for me is when I go into events that we have – whether it’s Gala or Walk or the TypeOneNation Summit – and I see very few people who reflect me, particularly minorities or people of color. Or where I see somebody (belonging to a minority group) at an event and then I don’t see that person anymore, like it’s a one-and-done thing for them. So I wonder, why is it that I can engage with people at a Walk but then I don’t see them engaging with JDRF at any other event? So that, in the larger context, has been my area of concern.”

She continued, “I love our slogan ‘T1d looks like me’ but then a lot of people are looking at it and saying, ‘But it doesn’t really.’ At least it’s not what I am seeing at all these events either. I think JDRF is doing a much better job of trying to really reflect the communities that it serves. But, right now, based on the experiences that people have shared with me, there still are many people out there who don’t feel like JDRF represents them, whether it’s their race, their ethnicity, their orientation, or whatever.”

See below for more of our conversation with Carmen, including why this work is so important to the T1D community and links to resources to learn more.

Can you tell us a little about JDRF’s D&I initiative?
Carmen: It was spring of 2020 when JDRF’s D&I initiative came to fruition. Even before the social issues of the last year, JDRF was trying to focus on access to care among minorities because of a CDC report that showed that the fastest growing group of young people being diagnosed with Type 1 Diabetes were people of color. But some of the reactions to that initiative on social media, and JDRF’s response at the time, made it clear that there was an immediate need for a D&I initiative at JDRF. I give Aaron Kowalski absolute credit for acknowledging that there was this need, and for addressing it.

What are the goals of this initiative?
Carmen: The overall bottom line is that anybody who has any connection or interest in Type 1 Diabetes should feel like they can come today to JDRF and be welcomed and feel like there’s a space for them. Period. There are actually two parts to the JDRF D&I initiative happening right now. There is the Diversity and Inclusion Task Force. If you go on JDRF web page and look up diversity and inclusion, what you see will refer to this task force. The D&I Task Force is more internally focused to increase diversity among the staff and Volunteers, expand outreach to serve diverse races, ethnicities, socio-economic statuses, and recognize diverse holidays, to name a few of its goals.

I’m involved with the second part – the Volunteer Engagement Diversity and Inclusion Working Group, which is a subgroup of the task force. The working group is more externally focused – primarily on the issue that I have been struggling with which I described earlier.

How did you get involved with the D&I Task Force?
Carmen: I read a JDRF press release announcing the D&I Initiative and I was like, okay that’s great they were addressing this. But then I didn’t hear anything else about it for some time. Things were happening in the national climate but I didn’t really see anything on JDRF addressing it. So I got frustrated and in August 2020, I sent this what I call a “passionate” letter to Aaron Kowalski and the two task force chairs. Two days later I got a phone call from them. One thing led to another and they invited me to join that task force. So I’m the only volunteer member of that task force that’s non-staff.

What I hadn’t realized when I wrote the letter was that the task force was really focused internally in the early stages, and that the second (external) part was coming later. At my first task force meeting, I was moved to tears by the passion that all the members from different parts of the country had for the D&I mission. They were all so earnest and sincere! But I still felt that the initiative needed to be broader than just internal so that people outside would really understand that this organization (JDRF) is trying. That is when I was asked whether I would chair a subgroup that focuses on volunteers. Hell yeah! I’m not going to complain for the sake of complaining. If I’m going to put forth an issue, then I’m going to help you solve it.

What do you hope to achieve?
Carmen: Based on what people shared with me, there are some people not feeling welcomed by the JDRF community. The first step would be to understand why they feel that way, and the reasons for the lack of diversity in the community’s engagement with JDRF. The second would be to address those reasons. I am the volunteer chair of this working group that consists of volunteers from some other chapters and National staff as the kind of coordinators. So there’s a mix of volunteer voices with their own stories to share, ensuring that communities across the country are heard. A deeply Hispanic and/or Latinx population in South Texas is going to have stories that probably look very different from the population in the New England area. What we’re trying to do is make sure that ultimately nobody has a reason not to know JDRF, not to feel embraced by JDRF, or feel like they don’t want to be a part of the larger community of JDRF.

Right now we are just putting out the word, and the response has been incredible. It’s like so many others have been looking for people like themselves at JDRF events, and observed that there is a lack of diversity, but there wasn’t even enough of us to talk about it. As a community, we have got to be more aware of what’s around us and how we can better embrace everybody. This is not exclusively for people of color or people of any particular background you know. We need to get way past all that, and everybody should feel like a part of this larger JDRF family regardless.

What challenges do you think minorities face with T1D and JDRF?
Carmen: I think there are so many challenges – general overarching challenges – that minorities face with any chronic disease. There tend to be health disparities that minorities have compared to non-minorities with any disease particularly with access to care. Specific to T1D, it could be access to getting insulin or to technology-based treatment and care – whether it’s the pump or CGM – access to financial resources, access to the appropriate doctors like actual endocrinologists and not the primary care physician, or Health Department doctors.

Historically minorities tend to have less trust of the medical profession. Whether it going back to the US Public Health Service syphilis study at Tuskegee, or the Cincinnati radiation experiments in the 1960s. . Families of the men who were in the Tuskegee study are still physically and mentally feeling the ripple effect on them, their wives, their children, and their grandchildren. So you know that’s kind of lasting. It’s still very real for a lot of people especially in the South. My grandfather, who died about 5 years ago, refused to go to a physician most of his life until my mom and her siblings dragged him to the hospital because he grew up in the Deep South in the 40s and 50s in a time where you don’t trust doctors for legit reasons. That disdain for doctors carries on in his children, which carries on to some of my cousins even nowadays.

There’s a lot of oral history that’s passed down in families, but many individuals also have their own negative experiences with the medical profession. There is plenty of research on the way some in the medical profession treat minorities versus other non-minorities. So I understand where they are coming from.

Now combine that with the level of health literacy across-the-board. Take, for example, the scarcity of participation of people of color in any kind of clinical trials. I work in public health and it amazes me how some people, even my very close family members, feel about certain things. The things I heard from them when I volunteered for Pfizer’s COVID-19 vaccine trials! I had to explain that it wasn’t the government trying to experiment on me. We have failed as a scientific and medical community to educate more about what clinical trials are and what they are not. I say this across the board, not just for people of color.

I think part of that education includes addressing the diversity issue. That’s going to stay a while unfortunately. The question is how to break that lack of trust many people have with the government and the healthcare establishment. I don’t know how to do that, and I don’t think the past four years helped at all from that perspective.

Those kinds of challenges and those kinds of experiences contribute to the health disparities.

How much of the disparity is because of economics and how much is because of race or ethnicity?
Carmen: It’s really important to understand the why, isn’t it? Social determinants of health have always been there and contributed to the disparities, but a new train of thought is around the political determinants of health. Is it because minorities have a higher propensity to certain conditions because of genetics, or is it more because of things like redlining districts that once upon a time had minorities staying in a certain area of town that was least likely to have access to the best hospitals, or is it laws that prevent certain levels of workers to only have a certain level of insurance that prevents them from having access to this level of doctor or that? It’s a combination of things. So I would say they both contribute, but the jury honestly is still out on to what degree.

How was 2020 for the D&I Working Group?
Carmen: It was really challenging. This group did not start until November, right before all holidays. We were all super excited about it, but also we were a little bit overshadowed by national political events and COVID-19 continues to be the forefront. But the dedication and motivation of both the task force and the working group is solid, and remains a priority for Aaron and the leadership at JDRF

What are the next steps for the D&I Working group?
Carmen: The Working Group is in the process of implementing a thorough research and discovery process that includes three major activities:
1) Surveys of current volunteers.
2) A listening tour for those who have felt at some point disenfranchised with JDRF. We just want to listen to know what, if any, are the barriers that are preventing people, particularly people of color and people from different backgrounds, from wanting to engage with JDRF.
3) External research. These activities combined will inform the development of resources and training for current volunteers as well as guidance on prioritizing diversity in volunteer recruitment.

How can someone contact you to discuss/share something related to D&I in JDRF?
Carmen: They can email me at carmen_ashley@hotmail.com. Although the D&I Working Group has only been in existence for a few months, I’ve already connected with people who’ve heard about it “through the grapevine” and who have shared their perspectives and recommendations on continued ways to improve diversity and inclusion within the JDRF community.

Links to Resources

https://www.jdrf.org/about/diversity-inclusion/
https://www.jdrf.org/blog/2020/06/29/a-message-to-our-community/

https://www.jdrf.org/about/diversity-inclusion/unlocking-health-equity-and-type-1-diabetes/
https://www.jdrf.org/blog/2020/02/18/more-people-being-diagnosed-type-1-diabetes/

https://www.healthypeople.gov/2020/about/foundation-health-measures/Disparities
https://www.cdc.gov/tuskegee/index.html
https://en.wikipedia.org/wiki/Cincinnati_Radiation_Experiments_(1960-1971)
https://www.cdc.gov/socialdeterminants/about.html
https://www.npr.org/2017/05/03/526655831/a-forgotten-history-of-how-the-u-s-government-segregated-america