5 Takeaways from Diabetics on the Margin
Editor’s Note: The Diabetics on the Margin event was sponsored by Companion Medical, Dexcom, Insulet, Medtronic, Myabetic, mySugr, Roche Diabetes Care and Tandem Diabetes Care.
One of the great things about the Diabetics on the Margin event presented by Beyond Type 1 in partnership with Ariel Lawrence is that it reached everyone a little differently. Whether you attended in-person or watched the live stream, or even if you just read the highlights, the lingering thoughts or feelings vary depending on your perspective.
After chatting with attendees when the panel wrapped, we collected some of the biggest takeaways from the event for you to check out here!
#1 There should be a sustained, continuous effort to have similar events moving forward.
Because what’s the use in starting a conversation and then walking away from it? Representation for people of color in the type 1 diabetes community was a major topic discussed by the panel, which was moderated by Grace Bonney. Panelist Vivian Nabeta, founder of the Sonia Nabeta Foundation, a non-profit aiming to alleviate the hefty cost of type 1 diabetes (T1D) treatment and provide health care for low-income children in Africa, said that representation needs to transcend socioeconomic status and geographic location.
“I’m queer, disabled and brown, so my life experience is different as a diabetic. Quite honestly, I’m so tired of seeing skinny white women as the representation of diabetes,” said Tonya Hegamin, a writer and professor at City University of New York, who attended the event with her diabetic alert dog, Bobo.
“I think it’s so important that we’re having these kinds of open discussions that people from all different cultures and identities can meet and mix and validate one another. This honestly is the first event that I’ve seen that is specifically speaking to people on the margins. There’s so much power here.”
Ariel built upon Vivian’s and Tonya’s thoughts when she said that everyone in attendance on Saturday is part of a privileged group that is able to be engaged with the issues at hand, and we have a responsibility to make sure everyone’s voices are heard.
The bottom line: Everyone needs to be invited to the table (and not spoken down to or patronized), and in order for meaningful change to happen, there needs to be a table in the first place!
#2 Type 1 as a team effort: what roles do we play?
The topic of healthcare and diabetes management came up, and it’s something that everyone feels passionate about. Dr. Maria Peña, a member of the panel who is an assistant professor and director of Endocrine Services at Mount Sinai Hospital specializing in endocrinology, diabetes and metabolism, and obesity medicine, offered the perspective of the diabetes care team. She said that it’s our responsibility as people with type 1 to show up to our appointments and answer follow-up phone calls—and actively participate in how our diabetes is managed.
Other panelists and audience members spoke from the perspective of people with diabetes (PWDs) and caregivers, often mentioning the feelings of guilt and blame that coincide with doctor’s appointments. Story sharing plays an important part in the process of staying on top of our care because we can learn from each other and find out different ways of approaching our self-management and collaboration with our diabetes team. Talking with each other is also a way to address barriers. The very idea of healthcare being a collaboration was explored because depending on a person’s background, they might approach their appointment with a deferential attitude toward their endocrinologist. Looking at diabetes as something that might need to be self-managed might conflict with this, so it’s important that endocrinologists are educating PWDs so that they are able to take charge of diabetes themselves.
Other barriers that were discussed included: What can we do about insurance obstacles? How do we leverage our rights? Communication with doctors are critical, Dr. Peña said, and it’s important to call our doctors when there is a problem and make our voices heard (more resources about access are available here!).
#3 We need to talk about mental health.
That guilt stemming from stressful endo appointments applies to parents too, and panelist Courtney Taylor brought up experiences around such a blaming culture, saying providers need to be aware of the tone they use when speaking to patients and their families. Courtney worked to establish Chase Away Diabetes after her young son, Chase, was diagnosed with type 1. She shared an important message: whether you are a single parent caring for a child with type 1, or a young adult trying to keep diabetes at the top of your priority list, or anyone else affected by type 1, diabetes-related burnout is real.
Different ways of coping were explored during the panel discussion, and guests had lots of questions for Tonya Hegamin and Bobo throughout the event. Tonya, who trained Bobo herself, said that in addition to alerting when her blood sugar is low or high, a diabetic alert dog also offers an added layer of support.
“I think that for diabetics, the accountability of having another being be a part of your diabetic experience is really amazing, and also because they have that emotional support,” she said.
While negotiating to bring Bobo to her workplace, Tonya says she also “really learned about self-advocacy,” a crucial aspect of navigating life with diabetes.
#4 We are not alone.
“I had been feeling kind of invisible for a while, or just feeling alone in my struggle,” Aisha Becker-Burrowes said as she described how she became involved in a photo shoot called Diabetics on the Margin that Ariel organized earlier this year. Aisha is from Manhattan and she has lived with type 1 for 15 years.
Developing “real” relationships was one thing that helped Aisha feel less alone and showed her that others are going through similar experiences.
“Doing it online is really great and has been an incredible space, but I also think it’s important to connect in person,” she said.
The idea that people need to share their stories in order to create communities and push for change resonated throughout the event. “I know that there are a lot of parents who are like me, there are a lot of kids who are like Chase, and you don’t always get to see those faces or hear those stories,” Courtney Taylor said, “Even hearing the Dexcom alarms going off, and I’m tapping Chase, like, is that yours?”
#5 Diabetes is an art form.
We’re brave for managing it every day and making sure our voices are heard. Panelist Ali Abdulkareem, the voice behind “The Diabetes Daily Hustle,” said this was one of the lessons he took away after participating in the panel.
“If you’re an artist, you cook or you paint or you make music, you don’t beat yourself up—at least, you shouldn’t—in the process and say, ‘Oh I made a bad song! I’m so stupid. I’m a bad person.’ The thing that I’m pushing, that I got from everyone, is that diabetes is an art form.”
And what comes with art? “No judgment.”
Acknowledging how hard we work at diabetes every day is a big part of feeling like our voices matter. One way to do this is by engaging with the diabetes community. During the panel discussion, Ali talked about how being a strong advocate is not easy and it’s important to be yourself and reach the positive people. Ali emphasized the importance of choosing types of engagement that suit you. That might mean connecting with people online who know what you’re going through or going to an event like Diabetics on the Margin.
“Spaces that particularly highlight the experiences of people of color with type 1 diabetes are … nonexistent,” said Eniola Araromi, who has had type 1 for over 20 years. “Being in this atmosphere where I can connect and talk to other people who are like me, other people of color is very needed.”
Read the coverage of The Diabetics on the Margins event.