Who Are The Diabetics on The Margin?
November 8, 2018
Creating Your Diatribe
I initially connected with Ariel Lawrence after we had both been interviewed on the Diabetics Doing Things Podcast. At the time, she told me about her partnership event, “Diabetics on the Margin” with Beyond Type 1, celebrating and supporting people of color. I immediately bought a ticket.
When the elevator opened to the Homepolish offices where the event took place, I saw type 1 diabetics of color everywhere. I also noticed a spread of perfectly portioned low-carb breakfast items,emergency gummies, and juices. It was the first time I had ever seen anything like it, and it was magical. I knelt down to check my blood sugar in the corner of the room and was promptly invited to sit in a comfy chair instead (also something that had never happened to me before). I had gotten used to having to take care of myself on the margins at social gatherings. At the Diabetics on the Margin event, being invited to sit at the table (and check my sugar at it) was so empowering that all my shyness immediately disappeared.
Just when I started mingling, I saw two familiar faces - Danielle and Joe! We had gone to high school together, but had lost touch over the years. As I soon discovered, they also have type 1 diabetes. The accidental high school reunion made us newfound “diabuddies” for life. Everyone I met commented on how happy they were to finally find an event like this, after many years of googling in vain for something similar, or joining online groups that did not actually offer a real community or safe space to talk about race and ethnicity in relation to diabetes.
Post initial mingling and snacking (thanks @Sweetsciencechef), the audience took their seats to hear various perspectives from Ariel Lawrence, Ali Abdulkareem, Dr. Maria E Peña, Vivian Nabeta, Courtney Taylor and Chase Dupont, Sarah Lucas and Grace Bonney. Sarah Lucas talked about Beyond Type 1’s mission to provide all the resources people need to connect with one another and manage a life-long condition, as well as their partnership with Ariel Lawrence and other sponsors that made this event possible. Ariel shared with us her reasons for starting the Diabetics on the Margin platform—primarily to support one another. Discussion followed about what real support systems might look like, how best to cope with physical and mental diabetic burnout, and what the people who love us can do to help.
"Do your own research, too. Don’t put all the burden on us to educate you."
Finding the Right Doctor
Endocrinologist Dr. Peña discussed her personal frustrations as a doctor looking after those with diabetes:
"Doctors will overbook, expecting some patients not to show up, because they have pressure from insurance companies to meet patient quotas."
Courtney Taylor, the mother of 10 year old Chase Dupont (diagnosed at age 3), shared the challenges she had encountered in the health care system from the patient/carer perspective:
"When Chase’s blood sugars were all over the place over the summer, I thought about rescheduling his tri-monthly appointment so I could get him back on track, because I didn’t want to hear from his doctor that I don’t know what I’m doing or that I’m not doing enough for my child...when I’m doing everything I can to keep him alive."
Following a discussion, it was generally accepted that compromise is needed on both sides—doctors have to be able to discuss management options without being accusatory, and patients have to make an effort to show up or ask if their doctors can provide phone or other guidance about their blood work when they cannot make an appointment. Vivian Nabeta mentioned other socioeconomic reasons for patients not showing up (in America and Africa): distance from the clinic and lack of transportation; having to choose between eating today or paying for a doctor’s visit; and not having access to childcare.
Opposition To This Event and Events Like This
The panelists and audience members had all experienced opposition from those who claimed that such events might be seen as either anti-white, or believed that they should not be separated from more general discussions on diabetes. CEO and Co-Founder Sarah Lucas responded:
"Beyond Type 1 isn’t afraid to say anything and stand behind those whose stories deserve to be told."
Grace Bonney agreed:
"We have plenty of space. We don't need anymore space. There's tons of visibility for white people with Type 1. It is absolutely our job to talk to the other white people who are doing a poor job, to give people of color the space they need to speak on issues that matter to them."
Similarly, from Ariel Lawrence:
"We’re not excluding white people. We need you to be here as allies so we’re not just preaching to the choir.” When asked what seeing yourself represented here today means to you, Courtney clarified the question for Chase. She asked the audience to raise their hands if they were living with type 1 diabetes and a sea of hands immediately went up. Courtney then asked her son:
"Chase, imagine this is your classroom and you see all these people have type one, how does that make you feel?”
"It makes me feel excited...to know all these people know what it’s like to live with this."
For me, representation is everything. We all need to be able to see ourselves in order to build a real diabuddy support system, to resolve the socio-economic barriers, and to ultimately find our sugar freedom. We can only achieve that when everyone is at the table.