Apr 2, 2021 | NEWS | By Lily Weaver | Photo courtesy of Tiana Cooks
Becoming the role model she wishes she had: How Tiana Cooks navigates and advocates for youth with diabetes in the Colorado Springs community
Tiana Cooks, a Colorado Springs native and a biracial woman in her early 20s, has served as an advocate and mentor for people of color since she was diagnosed with Type 1 diabetes during her senior year of high school.
Before her diagnosis, Cooks felt isolated, as it was rare for her to have classmates who looked like her or knew what it was like to grow up as a biracial girl in Colorado. After her diabetes diagnosis, the differences between her and her peers grew even more.
Cooks didn’t see many other BIPOC in the diabetes space, and as a way to raise awareness and better understand her disease, she became involved in a diabetes youth camp, allowing her to speak with others who had similar experiences. She is now a counselor at the youth diabetes camp, where she offers guidance to young girls with diabetes who are learning how to navigate their disease. She also helps raise awareness about technology, like continuous glucose monitors (CGMs), that make it easier to manage diabetes.
The Catalyst spoke to Cooks about her experiences navigating her identity as a biracial woman living in Colorado Springs, her Type 1 diabetes diagnosis, her work as an advocate for young people with diabetes, and her plans for continuing to be a positive role model for those who lack representation in their communities.
When asked what it was like growing up as a biracial girl in Colorado and what her childhood was like, Cooks said, “My childhood was interesting because, yes, I am Black, but I’m also Korean, so because of that I do have lighter skin, and I do have curlier hair. I struggled a lot growing up with fitting in, especially in elementary school. There were a lot of times where I went home and I was like, ‘I really want blonde hair, I really want white skin. I really wish I could have blue eyes.’ The reality was that that was never going to happen. It caused me to feel so inadequate in my own body and my own skin. You could see it in my eyes that I was unhappy with Tiana, as a person. Every time I tell this story I cry because it’s still something I’m working through. At the same time, I went to school with a few girls who did look like me, they were Black, and they would say rude things to me about my skin or my hair. They would be like, ‘Well, your hair is only that long because you’re mixed. That boy only likes you because you’re mixed.’ I didn’t really fit in anywhere. It was really hard. And it took me until senior year of high school to get over all of those insecurities. Still, today there are times that I can’t believe I even allowed myself to think that way. The more I tell my story, the more I talk to people, I hear that this is something common that little girls experience.”
Next, The Catalyst asked Cooks if she saw her identity represented in her community and if she had a positive role model growing up.
“The answer is no. I didn’t have any teachers that looked like me. I didn’t have very many friends that looked like me, not a lot of people around me I could relate to. I do remember there was one person when I was in third grade. I had really struggled with reading comprehension and was put in extra reading courses,” she said. “They took me to my tutor, and she was a UCCS student, and she was Black, and she was the only person that I ever had to look up to as a young girl because she really inspired me and saw me through my biggest challenge in my life at that time, which was my reading. I saw her as someone I could be like. I could go to college and I could tutor other little girls, but overall, no, I did not have anyone to look up to.”
Cooks further emphasized the enormous impact that the UCCS tutor had on her life.
“She is just an amazing woman and is someone I aspire to be like someday. She is a very admirable person,” she said. “She doesn’t realize how much she helped me throughout my older years, after I overcame all my adversities. I was diagnosed with Type 1 diabetes, and when I was diagnosed, I wanted to help girls like me, just like my tutor helped me when I was their age.”
Cooks also spoke about the ways in which her diabetes diagnosis helped her grapple with her identity, as well as the first time she saw a Black person represented in a diabetes pamphlet or in the media.
“It was two to three years after I was diagnosed. I actually went online and found out that there was a community of people who have diabetes on Instagram. I went to a JDRF (Juvenile Diabetes Research Foundation) walk, and a girl who was also Black came up to me and was like, ‘Are you Tiana? I follow you on Instagram.’ That was how I really started to connect with other Black people in the community, being online. Other than that, I didn’t see a whole lot of Black people who had diabetes represented and wasn’t sure if there were other people out there.”
Growing up in Colorado Springs has also contributed to Cooks’ experiences as a person of color with diabetes.
“The Springs, since I’ve lived here my whole life, is all I know. When there are people who have different views and perspectives, I’ve been raised to accept that and try to stay in my own bubble,” she said. “I’ve had to suppress a lot of my feelings and opinions because I don’t want to put myself in a dangerous situation, which has been hard.”
Asked if there is a particular community that she feels most safe around, Cooks said, “I feel the most comfortable when I talk to people who look like me and can relate to my experiences. When I was diagnosed, I immediately submerged myself in the diabetes space. The diabetes community itself in Colorado has been extremely helpful for me. There have been a lot of times where I was down on myself, and then I remember there is a purpose so much bigger than me. The kids I have been able to mentor in my community have really pushed me, especially the young girls I work with. A lot of them don’t see representation in the media and don’t see people like them with diabetes. A huge motivator for me is to help those girls feel like they belong. I want to show them that it’s okay to wear their insulin pump, show their DEXCOM, and it’s okay to fully be authentic to who you are because there is no flaw about you. I want to be the person they can look up to. I want to be their safe space. If they don’t have a safe place where they’re at or around their friends, I want to be there for them.”
Cooks explained how she initially got involved with the Diabetes Youth Camp.
“When I originally got involved in my community, I started setting up camps and organizing walks and support groups. You name it, I was there. Multiple camps had reached out and asked if I was willing to set up camps in Colorado Springs,” she said. “I agreed, and that was like my baby. I started the camps here, and I met with the community. There were about three of us on the team, and I planned everything out and created shirts. We started with 20 kids, and it was a one-day camp. Last year, we had well over 100 kids attend camp, and it was three days. It was so rewarding to see that the biggest struggle I had faced in my life became one of the biggest blessings in my work within my community.”
Cooks then expressed her future plans and goals for the camp.
“I would hope that camp would have more inclusion and diversity at some point. I would love to see more Black and brown kids have opportunities to go to camp because camp is another tool that will help them to be more successful at managing their diabetes. Meeting other people who not only look like you but can also relate to you makes such a difference in those kids lives.”
She noted that the biggest lesson she learned as a camp counselor at the Diabetes Youth Camp was “realizing that every kid has a different story, and I have the ability to help mold that story. You have kids who say, ‘Man, diabetes sucks. I hate this … I don’t like doing this…’ and I have the ability and power to say, ‘No you can do this, diabetes doesn’t suck, you have to change your mindset.’ I have the opportunity to make an impact on their lives. That has been super rewarding for me to help them navigate their journey.”
Cooks also works with kids at the Boys and Girls Club, a national organization that provides voluntary after-school programs for young people. When asked whether she feels included as a woman of color in Colorado’s outdoor and sports community she said, “There is obviously a huge race gap here in sports, children of color do not have the same opportunities as their white peers to participate in sports. It goes beyond the outdoor and sports community though. People of lower income cannot participate in many activities that other people may have access to. There are also barriers to transportation. At the Boys and Girls Club where I work, those kids don’t have any money at all. Their parents are just trying to put food on the table and a roof over their head, that’s it. Some of the most athletic and talented kids I’ve ever met in my life cannot utilize their talents because they don’t have the proper resources to do so.”
Cooks compared the work that she does at the Boys and Girls Club to the Diabetes Youth Camp.
“Across both, I have a huge passion of helping young girls overcome their struggles, whether that be being confident in their diabetes, wearing their DEXCOM or their supply, their CGM or their pump, or helping the little Black girls at the Boys and Girls Club becoming confident in being Black, or if those two intersect, I’m hoping a Black girl with diabetes will be confident in herself too. The Boys and Girls Club opened my eyes to the fact that we all have struggles and we all have stories and they all look different for a lot of people.”
Finally, Cooks reflected on ways to increase education and awareness around diabetes and diabetes technology, especially in communities of color.
“I think it needs to be more accessible to those people. There are a lot of barriers when you’re talking about Medicaid that people have to jump through, and it is oftentimes a very unrealistic ask. For instance, if you wanted to get on a CGM or pump, they would require you to check your blood sugar seven times a day but would only prescribe you enough test strips to test two times a day for the entire month. How do you expect these people to eventually have options when they can’t even do the bare minimum to get them? You must also work to meet the communities where they’re at. You might have to change the language and cater towards that particular demographic that you are trying to reach, and that looks a little different than what you usually do for marketing purposes. Additionally, there is education, making sure these people know about technology options that are available to them, because oftentimes, people don’t even know what’s out there. There are organizations that exist to raise awareness around the disease, such as JDRF and ADA (American Diabetes Association) and they do have chapters around the country. JDRF has a chapter in Denver but not Colorado Springs. It is important to make people aware about what diabetes is and the resources they need, if they do have diabetes, to ensure that they are successful at managing it. By successful, I mean having access to basic equipment that allows people to manage their disease.”
Cooks continues to raise awareness around diabetes technology and education, especially for little girls in the Colorado Springs community; she wants to be the positive role model she wishes she had more of when she was growing up.
I love Tiana’s story. My daughter was diagnosed at age 7 and yes living in CO we don’t see BIPOC represented in the T1D community and it’s reassuring to see Tiana lending her voice to help others navigate.