The Importance of Black Representation in LGBTQIA+ Health Research
By JT Williams (He, Him, His)
LGBTQIA+ Regional Engagement Coordinator (South)
It’s Black History Month, and I’m JT “German Chocolate” Williams. I am your LGBTQIA+ Regional Engagement Coordinator of the South with PRIDEnet. PRIDEnet is a network of LGBTQIA+ serving clinics, community centers, advocacy groups and professional organizations that strive to catalyze LGBTQIA+ health research. My job is to disrupt the narrative that Black and Brown communities don’t participate in health research.
Why is your representation important in health research?
Our LGBTQIA+ community is full of diversity and includes different groups of people. However, when it comes to Black people within this community, we are often overlooked and undervalued, yet highly sought after when a company has to prove it’s diverse. This is true for other people of color, too. We are often treated as the problem, the solution and the troubleshooter. This can be tiresome, especially when looking at it through a historical lens and the mistreatment experienced in health research studies. The reality is, Black and Brown community’s voices and representation have often been overlooked and/or misrepresented in studies. We must acknowledge the eugenic and unethical clinical trials that misused our bodies, such as the experiments that happened with the U.S. Public Health Service Untreated Syphilis Study at Tuskegee. Learning and acknowledging this history is important; it’s respecting the individuals affected and it’s a reminder that this doesn’t have to continue being our story. We have the power to be the change we need to see, and part of that power is by participating in the entire research process and ensuring informed consent and ethical standards. Things have come a long way, but we still need improvement. This is your call to action; your voice is needed. Pick up!
Your participation in health research paints a picture of YOUR experiences and needs instead of having someone else tell your story for you. It helps provide data to create opportunities for learning and working towards reducing things like stigma, health disparities and a lack of access to the needs of Black LGBTQIA+ people. This leads to the greatest love of all, and I’m not talking about Whitney Houston. I am talking about the opportunity for the community to be acknowledged, recognized, seen, heard, valued, appreciated, respected and encouraged.
The importance of The PRIDE Study for all people of color
Now that sounds fancy. I buttered your biscuits and massaged your brains with that nice description, but come a bit closer and let me tell you why I am here, giving you all the blog realness. We know that people of color are not always included in research studies due to historical harms that have led to generational apprehension of participation. Let me sprinkle some LGBTQIA+ on top of that participation apprehension. It sounds like a mixing pot of disaster. Well, it doesn’t have to be. As I mentioned, we respect the history before us, but we need to create a new narrative for the future ahead of us.
With LGBTQIA+ people of color facing challenges such as social and economic inequalities, discrimination, barriers to accessing healthcare, community backlash, and stigmatizing legislation, it often feels like there is no hope for us. This is where PRIDEnet is working to change that conversation by providing opportunities through activities like community listening sessions, PRIDEnet cafes (online conversations), and research training.
You’ll see us promoting two research endeavors at several events around the country: the National Institutes of Health’s All of Us Research Program and The PRIDE Study.
All of Us is an effort to gather health data from one million or more people who reflect the diversity of the United States to accelerate research and improve health.
The PRIDE Study is a national, longitudinal study designed to understand the health needs of LGBTQ+ people in the United States through health topics like mental health, physical health, access to healthcare and many intersections that we experience in life.
With your experiences recorded and disseminated, we can now amplify the voices of the people, and health professionals can use the data to write their grant proposals to create further programs and studies that elevate our experiences. These initiatives may ultimately improve health care for all. No more “one-size-fits-all” when we have proof!
The wrap-up
This information may be new to some but seem repetitive to others. I get it; trust me, I do. This is why I am challenging you (yes, you, the reader) to consider the power of your voice. The power of your influence. What change could you ignite in your life, the lives of those around you, and the communities you represent? This is why we highlight our work at PRIDEnet that is passionate about answering these questions in research programs like the All of Us Research Program and The PRIDE Study. But we can’t do it without you. It may be Black History Month, but we know that Black history is 365.
How will your story become part of OUR history, inspiring current and future generations? By working together, we can ensure that all members of the LGBTQIA+ community have access to the resources and support they need to maintain good health and well-being.
Thank you for spending time with your friendly neighborhood German Chocolate LGBTQIA+ Regional Engagement Coordinator. Stay tuned for opportunities from the PRIDEnet team to learn more about our studies, research findings and other activities.
Visit PRIDEnet.org to learn more.
