Top Three Reasons LGBTQ People Should Care About Health Data

Carolyn Hunt, MPA, PRIDEnet Community Engagement Director

As LGBTQ people, we fight our battles for equality, inclusion, and liberation on many fronts and in many ways. Arguably, a tactic employed in virtually every instance of success has been to increase visibility: coming out to families, in the media, in the public sphere, and then demanding acknowledgement and access. As marginalized and stigmatized people, many of us seek safety and rightfully fear standing out. However, many of us also have a need to be heard, to be counted, and to be part of the wider world.

Nothing increases visibility as effectively as information. This is why you should care about LGBTQ health data.

They’ve Made Data Their Battleground

In the most important report on LGBT health you’ve never read, The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for a Better Understanding, the National Academy of Medicine (formerly the Institute of Medicine) describes the lack of basic data about LGBT people as one of the most significant barriers to improving our health. Specifically, they recommend that “data on sexual orientation and gender identity should be collected in federally funded surveys administered by the Department of Health and Human Services and in other relevant federally funded surveys” in order to make any progress.

Pretty dry stuff, yes. And much of this discussion has gone under the radar. But those who oppose our efforts for justice and equality have made data an important battleground in their desire to roll back our social, political, and health gains. They know that if they can erase us from data collection, they can erase us from the public sphere — period. Check out this example of erasure, documented by our friends at the Center for American Progress.

Smart Movements Know the Value of Data

Photo of Alicia Garza: Sam Morris via Getty Images

In launching a new census project to mobilize black political power, Black Lives Matter co-founder Alicia Garza is focusing on collecting data to describe the range of issues black people face in this country in ways that aren’t being collected elsewhere. She says: “We really want to capture the breadth and the complexity of who our communities are and we plan to use that information to influence decisions that are made about us.”

One of the biggest take-aways from the 2016 election, Garza says, was that movement activists need to do a better job of communicating the conditions and experiences black communities are facing. That can only happen with data.

We need numbers and knowledge to craft effective strategy and make policy change.

Without Data, The Most Marginalized Get the Most Overlooked

Photo: Pratibha Parmar

If we can’t describe the conditions or tell the stories of the most vulnerable in our LGBT communities, we can’t effectively advocate or transform experiences of struggle into policy.

Longtime activist and filmmaker, Pratibha Parmar, talks about a key moment in her activism as a queer woman of color: “I remember a time when all these high-profile women of color were dying of breast cancer — Audre Lorde, Barbara Smith, June Jordan — and some of us questioned why African-American women seemed to be at a higher risk, but there was no data. We had nothing, only stories of loss. It made us feel helpless not having any factual data…”

Data about our lives and our health allows us to communicate all we are to the larger world, to be included, to make demands, and to be served well. Those who oppose us know it and are playing a long game. We should get the data we need to feel less helpless — and more empowered — in the face of loss.