Unique LGBTQ survey piloted in Oregon

  • by Matthew S. Bajko, Assistant Editor
  • Wednesday June 26, 2024
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Oregon's Queer Data Project received state funding for its survey. Photo: Oregon State Capitol FB page<br>
Oregon's Queer Data Project received state funding for its survey. Photo: Oregon State Capitol FB page

With the ongoing lack of comprehensive demographic data on the LGBTQ community, Oregon leaders are piloting a unique effort to rectify the issue in the Beaver State. They have launched what is believed to be the first community-led LGBTQ statewide survey.

Known as the Queer Data Project, it received $1.25 million in state funding this year, allowing for development of the questions that will be included in the survey of Oregon's LGBTQ residents. Project leaders are working to finalize the forms by early 2025 and plan to begin collecting the data next spring when Pride events start taking place in cities around the state.

"We really want the questions we ask to be questions actually meaningful to us as a community," said Portland resident Julia Przedworski, Ph.D., 40, who is nonbinary, gender fluid, and queer.

Przedworski, a native of Poland who has lived in Oregon for six years, is working as a research implementation lead for the data project. As the self-described "nerd on deck" who has worked in the public health sector for two decades, they are assisting LGBTQ community leaders involved in designing the survey to figure out such issues as its length and the topics it should cover.

"This is not some external agency or academic institution coming in and saying this is what we want to know about your community. We don't want to just be the objects of research," said Przedworski.

The goal is to have at least 5,000 queer and trans Oregonians of all ages fill out the survey, expected to be conducted online. Within that target number, the data project aims to have meaningful numbers of respondents from the state's homeless; Black, Indigenous, and people of color; immigrant; and rural LGBTQ communities; as well as LGBTQ members of its Native Nations.

"We are trying to make this geographically really diverse as well as diverse across intersecting identities of queer folks," said Bend, Oregon resident LeeAnn O'Neill, 44, who is queer and gender expansive.

O'Neill is part of the data project's design team, comprised of residents from across the state who have a fiduciary duty over it. It serves as a board of directors that meets every other month and will be hiring an implementation team to oversee the day-to-day operations for the survey.

"The design team is really driving the values and decision making for this project. We want this to be led by and for the community," explained O'Neill during an interview this spring with the Bay Area Reporter.

O'Neill was born in Korea and "forcefully removed through adoption" from the Asian country by a white family, according to her bio on the website of Allyship in Action, a collaborative she jointly formed for consultants in the state. She has taught medical staff about how to collect LGBTQ demographic data.

She is particularly focused on ensuring that LGBTQ people of color and those who live in the more rural eastern areas of Oregon take part in the data project's survey. Too often, said O'Neill, what LGBTQ data collection is done in the state is focused on the more urban centers like Portland that skew toward more white residents.

"A huge part of the state never sees themselves in this data," O'Neill said of previous LGBTQ-based surveys.

Based on what demographic data has been released, it is estimated that approximately 253,300 Oregon residents (7.8% of the state's population) are LGBTQ. According to an overview created for the Queer Data Project, Oregon has the largest per capita population of LGBTQ people in the country.

Due to the enactment of anti-LGBTQ legislation in other states in the region, such as Idaho and Montana, there has been an influx in recent years of LGBTQ residents from those states to Oregon's rural cities, said O'Neill. Thus, it is important to know what their needs are and experiences have been, she added.

"They are coming to Oregon because LGBTQ protections are somewhat robust. But they want a rural lifestyle and go to Bend or Burns to get statewide protections while still having the rural values they hold," said O'Neill, noting that Bend has hosted a Pride event for years.

Missing demographics

As the B.A.R. has been reporting on for decades, the exact size of the LGBTQ population in the U.S. and in the individual states is unknown since the decennial census form does not ask about people's sexual orientation or gender identity, known as SOGI for short. Such population sizes have been estimated using various surveys conducted by polling outfits, health agencies, and special interest groups, but the figures do not capture a truly accurate count.

The U.S. Census Bureau is eyeing an August start date for testing SOGI questions on its American Community Survey, which LGBTQ advocates hope will be another step toward seeing them included on a census form, perhaps as soon as 2030. But as the B.A.R. noted in May, the federal questionnaire sent monthly to 295,000 households in the U.S. and Puerto Rico would only be asking the SOGI questions of people 15 years of age and older.

The issues around SOGI data collection became apparent at the start of the COVID pandemic in 2020. Unlike with every other marginalized community, health officials and government agencies had no idea about how many LGBTQ people were becoming infected or dying from the novel coronavirus, information still unknown to this day.

Even in California, where state lawmakers had mandated the state's departments of health care services, public health, social services, and aging begin gathering SOGI data in 2016, no reliable data was collected about COVID's impacts within the Golden State's LGBTQ community. Health officials have pointed to myriad issues, from concerns about patient privacy and no federal mandates regarding SOGI data collection to difficulties in updating medical record-keeping systems, for why there have been problems in being able to collect the LGBTQ health information.

Even after another round of legislation was enacted to force the collection of LGBTQ COVID data, problems continued to exist. A scathing state audit released last year detailed numerous ongoing issues with the California Department of Public Health's SOGI data efforts.

The state agency has been working to address the audit findings and enact its recommendations. As the B.A.R. noted in December, it is aiming to have all local health agencies reporting LGBTQ health information to it by March 31, 2026.

A law working its way through the Legislature this year, authored by gay state Senator Scott Wiener (D-San Francisco), would require the state health department to implement all of the audit's recommendations regarding its SOGI data collection. He has said his Senate Bill 957 is a "critical first step to eliminating health disparities" that LGBTQ Californians are facing.

Meanwhile, the California Department of Aging is set to begin releasing this summer the results of its first survey of the state's older LGBTQ residents. It conducted it online this past winter and asked respondents about myriad concerns, from their health issues and insurance coverage to living arrangements, social activities, and relationships.

The state of Oregon had conducted a similar survey of its LGBTQ senior population and published the findings in 2021. It noted that "LGBTQ+ older adults remain a largely invisible population, with little knowledge of their unique challenges, needs and resources."

Oregon project funded

During the special legislative session that ended in March, the Oregon Legislature's LGBTQ Caucus had championed funding for the Queer Data Project as one of its two inaugural legislative priorities. Leading the effort were gay state Representative Ben Bowman (D), the majority leader in the Oregon House, and Senators Kate Lieber (D), a lesbian who is her chamber's majority leader, and Elizabeth Steiner (D), an ally who chaired the Joint Ways and Means Committee and is running to be the state's treasurer. Lesbian Governor Tina Kotek (D) also supported the funding request, which was included in the budget she signed into law.

The data project grew out of $65,000 in seed funding the city of Portland had budgeted in 2022 toward the development of an LGBTQ survey. Lex Jakusovszky, the city's first senior LGBTQIA2S+ policy analyst within the Office of Equity and Human Rights, had reached out to Emily Evans, a lesbian married mom who co-owns The Evans Practice with her wife, Mayra Arreola, 44, who is bisexual.

Evans, 41, who grew up in Ashland, Oregon, had worked on a report about the lives of women and girls in the state back in 2016 when she was executive director of the Women's Foundation of Oregon. Jakusovszky, at the time a chief of staff for a state legislator, had seen that report and the impact it had.

With another $15,000 from the Oregon Community Foundation to award stipends to the data project's design team members, Evans and the other LGBTQ community leaders spent a year on a feasibility study and determining what structure they wanted for the data project before seeking the state funding.

"It is sort of opposite of how this often goes, in that we usually see a researcher apply for grants and move forward with the research in that way," noted Evans, "or a government entity puts out an RFP, which is what is really driving the project's timeline and budget."

The data project's total budget is set at $2.5 million, with more than $800,000 raised from private foundational donors. Evans told the B.A.R. she is hopeful of securing the full amount.

"We have more than enough to launch the project and get things going," she said during an interview in the spring.

Options for SOGI questions

The project's data committee has been tasked with looking at what options for one's sexual orientation and gender identity should be included on the survey. Oftentimes the choices are limited, drawing criticism from LGBTQ advocates who want to see a broader list of terms used by demographers and researchers.

"How many times do we get to self-identify the data that gets collected on us?" asked O'Neill.

A key question the data project is attempting to address, added Przedworski, is "How can we tell our own stories?"

With their survey, the data project leaders plan to take a "strength approach," noted Przedworski, meaning it is not only focused on what is ailing or troubling LGBTQ Oregonians. The data project also wants to mine what successes queer and trans citizens of the state have achieved in their lives.

"What questions can we ask not only to show what the needs and inequities and injustices we face in our communities are but also to highlight queer strength and joy and how we are thriving and are resilient?" asked Przedworski, adding, "We just want to be seen as complete, whole people, not just a collection of problems defined generally by straight and cis people."

As such, surveying is underway of LGBTQ community members on what they would like to be asked about by the data project next year. Project leaders and staff have been tabling at various LGBTQ events this year to gather the input before they begin to hash out in the fall what the survey will include.

"We are making sure everyone in the community is shaping this process from the get-go and that it is not just an extractive process," explained Przedworski. "We don't assume we know better than others do."

An outgrowth of the LGBTQ survey is a database of 100-plus nonprofits and agencies providing services to the LGBTQ community in Oregon. It can be accessed online.

Another aspect of the data project's work will be collecting oral interviews via statewide listening sessions and focus groups. The project leaders want to include LGBTQ Oregonians talking about their own lives using their own words and will do so confidentially if those being interviewed are concerned about protecting their privacy.

People will also be able to send in their own short videotaped or audio recorded clips. They will also be able to submit photos of themselves that capture what it means for them to be an LGBTQ resident of the state.

"We know surveys can miss that nuance," explained Przedworski. "We can't be reduced to a bunch of graphs and charts. That feels so one dimensional and narrow."

O'Neill told the B.A.R. she doesn't want the data project to only be telling "a sob story" about life for LGBTQ Oregonians. It should begin reporting out its findings in early 2026.

"We want there to be storytelling and a different approach to the data that is a little less clinical than what we are seeing with the health care data," said O'Neill.

The Pride Foundation, an LGBTQ philanthropic group focused on the Pacific Northwest, is acting as the fiscal sponsor for the Oregon Data Project. It granted it $250,000 and has waived the fees it would normally charge for playing such a role, noted Katie Carter, its CEO who is queer and based in Seattle.

Speaking to the B.A.R. earlier this year, Carter noted that there is "very little data" collected on the queer community, thus it is "so critical" what Oregon LGBTQ leaders are trying to achieve with their effort. She hopes to see it be taken up in other states, as having such data can impact everything from policies lawmakers enact to funding provided by the government and other sources, noted Carter.

"It is such an incredible model that could be replicated and should be replicated. We just think it is amazing and are doing whatever we can to make it happen," said Carter.

Evans told the B.A.R. the Oregon data project team would like it to be an ongoing survey. It is building out the infrastructure so it can be conducted again, if not annually then on a certain rotational timeline.

"We definitely hope it is not one and done," she said.

Having a comprehensive picture of not only the hurdles they face but also the successes LGBTQ Oregonians have achieved will be particularly important information to highlight for younger members of the community, Przedworski pointed out to the B.A.R.

"Another important aspect to this is with queer and trans youth, if the only messaging they are getting is queer and trans people are suffering, and don't also get to hear about queer and trans joy and resilience, and the euphoria that can come from being who we are fully," they said, "what kind of message does that send to our young people?"

Too often what SOGI surveys are conducted only focus on people's oppression, which can be "really triggering" for some people, noted O'Neill. She said she doesn't want the data project to just define LGBTQ Oregonians based on their trauma.

"That is what data has often historically been focused on," she said. "It defines you as a group by your traumas and, in the process, retraumatizes you."

Such an approach ends up not holding those responsible for the trauma to account, argued O'Neill. With the data project, she is interested in exploring how to support people in their healing process.

"I believe queer joy, in and of itself, should be a part of this. I want that captured too," said O'Neill, "so it is not just about the trauma but about these are the things that are going to support me finding these moments of joy."

Both the negative and positive aspects of life as a queer or trans person are important to be talking about, argued Przedworski, as they exist in symbiosis. Neither is the sole defining characteristic for LGBTQ individuals.

"If only one story gets told then that is what defines us, and it is not always correct," they said. "We are spending up to a year talking to people across our communities about how do you want to tell your stories."

To learn more about the Queer Data Project, visit its website.

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