We Were Meant to Be Here: A Disabled and Deaf Trans People’s Survey
Image Credit: Sarah Sarwar
Image Description: Illustrated graphic of a brown-skinned person with coily hair in two puffs wearing hearing aids, an orange top with yellow and pink accents, surrounded by icons that represent data, including a bar graph and pie chart.
I often think about the many times I have been asked to participate in a research study or academic effort. Invitations were usually connected to me being disabled, queer, trans, and being the primary parent of young children. The studies had no mechanisms for accountability, transparency, or compensation. The researchers didn’t seem to consider the impact this had on my willingness to extend my trust and my time or share deeply personal experiences. I also approach such capstone projects, doctoral theses, and research projects with caution and suspicion when the very people whose well-being they claim to be in service of aren’t reflected in a project’s leadership.
For years, there has been a lack of institutional and movement knowledge about the needs of disabled and Deaf trans communities, and no desire to address this gap. Too often, studies about our community’s needs are led by able-bodied, white, cis, middle- and upper-class straight male citizens. This creates significant gaps in all parts of the research — including the outreach, design, and resulting data — and replicates the exploitation, extraction, and dismissal so prevalent in disabled life.
The result: the flattening of disabled and Deaf trans experience, autonomy, and resistance.
Disability communities are brimming with life experiences that are as varied as our bodies and minds. Yet when research, as a field, offers lackluster, disingenuous, and, at times, dangerous options for engagement, we naturally hesitate. Plus, the resulting absence of information leaves scant details critical for our well-being, our individual and collective culture, and our sense of community — if not our literal survival.
All of this is why we want to do things differently. I am a Senior National Organizer with the Disability Project at the Transgender Law Center, and, in 2023, my colleagues and I created the first ever community-based research initiative for disabled and Deaf Trans people. Our goals were to learn what our lives were like across multiple aspects of our identities, inform our activism as a community, shift the narrative about our lives, and build cohesion and clarity around our collective struggles and power.
We designed a website with questions available in written and spoken English, Spanish, and American Sign Language (ASL). We encouraged participants to answer using any of those methods of communicating. We created a lottery system so randomly chosen participants would receive compensation that was appropriate for their time and within our means. More than 1,000 people completed the survey.
We asked participants about their experiences in healthcare, education, and social services, alongside themes of belonging and community, oppression and discrimination, and the COVID-19 pandemic. We also deliberately included an optional section inviting folks to share anything they felt we missed.
The results, published in July 2026, highlighted that systemic ableism negatively impacts disabled and Deaf trans folks’ ability to access a range of services — including those related to healthcare, education, housing, and benefits support — and creates material conditions that are harsh, punitive, and often dangerous. Notably, the survey illuminated that the harms of ableism are compounded by anti-Blackness and that the negative impacts for Black disabled and Deaf trans folks are significantly heightened.
Twenty-five percent of participants who sought housing or shelter were denied, and that number increased to more than 40% among Black respondents. More than half of all participants said they didn’t have the opportunities needed to express their gender identity. Eighty percent of respondents also reported being denied or prevented from receiving care or support that aligned with their gender. This included accessing healthcare and gender-affirming clothing, and providers declining to use their correct name or pronouns. This data spotlights the pervasiveness and frequency of the infantilization of disabled people and the fragility of a binary approach to gender. Equally concerning are experiences with isolation and connection; more than 75% of participants said they often or sometimes feel isolated from other trans people.
Taken together, the results reveal that our society and movements have a long way to go to ensure that disabled and Deaf trans people can realize the dignity, autonomy, quality of life and respect to which we are entitled.
Disabled and Deaf trans people know that we were meant to be here. We call on researchers to dismantle ableism, misogyny, transphobia, and anti-Blackness in all stages of the research process. We want our self-determination centered and the fact we are the experts in our lives honored. We are not merely your subjects, but rather the appropriate leaders for developing and conducting research about ourselves.
We call on all movements to challenge the beliefs, practices, and culture of ableism and its cousins in supremacy that create the isolating, demeaning, and violent conditions many of us encounter daily.
A political shift is needed to counter the experiences this research reveals, too. We call on all who are done settling for tokenistic change or complacency to re-center marginalized disabled and Deaf trans communities as a needed tactic and political responsibility. This shift is critical to our capacity to forge alliances across identities and historic divides, and build the collective power we need.
While the Disabled and Deaf Trans People’s Survey is the first of its kind, it will not be the last. It is an example of the way disabled and Deaf Trans communities are transforming systems and our movements to center our needs and the expertise we bring, while continuing to fight for the dignity, safety, and self-determination of all who are considered deviant, dangerous, and unworthy.
We are meant to be here.
