Redefining Lived Experience: Black, Brown, Trans & Queer Power
“I’m not calling any suicide hotlines, thank you very much, I don’t need cops at my door. I don’t need someone calling me sir on the phone because of my voice. I don’t need some well meaning white person trying to tell me that it’s not as bad as I think or that I just need to get through it.”
I had just started working in crisis and peer support and had a conversation with a friend of mine about how there are hotlines for when she’s feeling down. We were commiserating about the lack of resources that are safe for people who are trans and also Black, Brown and/or immigrants. She shook her head. “There’s too much at stake and not enough to get from it. If there was a way for people we actually relate to, like, in our community, to connect with each other without shame, that would be good. But it’s hard to build stuff like that unless you know how to run it and have the money for the program.”
In the world of crisis and peer support services, there’s this concept of “lived experience”. In the vast majority of programs, it is short for “lived experience with (recovery from) mental illness and/or substance use”. As the field grows and changes, people who have “lived experience” with a bit more than just mental health and substance use are seeing the extreme shortcomings of that definition.
In a world that would prefer for us to not be alive, mental health and survival has a very different meaning for people who live with the realities of racism, homophobia, transphobia, xenophobia, ableism and poverty. Our “lived experience” is, first and foremost, our lived experience as marginalized people. Our mental health struggles – anxiety, depression, suicidality – are not a freak occurrence. They are a natural response to isolation, abuse and hopelessness. Let me say it again: it is normal and it is natural and it is not irrational to not want to be alive in a world that doesn’t want us alive. The answer isn’t more platitudes or police. It is and always has been community.
We hear the stats all the time. According to the Black LGBTQ Youth Mental Health Report, one in 3 Black trans youth attempt suicide — it’s twice as common as suicidality in cisgender queer Black youth. However, it’s not being out as trans that does it. According to the 2017 Trans Mental Health Survey, coming out as trans actually decreases suicidality for trans people by nearly 20%. So the answer is what anyone in the community could tell you. It’s living in a racist, transphobic society that makes us struggle. It’s lacking community, housing, safety. It’s not the fact of being trans or a person of color.
Nothing about us without us
The solution is resources that people can actually trust. What does that mean? Let’s go back to what my friend was saying.
Equitable mental health and peer support resources need to be based on informed consent and not involve police — or any services called on a person without their request. Many hotlines, chat lines and so forth engage in nonconsensual intervention, or what they call “active rescue”. For Black, Brown, immigrant, trans, queer and neurodivergent people, the act of a “wellness check” itself can spell a death sentence. Much of the most horrific police violence is enacted on disabled people – and on people experiencing a mental health crisis. In hospitals, trans and racialized people experience exorbitant amounts of mistreatment as well. Trans people report intentional deadnaming, misgendering, emotional, physical and sexual abuse in inpatient facilities.
Denial of access to supportive family and friends, gender-affirming medical treatment and correct housing, as well as exposure to religious treatment and invasive physical examinations are also a frequent occurrence. After discharge, many trans people face denial of gender-affirming medical treatment due to their history of hospitalization. In the general population, hospitalization often increases rates of suicidality. A 2019 Harvard Review of Psychiatry review of 48 studies on the topic found that the rate of suicide following psychiatric hospital discharge is more than 20 times higher than in the general population, and higher than in “large clinical samples of comparable, but not necessarily recently hospitalized, patients”.
We have to build something that doesn’t retraumatize us. Where people reaching out for support and resources always decide what help looks like for them. Anonymous. Confidential.
Building community solutions
Now that we know what we don’t need, what do we need? It’s not enough for peer supporters to understand mental health and substance use. It’s much more than that. According to Dr. Rylan Testa’s Gender Minority Stress and Resilience Measure, one of the most important protective factors increasing trans resilience is access to trans community. Similarly, Black and Brown resilience flourishes in community. This makes sense — our power is in our shared, understood struggle and shared, understood strength. We need to redefine “lived experience”.
We need a way for every marginalized community, every organization that wants to, to be able to build crisis, emotional, peer support and resource referral programs that are run by and for people with lived experience with that marginalization. Building support systems can be cost-prohibitive — both in dollars and in emotional toll. But this can be avoided.
We built PeerPride because we want to support our communities in leading on creating their own systems of care. We want to see remote, anonymous, confidential and other support systems replicated on small and large scales, over and over. We want our people to see that there are multitudes of options free of trust-breaking intervention, unrelatable providers and large nonprofits. We want to create spaces that people can trust — and the only way to do that is for communities to create their own spaces. We decided to build hotline, chat and text support software that will be available open source, for free for any community group run by and for oppressed people. Our team is made up of trans and BIPOC peer support, crisis and equity experts who are available to train anyone on how to provide sustainable, equity-based peer support.
I’m so excited to be working with everyone else on our incredible team to create mental health and practical survival resources that are real, accessible and can survive any pandemic — be that COVID or the pandemics of racism, transphobia, homophobia, ableism or class oppression. Together with a powerful team of incredible social justice and support organizations, we’re going to build something that turns “crisis intervention” into real resourcing and community care.