The Care We Dream Of: Liberatory and Transformative Approaches to LGBTQ+ Health (2021), is a book organized and edited by Zena Sharman, in collaboration with other contributors from different origins, races and social classes, each with their own life experiences and contributions. It illustrates past and current realities and imagines and invents new frameworks for queer and trans people with health, both in mainstream systems and self-created care like community mutual aid.
In an interview with Scarleteen, Sharman talks about how The Care We Dream Of diverges from her previous book The Remedy: Queer and Trans Voices on Health and Health Care (2016), health care approaches for young members of the LGBTQIA+ community and how straight and cisgender allies can help to paint a more hopeful picture for LGBTQAI+ people.
Scarleteen (ST): In your previous book, The Remedy, you approached similar issues. How is The Care We Dream Of different from The Remedy?
Zena Sharman (ZS): All of my books are offerings to the LGBTQIA+ community and a form of activism, grounded in the idea that sharing our stories can be a powerful tool for changing oppressive systems like health care. I like to think of my books as magic spells, in that I spend years creating them and then send them out into the world where they do their own kind of work in collaboration with readers. I always love hearing from readers about how they’re connecting with, learning from, and sharing my books with others.
My previous book, The Remedy: Queer and Trans Voices on Health and Health Care, was published in 2016. The Remedy is a collection of stories by queer and trans people about their experiences as patients, health care providers, and providers-in-training. These stories vividly portrayed the harmful impacts of non-affirming health care and offered joyful glimpses of what affirming, accessible, LGBTQIA+-centered care can look like.
What The Remedy didn’t do was offer readers strategies and inspiration for dreaming beyond and transforming the kinds of health care they have access to. My 2021 book, The Care We Dream Of: Liberatory and Transformative Approaches to LGBTQ+ Health, is my answer to this. Created in collaboration with fifteen contributors from across North America, the book merges practical ideas with liberatory imaginings about what queer and trans health care could be, grounded in historical examples, present-day experiments, and dreams of the future. At its heart, The Care We Dream Of is a spell of transformation, one that’s both a loving invitation and an urgent demand to leave no one behind as we dream a more liberated future into being.
ST: Mistreatment of LGBTQIA+ people in healthcare is sadly common. Why? What can be done to change this? What can the healthcare community do? What can straight allies do? What can LGBTQIA+ people themselves do?
ZS: Research backs up what many LGBTQIA+ people already know through our lived experiences: when we seek out health care, we face a higher likelihood of being discriminated against or outright harmed by our care providers, if we can access health care at all. Many LGBTQIA+ people lack access to dignified, respectful, knowledgeable care because of systemic barriers like poverty, racism , and ableism . Accessing the care we need can feel scary, exhausting, frustrating, and like a lot of work; sometimes, it feels downright impossible! When we do access health care, we often feel like we have to hide parts of ourselves, perform the role of the “good” patient, or make compromises to get what we need. In the process, we may experience harm or violence from the people whose job it is to take care of us.
When we have experiences like this, it can be easy to feel like it’s our fault. A key message I want to convey is that you aren’t the problem, the health system is. It’s built on a foundation of racism, settler colonialism, ableism, sexism , homophobia , transphobia , and other forms of systemic oppression. This shows up everywhere from what people learn in medical school (and who even has access to medical school) to the design of our hospitals to the whole idea of what a “healthy” person looks like. (If you want to learn more about this, you can check out Mia Mingus’ blog post on the medical industrial complex.)
There’s also a vibrant and ongoing legacy of resistance to these harmful and oppressive dynamics that’s taking place both within and outside the health system. This resistance looks all kinds of ways in all kinds of communities, and it’s happening on both small and large scales. For example, it might look like LGBTQIA+ people organizing with each other to share health knowledge, tools and advice [like Scarleteen!], or health care providers making the effort to learn more about LGBTQIA+ health—a topic that’s still inadequately covered in their formal education—and working collaboratively and humbly with their patients instead of always assuming they’re the experts in the room.
It also looks like communities organizing around their own health and healing outside the formal health system. A historical example of this is the health activism of the Black Panther Party; their radical work included setting up free medical clinics, screening their community members for diseases like sickle cell anemia or lead poisoning, and fighting racial bias in the medical system and health research. Many communities are doing similar work today. One example is Mental Health First, a California-based community-led first response group whose mandate is to respond to mental health crises in ways that don’t involve the police.
ST: How can the allyship for and among LGBTQIA+ communities and members act to improve health care and healthcare systems?
ZS: The LGBTQIA+ community is where I first learned about mutual aid, which I think of as solidarity-based practices of caring for each other and meeting each other’s needs outside of formal systems. These practices are integral to our ability to navigate a world not built for us. They’re also one of the reasons why the most sophisticated knowledge about LGBTQIA+ health resides in our communities—and in our bodyminds—and not in medical textbooks.
Every LGBTQIA+ person I know shares health information, strategies, and tools with their friends, lovers, and communities. This might look like the practice of “crip doulaing,” which is how Stacey Park Milbern described “the process by which disabled people mentor other disabled people in learning new disabled skills.” It looks like trans people sharing knowledge with each other about their experiences with hormones , surgeries, or other aspects of gender transition , often in ways formal medical practice or mainstream health research haven’t caught up with yet. Some examples of what this has looked like in my own life are sharing advice on DIY home insemination with friends who are trying to get pregnant, trading recommendations for queer-positive therapists, or co-creating our own rituals to move through grief or heal from trauma .
The health system wasn’t built for us and remains a site of harm and systemic oppression for many people and communities, including and very much not limited to LGBTQIA+ people. By gathering and sharing our knowledge, skills, and experiences with each other, we can help create more ease in navigating the formal health system. We can also do the important work of caring for ourselves and each other outside of this system while working to transform it.
ST: Do you believe that more LGBTQIA+ people working in healthcare will make healthcare systems more accessible and better for LGBTQIA+ people?
ZS: Are there (and have there always been) LGBTQIA+ people working within healthcare to make these systems more accessible to LGBTQIA+ people and communities? Yes, absolutely. I know many people doing this work today and am immensely grateful for their work. I’m also aware of the toll it often takes on them to be working inside a system that’s actively harming them and their communities. Their efforts build on the legacies of LGBTQIA+ elders and ancestors who’ve worked and fought for generations to change the system from within, alongside a vibrant and ongoing legacy of community-driven efforts to change the system from outside.
That said, do I think being an LGBTQIA+ person automatically makes you an agent of radical health system change, or an expert on all aspects of LGBTQIA+ health? No. Does it render you immune against your own complicity with and perpetuation of systemic oppression? Absolutely not. I’m acutely conscious of what this means for me as a queer person who is white, cisgender, non-disabled, neurotypical, and privileged in many ways that make me more legible as an expert to some people who hold power in the health system or in medical education.
This makes me think of all the ways mainstream LGBTQIA+ movements have centered the needs and priorities of rich, white, cisgender, “respectable” LGBTQIA+ people, often at the expense of members of our community who bear the brunt of systemic oppression, like trans women of color. A specific example of this is the fight for marriage equality; why not put the same resources into fighting for universal health care, abolishing the prison industrial complex, and ensuring all people can move freely across borders? (I found the book Against Equality: Queer Revolution, Not Mere Inclusion to be a helpful introduction to these ideas.)
ST: The mistreatment of LGBTQIA+ people by the healthcare system and its professionals has a long history, having reached what is possibly its lowest point in the 1980’s AIDS crisis. How do you explain the history to a young person? Is it any better now compared to the past?
ZS: The AIDS crisis is a key example of state and societal violence against and abandonment of people and communities living with and affected by HIV /AIDS, including LGBTQIA+ people, BIPOC people, women, people who use drugs, and people who are incarcerated in prisons and jails. It’s also an important example of resistance, activism, and organizing by these communities, work that’s ongoing. Learning about this history and ongoing work continues to be vital for me as a queer person and LGBTQIA+ advocate; so is learning about other interconnected histories and how they continue shaping our present and future possibilities today.
I think it’s important for us to learn about history in order to make sense of the present and imagine alternate futures. I spent a lot of time in school — we’re talking 25 years of my life! — and I’m continually amazed by what I don’t know about our history and what I wasn’t taught through all that formal education.
I’m not suggesting the classroom is the only place learning happens—quite the opposite, actually, as I’ve done a lot of my most important learning through my body, in and with my community, and through my lived experiences. Still, I feel acutely conscious of and motivated by my awareness of the gaps between what I learned about history in school and what I still need to learn. This is important work for me as a white person of Irish and Scottish ancestry living on stolen Indigenous lands; it’s also important to me as a queer person working to be in solidarity with other people and communities committed to the generation-spanning work of liberation.
My encouragement to anyone reading this is to get curious about the histories of the LGBTQIA+ community and how they might help you put our present-day experiences in context. I’d especially encourage you to seek out the stories and perspectives of Black, Indigenous and people of color (BIPOC), disabled people, and other LGBTQIA+ people and communities whose stories often get written out of mainstream accounts of our history.
ST: Different stages of life are approached in the book by Hannah Kia, in particular one that is very challenging: aging in the queer community. How do you talk to LGBTQIA+ people on how to grow and experience this stage of life, especially considering how many are victims to violence, harassment or negligent healthcare? How can young people do their part to support their queer elders now and make a better world for themselves for when they're older?
ZS: I’m in my early forties now and am a parent to a young child who I’m co-parenting alongside my partner and two other queer people. I mention this context because there’s something about my experiences of being middle-aged while also raising a younger kid that’s made me increasingly radical about intergenerational solidarity. My perspective on this is heavily influenced by my ongoing learning about disability justice. It’s a movement created and led by disabled queer and trans people of color that affirms the inherent worth and value of all bodyminds, especially those who don’t conform to ableist, sanist, white supremacist, capitalist norms of productivity.
We live in an ageist society, one that often discriminates against younger people and older people. If you’re a younger person reading this, you might have experiences of people not listening to you or respecting your perspective because of your age, or creating spaces that are inaccessible to you. Older adults experience this kind of ageist discrimination, too, experiences that intersect with other facets of their identities, like disability, racialization, gender, or sexuality. The LGBTQIA+ community can be super ageist in ways that systematically devalue and exclude many people. Something I’ve noticed—and that both saddens and frustrates me—is how age-segmented my own queer community is. I mostly hang out with queer and trans people in our thirties and forties, with even further separation between those of us who have kids and those of us who don’t. I wish this was different and am still working on changing what this looks like in my own life.
I dream of being part of a community where we have friends of all ages, with richly accessible intergenerational spaces where LGBTQIA+ people of all ages are able to flourish together. Nobody gets stuck in a homophobic or transphobic nursing home. We listen deeply to and welcome the leadership of children, young people, and older people, respect the worth, dignity, and perspectives of every person, from age two to a hundred-and-two, and learn how to imagine and live into vibrant futures for ourselves as we age.
I’m still figuring out what I can do to help build this world. Some of the places I’ve found inspiration are in spaces like my friend Ryan Backer’s wonderful Age Queer workshop and through projects like To Survive on This Shore, as well as through books like Don't Leave Your Friends Behind: Concrete Ways to Support Families in Social Justice Movements and Communities.
