Nothing About Us Without Us: A Q&A with the Editors of We’ve Been Too Patient
We’ve Been Too Patient is an anthology edited by L.D. Green and Kelechi Ubozoh that challenges the biomedical model of mental illness. Below, a Q&A with the editors that explores the failures of our current system; intersections of mental healthcare, power, and oppression; what radical care can look like; and narrative as a healing strategy.
Why the title “We’ve Been Too Patient?”
Kelechi Ubozoh: Aside from the cool word play of “patient” being someone receiving “treatment” and the character quality of someone with the willingness to endure, the title illustrates that we have been too patient with the system—but we are ready to act now on our own behalf.
L.D. Green: We want to emphasize that those with lived experience of mental health struggles are a diverse group, yet also share a common experience of struggle with societal stigma—and also oppression from the very institutions which are supposed to support us.
K.U.: This anthology is about putting power back into the hands of people seeking mental health services, specifically about the types of interventions that we want, that we need, and that work.
L.D.G.: We’ve Been Too Patient: there is more to us than our struggles or diagnoses, and we’re not waiting around for the culture, and the mental health system, to acknowledge this anymore.
Who is this book for?
L.D.G.: This book is for anyone with lived experience with mental health struggles, especially those who have found discomfort or difficulty or outright pain from the mental health system itself. It is also for allies, family, loved ones, mental health workers and therapists. It can even be for psychiatrists who question the biomedical model already, or who are willing to listen and self-reflect.
K.U.: Mental health touches so many lives, and there are many different perspectives, but ultimately, I think this book is for anyone who deeply cares about mental health. This book is for people who have their own mental health struggles and/or triumphs. This book is for survivors, mental health consumers, peers, ex-patients, suicide attempt survivors and suicide loss survivors. This is a book for advocates, allies, policy makers and mental health providers.
What is radical mental health?
K.U.: Radical medical mental health is too big of a concept to cover in one question, so we have an entire book to explore it! Radical mental health means encouraging individuals to reach their own understanding of their experience instead of using an existing medical framework. It is about inclusion, diversity, social justice and challenging the biomedical model.
L.D.G.: Big question. There’s not a singular answer. The collection of stories, poems and essays in We’ve Been Too Patient all speak to answering it in their various ways. To me, radical mental health can be any one or more of the following, and probably more, or yet to be articulated, or something I’m missing. It:
- Can be anything that challenges and questions the damaging doctrine of the biomedical model and the mental health industrial complex
- Asserts the unique perspectives of the mad and neurodiverse
- Calls on us to be inclusive, non-judgmental and compassionate with those who struggle with their mental health, by ending stigma and questioning sanism
- Promotes mutual aid and collectivity over clinical healing spaces or works to bring those two together
- Promotes the mental well-being of people of color, queer and trans people, the disabled and other marginalized communities
What is the biomedical model of mental illness, and why is it problematic?
K.U.: When I first moved to California, I attended a peer-run conference by the Mental Health Association of San Francisco (MHASF). The director, at the time, told a sobering story of the dangers of the biomedical model of mental illness. He shared a that a couple years back, clinical researchers traveled to conduct research with a nomadic African tribe. One member of the tribe experienced altered states and heard voices and had hallucinations. His community widely accepted him as having spiritual gifts. However, the clinicians diagnosed him with schizophrenia and told the tribe leaders that he was sick and needed treatment. When the researchers caught up with the tribe months later, they noticed the gentleman they had diagnosed was gone. When they asked where he was, the tribe leaders said you told us he was sick, and we are a nomadic tribe and in our culture if someone is sick they will slow us down and we must leave them behind. They left him. This was a person who was accepted in their community and then “received help” and now was left to die because of some western ideas of “illness” and “health.” I’ll never forget this story.
The biomedical model of mental illness doesn’t take in account race, culture, environment, spirituality or identity. The biomedical model assesses the condition and focuses more on treating an illness and modifying brain chemistry with medication. The treatment of illness is emphasized over the promotion of health, because the belief is that health is the absence of the disease. This is problematic, because if you are treating an illness you are not working with a person and you are not integrating the person in their care.
L.D.G.: The biomedical model says that mental health struggle (or what some choose to call mental illness) is a disease of the brain due to “chemical imbalances” or even genetic predetermination. If we ascribe human suffering to a biomedical explanation, we miss the environmental factors that include trauma, and trauma is often, though not always, a social and political experience of oppression. Even when it isn’t, our inability to treat people humanely due to their trauma is a social and political problem. Further, the rise of the biomedical model coincides with the expansion of Big Pharma, and this is no coincidence. This is not to say We’ve Been Too Patient argues against medication or is anti-psychiatry; rather, we are looking for new frameworks that treat the whole person and even the whole of society. Medication can be a useful tool, and it is important to underscore that many other tools are needed for wellness.
In what ways are mental health issues also social justice issues?
K.U.: Our collective history as those who have lived experience of mental health issues is one steeped in trauma. People labeled as having a “mental illness” have faced serious discriminatory treatment by others. We have been subjected to a variety of “treatments” like isolation, warehousing, exploitation for labor or entertainment, abuse and neglect, medical experimentation, sterilization and loss of legal protections. Personally, I’ve lost my job for disclosing when I was struggling with a mental health issue. There is a power in this history, and these issues are social justice issues.
L.D.G.: There are many ways in which mental health issues intersect with other forms of oppression. Trauma is not always the result of social and political oppression, but it often is. People’s mental health is greatly impacted by discrimination and assault rooted in racism, sexism, homophobia and transphobia—from microaggressions to macroaggressions and violence.
K.U.: We also don’t talk enough about how the lack of access to quality and affordable mental health care that is recovery-based and trauma-informed is a social justice issue. Racism, sexism and oppression impacts our mental health and causes distress. A lot of communities have faced intergenerational trauma and haven’t been included in the conversations about healing. For many people of color, mental health issues and trauma may manifest differently and far too many of us receive mental health treatment in jails, which comes with another host of challenges and discrimination and barriers. This is a big question, and this is just a small sample of the social justice issues.
There’s power in reclaiming one’s own narrative. Can you speak to this in relation to the format of your book, and your own experiences?
L.D.G.: As someone who’s been writing all my life, I know that narrative is incredibly healing. Conceiving of your life as a hero’s journey is something many can relate to and be inspired by—it’s in Hollywood blockbusters! In superhero movies, I love it. In a lot of Hollywood movies about mental illness, not so much. The biomedical model is a narrative: you “exhibited systems,” you “got the help you needed from a professional,” you “got on the right medication,” you “accepted reluctantly your genetic difference/chemical imbalance” and “swallowed your pride along with the pills.” Often the implicit message there is to not expect too much of yourself, which is really damaging.
For me, and for many of our contributors, an untold part of this story is the harm done by the system that was supposed to support you. But it’s also more nuanced than that. I do accept that, for now, medication is part of what helps me, but I see it as a tool that manages my moods, not as a chemical my brain was “missing” because of a genetic deficit. And “the right professional help” can be part of the story, but all too often, therapists disappoint, too, or even harm. That’s part of the reason it’s so important to have a rich social network and many sources of mutual aid, as well as tools of wellness and recovery, which includes, for me, writing and sharing my story through many outlets.
K.U.: I’ve been writing since I was very small, and when I became a reporter I fell in love with hearing other people’s stories. Reclaiming my voice was a very powerful part of my healing. Telling and owning my story helped me to release the burden of old secrets, internalized stigma and self-judgement. Instead, I set on a path from victim to survivor to advocate. For this book, we wanted to hear people’s stories and have them share parts of their soulful journey to promote empathy and dispel myths. Honoring someone else’s pain and experience can be healing for that person and we as the audience gain so much insight, which is truly a gift. There is an intense desire to just pour salve on the wound and heal it, but everyone’s wounds look and feel different. What works for me, doesn’t work for L.D. We share these diverse stories because they also contain diverse solutions. Solutions that drive us to the larger point that person-centered individualized connection and care can help undo some of the challenges of a one-size fits all approach.
L.D.G.: We wanted to foreground personal stories. That is the majority of our book, because not only do people need to listen to us, but writing and having others witness our stories can be incredibly healing. The personal is political, and as performance artist Carmelita Tropicana said, the most personal is the most universal. These specifically rendered, vulnerable stories humanize us and our contributors, which is perhaps the most important thing we can be doing in this book.
How can we overcome stigma in marginalized communities, including people of color, queer and trans* communities? What changes in the mental health system do people in these communities need?
K.U.: Stigma of mental health remains a huge barrier to overcome, especially within marginalized and oppressed communities of color. While there are many things that communities of color share, each has a unique way of dealing with mental health and trauma. The mental health system needs to include people from diverse communities as gatekeepers and educators to help us understand what works for them in terms of healing.
We also need to be asking more about what challenges or issues they are facing collectively. Where do they go for healing? For example, if people are more likely to seek support from their spiritual communities, can we partner with those faith-based leaders to integrate mental health support or give referrals to peer-support groups? In some cultures, being associated with a “mental illness” is not only damaging to the individual, but it can impact their entire family and make them outcasts in their society. This is why the recovery model is imperative: someone doesn’t have to be “sick” to seek wellness. Recovery can include practices like meditation, which can help someone cope during difficult times, but doesn’t carry the same stigma.
When approaching diverse communities, we must also consider their cultural norms and historical experience with the mental health system. Overcoming stigma needs to be a true partnership with these marginalized groups, one focused more on inclusion and direction from those communities about what they need. Hiring more diverse mental health providers from these communities of color and the LGBT+ communities is a good first step, but thinking deeper, it might make sense for mental health systems to financially incentivize folks. Lastly, collectively the mental health system has a lot to learn about intersectionality, as many communities of color also belong to several other communities and face more nuanced challenges of exclusion or erasure.
L.D.G.: As a white person, I’ll step aside and not try to speak to stigma in POC communities. I would like to name, though, that it is really important to highlight the experience of queer and trans* people of color (QTPOC), and also acknowledge that everyone’s experience is different.
Our anthology includes folks from various backgrounds and identities, and listening to these stories is the most important thing to do when asking these questions—and that is going to bring the most meaningful change.
Being a queer and genderqueer person with lived experience of mental health struggles myself, I can speak to both how my gender, sexuality and mental health are all separate experiences, and how there are intersections. Trans* competency for mental health care workers, including therapists, is a huge issue that needs to be addressed. In the San Francisco Bay Area, where I live, there are many therapists who are skilled in this area but that’s not true everywhere.
We also need more trans* and gender non-conforming therapists, especially QTPOC therapists, and we need more curriculum and training for other therapists by these populations. Of course, many people still pathologize and demonize queer or LGBTQ+ identities. Conversion therapy is still a terrible reality. And the DSM-5 still codifies “gender identity disorder,” although that issue is complex, since many who want gender affirming surgery and/or hormone therapy can get health insurance to cover these if they are classified as having this “disorder.” Uruguay, on the other hand, pays for gender affirming surgery and hormone therapy! We could have policies like this, and be free to abandon this highly problematic and stigmatizing “disorder” from the DSM-5.