The language we use to describe our personal life experiences, challenges, and identities can reflect not only our perspective and worldview, but also indicate what change we are hoping for, if any. Some people describe their experiences using diagnostic terminology (such as “bipolar”), some prefer “consumer” or “service user”, or perhaps “disabled”, “psychiatric survivor”, “mad”, or “neurodiverse/divergent”. Despite these differences, people are often grouped together and presumed to be in a wider social change movement with a collective identity. There still remains no real consensus around the terminology of what we call ourselves or what others call us.
I believe there is not one movement but many, and the language people use reflects how accepting they are of the psychiatric explanation of their experiences. Perhaps, by not acknowledging this, it is impacting the potential for radical social change. The language we might use to describe ourselves or our experiences can, of course, change as we meet others with similar or different experiences. We might shift our language as we start to reframe our experiences as our worldview changes. This also means our connection to different social movements might change too.
Many people adopt psychiatric or diagnostic language and frame their experiences as being external to their identity. This is the perspective of having a “mental illness”, a problem they would like to fix or recover from, usually under the direction of clinicians. People who see themselves as having mental health conditions, disorders, disabilities, illnesses, and diseases view their experiences are something external to them so it can be treated and even cured. This narrative is key to the success of the psychiatric and pharmaceutical industries, which benefit greatly by being the conduit to that treatment.
Many hold this perspective because they are in desperate pain and need access to care, support, and treatment. The changes people with this view are seeking might actually be more psychiatry—more hospitals, more beds, more clinicians, and easier to access medication/mental health services. The problem is that this perspective barely recognises the significance of trauma, systematic inequalities, spirituality, intergenerational, socio-economic, political, environmental, or relational factors.
For some people, using terminology such as “service user” or “consumer” is preferable. This places their identity on having accessed or used mental health services. However, according to Judi Chamberlin, the term “consumer” was introduced by providers as a way of including people using services rather than being a term people chose for themselves. The adoption of the term in this context ignores the fact that consumers of services should have choices and rights.
Applying the term “consumer” to people who have been marginalised and oppressed whitewashes the reality of systemic abuse that takes place through coercion, restraint, and seclusion inflicted on people as a means of enforcing conformity. Someone who is involuntarily hospitalized and treated against their will is hardly a “consumer”.
When considering the social change that “consumers” or “service users” are looking for, they are often seeking their seat at the psychiatric table. Sometimes they might take up paid or voluntary roles as consultants or advisors within the psychiatric/mental health system. The change they want to see is involvement and representation within the current system and within the existing psychiatric paradigm often called “mental health”.
For many people, using disability language feels more relevant. This perspective is built around the social model of disability but still essentially frames their experiences around impairment. People identifying as having a disability are more likely to be seeking accommodations. They might argue that the current societal norms and discriminatory structures are creating barriers which are disabling for them. The social change they are seeking is the removal of these barriers so they can live a more equitable and fulfilling life, such as having access to suitable housing or fair treatment by employers.
Some activists believe the mental health service user and the disabled people’s movements should join forces. From a social movement perspective, this feels like it would be a more natural allyship as their shared goals might include increased/better access to psychiatric services, more and easier to access supports, mental health awareness, less discrimination, and perhaps even recognition of a social model of disability and equality.
People who believe their treatment was more harmful than helpful may prefer the term “psychiatric survivor”, which shifts the focus away from individualism and towards a human rights approach. This language brings a deliberate call to action and activism. As Chamberlin explained, the term “survivor” has connotations of strength as people have lived through an ordeal. The psychiatric user/survivor movement evolved out of the larger mental patient’s liberation movement and emphasized its strong opposition to human rights violations. Social change for the survivor movement focuses on a complete rejection of the dominant medical model.
People in severe emotional distress are often pathologized, diagnosed, and institutionalised rather than responded to with care, understanding, and compassion. The psychiatric user/survivor movement challenges the systemic injustices with psychiatry and calls for more humane alternatives to be made available.
The term “mad” has been reclaimed intentionally as a deliberate interruption or sabotage of the dominant psychiatric perspective. It challenges the entire basis of the medical framework which is that people have illnesses or disorders. Prior to the last 200 years in history, “madness” was a widely accepted term in society and was not a medical term. The reclamation of “mad” is a provocation to psychiatry as it is a complete rejection of their diagnostic expertise and power.
Mad activists seek acceptance within society of who they are, rather than being seen as a problem to be fixed or seeking inclusion within a broken system. Experiencing distress, however confusing that might be to others, is a human experience and should be responded to with compassion, love, curiosity, and empathy, not fear and stigmatization. Instead of jumping to conclusions that there is something wrong with the person, this could be viewed as a way of communicating pain, processing trauma, or being at a life crossroads where significant change in needed. This doesn’t mean no supports are needed; however, mad activists ask that human experiences are not pathologized or psychiatrized. Mutual aid and peer support might be ways of providing more meaningful supports than psychiatry in times of distress or overwhelm.
In 2010, researchers published a report about what “service users” thought about the way mental health and madness should be treated in society. The existing social model of disability, whilst preferable to the medical model, remains framed around the concept of “impairment”. An understanding of madness based on socio-political factors could be a helpful progression. This might include social, political, and environmental perspectives.
People who identify as mad want equity and to completely revolutionise how madness is viewed by society as well as advocating for human rights, ending coercive/abusive treatment and the pathologizing of human emotion.
For decades, we have been arbitrarily grouping people together with a collective identity as a social movement even though their perspectives are vastly different. For a social movement to be effective, there needs to be consideration of the costs and benefits that allyship and partnership with others might bring. The assumption of being one collective, cohesive movement is potentially slowing down social change, as the changes people seek are often in opposition.
The historic allyship between “mad” activists and the “mental illness” and “service user” movements might have come at a cost to establishing more effective partnerships with other radical movements who have a shared focus on global systemic change, equity, and a desire for social justice. A more focused and autonomous mad movement could gain more traction by working in partnership with other marginalised and radical social movements.
There are other movements also seeking liberation and acceptance, and radical systemic and societal movements could work more collaboratively. Mad scholars could adopt radical compassion and empathy towards other oppressed groups so new partnerships might form. This would enable us to work together to bring about significant systemic change even when our experiences of oppression are significantly different.
The more conservative mental health movements are advocating for minor changes for individuals or groups within the existing psychiatric paradigm. There is a wide acceptance of psychiatry and its damaging system of categorization and pathologizing, despite this leading to the disproportionate and repeated torture and abuse of people of colour, indigenous peoples, women, the working class, and people in the LGBTQ community.
I recall the words of the Mad People of Colour manifesto that this is not about the solidification of a collective mad identity but instead it is about solidarity with people who also have complex, ongoing experiences of legislative, institutional, and carceral oppression. There is a need for partnership with these movements and critical disciplines—for us to build on solidarity and radical compassion.
For the mad movement to gain traction to achieve radical, global, systemic change it is time to consider which other movements we want to work in partnership with. Will that be with other movements with shared goals and visions for complete systemic change? Or with those asking for “a less confining prison” (as Judi Chamberlin called it in 1978) or inclusion in an archaic and societally damaging system?
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.