When asked about my job, I usually say something about researching global mental health. If I’m talking to psychiatrists and psychologists their response is often to tell me something that ends with ‘but you know what it is like to treat people with schizophrenia’. And I think, and sometimes say, ‘no, I don’t.’ Instead, I know what it is like to live with and love people who have schizophrenia diagnoses – because that’s my grandma, and my uncle and my friends.

 

When I was a kid, my grandma, who wore blouses with gold buttons, clip-on earrings, and who had a special voice for the phone, one day told us that the next-door neighbours were inserting recording devices that read our minds through the wall. I curled up behind the big box where the Christmas decorations were kept, listening to my Grandma cry with the fear of being called ‘mad’, because that meant being carried away to the asylum in a van by men in white coats.

 

She was wrong.

 

They didn’t carry her away – we took her in the car.

 

She was diagnosed with Schizophrenia. Psychiatrisation is etched into my and your life in ways that are felt differently at different moments. A ‘family history of schizophrenia’ is written into the maternity notes of the baby I am carrying.

 

The unborn are already marked.

 

This publication made me think a lot about Audre Lorde – about there being no such thing as a single-issue struggle because we don’t live single-issue lives. It made me think about the threading together of multiple forms of oppression with kinds of distress that often come to be spoken about as mental health issues.

 

In 2018, I went to a super shiny Ministerial summit on global mental health, where Conservative Members of Parliament positioned the UK as a global leader in mental health. The event was held in County Hall – just over the river from Westminster, where governmental decisions to cut welfare, and sanction already impoverished disabled welfare claimants has so detrimentally impacted people’s mental health and led to multiple instances of suicide.

 

As Eleanor Lisney and Sisters of Frieda similarly point out, in 2016, the UN found that the Government’s austerity policies had enacted ‘grave’ and ‘systematic violations of the rights of persons with disabilities’. The Summit didn’t go without critique, with both the National Survivor and User Network (NSUN) and Shaping our Lives producing open letters with multiple signatories raising a multitude of concerns about the Summit; from lack of involvement of people with lived experiences in its organisation to the problematic exporting of institutionally racist and medicalised models of mental health care worldwide.

 

I have spent many years being friends with, and working alongside, people who identify as service users – as people with lived experience of distress, as psychiatric survivors, as people with psychosocial disabilities, and as ‘Mad’ folk. These are not different ways of saying the same thing – they signify sometimes very different identities and perspectives rooted in very different experiences of distress, mental health and contact (or not) with services and professionals.

 

For many, over-medicalisation is a concern – easy access to diagnosis and drugs as first-line treatments. Yet diagnoses do not always mean access to other forms of support – austerity-driven cuts in the UK have meant many folks experiencing crisis are turned away. Diagnoses can also be used against people to deny their reasoning and competency. Yet at the same time, the distress and pain of some folks, especially people of colour and even more specifically women of colour, is often not listened to or taken seriously. For others, especially black men in the UK, their distress is often responded to at the hard end of services – compulsory detention under the Mental Health Act (1983); forced medication; incarceration; and referral through the criminal justice system. Medicalisation, then, looks very different for different groups.

 

Sanism is a ‘system of discrimination and oppression’ that marginalises ‘mad’ ways of knowing and underpins epistemic injustice in the devaluation of some people’s stories and experiences (Leblanc and Kinsella, 2016, p. 61) The Mad People of Colour Manifesto by Rachel Gorman, Annu Saini, Louise Tam, Onyinyechukwu Udegbe & Onar Usar was written by a self-identified ‘group of queer, mad people of colour’ whose experiences as ‘survivors, patients, ex-patients, or inmates’ are diverse, yet cannot be separated from wider experiences of racialisation, madness, and other oppressions.

 

The Mad People of Colour Manifesto articulates the difficult truth that sanism isn’t something that only happens to white folks and that the ‘racism, sexism and oppression circulating in the system are also circulating in the mad movement’. I have attended many events and exhibitions where white histories of mental health user, survivor and ‘Mad’ activism are documented without once mentioning the word ‘white’, and often completing overlooking or erasing the multiple her-stories of activism and knowledge production of Mad people of colour. Survivor researchers, Crepaz-Keay and Kalathil (2013), illustrate that much can be learned from projects that centre experiences of distressed and/or mad identified people of colour, yet often stories of distress and madness are commodified and sold by big mental health charities as recovery narratives to be consumed at a distance – the distance of looking back retrospectively from a place where things are supposedly ‘better’ (Costa et al. 2012).

 

Many of the stories told in this publication show the threading together of the personal with the political – how stories create connections between our experiences of the world and the multiple injustices people experience. These stories speak of pain, yes, but also, as discussed by Eleanor Lisney and Sisters of Frieda, of the systematic marginalisation of disabled women; how black and brown women’s pain is ‘underestimated and undertreated’, and how academia and the arts bruise and inflict pain – how, for many disabled folks, they constitute ‘contact sports’, as Serena Katt says in their piece on the work of Khairani Barokka.

 

Vilissa Thompson, also in this volume, speaks too of the systematic devaluation of those deemed ‘unproductive’ (where productivity means certain kinds of paid work only) and therefore ‘ill’. Yet currently health is defined through productivity; many disabled folks are found ‘fit to work’; universities can deem certain students ‘unfit to study’ (requiring mandatory leave), and often our recovery is defined through and measured by work.

 

We shouldn’t forget here that most distress and impairment around the world is socially produced – the product of structures – and that the historical and contemporary production of debility and of disabling conditions (of hostile environments) is often highly profitable. The Work Capability Assessments carried out on disabled folks in the UK are contracted out privately, as is the running of Immigration Removal Centres.

 

Huge biotech companies, such as Syngenta, whose aggressive agribusiness models and seed-patenting practices have impoverished and immiserated hundreds of thousands of farmers in South Asia – leading many to suicide – are the same companies that sponsor the World Health Organization’s World Suicide Prevention efforts.

 

The accounts, experiences, imagery, keywords, guiding questions of this publication, thus provide a jumping-off point, space for us to think with Audre Lorde – with whom I began – to create new patterns for relating across difference.