Links about madness, trauma & recovery that won’t be on the first page of a Google search.
These links are not balanced and they do not represent the most common websites you’ll find about mental health on the internet. The fact is, stories about chemical imbalance, and the usefulness of medications, and ‘helpful’ lists about symptoms are everywhere. If you want to read that stuff, just go to Google and search for ‘mental health’.
I’ve intentionally sourced links that share a different story. Hope, new ways of thinking, a focus on human rights and choice, and real stories from real people. These links are mostly challenging, political and, I think, brilliant.
Survivors who inspire me
Rufus May. Rufus is a world-leading psychologist in the UK, who has a lived experience of being diagnosed with schizophrenia in his youth. I was lucky enough to have Rufus visit me one time I was an involuntary patient in the psych ward. Rufus showed extraordinary compassion, not just to me, but also to my voice. His approach showed me a new way to make sense of my distress and begin down a path of a new, compassionate relationship with my voice. Thank you Rufus.
Ron Coleman and Karen Taylor. Ron and Karen are a dynamic duo of recovery. Ron’s story is truly inspiring, and I am proud to count both of these people as friends. Their wisdom during times of crises has been life changing for me. Ron and Karen work with voices and have been leaders in the international hearing voices movement. They also work with recovery, with trauma, and more recently they have run recovery houses. Ron’s books are amazing.
Eleanor Longden. Dr Eleanor Longden is a world leading academic, speaker and psychologist in the fields of trauma, psychosis and dissociation. She survived a diagnosis of schizophrenia at the age of 18, and the hearing voices approach was a key part of her journey. Her TED talk has been viewed over 3 million times and has helped to change the way people think about hearing voices, and highlighted the role of trauma in psychosis.
Rachel Waddingham. Rachel Waddingham is a powerhouse of hope and creative thinking about mental health. She led The Voice Collective in London, and has amazing insights into hearing voices, unusual beliefs and loads more.
Shery Mead. Peer work is the fastest growing discipline in mental health. Those of us with lived experience of madness and recovery can bring unique perspectives in support roles. Shery Mead’s model of peer support, called ‘Intentional Peer Support’, is a world recognised and trauma informed approach.
Merinda Epstein. Merinda is one of the eldersof the Australian consumer movement, and has been fighting for reform for over two decades. Her writing and her cartoons are powerful critiques of the mental health system, but also show us other ways. She has been a strong advocate for the issues we face when diagnosed with ‘borderline personality disorder’ and also campaigns for trauma informed practice. You can also check out Merinda’s work at Our Consumer Place.
Mary O’Hagan. Mary was involved with starting the survivor movement in New Zealand. She’s advised the United Nations and been a mental health commissioner. Mary promotes peer work, consumer leadership and new ways of thinking about madness & compulsory treatment. Her recent book, Madness Made Me, is a tour de force.
Jacqui Dillon. Jacqui is a trainer, speaker, researcher, lecture and advocate for those of us who survive trauma and madness. She is a powerful advocate for women, for new ways of thinking about madness, the too-often unspoken truths about childhood abuse – and for recognising that ‘the personal is political’. Jacqui helped me to stop comparing my own trauma to others, and she seeded in me the idea of finding and pursuing my survivor mission.
The consumer/survivor/ex patient movement & organisations
The Icarus Project: From the Icarus website: ‘We are a support network and media project by and for people who experience the world in ways that are often diagnosed as mental illness. We envision a new culture that allows the space and freedom for exploring different states of being, and recognizes that breakdown can be the entrance to breakthrough.’.
Icarus is a creative space with some amazing resources and ideas about recovery, coming off medication and thinking differently. (US).
National Empowerment Centre: The National Empowerment Centre’s purpose says ‘we want people who are mental health consumers/survivors/expatients to know there is a place to turn to in order to receive the information they might need in order to regain control over their lives and the resources that affect their lives. That place is the National Empowerment Center.’.
The National Empowerment Center has loads of articles, stories, alternative resources and links to other organisations. (US).
MindFreedom: Mindfreedom are activists for human rights in the mental health system. They offer alternative ways of thinking, and they stand against involuntary treatment. Their site has human rights resources, personal stories, campaign information and lots more. (US).
Our Consumer Place. Shared space for mad politics, articles, and really innovative and powerful resources. Lots of local links and info for consumers. (Australia)
Check out these Our Consumer Place publications…
World Network of Users and Survivors of Psychiatry. WNUSP is an international organization of users and survivors of psychiatry that advocates for human rights of users and survivors, speaks internationally for users and survivors, promotes the user/survivor movement in every nation around the globe and links user/survivor organizations and individuals throughout the world.
Presenting the consumer/survivor/expatient movement‘
Madness Radio. Explores ‘madness’ from beyond conventional perspectives and mainstream treatments, featuring survivors, authors, advocates, professionals, and artists.
Living with unusual beliefs or alternative realities
The medical approach to mental health often talks about ‘delusional’ thinking, like paranoia. Delusions are considered symptoms of ‘psychosis’, and often diagnosed as ‘schizophrenia’. The survivor perspective often takes a different view. It talks about unusual or different beliefs or alternative realities. It takes the view that our beliefs, no matter how different they might be, are a part of us. They are meaningful and it can be harmful when the mental health system tries to deny or change our beliefs, rather than accept and work with them. Many consumer/survivor/expatient initiatives and resources that explore ways to reduce our distress by learning to understand and live with unusual beliefs, rather than denying them or trying to get rid of them.
Accepting Alternative Realities – Dr Rufus May
Reflecting on my own experience of alternative realities as well as my experience as a psychologist helping others, I will consider how we best assist people experiencing other worlds of reality we find hard to relate to.
National Paranoia Network: (UK) Approaches to living with unusual and alternative beliefs. Includes coping strategies, and ideas from others who lives with unusual beliefs.
Don’t Confront? Don’t Collude?
A brilliant short film by Rachel Waddingham that questions the way mental health practitioners think about ‘delusions’ and more helpful ways of working with us:
Intervoice is the international hearing voices network that aims to spread positive and hopeful messages about the experience of hearing voices.
A practical guide to coping with voices. Developed by Intervoice, the world hearing voices network.
The Power of the Narrative.
Peter Bullimore talks about hearing voices and what has been helpful for him. He also addresses the role of trauma in hearing voices.
Working with voices.
Ron Coleman and Paul Baker talk with an audience about working with voices. This video is one of 5 parts. To view all five videos, go to YouTube and search for ‘working with voices eugene 2010′.
Compassion for voices.
A film about the compassionate approach to relating with voices, with potential for use as a therapeutic, educational, and de-stigmatising tool.
The experience of hearing voices.
Louisa Dent Pearce talks about her own experience of hearing voices, how this has changed over time by connecting with her emotions, and the important role of hearing voices groups in her recovery.
Living mindfully with hearing voices.
Once a patient himself, psychologist Rufus May tells about his work using Mindfulness, a Buddhist meditation practice, to help his clients accept and transform the ‘voices’ they hear.
Hearing voices TV campaign.
These TV ads, featuring voice hearers, were run in Western Australia. They show real voice hearers talking about their experience and what helps.
Hearing voices for children and young people.
A beautiful animated short film by a group of young people who hear voices. They talk about what it’s like, and particularly address feeling excluded by friends who don’t understand.
The doctor who hears voices.
An extraordinary, powerful film that follows Rufus May working with a young doctor who has started hearing voices.
The voices in my head.
Eleanor Longden talks about hearing voices, trauma, and her journey to recovery: despite having been told she never could.
Living with Voices: 50 Stories of Recovery. Absolutely amazing, inspiring and really helpful book by Marius Romme, Sandra Escher, Jacqui Dillon, Dirk Corstens & Mervyn Morris.
Trauma and madness
The personal is political
In this lecture Jacqui talks about how the personal is political, and draws connections between experiences of trauma, madness, and the broader social and political context.
Mental Health Coordinating Council: Trauma-Informed Care and Practice
Nowhere to be safe: Women’s experiences of mixed-sex psychiatric wards. A study by Victorian women and mental health network, 2007, showing appalling rates of violence and abuse of women within psychiatric services in Victoria, Australia.
ASCA: Adults Surviving Child Abuse
8 Keys to Safe Trauma Recovery
Babette Rothschild talks about how we can support ourselves to recover from trauma, and to avoid some of the worst pitfalls of trauma recovery.
Some great books about trauma and madness
Trauma and Recovery. A groundbreaking exploration of trauma by Judith Herman.
8 Keys to safe trauma recovery. Take charge strategies to empower your healing. By Babette Rothschild.
The Courage to Heal: A Guide for Women Survivors of Child Sexual Abuse. By Ellen Bass and Laura Davis.
Engaging Women in Trauma-Informed Peer Support: A Guidebook. Free online book for peer workers who work with women survivors of trauma.
I Thought It Was Just Me: Women Reclaiming Power and Courage in a Culture of Shame. By Brene Brown.
Reclaiming our Lives: A workbook for males who have experienced sexual abuse. By Jim Campbell and Ron Coleman.
Some useful research about trauma and madness
Bentall, R.P.l, Wickham, S., Shevlin, M., and Varese, F. (2012). Do Specific Early-Life Adversities Lead to Specific Symptoms of Psychosis? A Study from the 2007 The Adult Psychiatric Morbidity Survey. Schizophrenia Bulletin.
Goodman, L.A., Salyers, M.P., Mueser, K.T., Rosenberg, S.D., Swartz, M., Essock, S.M., Osher, F.C., Butterfield, M.I., and Swanson, J. (2001). Recent victimization in women and men with severe mental illness: prevalence and correlates. Journal of traumatic stress, 14:4, 615:632.
National Center on Domestic Violence, Trauma and Mental Health (2014). Current Evidence: Intimate Partner Violence, Trauma-Related Mental Health Conditions & Chronic Illness.
National Center on Domestic Violence, Trauma and Mental Health (2011). Prevalence of intimate partner violence and other lifetime trauma among women seen in mental health settings.
National Executive Training Institute (NETI). (2005). Training curriculum for reduction of seclusion and restraint. Draft curriculum manual. Alexandria, VA: National Association of State Mental Health Program Directors (NASMHPD), National Technical Assistance Center for State Mental Health Planning (NTAC).
Read, J., Fink, P.J., Rudegeair, T., Felitti, V., and Whitfield, C.L. (2008). Child Maltreatment and Psychosis: A Return to a Genuinely Integrated Bio-Psycho-Social Model. Clinical Schizophrenia & Related Psychoses.
Read. J., Hammersley, P., and Rudegeair, T. (2007). Why, when and how to ask about childhood abuse. Advances in Psychiatric Treatment, 13, 101-110.
Medication & Electro Convulsive Therapy (ECT)
The Harm Reduction Guide to Coming Off Psychiatric Drugs. If you’re thinking about reducing or coming off your meds, this is a really comprehensive guide to thinking through all the impacts and includes advice for how to minimise any harm.
Listen to Will Hall speak about the harm reduction guide to coming off psychiatric medication:
Join global leaders in the critical psychiatry movement for a one-day conference which will address an urgent public health issue: the harm caused by the over-prescription of psychiatric medications.
Peter Breggin MD: How Do Psychiatric Drugs Really Work?
Psychiatrist Peter R. Breggin, MD in the second of his series: Simple Truths About Psychiatry: How Do Psychiatric Drugs Really Work? Further information may be found on Dr. Breggin’s website and in his many books, including his latest: “Psychiatric Drug Withdrawal: A Guide for Prescribers, Therapists, Patients and Their Families.” See more at his website http://www.breggin.com
The effectiveness of ECT: A literature review. By John Read and Richard Bentall, 2010.
Depression, psychiatry and the use of ECT. Dr Pat Bracken, in Asylum Magazine.
RxISK. RxISK is the first free, independent website where patients, doctors, and pharmacists can research prescription drugs and easily report a drug side effect — identifying problems and possible solutions earlier than is currently happening. – See more at: http://wp.rxisk.org/about/#sthash.cCabxcHq.dpuf
The Bonkers Institute for Nearly Genuine Research. If all this serious stuff is starting to depress you, check out the Bonkers Institute. They’re like the Ponds Institute, only more beautiful.
Psychiatry’s Grand Confession. Myths about supposed ‘chemical imbalances’ causing ‘mental illness’. The psychiatric profession has finally come clean and confessed on a national media outlet that there is no evidence to support the Serotonin Theory of Depression. Today, on NPR’s Morning Edition there is a segment about the chemical imbalance theory, and virtually all the psychiatrists who are interviewed acknowledge that the there was never any evidence in support of the idea that low serotonin causes depression. But then, amazingly, they go on to say that it is perfectly fine to tell patients that serotonin imbalance causes depression even though they know this isn’t the case.
Healing Schizophrenia: Using medication wisely. Great book by John Watkins.
Human rights and madness
Issues with Australia’s compliance with human rights
A report by the United Nations with their concluding observations on Australia’s compliance with the international Convention on the Rights of Persons with Disabilities. Australia was found to be non-compliant in a range of areas related to mental health, including restrictive practice, safety in hospitals, involuntary treatment and mental health acts.
Center for the Human Rights of Users and Survivors of Psychiatry
The Center for the Human Rights of Users and Survivors of Psychiatry (CHRUSP) provides strategic leadership in human rights advocacy, implementation and monitoring relevant to people experiencing (or labeled with) madness, mental health problems or trauma. In particular, CHRUSP works for full legal capacity for all, an end to forced drugging, forced electroshock and psychiatric incarceration, and for support that respects individual integrity and free will.
Tina Minkowitz on Mad law and human rights
Tina Minkowitz is president and founder of the Center for the Human Rights of Users and Survivors of Psychiatry. She is a lawyer as well as a survivor activist, and represented the World Network of Users and Survivors of Psychiatry in the drafting and negotiation of the Convention on the Rights of Persons with Disabilities (CRPD) .
A recovery challenge from Ron Coleman & Karen Taylor
Ron talks about recovery and he challenges the lack of hope we often see in mental health systems. He also talks about voices as a messenger that we need to listen to, rather than get rid of. Karen reflects on real things we can think, say and do that make recovery real.
Recovery and the conspiracy of hope Enduring talk about recovery and the imperative of hope, by consumer leader Pat Deegan.
The CHIME processes of recovery
This now seminal paper brings together many other research studies which asked consumers/survivors/expatients what recovery means to us. The result was CHIME: Connectedness, Hope, Identity, Meaning and Recovery. The paper is called Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis, by Leamy, Bird, Le Boutillier, Williams, and Slade.
What the consumer movement says about recovery. An indepth article by Melbourne consumer activist and thinker, Alan Pinches.
Allies & partners in the consumer/survivor/expatient movement
Increasing, we consumers/survivors/expatients are finding allies within mental health systems. Many mental health professionals now challenge existing paradigms in mental health, and care about promoting human rights. Some of these groups are just for professionals, and some work in partnership with consumers. These are some ally groups that are well worth checking out:
Asylum Associates and Asylum Magazine. This project grew out of the antipsychiatry movement and is a partnership of survivors and professionals that has been running since 1986.
The Critical Psychiatry Network Read blogs and articles from a network of psychiatrists who are critical of existing, primarilly biochemical approaches to mental health
Mad in America An international network of writers and thinkers that are rethinking psychiatric care. This site has loads of great articles.
Schizophrenia does not exist. A Netherlands online initiative to ban the term ‘schizophrenia’ as a form of social injustice, and to speak and work in new ways.
Psychiatry beyond the current paradigm
Written by many authors, this opnion article comes from within psychiatry to challenge itself to work in radical new ways. By Pat Bracken, Philip Thomas, Sami Timimi, Eia Asen, Graham Behr, Carl Beuster, Seth Bhunnoo, Ivor Browne, Navjyoat Chhina, Duncan Double, Simon Downer, Chris Evans, Suman Fernando, Malcolm R. Garland, William Hopkins, Rhodri Huws, Bob Johnson, Brian Martindale, Hugh Middleton, Daniel Moldavsky, Joanna Moncrieff, Simon Mullins, Julia Nelki, Matteo Pizzo, James Rodger, Marcellino Smyth, Derek Summerfield, Jeremy Wallace, David Yeomans