It was a real pleasure and privilege to be invited to write for Mad in America. Partly because, like anyone with a shred of sense and (in)sanity, I am a great admirer and believer in Robert Whitaker’s work: epitomizing, as it does, George Orwell’s observation that “In a time of universal deceit, telling the truth is a revolutionary act.” But also because of the MiA community itself. As a relative newcomer to the site, I was immediately struck by the vibrancy, fellowship, and solidarity between individuals with differing views but a shared cause.
Community is a valuable concept for me, because the essence of my own madness was betrayal and isolation. Similarly, for many of us, the main crucibles for madness (loss, discrimination, abuse, or other injustices) are enacted on a silent, shameful, and lonesome stage. Social bonds, in contrast, foster the sense of reconnection, reclamation, and emancipation that are so important for recovery (Herman, 1992).
It was that sense of kinship and convergence – of shared perspective and shared beliefs – that fortified and sustained me when I was asked to present about my experience of voice hearing at the TED 2013 conference. In the run-up to the event, and constantly afterwards, people would ask, “How can you bear the pressure of doing a TED talk?!” A quick scan through the attendee list showed that, amongst 1,700+ other audience members, were Ben Affleck, Cameron Diaz, Bill Gates, Al Gore, Matt Groening, and Goldie Hawn. In my own session, amongst other brilliant individuals, was Vint Cerf, widely credited as a ‘founding father’ of the Internet. And there was me, a mad woman from Yorkshire! But it was the knowledge of all those others out there, “the rebels and renegades, truth-tellers, pioneers and freedom fighters” as Jacqui Dillon (2010) puts it, “all walking along the same path … seeking the same kind of justice” – that stayed with me and helped ensure I didn’t falter.
At the end of my talk June Cohen, one of the conference’s wonderful co-hosts, came onto the stage and asked me, with a respectful interest, whether I still hear voices. For a split second I hesitated, wondering whether to play it down with an airy “oh, not all that much now.” Instead I opted for the truth: “All the time,” I said cheerfully, “In fact I heard them while I did the talk – they were reminding me what to say!”
In the words of the British activist Peter Bullimore, “I’m a voice hearer, but more than that I’m proud to be a voice hearer – because I’ve reclaimed my experience.” And it’s the healing power of a community that’s enabled me to feel this way, particularly that which is embodied by the International Hearing Voices Movement (see ‘The Voices Others Cannot Hear’). Representing this critical, empowered perspective at TED really was a case of standing on the shoulders of giants, because I’ve been so fortunate to encounter an assemblage of extraordinary people – far too numerous to name – who have inspired, guided, educated, and encouraged me in both my personal and professional journey.
This includes, but is not limited to, courageous family members/carers who tirelessly fight alongside their loved ones, the heroic and dedicated clinicians prepared to challenge an established system, and revolutionary academics seeking and proclaiming the truth, no matter how unpalatable their contemporaries might find it. And, of course, fellow survivors: those who have been victimized and demoralized beyond endurance, but who have nevertheless negotiated their way out of the blackness and emerged, triumphant and phoenix-like, with a spirit, awareness, and energy that gives others the inspiration to do the same. It was the fusion of these alliances and perspectives that enabled me to stand on the TED stage and talk about the delirious, frenzied depths and exhilarating rewards of my voice hearing voyage; not as an ex-psychiatric patient with a ‘Bad Brain,’ but as a proud and maddened survivor.
The communication opportunities made possible by the internet means it’s easier than ever before to seek out a healing community: a listening ear, a space to be, a place in which to speak truth to power. Communities that acknowledge our right to own our experiences and make sense of them in our own way; our right to freedom, dignity, justice, respect, and a voice that can be heard. The Amnesty International founder Peter Benenson observed that it’s “Better to light even a little candle than to curse the darkness” and over the years these little candles are flickering ever brighter, all over the world, illuminating the massive flaws and injustices in a system that blames and denies, protects the powerful, and pathologizes the survivor. And, equally, the light from these candles are blending together to forge a social and psychiatric response to mental health crises that promote genuine healing and growth (however the person in crisis might choose to define it).
There is still a long way to go, many more obstacles to overcome, many more untruths to expose and misconceptions to challenge. But I believe, without doubt or reservation, that it’s happening. And it is empowered and empowering communities that have made it happen, and will continue to energize and sustain that change: the impetus to change the world! In The Impossible Will Take a Little While: A Citizen’s Guide to Hope in Time of Fear, Paul Rogat Loeb states that “Those who make us believe that anything’s possible and fire our imagination over the long haul, are often the ones who have survived the bleakest of circumstances. The men and women who have every reason to despair, but don’t, may have the most to teach us, not only about how to hold true to our beliefs, but about how such a life can bring about seemingly impossible social change.” Increasingly, these are no longer battles that we are condemned to fight alone. Rather the growing strength and solidarity of our communities show the doubters and deniers that, for all their opposition and resistance, it’s too late: the revolution is already taking place.
So, as a final thought… Robert Whitaker, Jacqui Dillon, and John Read for TED 2014. Viva la revolution!
Eleanor Longden’s talk is available to view on TED.com. The accompanying e-book ‘Learning From the Voices in my Head’ can be purchased via Amazon.com, Apple’s iBookstore, Barnes and Noble online, and the TED Books app for iPhone and iPad.
Dillon, J. (2010). The tale of an ordinary little girl. Psychosis: Psychological, Social and Integrative Approaches, 2(1), 79-83.
Herman, J. L. (1992). Trauma and Recovery: The Aftermath of Violence – From Domestic Abuse to Political Terror. New York, NY: Basic Books.
Of further interest:
A first-class recovery: From hopeless case to graduate (The Independent)
How to Live with Voice Hearing (Scientific American)
Living with Voices inside Your Head (Scientific American)