Raising Our Voices at TED 2013

Eleanor Longden, PhD
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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.

 

References

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)

29 COMMENTS

  1. Hi Eleanor, welcome to Mad in America! My only fear in having you here, is that you substantially raise the standard for eloquence in blogging……

    My favorite quote from your recent interview in the Guardian – you also said something similar in your talk – was the following:

    “Probably the most important insight was when I realised that the most menacing, aggressive voices actually represented the parts of me that had been hurt the most – and as such, it was these voices that needed to be shown the greatest compassion and care. Which of course ultimately represented learning to show compassion, love, and acceptance towards myself.”

    It is so interesting that our modern mental health system focuses on suppressing or “getting rid of” the very parts of people that were most hurt. It should be no surprise that the result is typically just ongoing problems, ongoing “psychic civil war” to use your great metaphor.

    Anyway, welcome again to our community!

  2. Eleanor

    An inspiring and insightful presentation of your experience.

    Paraphrasing a very poignant part of your presentation. “It’s not what’s wrong with you but what happened to you.”

    As a counselor working in community mental health for 20 years and a critic of Biological Psychiatry, it’s not about labels or symptoms, IT IS ALL ABOUT THE NARRATIVE.

    If I cannot understand what someone is struggling with in their life and how it came to be, then I know I have not listened closely enough or asked the right questions. It is only when I have some understanding of the narrative that I can begin to join with someone in helping them solve problems.

    I look forward to reading more of your posts.

    Richard

  3. When you say the “toxic tormenting sense of hopelessness humiliation and despair about myself and my prospect” it was also something I guess I’ve been repressing feeling myself. I guess I had a basis for not worrying about my prospects. It was more, how would I survive, and what kind of pain would I go through. I had been involved with spiritualism (another kind of hearing voices) and… well, I knew I was an artist, a musician; and that was simply what I did. I had talked with the spirit of Mozart’s mother through at least three different mediums; until the social norms of spiritualism (and the egos of the mediums) itself became to confining for us, and too complicated. Being called crazy (when it had developed that far), only meant I didn’t have to worry about what people thought about me, and could go ahead and open up the channel of creativity regardless of what they said; since then, I’ve also learned to let go of looking for gratitude from others, rather than myself.

    But it’s not like I was never hurt by people’s phobic responses.

    There’s actual evidence that your mind when “psychotic” might be having an immune reaction which causes swelling, and this has to do with the same nerves you have in your gut; and the inability to process; or what happens when you’re under stress. Psychiatric medications only really cause more stress on the system. And psychiatric or quite often psychological diagnosis only disables a person from being given the right to let go of the stress. It’s usually that there’s something wrong with your behavior that you have to fix, rather than gaining insight into your behavior.

    But the utter helplessness of either thinking that there’s something wrong with me and I need to be fixed, or to give up; or simply not knowing: that’s an incredible bruised feeling. Especially coming out of a psychotic episode, where I’d become scared of my own behavior, didn’t know how to stop judging it, didn’t know how to understand it; and had this idea that life itself, almost, was against me.

    I think it’s exactly that which became the engine for all the years I couldn’t relate to what was going on, and only became more stressed and more fearful; and also at times more hopeful, actually: as the process unfolded itself. Because I started to see that there wasn’t anything wrong with me, It wasn’t a loss to not be part of the system; and there’s wasn’t any abandonment going on from life towards me; but there’s this quietness that remains beyond the worlds grasp, which emerged. And isn’t imprisoned by it’s “logic.”

    What an honor to have you writing, blogging at MIA. And to see and hear your alive vibrant compassionate message on the Internet. And really, I mean that. The one other person I heard give a talk which gave me the same feeling of compassionate communication, that told me things I knew I needed to hear, and did it in a genuinely vibrant way, communicating it with the positive friendliness of being human rather than spilling out doom. That was Naomi Klein…..

    Thank you so much for this beautiful talk you gave, and the lilt, the happiness to show you dare to be yourself…..and it’s worth it to make yourself vulnerable and be human.

    And I completely love the freedom you embody to express yourself, how you don’t inhibit the mind; but by being positive and making yourself vulnerable give it the flow it needs to be as much a part of life as the song of the birds – something we think is external rather than an internal (eternal) reminder of life’s joy…..

  4. Nice talk. This will help people. It’s good to have you here.

    I have my misgivings about the ‘hearing voices movement’ but it’s clear to me that many people find this interpretation of their experiences helpful, it’s certainly not something to be ignored and certainly something I follow with interest.

  5. Eleanor,

    This is a great TedTalk, Congratulations! I’m wondering if you have faced any challenges with your speeches when mentioning the fact that you came off medication?

    I’d love to know how you handle that question (or critique) when it arises.

    Alexa

  6. Hi Eleanor, you just arrived in my Yahoo inbox – an email from TED titled “Learning from the voices in my head”.

    Here’s what I learned last night (which was this morning), from the inside of MY head, while falling asleep (altered brain wave and frequency and vibrational energy).

    I hear and see in my Mind. It’s normal. Sort of. I suspect, and believe, that there *is* some human created, computerized, High Technology going on – in addition to NORMAL psychic functioning.

    “You have a metal rod in your head” (not my thought). Then I saw a camera and bright light. Then I saw a flash image of a man holding a microphone-like communication device. He said, “Seinfeld”.

    Really? Is it hilarious to have remote computerized access to my Mind?

    And don’t tell me it isn’t possible, because it is and I can prove it.

    Telemetry and Telechir. Synthetic Telepathy. And electronic monitoring. The same technology (now, Highly Evolved) as “invisible fences” for dogs (which, a form of this electronic “fencing” or “monitoring” was used on Charles Manson in prison, and I can prove that, too).

    About two months ago, I had an electronically engineered conversation on the phone. Beeps that got my attention, and prompts that were “telepathic”.

    This may seem like “rambling” but I don’t care.

    A man’s voice outside just got my attention. I looked to see a white car, pulled over, directly in front of my house. The words on the vehicle are “On Target”. The vehicle has a blinking yellow light on the roof. Hmm. Interesting. Well, he got in his car and left. It is secured now, in my Memory, and I will not forget the “On Target” car – and, I swear I remember it from a past life (which is ETERNAL life, which means we’re RELIVING previous life-cycles, with only slight variations. It’s sort of like a movie).

    Here’s Telechir
    http://encyclopedia2.thefreedictionary.com/telechir

    Here’s Telemetry
    http://www.thefreedictionary.com/telemetry

    Welcome to the world of HIGHLY ADVANCED TECHNOLOGIES.

    I believe psych drugs are facilitators of these remote neural technologies.

    I don’t know if I should feel stupid or smart, but I’d caution against anyone throwing “crazy”, “nuts” or other verbally abusive terms in my face – cuz I have a ghetto gene and I can verbally slaughter, too … if I need to.

    The Mind is ATMOSPHERIC and there’s a MESH between the Human Mind and Technology, whether people want to acknowledge it or not.

    Consider My Voice raised, too.

      • Well, this is ENORMOUSLY complex.

        First of all, these technologies were not available in the 1700’s (for those who might be automatically dismissive and attempt to use conditions from that time period as an “argument”).

        There are REAL PSYCHIC “phenomenon” and experiences
        There are REAL SPIRITUAL “phenomenon” and experiences
        There are REAL *current* TECHNOLOGY experiences

        Then, there are all the symptoms and “effects” from abuse, trauma, improper diets, lack of education / information, environmental and cosmological influences, etc..

        VERY, VERY complex. Some of us are dealing with A MULTITUDE of things – all at once.

        I believe there IS electromagnetic neurotoxicity.

        LOTS of things involved.

        I read the link. Makes me think of “gang stalking” tactics and how brutally manipulative they can be on a “targeted individual”. BRUTAL. And yeah, there’s (beep) a reality to it.

        Oh yeah! Then, there’s “aliens” (one of my very favorite subjects) and whatever interactions are happening there. Because I think there is Human technology and AL technology.

      • kenw111,

        http://youtu.be/K9ekQ0thHp0

        see Top Comment

        ” wakeupyt 1 month ago

        With all the troll coming out, I think Potter is hitting a home run with his information. You know you are on target when they come after you.  I would not blame Potter if he closed the comment section below his videos.”

        BAM. Instant “trigger” (for me) – because of the car I saw today with the words “On Target”.

        Found this guy via REIGNZ (God music)

  7. Eleanor, I think it’s really sad you have to even address “medications.”
    That’s an amazing statement to say that one should be warned not to use them as a permanent substitute for coping with stress. Not to make a toss at bliss, like one learns in Sufism; but there’s of course a difference between a chemically induced oblivion and bliss, nirvana – in case someone would want to just avoid dealing with stress. Not that you were even saying that psychiatric drugs could do this; I’m just saying something to point out what kind of an insult to a swamp it becomes to address THAT issue (heh swamps have a function too other than to be sold as real estate in Florida).

    “DO YOU WANT TO JUST LEAVE YOUR STRESS BEHIND, NOT EVEN HAVE TO THINK ABOUT COPING WITH IT: TRY fill-in-the-blank-drug AND YOU’ll FIND BLISS” (commercial with dancing dervishes)

    One wouldn’t want to make a toss at bliss… maybe take a toss at the blah blah blah, or use a cup and pour water over it….

    Don’t you have to experience what’s beyond all of this blah blah blah…

    *!?*

    It’s amazing to see someone that actually has been there get a degree in psychology….

    And survived….

    https://www.youtube.com/watch?v=Yk_gJXfGoKw&fmt=18

    bless you…