Madness Made Me: A Memoir

Citation

Liz Sayce (2015), "Madness Made Me: A Memoir", Mental Health and Social Inclusion, Vol. 19 No. 2, pp. 98-101. https://doi.org/10.1108/MHSI-03-2015-0007

Under the guise of a memoir – and a great one at that – this books offers a re-conceptualisation of madness and a fresh discussion of how everyone – people going through madness, mental health staff, wider society – could respond to it. It is, I think, the most important survivor text since Judi Chamberlin’s (1988) On Our Own, published in the USA in 1977. When I first read On Our Own, when (happily) Mind published it in the UK in 1988, I was excited by the clarity and lack of compromise in its arguments: it critiqued the “accessible” community services that progressives were fighting for, because they just replicated the same power imbalances of the institutions; it challenged the common campaigns for more resources for services, when those services were coercive and oppressive. And it proposed alternatives.

Madness Made Me is similarly radical, for a different era; it cuts through the rock of conventional views about madness, as Mary herself puts it. It changes the terms of debate. Yet it is written with such fluency and humanity that the quiet persistence of its arguments flows through its stories and discussions; it may “cut” but paradoxically it does so without sharpness of tone. It is all the more compelling for that.

There are many accounts of the experience of madness. Hornstein (2012), for instance, has assembled over 600 first person accounts of madness in English, dating from 1,436 to the present. Some simply use description to invite the reader to witness the experience, or argue for psychological rather than biological understandings (as Hornstein herself does) (or vice versa) or issue a plea for liberty. Hornstein recounts the sheer ingenuity of people in institutions in getting their stories and challenges to incarceration read by the people they chose – and not seized by others. In 1919 the dancer Nijinsky wrote an account of his madness in Russian, so his Hungarian wife could not read it and destroy his words; in 1895 Agnes Richter sewed her story into her jacket, so it could not so easily be taken from her.

But few have, like Judi Chamberlin and Mary O’Hagan, drawn on personal experience to write deep reflections on madness, its meanings and implications for society. Just as Chamberlin transcended the discussion of “hospital” vs “community care” services – and talked instead about abuse of power in both – so O’Hagan (1996) transcends discussion of “biological” and “psychological” causes and remedies: these are, to her, just two sides of the same coin, both intent on pathologising madness and exercising futile attempts to get rid of it (p. 116).

“All the other psychiatrists and nurses say I’ve got a biological imbalance that I need to correct with pills. Felicity is saying I’ve got deep personality problems and I need to undress my head in front of some wacko psychotherapist for years if I am ever to recover. What a choice!” (p. 84).

Madness Made Me starts by disrupting a whole series of possible explanations for her own experience of madness. “Maybe it started”, she writes […] followed by competing accounts, from the death of a baby to use of drugs, from not belonging at school to spiritual uncertainty, from under-performance as a Brownie to questioning sexuality. The effect of this disruptive device is to force the reader to question the easy answer, to complexify the whole idea of understanding an aberrant “cause” of one individual’s madness. “On the other hand”, Mary writes, “isn’t there enough awry in any human life to drive us all mad”? (p. 45).

Yet where Mary deploys narrative and metaphor to illuminate, she is met by a mental health system that is reductionist. “Trying to understand madness through biological psychiatry is like trying to understand the Mona Lisa’s smile by analysing the chemicals in the paint” (p. 114), she writes; and when told she has a “bio-chemical imbalance” she feels totally helpless – if it is genetic she can no more change it than the weather (p. 49). But her critique lands equally on non-biological understandings and prescriptions. She satirises an intellectual vacuum underpinning the range of remedies on offer – the day hospital professionals “whose path to salvation for lost souls like me consists of group therapy, walks in the park, rug-making and Friday afternoon lectures devoted to the new virtues of expressing your inner feelings, blaming your mother and asserting your needs” (p. 75).

Her descriptions of having her own narrative “colonised” in mental health services are a vital reminder that exercise of power is not just about obvious coercion (forced treatment, treatment that may become forced if you do not comply), but centrally about whose story – whose version of reality – prevails. After her own repeated mantra of “maybe it started […] ” she is met by a summative clinical narrative: “psychotic depression”. Her comparison of her own diaries and the clinical notes for the same days have been published before (O’Hagan, 1996): whereas Mary wrote of despair and fear, typical staff comments included “Flat, lacking motivation, sleep and appetite good. Discussed aetiology. Cont. Li Carb. 250 mg qd. Levels next time”.

This narrative “colonisation” interrupts the development of her own story:

My own stories of madness struggled to take shape while other people’s stories of it took instant inspiration from the dictionary, diagnostic manuals and a wider culture that completely shuns it (p. 46).

This reductionism seems to “reduce” not only the analysis – but the person, who is diminished in the process. O’Hagan captures brilliantly the disappointment on encountering a service that does not respect madness and its struggles.

“I think about all the broken heroes who end up like me, in places like this, seeking their redemption. There is no shortage of myths and legends about people in our kind of predicament – St George and the dragon, forty days in the wilderness, the despair of Job, survival in the trenches. I thought that the psychiatrists and nurses would feel compassion for my desperate struggle; that they would understand I am fighting the collapse of myself and my whole existence. I expected that they would guide me through my despair back into a universe rich with meaning. But I’m starting to realise the staff don’t see us reflected in those heroic stories. All they see in me is a sick, deluded, screwed up 21 year old who needs their control and containment” (p. 58).

Later she meets a cleaner who tells her she will get through it, as she is “pretty brave” – and wonders why the professionals could not say things like this. She takes apart the professional language of “inappropriate behaviour” and “insight”, subjecting these concepts to contextual analysis, concluding that many behaviours are “appropriate” when you are mad.

From the negativity of reductionist, pathologising (biological, psychological, etc.) understandings flow hope-depleting professional commentaries: you have a chronic condition, it will recur, you need to lower your horizons, full-time work is probably not an option, you need to think very carefully about having children in case they inherit it […].Thus are people started on their “careers” as mental patients, schooled in poverty, low status and loneliness (p. 71).

And from encountering these “reductions” comes a central reaction and realisation: that madness “is a profoundly disruptive and full human experience that deserves respect” (p. 7). Often people experiencing madness choose between two options: to deny madness, or to accept it along with all the low status and pessimism attached to it by society and mental health services. The third option – which Mary embraces – is to accept madness and value it. Madness, she writes, is about exploring the uncharted territory of human experience. Even the bad parts of it have value – like grief. It can add maturity, compassion, richness to life.

“My madness took me places I had never been. It showed me the universe without its clothes. It stripped my mind of all its chattels. It rubbed my nose in the divine. It turned the lights off all over the undulating continent of my brain. Many people pass through this territory at some time in their lives. Most manage to skirt their away around the edge of it and look on with dread at a distance. But those who are forced right into its belly come out with richer pictures of a being that has been lost and found again” (p.113).

The feeling amongst people experiencing madness that – despite its terrors – they would not choose to be without it is common. There is something about living through extremes that can feel unmissable. This is not about romanticising or airbrushing out pain – but saying even pain has value.

Peter Chadwick, a psychologist with personal experience of schizophrenia, has written about the blurring of boundaries between self and others, self and environment – and the empathy and spiritual awareness this can bring:

Schizophrenia, creativity and spiritual experience are all intimately connected […].Thinking in this way about the condition can help health professionals to realise that people with schizophrenia are kith and kin and that they have abilities that can be used to enhance the future of our world (Chadwick, 2002).

Kay Jamison, a professor of psychiatry who personally lives with manic depression (her preferred term), writes that whilst the depressions leave all things dark and devoid of feeling, the highs leave cocaine in the dust – with ideas and feelings like shooting stars and the power to captivate others a known certainty. If she had the choice to be without her condition she would opt to have it (Jamison, 1995).

Lady Gaga has spoken of how her extreme costumes are a way of expressing and dealing with her experience of hearing voices: it’s how I feel about my insanity, she says.

If mental health professionals are trying only to bring people out of madness, they risk going against the grain of many people’s own aspirations in relation to their madness. O’Hagan describes it like this:

Their madness had taken them to a foreign land where only mad people could go […]. Mental health professionals stood at the border trying to pull people out of the mad land, even those that wanted to stay […] but most of them had never been there. My peers showed me that the mad land, for all its perils, had some of the most enchanting scenery in the world. Like a land that has mountains and ravines, rivers and caves, blinding sun and swirling storms, the mad land could be a place of beauty as well as danger (p. 111).

Professionals did not recognise the strengths gained in dealing with the mad world; nor the way these strengths helped equip people for the next challenges.

But peers did. And this book conveys in no uncertain terms the qualitatively different discussions, and narratives, shared with peers than with mental health professionals. There is solidarity, compassion and laughter “as though lives with such over the top tragedies now qualify as comic farces” (p. 56). Some of the most hopeful moments in Mary’s times in hospital come through laughter and comradeship:

Glenda waddles up to me. “How’s this for a wholesome recreation hour?” She rounds her mouth and puts on a hoity-toity matron’s voice. “In today’s programme you will observe a bunch of drugged-out zombies walking around an enclosure with their dicks flopping out of their pyjama pants” […].We both snort with laughter. For a moment I feel alive again (p. 69).

Mary decides to go with the power and flow of her own madness:

My madness was like a boarder coming to live in my house who turned out to be a foreigner from an enemy country. […] Once I got to know the boarder he was no longer the stereotypical enemy but a complex character who deserved some respect. Even if I could not stop my madness I could change the way I viewed it and live with it instead of against it (p. 117).

Armed with this realisation Mary sets out on a new journey: setting up survivor advocacy, negotiating with the powers of mental health systems, learning how to engage in research and advocacy without replicating power imbalances (she did not want to do research that pinned the subjects like butterflies on the page). And at each stage she discusses the ethics, the power dynamics. She speaks up in conferences, she thinks deeply about how to address resistances, she challenges replication of power imbalances in survivor forums – for instance, peer-run services that still have “staff only” areas, reflecting deep absorption of the “them and us” cultures of the wider society. She takes her struggle both to the global stage and to the wider arena of human rights of people living with any disability; she learns of oppression of mad people across the world. And she sets out a vision for how life for mad people could be, with no forced treatment, with peer support, with respect and hope. She talks not just about the ideas, but about the ways it could be done.

She advocates going beyond reform of existing services or abolition – to creating a culture of madness, to value the experience: a paradigm shift – moving away from madness as something to be cured or fixed.

There are some highly topical elements to this analysis. The focus on power is central to any endeavour to increase social participation and citizenship of mad people: too often anti-stigma programmes do not engage sufficiently with the powers that drive every element of discrimination, from distinguishing between people, through ascribing lesser value to those who are “mad”, to separating people out and generating unequal life chances (Link and Phelan, 2001; Sayce, 2015). The practice, informed by theory, that Mary describes deals with power in all its stubborn entrenchment.

And the focus on transforming services – not fighting for more people to get help or to sustain existing provision – is highly relevant in an era when “austerity” policies have left some activists fighting to keep day centres and hospital beds: facilities that in more propitious times they wanted to tear down and replace with something better. Mary describes how the American Psychiatric Association tried to respond to survivor challenges to their biological approach by recognising that many people do not even get treatment – to which the response was “we’re the ones that did, and it sucks”. Her book is an important reminder that activists should be wary of getting sucked into preserving the status quo against cuts: but should keep the focus on the prize of a form of support that is based on wholly different principles and practices from most mental health services today.

Mary O’Hagan describes the moment when she finds Judi Chamberlin’s book On Our Own in a library and starts reading it. To her it is gold, a springboard for new thinking and direction. In the future, Mary’s own book is likely to be that springboard for many other people living with madness – and for those who have not been through it themselves, but are endeavouring to respect the experience of madness and offer new forms of support.