It was mental growing up

Talking to oneself was well known to be the first sign of madness. Mrs Baker was pale and distracted all the time. Her two little girls wore dirty clothes and had crusty nostrils. She would slide into the shop murmuring to herself, like humming a song without a tune. The adults shunned her so we did too. One day I stood near her at the counter and Clem said, full of warmth, “Hello Christine, how are you? You can pay later you know if you need food for the girls.”

Surprised, I realised Mrs Baker had a name and it could be used, just like with normal people. I also became aware of the decency and kindness behind the grocer’s white coat and gold rimmed spectacles.

Mum used to talk to herself and we worried a lot about it, fearing that she was turning into a lunatic. She held interminable conversations with my absent father, hardly bothering to lower her voice, as if sound could not travel beyond the kitchen door. On laundry days the twin tub would be wheeled out and her monologue would rise and fall with the filling of water and the rhythmic agitation of the washer, rising to an accusatory crescendo as the spin cycle reached its peak.

We would listen breathless at the door, willing her to stop, wanting her to be normal. Yet she showed no other signs of madness, save from occasional dire warnings that she was en route to the nearest asylum – “You will drive me to Littlemore” or, more sinister, “At this rate I will end up in ruddy Rampton”.  “What’s that mum?” “A loony bin.” How we shuddered.

Teresa and I took a morbid interest in the mad people who congregated at Gloucester Green, the bus station in Oxford. In the smoky high ceilinged café the lonely people endlessly stirred their tea, staring, fiddling, occasionally laughing very loud. Muttering at the slops in her teacup the loony lady took out her orange lipstick and, without a mirror, smudged an oval in the vicinity of her mouth. Waiting near Carfax for the bus home we would be entertained by the flamboyant Joyce, a man we knew to be queer, though whether that was exactly the same as loopy we were not sure. Waving the ends of his chiffon scarf with theatrical gestures, he would perform for the queue until the bus appeared, then move on.

Adults talked in their special whispers about someone having a nervous breakdown and we understood that once this event had happened you would never be the same again and you would always make people sigh. Meanwhile Gran would refer derisively to people she had known years ago, “He wasn’t right in the head” or “She was doolallytap.”

Bats in the belfry, one slice short of a loaf – thus I was educated in problems of the mind. But the euphemisms did not conceal or dilute what grown ups were referring to and we had yet to arrive at the more knowing and equally distasteful abuse of words like paranoid, autistic, or psycho in everyday speech.

After we moved to the town we noticed a mad man in the neighbourhood. It was impossible not to see him as he walked ponderously up and down our street all day most days, generally smoking, often licking his lips salaciously and occasionally speaking. Once or twice when I met him he barred the pavement, stuck his hands deep in his pocket and pulled his trousers up as far as they could go. As he leered and thrust his pelvis towards me I felt disgust and pity, but curiously no fear.

Emboldened by incidents like this, one day I stopped to talk to the mad man and asked how he was. He told me he was having difficulty in sleeping because the car factory down the road was plugged into his brain and using the night shift to suck out all his thoughts. “They don’t care you see, but it’s very troubling and it’s upsetting me. What do you think I should do?”

That was a conundrum I could not answer; nothing in my life thus far had prepared me for that question, although a year or two earlier I had known a boyfriend’s mother who was properly mental. She was fragile, disconnected and lived in a private world. Sometimes she told stories of dark cruelty – how as a young woman nurses had pinned her down with their knees on her chest, strapping her to the gurney for the joyride to ECT. This, she was quite sure, was what had caused her subsequently to develop breast cancer. Netty would walk around her neighbourhood in many layers of ill-assorted clothing, buying large amounts of provisions she did not need and could not afford, often occasioning her husband or sons to return the goods with embarrassed apologies.

Was this a nervous breakdown? I could not tell, but I knew tragedy when I saw it and it was written on that family with indelible ink, penning the words of despair, shame, misery, guilt.

If poor Netty was an obvious nut, my father seemed to the outside world to be just an ordinary bloke, always whistling a catchy tune and ready with a smile. I decided he was a psychopath, a plausible, violent deceiver with no conscience. In pursuit of understanding and with the blessing of my very sympathetic psychology tutor I abandoned for a while the analysis of how children learn for the darker investigation of psychopathology. It got me nowhere. My dad was not mad, he was just bad. He did have a conscience, but had practised self deception for so long he did not have easy access to it.

My father had such a wretchedly low self esteem, such a lack of optimism and agency that his volcanic rage at the injustice of life infected us all with nascent insanity. It took decades for mine to surface and I struggle to live with it still.

 

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When cancer was mental

Pain. Fear. Death.

At the beginning of conferences and events my colleague and I used to ask the audience to think of the first word that came into their heads when they heard the word “cancer”. The result hardly varied from the three words above; the audience was inevitably made up of health professionals. This was in the 1990s, not so long ago, but a time when cancer was surrounded by misinformation, ignorance and fear. Just like mental health today, cancer was stigmatised. At the Health and Care Innovation Expo 2014 we considered the question Is the term ‘Mental Health’ doing more harm than good and what can we do about it? Surprisingly the audience view was that the fear and prejudice that create stigma are prevalent among health professionals and the consensus was that these are the people we should tackle first.

During a period of massive change in cancer awareness and care there was a similar finding. We encountered oncology doctors and nurses who never said the word cancer to the person with the disease, nor to their families. Imprecise language was preferred, words like “growth” or “tumour” or “lesion” and underlying this avoidance was a fear of naming the thing that horrified. People with terminal cancer were not always told their prognosis, apparently to protect them, which was at best paternalistic, but in reality to protect the professionals in their fear of their own mortality. Cancer after all will occur in one in every three of us in our lifetime. In our training programmes we made further discoveries. Mature, experienced health professionals held beliefs that were based on folk myths, misunderstanding of biology and a parochial complacency about lifestyle.

Some of the victim blaming persists to this day but back then we were more shocked to learn that a nurse, for example, could hold the belief that breast cancer was causedby being knocked on the breast earlier in life — say in a playground injury. Or that if a surgeon cut a tumour in the wrong place, the cancer would go wild, proliferating at an even greater speed, like some body-devouring parasite. Many people at that time believed that cancer could be brought on by negative thinking and the tragic corrollary of this was that some people died believing they just hadn’t been positive enough to heal themselves.

While it may be too contrived to draw exact parallels between cancer as it was widely understood then and mental health (or illness) as perceived now, there are important similarities nevertheless and lessons to be learned. The situation for people with cancer improved considerably in the 1990s and has continued into this century. Changing attitudes and challenging stigma were the necessary pre-requisite for service improvement in a country that lagged seriously behind our European neighbours on survival and recovery. The Europe Against Cancer programme launched in 1985 with the ambitious goal to reduce the expected number of deaths due to cancer by 15% by 2000. It was implemented across member states through a partnership approach with scientific experts, cancer charities and anti-smoking groups, health media, health professionals and national civil servants.

In England a better informed workforce with a more aware and less fearful public meant service transformation had to follow and it did. When my own cancer was diagnosed in 2005 I was able both to speak about it openly and to benefit from cutting edge treatment and an optimistic prognosis, none of which would have been assured fifteen years earlier.

Attitudes to cancer may still have a way to go — I for one would like never to read again that someone …… “lost the battle with cancer”. We are no more at war with cancer than with psychosis or OCD. But I imagine it is much less common now than it was twenty years ago, for someone with a diagnosis of cancer to find friends and neighbours crossing the street to avoid them. Can we say the same of someone with schizophrenia? If we are serious about eradicating the stigma of mental illness let’s learn the lessons from what has gone before. Think global, set ambitious targets, work in partnership and understand that change is incremental – and it comes from the people.

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VCS workforce infogram

VCS Workforce 2 (2)

Source: UK Voluntary Sector Workforce Almanac 2013

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Income generation in the voluntary and community sector

infograph 1

Infogram©CernisLimited

Source: UK Voluntary Sector Workforce Almanac 2013

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An Irishman Abroad

I have already blogged about An Irishman Abroad on “Letters to Australia”, which is where I communicate with my son, who is living in Brisbane.

For anyone interested in the Irish diaspora and the experience of rural poverty it should be worth a read. You can choose between my academic article published in the AB Yearbook, and/or a slideshow with my stepfather actually speaking.

Let me know what you think. I am planning to follow it with an analysis of my birth parents’ childhood narratives – poverty in wartime and post-war England, in one case rural, the other urban. Eventually I would like to draw comparisons between them.

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Caixa Forum

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Barcelona 2013

This year the annual Auto/Biography summer conference was held at the Caixa Forum in Barcelona, a perfect setting in which I was so absorbed by the superlative quality of the presentations that it was like a kind of meditation or mind cleansing. In other conferences I tend to let my mind wander during many of the papers and in fact have some of my best ideas while sitting anonymously in a large audience. But in AB Barcelona I gave myself up to the moment, drinking in the ideas and sort of allowing them to find their own connections on my neural pathways, without too much direction from my conscious self.

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