WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

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Fatso Gets Militant!

Wednesday, 17 October 2012

News from Survivor History

If you read this you'll need tissues to hand.

I met someone today (Joshua Castellino) who was talking
enthusiastically about an Irish survivor poet and campaigner, John
McCarthy. Joshua talked about John's enthusiasm and the way he would
start public speeches with his mad hat on. (Obviously a pal of Mike
Lawson!). Joshua thought I should contact John for some history, but
when I searched the Irish newspaper archives I found only obituaries.
This one moved me, and I thought I would share it. It is from the
Irish Examiner 13.1.2012


It should carry a "weepy warning"!

John McCarthy´s love of life should be an inspiration to us all

By Matt Cooper

Friday, January 13, 2012

YEARS ago one of my best friends told me that "all people are mad,
it´s just a question of degree". It has stuck with me ever since.
What is "normal"? What is "mad"? Is one better or worse? Who decides?

John McCarthy, who died this week at the age of just 61, as a result
of motor neuron disease, brought the issue info focus for me many
times in recent years. It was about five years ago when he first got
in touch with a producer on The Last Word and persuaded my colleague
that he would be a guest worth having on the programme. I was told
that a self-declared madman wanted to come on the programme, to talk
about his experiences, how they should be applied to others and how
people with mental health issues should be treated by others in

As it happened I was interested, if only because I had grown up on
the Lee Road in Cork, in the shadow of the since long closed Our
Lady´s Hospital, a psychiatric institution that as good as
incarcerated many of its patients. Some, however, were given "day
release" and would wander along the road daily. Some were in a near
comatose state, clearly drugged before release, or possibly worse as
a result of electro-convulsive treatments (ECT). Others were hyper-
active, talking gibberish. Sometimes, unfortunately and very sadly,
there were occasions when patients took themselves down to the
riverbank and threw themselves into the river; with other people
rarely present to rescue them they didn´t survive.

I thought I recognised John McCarthy when he first arrived into our
Dublin studio, not from the Lee Road, but from around the streets of
Cork city. His appearance was distinctive. He had long grey hair,
tied in a pony-tail. He bounced into the room. He was full of chat
and passionate delivery. He described himself as mad. This was
nothing to be ashamed of - he was proud of what he was. Hence the
"Mad Pride" organisation he founded. McCarthy wanted to embrace life,
not wallow in the misery and despair of it.

He told me his story on air a number of times, although he preferred
to emphasise the positives, the way he had come to regard his health
as something to be celebrated rather than endured. I had to press him
on how he had come to be regarded as mad (and two of the interviews
that I conducted with him in the last year are available on the
todayfm website and as podcasts that can be downloaded). His story
was that he had lost his good mental health during his late 30s and
early 40s when financial problems arising from his business
undermined him, almost costing him his family´s home and his
business. It was the loss of self-confidence that dragged him into
depression and sucked the life out of him. "I lost control of my
emotional self," he explained to me. "Life got too much for me and I
broke down."

He told me of the feelings of isolation and of loneliness, how he
couldn´t face challenges and suffered panic attacks, even when it
came to relatively mundane family issues. "I absolutely totally
collapsed," he said. As far as he was concerned his depression was
caused by anger, but he became very aggressive with it as he failed
to cope with his situation. He lost his self-respect and was
unwilling to accept the love his family offered or to listen to them.
He was abusive and disrespectful, he said. "You can´t accept love
because you don´t have a proper love for myself," he told me. "I
never had self-respect. I worried about how others thought of me. I
worried about the opinion of others."

In another interview, the last I had with him, late last year, when
he came into studio in his wheelchair, pushed by his son, to discuss
his last campaign - to understand and combat loneliness - he
remembered how when he was at his loneliest as a 19 year old in
London, "going to my room after a day on the building sites and being
on my own when surrounded by 8 million people". John´s points about
the cause of his breakdown were interesting because he regarded his
mental health as being a response to the life situations that he
found himself in, rather than as the result of some kind of chemical
imbalance in his brain. "Madness is a disease of the spirit, mind and
soul (not of the brain). It cannot be cured with a pill," he said.

And that was central to the campaign he waged in later years against
the medicated response into which he felt he was forced, wrongly. He
had nearly a decade on heavy medication that he felt made things even
worse for him during that period. He claimed to have been "over-
medicated, over-drugged to an enormous extent". As far as he was
concerned it was all about making him "compliant", which he said was
equated with being "cured". He told me how "I shuffled when I
walked...you don´t wash or clean, you lose dignity. Your hands slump
by your side..." He spoke of being left in a zombie state. As he
described it the people of my childhood, as they walked up and down
the Lee Road, came very much back to mind.

He took himself off the drugs and suffered nine months of withdrawal.
"These drugs are more addictive than heroin."

John decided that he would face what he calls "the challenge of
life", that he would embrace "the gift of madness". He decided that
he was living through depression, not suffering from it. He decided
to reconcile himself with the "normality" of his madness. "You have
to be mad to live life because madness is about emotion," he said.
Most importantly, he came to disregard his need to seek the approval
of others.

This led to an interesting situation. It put him into conflict with
the medical profession, yet members of it were supportive of elements
of what he tried to do, especially in trying to change the language
used in public discourse about the condition. Once John took me to
task for saying that he "suffered" from depression: he was living
with it he said and I needed to change my language. Professor Harry
Kennedy of the Central Mental Hospital praised John very much for his
positive approach to challenging prejudice and stigma but they did
disagree about the circumstances of the use of medication and the
benefits it brought.

This was something that I failed to tease out properly with John
despite repeated attempts, the difference between what he saw as
madness caused by depression about life and that which may be caused
by chemical imbalances or illness, which he tended to dismiss. There
would be seem to be plenty of evidence to suggest that some people do
suffer because of issues beyond their control and that they can be a
physical danger to themselves and to others: embracing the positives
of life may not be a cure for them. Just because John always
expressed his point of view passionately and with conviction does not
mean he was always right, just as times when he bucked convention
seemed to be correct.

In the end John succumbed to a cruel illness. He embraced whatever
medical help was available to him for that but nothing could be done
once motor neuron disease embraced him. The last time John and I
spoke he told me that death was coming at him "at a rate of knots." I
asked him how he was coping with that knowledge. "In death I´ll miss
life, I love life," he said, choking somewhat as he said. While that
comment filled me with sadness it was also inspirational. A man who
went through so much of the difficult part of life could still love
it and value it, as should we all.

The Last Word with Matt Cooper is broadcast on 100-102 Today FM,
Monday to Friday, 4.30pm to 7pm.

End of obituary

Do any of our Irish members (or others) know of John? I will enter
his life on the timeline.

Best wishes, Andrew

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The Tough Tenor (when I could walk)!

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