The Shame of Ireland
Posted on 12/01/2012
by Deirdre O'Shaughnessy
Cork was saddened this week by the death of colourful mental health campaigner John McCarthy at the age of 61.
The founder of mental health organisation Mad Pride Ireland, John McCarthy had written a column, 'The Human Condition', in the Cork Independent since 2009, and his writing touched a nerve with many of the newspaper's readers.
In August, he wrote movingly of his Motor Neurone disease and facing the prospect of death in a column which was later broadcast on Newstalk.
John McCarthy grew up in Shandon on Cork's Northside and trained as a plasterer, before going into business as a publican, and auctioneer. He carried out voluntary work in Kosovo and later Uganda, and was a board member of aid agency Concern for a number of years.
John often attended the Listowel Writers' Festival and was a keen writer of poetry.
He founded the organisation Mad Pride in recent years, campaigning for the abolition of forced Electro-Convulsive Therapy, and advocating human rights for those with what he called "the normality of madness".
He ran in the General Election of 2007 on a mental health platform, commanding media attention that belied his eventual performance in the polls, although he later admitted he didn't know whether he was more nervous of winning no votes, or of getting elected.
John contributed to the Mary Raftery documentary 'Behind the Walls', as well as producing an award winning radio documentary, 'Lives Less Lived' about the institutionalisation of one woman, 'Josie', in the Irish mental health system. He was also credited with a major contribution to the Cork Independent's being named Headline Regional Newspaper of the Year in 2011 for reporting on mental health.
John wrote extensively about his own mental health and the campaign for greater transparency and compassion in the mental health system for the Cork Independent and other publications. He had recently been appointed to the Implementation Group for the National Disability Strategy by Minister Kathleen Lynch, who paid tribute to him:
"John McCarthy was a truly inspirational man who was a long time campaigner for mental health reform. In recognition of his work and contribution, I recently appointed him to the Implementation Group for the National Disability Strategy and I was very much looking forward to working with him.
"I regret that I will not now have that opportunity as people with the drive, determination and infectious enthusiasm that John had are exactly what is needed to bring about meaningful change. Any time I met John, I always came away with a smile and a laugh and I will miss him, both personally and professionally.”
Motor Neurone Disease
In recent months John's struggle with Motor Neurone Disease made headlines nationally and he spoke on RTÉ and Newstalk about the prospect of facing death and the comfort he found in his wife and family.
He brought great awareness to the struggle of those facing the illness, but always maintained that mental illness was worse suffering.
He wrote, in a column published last August:
"Having spiritual disquiet; depression is the most crippling method of destroying a human being. Pain in the body can be handled so much easier than pain in the spirit.
"I will take the last few years I have with creeping paralysis, but with my spirit growing, rather than 20 years with depression and my spirit dying. I have been there, that place of self isolation.
"That was truly awful."
John McCarthy will be remembered at a Humanist ceremony at Val O'Connor's funeral home on Shandon Street, today at 11am, with burial afterwards at Curraghkippane Cemetery. Read his final column, 'Bereavement', on page 26.
Dr Pat Bracken, Consultant Psychiatrist, West Cork Mental Health Services
"I am still trying to imagine the world without John Mc. I was privileged to get to know him as a friend and colleague in recent years. I didn’t agree with everything he did or said but I developed a deep respect for his energy, commitment and humanity.
"John was one of those people who made you think. He was challenging and radical and some times a pain in the ass. But nothing changes without people like John and his, self-declared, mission was to be a pain in the ass. The other side of John was that he was funny and fun to be with. He was irreverent and had a healthy dislike for the great and the good. "He had a love of people with all their oddities and celebrated the differences that make us all interesting. Mad Pride has been a fantastic achievement, one of the most important developments in mental health in Ireland in recent years. He will be a huge loss but let us celebrate what he gave us."
Gerry Kelly, Cork Pops Orchestra:
"I will miss my pal John McCarthy. My deepest sympathy to his amazing wife Liz and children David and Jill.
John was a man who 'played the hand he was dealt'. Mad Pride Ireland is a tribute to his tenacity.
"The words 'no' and 'can't' were words he could not hear! I will always feel him standing beside me. To those who soldiered with John on his many campaigns I salute you and for those for whom John campaigned be hopeful, he will always be with us."
Evelyn Grant, Cork Music Works:
"Words or sentences can't describe the richness that John brought to our lives. So much passion about social justice; so much laughter; so much hearty discussion and slagging; so bright and loving; so infuriating; always so alive and involved. I really wish that more areas of public life in Ireland had such advocates as John was for mental health issues.
"We had so many great arguments about mental health issues, politics, funding, academia and all the things that impacted on his campaigning. He loved to have his views challenged - and I loved our many sparring matches - because it sharpened his stubbornly-held views!
Most of all I will miss his outrageous sense of fun. What a privilege to have known John."
Dan Boyle, former Green Party Senator:
"I've described John McCarthy as a life force. Even with his passing that life force won't fade. I've have never known anyone who by force of personality alone brought about change through persistence, cajoling, and even embarrassment, but never without good humour. It has been a honour to share time and space with John."
PJ Coogan, 96FM & Cork Independent:
"There were many sides to John McCarthy. There was John, the tireless campaigner, John, the articulate and persuasive advocate, John, the effortlessly gifted writer, and John, the hilarious storyteller, poet, raconteur and lover of life.
"But for me, most importantly, there was John, the man who went from being just another name in my contact list, to being my friend. It was a joy to know him, and I will miss him very much. My heart goes out to Liz, David, Jill and the grandchildren, and to his brothers - and his mother - still going strong in her 80s.
"Ní bheidh a leithéid ann arís."
Jonathan Healy, Newstalk & Cork Independent:
"Last year, when a friend of mine was organising the inaugural Cork ball in aid of the Irish Motor Neurone Disease Association, I was asked to help organise the speakers for the event.
"John McCarthy didn't pause before offering his help for the night, offering to read from the collection of articles he had written for this newspaper to those who had gathered. Even though I knew what to expect, John's oratory skill was quite breathtaking.
"Speaking from the wheelchair he hated but needed, he moved the audience from fits of laughter to silent tears in just a matter of moments. He held the room from his first to his final word.
"Here was John, the mental health campaigner, speaking to an audience of people who knew all too well how his own personal story was going to end. John bore motor neurone disease - an awful disease that robs its victims not of their mind, but of their body - with tremendous dignity.
"Even at our last chance meeting in December, it was obvious he was losing the battle - but none of his fight. He will be sadly missed, and my thoughts are with the family that he loved so much. RIP John Mc.
Jonathan O'Brien, TD, Sinn Féin:
"I first met John on the canvass trail during a General Election campaign. Unlike the norm during these election campaigns when two candidates bumped into each other he came across the road, shook my hand and wished me the best of luck.
"Ever since then I've admired John as an individual as well as a political campaigner. Nothing ever got him down, his outlook of life was one of hope and doing something proactive.
"John's commitment to raising awareness of mental health is well documented and he has been a tireless campaigner for those who find themselves marginalised in society.
"When my own father was diagnosed with MND I contacted John to have a chat with him as he was going through his own battle with MND. John helped me to come to terms with my father's illness and I'll never forget the friendship and support he gave me as I struggled to accept my own father's diagnosis.
"John will be missed but not forgotten."
Micheál Martin TD, Fianna Fáil leader:
"John had a great sense of community. He was a passionate activist for justice, equality and civic engagement. He handled his own diagnosis with motor neurone disease with dignity and bravery, and continued his work on behalf of those living with mental illness."
Frances O'Keeffe, Chairperson, Concern Worldwide:
“John McCarthy was a great friend of Concern, serving on our governing council for a number of years, working overseas as a volunteer in Kosovo in 1999 and as a very active member of Concern’s Cork support group.
"His last public engagement with Concern was in December when, wheelchair bound, he acted as master of ceremonies for the annual Carols by Candlelight concert, a role which he has fulfilled for a number of years. As always, his capacity to lead and enthuse meant that the event was a huge success. We offer our sincerest condolences to his family, friends and colleagues. We will miss John.”
An Insight into John McCarthy
Thursday, January 12, 2012
WHETHER you agreed with him or not, it is undeniable that John McCarthy, founder of the mental health lobby group Mad Pride, has put the state to shame by heightening public awareness of the issue of mental illness which, more often than not, has been swept under the carpet, and been the subject of a discredited form of enforced treatment in this country.
As with his friend, the late Mary Raftery, whose fearless brand of investigative journalism was celebrated in these columns yesterday, his passing also warrants public acknowledgement, especially for having turned the spotlight on the plight of people whose rights have been trampled under foot by successive administrations.
As a sufferer of mental illness, he knew precisely what he was talking about. Tragically, after overcoming that personal hurdle and having then survived a battle with cancer, he was diagnosed with motor neurone disease two years ago but approached that challenge characteristic good humour until his death earlier this week. He will be buried in Cork today.
As an outspoken and articulate advocate of the rights of those touched by mental illness, he saw the importance of celebrating what he termed "the normality of madness". Taking the first significant step towards achieving that seemingly strange objective, he organised the first annual Mad Pride festival three years ago, an event which has now been held in Cork, Tullamore and Portlaoise.
Those who may have scoffed at the apparent naiveté of such a crusade will doubtless feel humbled in the face of the outpouring of tributes to his personal courage and honesty in addressing such a highly sensitive topic in an open and straightforward manner that could give no offence. In so doing, he has shed new light on how the question of mental health should be addressed. He regarded the institutional response of forcing a ‘cure’ on sufferers of mental illness as a most damaging and abusive ethos that ought to be challenged and resisted. Regrettably, in that context, his appointment by Government to a group charged with implementing the National Disability Strategy came far too late to enable him apply his insights to the problems confronting those who live with mental illness.
There is no denying his effectiveness in bringing about a sea change in how mental illness is now viewed. This is in marked contrast with the sense of shame surrounding discussions of this kind in the past. To further advance this newfound feeling of openness, the incarceration of patients with mental illness behind the high walls and locked doors of state institutions should also be brought to an end.
By opening up debate on mental illness as something just as normal as any other ailment and which, therefore, should be discussed in that light, he has performed an extremely important public service.
At a time when suicide is on the increase in Ireland, there has never been a greater need for his brand of charismatic support, especially for those mired in financial difficulty including many at grave risk of being weighed down by depression.
MY HEALTH EXPERIENCE: Mad Pride founder on what he learned from ‘being mad’, relates JOHN McCARTHY
I AM MAD, a proud member of the mad community. Of course, madness exists – it’s normal, it’s as old as mankind, and it’s in every family. But if I have a disease in my brain called “mental illness”, I want the doctors to prove it. The brain is the most complicated organ in the body, yet doctors diagnose mental illness just by looking at you, and then you are labelled for life.
I’ve been diagnosed with unipolar depression, bipolar or manic depression, dysphoric elation – whatever that’s supposed to be – and paranoia. I’ve been told that I have a chemical imbalance in my brain that shows I have a mental illness. Yet not one of these fellows even took my pulse. They did it by sitting looking at me and talking to me.
I had a breakdown as a consequence of my dysfunctional childhood and because my business was collapsing – the banks were hounding me and I owed thousands. I was locked up for a year. I attempted suicide when I was on my heaviest dose of medication – a mixture of 10 different drugs a day.
There’s no such thing as a sudden breakdown: the madness was like the San Andreas Fault within me, lying dormant and buried. It was like an emotional stroke, a stroke of the spirit rather than the brain. But stroke victims can recover and they aren’t permanently labelled as disabled.
Our mental health laws allow two psychiatrists to sign a piece of paper and lock you up for the rest of your life because you’ve been diagnosed with a mental health problem. It’s based on nothing more than opinion, and that’s part of the cruelty of the mental health system in this country. You can be incarcerated and force treated against your will.
Why try to define madness? We should stop defining. We are all individuals with individual lives, and people react differently to different life situations. But the pharmaceutical industry, working with psychiatrists, tries to mass treat the individual, putting everyone in the same box.
Of course, madness has a downside. I hated it, but my hate was for myself really. I lost the ability to receive love. I was a complete pain in the arse, but my wife and family never stopped loving me. Yet you can learn from being mad. In fact, it was one of the most constructive learning experiences of my life.
I learned how to receive love with confidence. I have learned how to be at peace with who I am.
How do you learn to receive love? Well, if someone says you look well today, you say thank you. That’s the first step, but when I was in my negative side, that felt as hard as climbing Everest.
The Murphy and Ryan reports quite clearly showed that when you give power and authority to one section of the community over another abuse is bound to follow.
Mad Pride Ireland brings out the stories of people who have been abused under this system.
Society has bought into this idea that the mad community is dangerous and to be feared. The nuns got away with the same kind of thing for years with “loose women”; they took the problem part of the community away and buried them.
But we need to be free to ask awkward questions, to challenge the ethos of power and control. There is an aura of fear around psychiatric units. If you’re hopeless and helpless, you’ll be embraced and looked after. If you start asking questions, if you speak out with strength, they don’t want to know. When I started questioning things, I was offered more medication and told I was developing paranoia.
With every Mad Pride event we open up a public playground; there are no protests, no speeches. We scan everyone for normality – clowns use rubber chicken “normality detectors” to check people for signs of normality – and no-one has passed that test yet. We had 17,000 people at our event in Cork, all rocking to the music on a beautiful summer’s day.
It’s all about showing that madness is an everyday occurrence that affects everyone, and it can be dealt with in an open, loving way, with no fear. Now key people are beginning to listen to us. It shows what you can do with no money but a bit of goodwill.
Today I am lying here with motor neurone disease. I prefer the old name for it – creeping paralysis. You lose the use of your limbs, the ability to swallow, you end up incontinent. It’s a relentless disease. But there’s an honesty about the way neurology approaches it. Neurologists admit they don’t know the cause or cure for it.
They have done every test under the sun, I’ve undergone the deepest brain scan imaging in the country. But they admit they don’t know where it comes from and there is no fix, no treatment. Yet a psychiatrist can diagnose you just by looking at you.
I am happy for the psychiatric diagnoses I have had to be scientifically tested. I have a suggestion: I will put myself forward for psychiatrists to carry out any test they wish to do, in public, and I will publish the results. I’m dying, so I have nothing to lose.
But no-one is ever going to get a diagnosis of mental illness out of science: you will only ever get a diagnosis based on an assessment of behaviour. There is no science behind this disease, yet we have given the power of law to this guesswork. How are they getting away with this?