Tag Archives: empowerment

John McCarthy 1950-2012

12 Jan


 This week I learned of the passing of a great friend, and absolute pillar of strength and humanity in the mental health movement.

John McCarthy was an Irishman on a mission, a man possessed, a man who described himself as a lifelong salesman. When he became mad, as he described it, this successful businessman and raconteur lost a lot, and gained other things. He lost his mind for a while, and lost his liberty whilst detained in hospital. But he gained insight, and the love he showed his family and then the wider ‘mad’ community across the world grew.

John campaigned tirelessly for better human rights for people with mental health problems, and he founded the Mad Pride movement, a social movement which has moved Cork, and Ireland in the direction of ending stigma.


Well not how you’d think. John’s mission wasn’t in social marketing, though he used video, the internet and the media to great effect. It wasn’t in advocacy, though he spoke for hundreds, thousands even.

 John’s central message was that mental illness doesn’t exist. What we call mental illness and what society defines as mental illness were to John aspects of a broad human condition and not something to be pathologised. To John the solution was in love, love in families, as he found and gave with his wife and children, but more widely love expressed in communities, love for fellow man.

 From visiting people in hospital, to encouraging groups of people having difficult times to meet in the pub once a week for a chat, to the festival of diversity and expression that the mad pride events became, it was all about making ‘mad’ just another kind of ‘normal’. This is hugely powerful message, because stigma is about the mark of difference. Saying having a mental health problem is just like having a broken leg is trite, because broken leg or mental ‘illness’ there is still a mark of difference. Saying, as John did, that madness is one part of the broader human condition removes the literal stigma.

For the last two years John had battled motor neurone disease. He knew he was dying, that his time on earth was limited, and it made the urgency of his mission in mental health more acute. I heard him speak about the irony of the fact that he’d lived when he wanted to die, and now as his urge for life was at its peak, his time was limited. Over the past two years he  applied his razor sharp brain to speaking, and inspiring people all over the world, from Prime Ministers to those detained and perhaps having forgotten their humanity.

I met John in the context of the mad pride movement, when he came to European Commission events which I helped organise.  He recited one of his poems, Prison Without Bars, below.  In a policy forum in Brussels. It captivated the audience and wrong footed those traditional policy forum people who often through necessity become colonised by the ways in which influence and consultation is done at European level.  Thereafter John’s popular appeal and sharp mind made him a regular on event invite lists. This is not to say that he ever gave up fighting for wider participation, and more grassroots representation.

John was as critical as I have seen a person of the direction and the interests at play at these kind of meetings. Many compromise, but John never did. But John was never rude. He was direct, articulate, and said things that many in the room believed, but were unable to say. But John said it. I took this photo of John in Lisbon in 2009. He was looking out over Lisbon, on the top floor of a hotel, considering his next move, in a conference which was tense, and at which he felt, with some justification, that the policy world might roll past the issues.

John was one of the most rational, most articulate men i’ve ever known. His poetry moves me to tears in its ability to capture mood. But hearing him was something else…as only an Irish salesman an auctioneer could, he would captivate a room, and he knew it.  Every time I met John, I hoped I could integrate a bit of what he had into what I could offer. He was the noblest thorn in the side of the establishment, dignified, diligent, intelligent and committed. And totally sane.

Rest in Peace.


Prison without bars


(Title taken from Joe Healy whose son, Gerard used the words to describe living and dying with HIV/Aids, they are perfect to ascribe to emotional illness.)


Picture if you will a prison,

concrete walls, bars of steel,

guards patrolling, custodians controlling,

now remove the above,

you are as free as a dove,

vistas uninhibited, outside control

unrestricted, no access denied,

light, sunshine, obtainable,

but not attainable

for you are in a prison without bars.


I have been in such a place,

a self proclaimed confinement,

a prison created by the mind,

no bars of steel could exert such pressure,

this is solitary confinement,

while being crushed by humanity,

air which is sweet to others, tastes stale and foul,

freedom obtainable, unobtainable,

speech constricted while others expound.

This prison without bars.


How to describe this horror,

will words suffice?

the pain physical not mental,

the horror mental not physical.

The despair all encompassing,

choking on an abundance of air,

food tasteless, drink wasted, washing,

cleaning, hygiene, baseless.

Memory denuded, friends excluded, family precluded, sunshine on a lake is black.

This is the reality of a prison without bars.


You long for attention, redemption,

your heart, soul, flesh and bones,

pine for comfort succour,

this is offered by your lover,

not daily, hourly, but constantly,

consistently.  She approaches,

her eyes shining with love,

her arms open, her heart exposed.

You crave with every fibre of your

being to be held in that loving embrace,

but your mind screams rejection.

This is the reality of the prison without bars.


She retreats, her eyes now show pain,

hurt, helplessness, puzzlement,

who is this husk that was once her husband,

where is the companion for life,

with whom she shared plans,

laughed together, loved with passion,

viewed the world with compassion,

hope sprang eternal,

there was no need to fear,

the future waited quietly, compliantly, confidently,

we would always get there.

My children, adults, not quiet,

fighting for my freedom,

hacking at my non existent bars,

oh how I needed them,

but rejection is always

the reality of the prison without bars.


But love conquers all, now I can see,

my wife nursed me, quietly, oh so patiently,

never, not one word of complaint

was heard down the years,

I heard, ”I love you, we will make it”

through her tears, hatred of my

illness turned to understanding,

I began to embrace it, acknowledge

its right to exist. Contradictorily, the less I

resisted the less it could persist, she

showed me the key, the key of life,

was always in my hand.


I have inserted this key,

turned the lock,

opened my nonexistent door.

Sunshine on a lake is beautiful.

Love and passion re-awoken,

depression is a companion I travel with,

leading not led I dictate the turns.

Never again to enter that Prison without bars.


Copyright John McCarthy 2004

Young People, Mental Health and Technology Innovation Labs (Part One)

10 Jan

This is an extended version of a blog post I wrote for Nominet Trust following my participation in the first of two Innovation labs on mental health and young people.

On December 10th I had the massive privilege of working at an Innovation Lab in central London, with fifty or so of the most innovative people I’ve met in years. The chance to combine innovation, technology, and mental health is never something I can resist. The opportunity to work with a mix of outstanding, articulate, exceptional and gifted young people and a range of tech people, problem solvers, and facilitators was both humbling and exciting.

This story starts back in April, when I facilitated a workshop day on behalf of Comic Relief, Nominet Trust and Paul Hamlyn Foundation to consider ways in which young people and technology people might be brought together to co-produce a set of prototype ideas for mental health and technology assets. That day brought together young people, three of the UK’s leading grant funders, and a range of third sector organisations using technology in relation to mental health and or youth work.

The conclusions of that day were taken forward by a smaller steering group, and, as any good prototype, tested and refined to create a brief for a tender, which Cernis, a collaborative of innovators, mental health and youth work people won, and shaped with the steering group into a two stage innovation labs process.

December 10th was the first of two innovation labs which will take forward first the thinking, and then the development of proto-projects that three of the leading funders in the UK will consider for further support.

The task of the 10th was the idea generation, creating a safe space for young people, tech innovators and youth work and mental health professionals to find, meld and illustrate concepts. Through a process of creation of character vignettes, and then story creation around them via discussing problems they might face and brainstorming solutions some 190 ideas were generated, and triaged. These ranged from apps, to websites, to service models…and lots of things that so far aren’t even on the concept map.

I had two roles on the day. First was my familiar work role of giving a ‘stimulus presentation’ to fire up passion and set the tone. The second was as official photographer, as part of the social reporting team.

In the introduction I wanted to try to bring together innovation, mental health and technology. In creating the conditions for egalitarian idea generation, everyone needs to feel they are bringing something of equal value, because nobody there is a passenger. I spoke about the value of failure and learning from mistakes in innovation, reflected against the often caustic role of perceived personal failure in the experience of poor mental health. I hoped that the young people would find the confidence to advance ideas, and that the pros and geeks would get a sense of what it is like to invest a fragile sense of self worth when you are out on an isthmus of land over a deep chasm of self doubt. It helps of course that I’ve been in both positions.

Before the Lab, I stayed with my parents in the town I grew up in. I noticed how small and narrow the roads are there, roads that when I was a child seemed like motorways. This is of course because my worldview has gotten far broader. I realised that it that it was twenty years since bullying at school nearly cost me my life (by suicide), and that actually, all that time on, I can now look the town in the face without feeling small. One of the things that helped me place in context the bullying that loomed so large over my identity as a teenager was the fact that when I got to University, and got online, I received and gave peer support to others struggling with mental ill health, and found people ‘like me’ all over the world.

 The web draws together communities of interest like nothing else. In the lab, and on the online community on Ning we have a whole room (literal or virtual) of people brought together by a common interest in three themes, all alike but different. To say it was a room of very different folk who were ‘people like us’ was an understatement. The team created a space where validation was a given, and therefore the barriers were down and exchange was free.

My final point was on identity, especially the fact that we all now have portfolio identities. It’s rare indeed now that anyone born after about 1975 has a single role in the domains of home and work. Many of us move seamlessly between online and offline, and between the professional role that pays us a wage, and other, complementary professional roles which involve voluntary work, innovation, and collaboration.

One of my roles there was as photographer, another was as a well kent twitter mental health hack, another was to highlight the way in which I can use my lived experience of mental ill health and recovery to highlight points of discussion.

Yet I was there as a representative of the organisation I work for, with that first, and all the others also in play. Somebody said the other day to me ‘in the game, but thinking outside it’, and that seems like an interesting framework.

People seemed moved by what I said, and the way that I said it, and we spoke about the way I have used my personal experience of mental ill health in my work. My experiences gave me a drive, and certainly my ability talk helped, but I had hard times learning the boundaries early in my career.   A decade into my recovery, I still have the drive and motivation, but the experience has muted and become one thread in a range of skills and experiences I have in my professional life.

At the lab though somebody asked me about whether sometimes not having lived experience of mental ill health can seem like a disadvantage in a group of those who do. This really got me thinking, and showed me that we had to take care not to inadvertently reverse stigmatise. I think there is always a place for the voice of lived experience, but when we are creating this kind of true equal opportunity space can it be the sole reason for participation? It is possibly doing a disservice to people who have relevant experience but don’t share, or those who don’t have the badge, but do have a contribution to make.

I think we all establish a set of identities, a personal brand as it were that has different hues and emphases according to situation. We are all products of our experience, our endowment, and our environments. Accessing and then utilising these experiences was what the Innovation labs are about, and it worked so well.

The other interesting thing today was the organised social reporting function. For years I have admired the European science/policy conference role of workshop chair and rapporteur, where you use the workshop discussion to formulate a summary to feedback. The social reporting function at the Lab was this, but it was also about capturing the feel of the event to bring in those not there, and to sustain those who were in the incubation period.

I am a really passionate tweeter at events, because I think there are ways to share what happens in the room with those outside. It reduces inequity, fosters interest, and breaks down perception of elitism.

video making

vox pops created by Blackberry

As part of the Innovation Lab we had a team tweeting, photographing, videoing and live blogging the event at #innovlabs and online. We were talking about technology, using technology, and dipping between online and offline like otters in a river. The social reporting team was drawn from all the constituencies of interest in the process, so we had young people blogging, funders tweeting (one for the first time) and youth work professionals making vox pops on BlackBerry.

Events, and designing processes to bring folk together really excites me, but because this process is to make a thing or things, it is even more exciting. Working with such brilliant young people is energising. Many of those stars of tomorrow, might yesterday have felt like they were nothing. A process like this might help them to seek and find what they might not have realised they had. That has an echo not just in empowering those young people affected by mental ill health, but also potentially in empowering young people who can’t see a way out of a learned helplessness.

It has reconfirmed to me that if you get the process right, and the people mix right, unconferences and co-production events always surprise and delight. But, as someone else said to me the other day ‘everyone can crack an egg but few can make a good omelette, even if they think they can.’  Pulling off the ‘swan effect’ of grace and beauty is a challenge, and the work necessary to create this process is only possible because of the front loading of financial support by Comic Relief, Paul Hamlyn Foundation and Nominet Trust towards investing in genuinely equitable idea development.

Since December 10th the hundreds of ideas generated in the first lab have been streamed into seven broad themes to enable discussion. A Ning forum of lab members and online forum members is discussing the idea ‘seeds’, and the degree of nurturing and ‘watering’ given to these by the community will help shape those which are taken from the incubator and on to the greenhouse of Lab 2 in February.


voting on ideas

Already there are some ideas that have changed tack, some that seem to exist already, and some creative thinking, around for example whether the ‘urge for apps’ is always the best way forward. Just like the process of developing the labs, there is dynamic prototyping. What also seems to be happening though is that people are sticking with it, and allowing ideas to be flexed, remodeled or retired. Which is a hard thing to learn when often a small amount of hard won self confidence might be channeled in an idea. Hopefully this means that the self-confidence boost is in the permission to innovate, rather than the product of innovation. Which is a superb mental health boost all round.

Alain de Botton said something on Twitter recently about announcing something to the world before you had done it so as to concentrate the mind on achieving it. Well my New Years Resolution is to do much more of this type of tangible co-production of activities, and much less sitting in meetings thinking of what people might want.