I have been a mental health service user since 1981, when I was diagnosed, aged 21, with manic depression – now known as Bipolar Affective Disorder. Naively I thought a diagnosis would lead to a cure, that’s how medicine works right?
Unfortunately that’s not the case for about 40 per cent of people with this condition. The drugs don’t work and we continue to experience extreme mood swings. Until recently I continued to be hospitalised every 15 months to 2 years – but more of that later.
My mother committed suicide, after 6 years of depression, in 1973. My father became ill and was diagnosed with manic depression after her funeral.
After school I was due to begin a job, ironically enough, on a mood-modifying drugs project at a pharmaceutical company, however it was discovered that I was allergic to animals and I never started.
Instead I worked in a pub but because of my upbringing, I guess, I looked for more rewarding employment. Trouble was I’d start work, become ill, be hospitalised, and then have to start all over again. So, eventually, I became a cycle courier – I still became unwell periodically, but it was the sort of industry where I could return to work after hospitalisation. In 1990 I decided I couldn’t continue the work, I was getting tendonitis in my knee and then stopped cycling for almost 16 years.
It was suggested to me by the DSS that I should apply for Disability Living Allowance (DLA) because of my mental ill health. However, I started working for two voluntary sector organisations, one a local MIND association (LMA). Unfortunately I still became ill, so finally I was retired on grounds of ill health, I applied for and received DLA in 1995. Some might think “on the scrapheap age 35”. I didn’t see it like that. I saw it as a wonderful opportunity. I still had a strong work ethic and took on various voluntary roles.
I started as a member and then became facilitator of a local Manic Depression Fellowship (MDF) group. I was vice-chair of my local borough user group, I’d helped set up at my job with the LMA. From there I became a co-ordinating group member and then chair of Survivors Speak Out. We worked hard and held two regional conferences, one in Manchester and one in Bristol, we held the first ever AGM outside of London, in Birmingham in 1996. What I discovered was I loved organising events; I also became increasingly aware that I was no longer enjoying formal meetings about improving mental health services. I became tired of thinking, “I’ve heard it all before”.
In 1997 I conceived the idea of MAD PRIDE, I felt it was time we went out there, like other civil liberation groups, with the attitude, “If you’ve got a problem with mad people, it’s your problem”. In June 1999, we held our first event in London. Since that time we have published a book; released five CDs.
In 2000 we held a free festival attended by up to 4,000 people, which received massive media attention. We have also taken direct action against the Royal College of Psychiatrists, the British Pharmaceutical Association and the World Psychiatrists Association AGM. Nowadays MAD PRIDE is an international movement.
Following the death of co-founder, Pete Shaughnessy, we no longer have the political acumen to continue the direct action that was our trademark but we still put on small, local events. No matter. The idea is out there and events and protests occur nationally and internationally.
Other organisations are carrying the torch, including Creative Routes. They are the lead organisation of an annual arts and mental health festival. On 19 July the third annual BONKERSFEST
will be held on Camberwell Green.
There will be two stages, one for amplified music and the other for poetry, acoustic music and comedy. BONKERSFEST like MAD PRIDE provides the opportunity for user/survivor artists to perform alongside mainstream artists. The theme of this year’s festival is Denormalisation with installation and performance art designed to see how much more mad you are after attending the festival.
MAD PRIDE and BONKERSFEST have given me an outlet for my organisational skills, at the same time I can choose the level of my input, so I am now staying well. The two other contributors to my good health are I have got back on my bike – exercise always helps – and I have given up alcohol for more than three years.
Although I’m sure psychiatry would say the drugs are finally working after 26 years, hmm.
Photographs by Nuala Hamilton
BonkersFest! (Saturday 19 July 2008, noon to 9pm at Camberwell Green, Southwark SE5) is a showcase of mad creativity providing a day of inspiring performance, art and music for the whole community. In addition to live music, poetry, art and performance, visitors to BonkersFest! 2008 will experience a diverse range of specially commissioned audio, visual, sensory and interactive creative works centred around a de-normalisation theme, challenging what it is to be ‘normal’ and presenting an alternative experience of the mad reality. And it’s free…