Oor Mad History - what next?

Oor Mad History at work

We had a great afternoon today, talking about Oor Mad History. Kirsten reminded us of everything we've done since we first got started in the summer of 2008 and then we talked about what we want to do next.

We came up with lots of ideas, most of which involved humour and creativity and how Oor Mad History can challenge stigma and outdated ideas about mad people.

So now we need to go through all the post-it notes and flip chart sheets and see what we can do.

Thanks to everyone who came today and to everyone who has been involved over the past few years. Onwards and upwards!

One of the constants at the Principles into Practice awards event was the use of the arts. Not just a way of passing the time, art - whether painting or writing or performing - is a way of finding your voice and telling your story.

And this is something we have been doing, especially at our exhibition last October. Jimmy Osborne's scupltures and photography stimulated a lot of discussion. We shared the space at Out of the Blue with exhibitions of art by people at Outlook and Equally Connected as well as award winning Much More Than a Label, CAPS PD project.

As well as Jimmy, other people involved with Oor Mad History are artists and writers. Sharon, a volunteer in the archive, is a writer and her book Prozac and Prayers was published last year. Jim and Anne both write as well and Anne has started doing comics. Who knows what other creativity exists?

We are now thinking about the future and how to use various arts - music, drama, visual art, writing - to record and remember our history and to tell it in new ways.

Any ideas? Leave a comment, or contact us at our new email address: contact@oormadhistory.org

Principles into Practice event

Yesterday we went through to Glasgow to speak at the Principles into practice awards event.

The Principles into Practice Network is part of the Mental Welfare Commission and "aims to promote care and treatment that is in line with the principles of mental health law."

Keith and Anne spoke about Oor Mad History, what we have done and what we hope to do in the future.

It was great speaking to so many people in the breaks about Oor Mad History and about their work. Anne spoke to someone who was involved in West Lothian in the early days - so maybe another interview is on the cards?

The highlight for us was seeing the CAPS PD project and the Self-harm Service at the Royal Edinburgh win the Service user participation and influence Award for their joint work.

Both the SHS and the PDP work are user-led and -directed services which support service users to have a direct impact on the care and support they need. Both projects were set up in response to service user lobbying about the gaps in support and services for people with a diagnosis of personality disorder.

 History continues to be made!

Our next event

Oor Mad History is hosting an event on 23 March 2011 at the Filmhouse in Edinburgh. 

The first phase of Oor Mad History is coming to an end so this is a great chance to celebrate everything we have done and look forward to the next phase. 

We would like to see all the volunteers and interviewees and hear what your opinions and ideas.

Contact Kirsten if you want to come along so we can order enough coffee and tea!

Holocaust Memorial Day - Never Forget!

Tomorrow is  Holocaust Memorial Day: "a time to remember those who have been murdered in the Holocaust and under Nazi persecution, in Cambodia, Bosnia, Rwanda and Darfur. On HMD we act to learn the lessons of the past to create a safer, better future."

It's theme this year is Untold Stories. The stories of the disabled and mentally ill people killed by the Nazis have not been told and so many people do not know about what happened. 

Nazi propaganda in the form of posters, news-reels and cinema films portrayed disabled people as "useless eaters" and people who had "lives unworthy of living". The propaganda stressed the high cost of supporting disabled people, and suggested that there was something unhealthy or even unnatural about society paying for this." Ouch

Ouch, the BBC's disability website explains what the Nazis did.

 

As does The United States Holocaust Memorial Museum.

There isn't a memorial anywhere for the disabled victims of the Nazis but The Chair: Holocaust Memorial to Disabled People is a project to work for memorials across the world.

Resistance a "moving image installation" about the Nazi genocide of disabled people, how some disabled people resisted, and making the connection with current issues such as pre-natal screening and assisted suicide.

Indeed, there is a lot of similarities in how disabled people are being talked about by politicians and in the media in the UK. We are "useless eaters" and cost society "too much". Even those of us who work and pay taxes are faced with increasing difficulties in keeping those jobs as Access to Work is threatened and the Independent Living Fund are axed. and Disability Living Allowance (which helps many disabled people to stay in work) is being scrapped for a more narrow benefit to be called Personal Independence Payment.

Holocaust Memorial Day is not just remembering the past but about learning from the past and taking action. 

Oor Mad History records what mad/mentally ill people in the Lothians have done to change things for the better. Mad people need to go on changing things and challenging the current assumptions about us.  And OMH will record them! 


Never forget!

Collective advocacy might be the term we have come up with but the concept of "a group of people who are all facing a common problem who get together to support each other" is not just found in mental health or other health and social care.

Here is a good example of collective action in housing in Edinburgh in the early 70s from the From There… To Here: The social history of Wester Hailes blog.

Wester Hailes is a huge housing scheme south west of Edinburgh which was built in the late 60s. 4,800 houses and flats but only 1 shops and nothing else. Of course people weren't happy - so the Wester Hailes Association of Tenants (WHAT) was founded.

“ If you were to go along to the Planning Department of the Corporation to say you thought there should be better facilities in Wester Hailes you wouldn’t get any further than a clerk at the front desk”

On their own they are insignificant and ineffectual. But there is another option. The power to demand to be heard can be generated by banding together and speaking with a single, united voice. It all boils down to a simple and stark equation:

“Bodies like the Corporation pay more attention to other bodies than they do to individuals. The bigger the body, the better the attention”

Many people who got involved in the early days made the connection between activism in other areas and their motivation in getting involved in mental health activism.

So in the late 70’s and early 80’s I was involved with politics , campaigning politics, left wing politics, anything-you name it I’d support it. Then I began to get fed up… sort of ‘what’s happened with the people like me?’ so I went to see there was nothing. It was like... there was this hidden thing. We were all supporting gay rights, we were all supporting Northern Irish prisoners, we were all supporting... John MacDonald

and

It really felt as if it was something major happening. It was a movement along with lots of other movements that were very vocal at the time like The Women’s Movement, the Black Movement. It felt like at last, folk were standing up, forming a strong alliance and making strong statements that were going to make societal changes. Be Morris

And today, history in the making, the anti-cuts movement seems to be making connections between trade unionists, students and disabled people to fight against the cuts which will have a huge impact on people with mental health problems throughout the UK.

the Lothians, Scotland and beyond...

"Christ yam,", he demanded, "Whit are us auld men tae dae if ye ever leave us - We're a divided frae yin anither. Kin ye no start up a Union afore ye go? Fur divided we fall."

These are the words of Archie Meek to Tommy Ritchie, both patients in Hartwoodhill Hospital in 1971. Tommy was to go on to form the Scottish Union of Mental Patients which is the first known service user/survivor group in the UK.

I found this online when searching for something else: Scotland the Brave, an article by Andy Roberts which appeared in Mental Health Today in 2009. So I thought I would link to it as it gives an account of the mental health service user movement in Scotland from the early 70s.

Andy Roberts is the Secretary of the Survivors History Group down in London. His website is full of amazing information and facts and personal accounts of survivor history.

Oor Mad History as a project is about what happened in the Lothians - but Oor Mad History as a concept is about what happened everywhere in Scotland and indeed everywhere else. What do you know about what has happened where you live? How does it connect with what has happened in other places?

Talking about Oor Mad History - whether at a big formal talk like at the Scottish Mental Health Research Network on the 23rd November or in a one-to-one conversation is - that you have to go away and think about things a bit more.

One thing which I want to talk about is why we chose oral history as a way of interviewing people rather than seeing it as a straightforward semi-structured interview.

cover of The Oral History Reader

This quote from The Oral History Reader sort of answers this for me. In the introduction, the editors say that oral history

include[s]within the historical record the experiences and perspectives of groups of people who might otherwise have been ‘hidden from history’, perhaps written about by social observers or in official documents, but only rarely preserved in personal papers or scraps of autobiographical writing.

Robert Perks and Alistair Thomson, The Oral History Reader

Many people with mental health problems have written their own accounts of their experiences of distress, the responses of other people, of services, and about their recovery.

[Gail Hornstein has compiled a list of first-hand accounts of madness which you can download directly at http://www.mtholyoke.edu/acad/assets/Academics/Hornstein_Bibliography.pdf [PDF] Gail is an American psychotherapist and academic who argues that the best way of understanding madness and mental distress is to listen to those of us who are mad and distressed.]

cover of The Christian Watts Papers

However, autobiography can be dismissed by others, by more "objective" writers. For example, Christian Watts wrote a memoir of her life which has been published as The Christian Watt Papers. She was born near Fraserburgh in a fishing community. She spent much of her life in an Aberdeen asylum.

Two historians looked at the official accounts of Christian's time in the asylum and compared the notes to her memoir. Because much of her memoir is not corroborated by the records, they struggle to reconcile the discrepancies and seem to prefer to believe the records, despite acknowledging thatperhaps the doctors had to exaggerate her condition to justify her detention. [You can see the abstract of their academic paper here:http://hpy.sagepub.com/content/17/2/205.abstract but you can't read the paper itself.]

Oral history, such as Oor Mad History, is a group history. It can bring together a range of perspectives on one subject at a particular time.

That's not to say that oral history has not also been accused of being subjective. It has, but that's a subject for another day.

UK Disability History Month

UK Disability History Month logo, yellow circle with black triangle

UK Disability History Month started this week and runs until 22 December 2010. It's the first one and we are delighted to be able to be part of it.

Their aims are to

• Celebrate our struggles and achievements as disabled people, with our allies: this could be our parents, friends, professionals, work colleagues and neighbours
• Create a greater understanding of the barriers in society that disable people. Looking at the history of how such barriers and inhuman treatment are fuelled by negative attitudes and customs, whilst recognising this as oppressive disablism.
• Develop and campaign on what needs to be changed for disabled people to achieve full equality in all areas of life
• Make equality a daily reality. The UK Government have passed the Equalities Act 2010 and ratified the United Nations Convention on the Rights of People with Disabilities. Much has to happen to make these Rights a daily reality for the 12 million disabled children and adults in the UK.
• Recognising the multiple identities of disabled people. We want to cover the full range of impairments and link with disabled people also struggling against sexism, racism and homophobia and other forms of discrimination.

These are very similar to the aims of Oor Mad History.

I think people with mental health problems need to see ourselves as disabled people and recognise our common cause with other groups of disabled people. We are all affected in our own ways by the same thing - lack of understanding, discrimination, inequality, stereotyping...

UK Disability History Month is an ideal time to explore what we have in common and what are our differences.

What do you think these are?

Talk, talk, talk...

Sorry for not posting yesterday but we are quite busy right now. Kirsten and volunteers are beavering away at the archive. And we are preparing two talks about Oor Mad History.

The first one is at 'Doing the 'right thing': Tension between the popular, political and scientific', the Annual Scientific Meeting of the Scottish Mental Health Research Network. It's on Tuesday in Glasgow, and I am speaking in the 3.15 pm slot. The other speaker is Neil Quinn who is involved in the development of the Scottish Service User Research Network.

I am going to talk about about the service users doing research. Oor Mad History is primarily an oral history and archiving project, so I will focus on oral history. 

I will also talk about some of the other research that service users supported by CAPS have done. One is about people's experiences of detention [PDF] under the Mental Health Act. Another is about the work done by people with a diagnosis of personality disorder.

The research we do can be considered as Action Research - that is, doing the research is part of changing things. Simply put, people talk about their experiences and say what needs to be done differently. Of course, doing this is a bit more complicated!

The second talk is at the University of Edinburgh on Monday 29th November at 5pm. The Public Policy Network is holding an event called The different experiences of mental health and illness. We are still talking through the ideas for this talk so I won't tell you anymore for now. Other speakers come from backgrounds in therapy and theology, social anthropology and psychiatry. We'll all be talking about about how perceptions of mental illness has changed over time.

Both events are open to the public but you need to book - see the links for each talk for the details.

I'll be doing both talks and I tend to talk from notes as opposed to reading a prepared talk, so I won't have the full text to put up here. But I will put those notes and any slides.

History in the making...

One of the reasons Oor Mad History started was because we didn't want to forget the past. But history isn't just about the past, it is about now. We want the archive to be a living archive with new material being added all the time. We want people now to see themselves as part of a history, and their actions now are creating history.

The user movement started in the 1980s. People then didn't think that they were making history, at least I doubt they were. I think they were just busy doing what they thought needed doing. 

Almost thirty years on, we are still making history.

Spending cuts review, welfare reforms, public service cuts... it is an anxious time for most people with mental health problems, whether on benefits or not. The fear of what will happen the services and benefits that most of us need is made worse by the way the government and some of the media talk about the "workshy".

I know a lot of people who turn off the news and avoid the papers because of this.

But I know some people who are saying "right, what can we do about this?" That is history in the making. 

ashtray

In my last post I finished with a reference to smoking.

 

We put an ashtray in the exhibition because it was central to my memories of meetings of Lothian Users Forum in the 1990s:

And the other thing I remember is the amount of smoking that went on [laughter] and when sort of rules were brought, because I don’t smoke, to minimise it, that only two people could smoke at any one time could smoke or only the person who had the ashtray could smoke and people just staring at the ashtray waiting for it to become free. Even as a non smoker I wasn’t bothered, but I remember there was a really strong sense that people had to smoke, that it was their right to smoke and I don’t think could believe at the time that hospitals would become smoke free or people would have to stand outside meetings to have a smoke, you know that was kind of unthinkable at the time. I’m sure at meetings I was often the only person who didn’t smoke, but that was a big thing then.

It is strange that so few people referred to smoking in their interviews. It was a big thing, in my mind. Maybe as a non-smoker, I really noticed it.

The smoking rules came in later, in EUF days. It was contentious because of the purpose smoking served. Many people started smoking in hospital, for instance. A cigarette was a way of bonding between staff and patients, a way of relieving boredom and stress, it was part of being a mental patient.

So when people came together to talk about mental health services, people lit up, offered one another cigarettes, bonded with each other...

Do you have memories of smoking in meetings, of the debates and arguments about smoking in meetings, about the rights and wrongs of smoking bans on the wards and in day services?

typewriter

One of the exhibits was a typewriter, inspired by a couple of things that Graham Morgan told us.

…I remember I was the minute writer [of Awareness] and I had my rickety old typewriter. I’d tap away on it very, very, very badly with one finger

and talking about Margaret Temple, the first worker with the Patients Council at the Royal Edinburgh Hospital.

Yes, the very first memory… was of Margaret Temple sitting in her room, I can’t remember even what building it was… it was an office with a chair which might have been missing a leg. She either had a chair, no the chair had a leg, and the chair doubled as a table for her typewriter, or a seat for her. So if she was doing her typewriter and she’d be sitting on the floor typing it, it was a manual one, and if she wasn’t doing her typewriter she could sit on the chair.

These quotes brought me back to the days when everything was written by hand or on manual typewriters. The sound of keys being pressed very hard, the ping of the return, the copious use of tippex. A lot of the papers we have from those early days are not fully dated - 10 October was enough, but was it 1992 or 1995? A bit of detective work is needed to figure it out - who is mentioned, what were the issues?

The yellow keys on this typewriter remind of how much everyone smoked back then... but that's a post for another day.

The archive

Our book and exhibition have mostly focused (but not entirely) on the oral history but what about our archive?

It is currently (October 2010) in the CAPS basement which is not ideal - a flood could destory a lot of it and it isn't very accessible either. So we are thinking about where to keep it in the longer-term. 

It consists of all kinds of printed materials - minutes of meetings, reports, newsletters, posters, letters, bills, draft articles, expense sheets... and a lot more.

Survivors Speak Out newsletter from the 1980s

We have some non-paper based items - the t-shirts which had been on display at the exhibition, for instance. And the tulip you might be able to see to the left of the photo - that was a present from a Dutch user group, and for a while was used to show who had the right to speak at EUF meetings. 

Kirsten and Jim are the main people who have worked on the archive over the past couple of years. There is a lot involved in sorting through an archive. 

is this bit of paper worth keeping? where does it fit? what year is it from? 

Kirsten has had a lot of advice from the Lothian Health Services Archive, based at the University of Edinburgh Library, and we have been using a version of their cataloguing system. 

Despite having such a lot of paper to deal with, we are still looking for new items. We would really love to get photos, posters, personal accounts... If you have something you think might interest us, please email Kirsten at kirsten@capsadvocacy.org 

Mentioned in the Scottish Parliament

As we said in previous posts, our exhibition and book launch was opened by Malcolm Chisholm, MSP. He mentioned us in a speech he made at the Scottish Parliament on the 29th of February, on a debate on the "see me" anti-stigma campaign.

I have a particular interest in the matter this week because, on Friday, "Oor Mad History: A Community History of the Lothian Mental Health Service User Movement" is being launched in my constituency. I was honoured to be asked to write a foreword and I will speak at the launch. I am certainly aware from the work that people have done in Lothian that significant progress has been made on the wider front in relation to respecting people with mental health problems. It is appropriate to mention that and to see the see me campaign as part of a wider movement for change and improvement.

The Service User Movement in Lothians was first mentioned in the Scottish Parliament during the campaign for what we still call the new Mental Health Act: The Mental Health (Care and Treatment) (Scotland) Act (2003) which became law in 2005. 

Exhibition

Last night we took the exhibition down. We felt quite sad - we had been so excited putting it up, and it has been wonderful to see so many people visit it, talk with them, read the comments...

We started before the exhibition with this:

then during the exhibition, it looked like this:

and last night it was back to this:

The exhibition ran from Friday 1 October to Thursday 14 October at the Drill Hall, Dalmeny Street, off Leith Walk, Edinburgh.

We shared the space with

• Much More Than A Label - art works by people who were involved with the PD work which CAPS has been working on;
• Outlook, the mental health community education project who displayed posters that students made about recovery and
• Equally Connected a mental health project for people from Black and Minority Ethnic communities.

It was part of the Scottish Mental Health Arts and Film Festival which runs every October and aims to help challenge attitudes towards mental health through the arts.

A book, a CD, an exhibition - what next?

The book!

After a busy summer, working on the Oor Mad History book, on the CD and on the Oor Mad History exhibition, we are back blogging.

We launched the book on the afternoon of Friday 2 October, which was the first day of the exhibition.

Over 100 people attended, a great mix of activists from all eras, allies old and new, and interested members of the public. It was so good to see so many people coming together and I got a thrill out of seeing people talking intently about the exhibition, sharing memories, and swapping ideas.

We had great speeches from Malcolm Chisholm who opened the event, Jim McGill and Kirsten MacLean.

Malcolm Chisholm is MSP for Edinburgh North and Leith and a long-term ally of the user movement in the Lothians.

Jim McGill is a long-term activist and now a volunteer interviewer, archivist and member of the steering group for Oor Mad History. He spoke about his experience with Oor Mad History and his hopes for the future.

Kirsten MacLean, community history worker, has worked tirelessly over the past 2 years on so many aspects of the project. She explained some of what we have done, and thanked a long list of people who have been involved in so many different ways in Oor Mad History.

Kirsten shows off the book

The overwhelming interest in the book and exhibition has confirmed what we have always thought - this is too good to stop. We have lots of ideas on what we want to do next. Now we need to plan for the future.

If you have ideas on what we should do, how we could do it, or want to get involved in any way, please contact Kirsten MacLean, our community history worker, at kirsten@capsadvocacy.org

You can get a copy of the book and the CD from Kirsten as well. A PDF of the book will be available on this blog soon.

Book Workshop Report

The Book Workshop on Friday 16th April went really well. We had 15 people attend throughout the day.

one of the tables all laid out ready for us to get work

Kirsten began by telling us what the day was about: read through some of the transcripts in ones or twos and mark what we thought were the best quotes using highlighters and stickers and pen - whatever suited.

Before and after, we had a discussion which I thought was very focused, affirming and inspiring. Serious points with lots of laughter.

When we were working on the transcripts, I was struck by the studious air of the room. Some of us worked on our own, heads bowed, highlighter pens dashing along the pages. Some of us worked in pairs, having quiet, intense discussions.

At lunch time, Kirsten had to drag some of us away from the hard work so that we could have soup and rolls in the café.

We finished with a big thank you to Kirsten who organised and managed the day in her usual efficient and warm manner.

ideas for the cover - we'd love to hear yours

Book workshop in April

In April, we will be holding a workshop to start working on the book. It is open to people who have been involved in the project already and to anyone interested in getting involved now.

We will read the transcripts of the interviews and highlight the most interesting quotes to go in the book.

Get in touch with Kirsten if you want to know more. Her contact details are on the left.

Last days in Toronto...

Tomorrow we fly back home. It has been a week we will never forget! Thankyou so much to David Reville and Kathryn Church for hosting us so magnificently. Also thankyou to all the many inspiring people we have met over the week.

Talking of inspiring people, let me tell you about some we have met the last two days...

On Thursday we had the privilige to meet Geoff Reaume and Mel Starkman who are responsible for the Toronto Pscychiatric Survivors Archives, the equivalent of the archive we are trying to create in Lothian. It was just so great to hear them talk about how the archive got started and the richness of the collections they have. They are currently developing a finding tool/catalogue so we will keep in touch with them and see this when it is complete.

Issues this discussion brought up for Oor Mad History were around deposit and community ownership. Also powerful for was Geoff telling us about the Wall, part of the old asylum wall built by the forced labour of patients, now a memorial to the lives of those who have been incarcerated there. Although some people would like to see the wall demolished, Geoff firmly believes it should stand as testimony to the harsh reality of psychiatric hospitals. He believes without physical actual reminders, it is easier to gloss over or sweeten difficult, painful histories. He has run 70 public tours of the wall to communicate it's story.

We then rushed off to a meeting at the Chang School of Continuing Education. David has made a short film of clips from interviews with survivors (many of whom we have met this week) on the topic of "Identity and Self Labelling". The meeting was to showcase documentary film as an example of good practice and to showcase it's potential in e-learning. We met the Dean of Ryerson University at this meeting.

After that Steve and I attended a meeting around the potential of setting up an international Mad People's History course - either developing a course in Scotland using Ryerson framework or an international e-learning course being developed by the Ryerson course constuctors.

We had a wonderful lunch on campus, where we were joined by Patricia one of the stars of Working Like Crazy. Patricia now works for the Ontario Council of Alternative Businesses.

On Friday our day started with meeting Jiji Veronka, who is Ryerson trained, a survivor, ex-street kid who now works for the Mental Welfare Commission of Canada. This talk was fascinating and gave insights into the complexities of being a survivor in this context.

Kathryn then talked to us about the exhibition she curated with two other women, "Out From Under". This was an exhibition that came out of a short course about disability and museum curation where the course participants were asked to bring along one item that represented their story. This created a very powerful exhibition of the objects and the context. The exhibition ran at the Royal Ontario Museum and they also did a lot of research with visitors to the exhibition and how they reacted to it. Kathryn has just found out that they have the go ahead to take the exhibition to Vancouver next year for the Paralympics.

We then had a debrief at Kathryn's loft, where we talked about the high points (too many to count!) of the week and action points of how we take this forward. For me there was a huge amount of learning around the archive from Mel and Geoff, also a much better understanding of David's course and how we might work towards a Mad People's History course in Lothian. I've also learnt a lot about the parallels with CAMH and the Royal Edinburgh Hospital and I believe there is potential for a lot of knowledge exchange there, in particular around peer support, survivor recruitment and survivor run organisations within the hospital, between Empowerment Council in CAMH and Patients Council in Edinburgh and very much around the reprovisioning experinces of both places.

I was delighted to be given a wonderful gift of Pat Capponi's book "Last Stop Sunnyside" - a crime novel set deep in the heart of the Toronto Survivor community. This will be a great addition to our archive.

So, it's our last night. Tomorrow we fly back. What a week! It has been such an amazing opportunity for Oor Mad History. I hope that we can continue to build on this exciting partnership and this is the start of many more conversations.