Report of Workshop 3

With whom do we build coalitions and how do we proceed?

Facilitator: Mary Nettle

How do we make the slogan 'nothing about us without us' real in our own countries, at a European and a World level? The workshop was intended to be an exchange of ideas and we talked about many things mainly the organisations we should work with and those we should not and how to do it.

Seven people participated in the morning and afternoon workshops.

"Who will speak to you? Who will listen to you? Otherwise you are talking to yourself"

There are many different types of collaboration. What do you do if you are invited? You have choice you can choose who you collaborate with. Sometimes you have to put the past behind you. But inside it is still there you do not forget what happens.

There was a focus on alliances around mental health promotion and positive examples of working with private companies, voluntary groups and statutory agencies were given from Iceland. This was described as being a coalition of civil society, the market and Government. Mention was made of the value of making personal contacts with people of influence such as newspaper editors and politicians.

Coalitions with the market, private, commercial companies was thought to work better on a barter system that is service users provide disability awareness training which enables them to discharge their social responsibility functions and they reward the organisation well for providing a service. This is better than asking for handouts.

Influencing the media was discussed and examples given of useful training materials available to help service users work with the media from Australia and the UK. Examples were given of ways to get media coverage like a silent march with a paper bag on your head which were burnt on a fire at the end to symbolise the end of discrimination and now being able to speak out. This was felt to be a useful way to channel people's anger at the way the system has treated them. Ghandi and Nelson Mandella were felt to be good role models

Collaborating with Government was thought to be necessary as we need to influence change but can be tokenistic. User groups need to raise their profile otherwise they will never get a seat at the table where decisions are made. It has to be a two way feedback process.

Different sources of funding for user organisations in parts of Europe some are funded by gambling or lottery money is this an ethical source of funds?

There was agreement that working with the pharmaceutical industry should be avoided including organisations of users who accept such funding such as GAMIEN. It was felt that user organisations need to be made aware of the dangers of accepting drug company funding. It was felt that the question must be discussed about attending and speaking at events sponsored by drug companies, it was felt that sometimes a pragmatic approach to this has to be adopted otherwise you would not be able to influence the people attending such events. "It should not matter where good comes from"

It was felt that service users and carers need to build alliances around common issues such as need for quality services but that there needs to be recognition that there are many different needs and approaches from both groups.

Mention was made of how the electronic revolution has enabled coalitions to be made across the world at very little cost once you have access to the equipment. The Internet can be used for campaigning and information for example Mad Nation and the UN Convention. The Dutch Government manipulated information around mental health care from the USA. Service users in the USA via the Internet supplied the true figures and the Dutch had to admit they were only telling half the story.

Building coalitions with radical users through Mind Freedom and Mad Pride. In France radical users are called the resistance and those who work with the system are called collaborators. "Some of us would rather die than work with professionals" Many survivors hate the system but refuse to do anything about it due to lack of courage. In a small place this may be understandable but not if you live in a city.

Some thought it might be useful to collaborate with Scientology because they were anti psychiatry others felt that sects could do more harm than good.

There was a discussion around the ClubHouse model and whether this was a positive collaboration, on the whole it was agreed that unless service users are involved, as equals in any service model than it can not be called a coalition.

Coalitions imply equality and in most of these examples it is around building alliances, rather than coalitions, with the aim of creating an equal and fair society where we can be proud and speak out.