Travelling show

Spotlight on the severely affected

Over the past 14 months, Anita Roddam has co-ordinated a piece of artwork involving members of the ME community in representing the severity of their condition. It conveys the large number of people affected, the whole variety of their ages and backgrounds and, where known, the duration of their illness.

Anita, who has been bedbound for six years, set up a `travelling installation' of 45 sheets of 1,000 ribbons. Each ribbon symbolises one of the 45,000 individuals who are thought to be housebound or bedbound with the illness in the UK. Anita says:

`It helps people to visualise what 45,000 people in their beds might look like. It is going around the country for people to sign and add their comments, rather like the AIDS quilts. The idea of it being a travelling exhibition is to overcome the immobility and isolation many people suffer. It has also given a voice to the previously unheard.'

Strength and solidarity

The 45,000 Installation has travelled to the homes of people in over a dozen towns and cities in the UK so far and it's hoped it will also raise awareness and provide information for those who do not have the illness. One contributor wrote: `I spread the installation all over the floor and the bed in my room so I was surrounded - contained, nurtured and encouraged - by all the other severely ill sufferers. When spread out in a broad path, the sheets cover the distance to the loo and back. This is the furthest I have walked unaided for five years.

Anita Roddam makes an innovative challenge to the exclusion and isolation ME' can cause

Anita's use of ribbons was inspired by the 25% ME Group and by BRAME (Blue Ribbon Awareness of ME). For more details about these groups, see our special section starting on p.25 Anita Roddam with the 45,000 Installation: Each ribbon symbolises one of the 45,000 individuals who are thought to be housebound or bedbound with M.E.

Virtual reality

At an ME Awareness conference in the North of England in May 1999, some 200 people with ME and health professionals got to `meet' the 25% of severely affected sufferers via the installation, and a speech Anita had written as a mission statement was read out. She says: `For years I had been unable to read much from the journals of the main ME support groups because I was too ill. What I did read made me feel even more isolated. People thought we should be forming swimming and cycling groups and contemplating childbirth. They didn't seem to be talking about the ME that I had. But in the 25% ME Group everyone was virtually housebound - or bedbound - just like me. When I look at the installation, it reminds me of a war memorial - and we are battling daily; I think of prisoners crossing off the days they have been confined, counting up until their release. I see graffiti, a wall of friendship, a petition, a protest, a vote of confidence. I am no longer invisible. What really inspires me is the thought of 100% of the ME community coming together to achieve recognition.' The installation is currently on a tour of city libraries and galleries in the North of England.

For further information, or to receive the installation, please write to Anita Roddam, including a telephone contact number c/o AfME Box No. 3201.

Stop Press!

The 45,000 Installation was exhibited before the All-Party Parliamentary Group on ME at the House of Commons in November 1999.

Anita's speech was read by her friend Michael Henry, who explained the purpose of Anita's campaign to the assembled group of MPs. He also asked for their support for Dr Derek Pheby's research proposal to do an epidemiological study on the illness (more on page 9).

Later, individual MPs viewed and asked questions about the installation, which has now grown to over 70 sheets, with contributions from sufferers all over the country.

InterAction No. 32 January/February 2000 p8

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