‘Democratic self-representation of people with mental handicap’, Cascais, Portugal, 28-29 April 2000
Deirdre Spain (supported by Jean Spain) represented NAMHI at the European Conference of Self-Advocates, which was the final part of a project involving Fundacio (Spain), Fenacerci (Portugal) and ENABLE (Scotland). The project was intended to promote and develop self-advocacy within these countries and throughout Europe. Quality leaflets and a video were launched at the conference.
Delegates from thirteen European countries attended, and it was clear that developments of self-advocacy in those countries are at very different stages. In Scotland they seem to be at a very advanced stage, in comparison with other European countries; one of the comments expressed was that all countries should aspire to what ENABLE have achieved.
A common problem stressed by almost all the self-advocates at the conference was the difficulty of being truly independent–doing a real job and earning a real wage. Everybody agreed that this opportunity should be available to everyone who wants it, to improve motivation, standards of living and a feeling of self-worth. This was acknowledged as a major problem being brought to the attention of European politicians. However, it was also noted that governments can make the right noises, but what is needed to raise awareness and bring about appropriate change is not agreeable noises but genuine political will!
The importance of good support was a common theme: it was felt that the value of good training and ‘support for supporters’ is underestimated by some funding bodies.
In a very positive summary of the conference, Geert Freyhoff, Director of Inclusion Europe, said that all the valuable recommendations from the conference need to be made known in all the European countries. He said that we need to improve our communication by making more use of Internet contacts, so that self-advocates can strengthen their networks.
Jean Spain, Deirdre’s mother and supporter, made a presentation to the Conference entitled ‘Dealing with a self-advocate in the family and supporting them as a parent’. She explained the present situation for self-advocates in Ireland. ‘Self-advocacy is only in its infancy in Ireland. It is hard to be a self-advocate when there is little or no service in place to help them. There are many devoted people helping self-advocates and many wonderful self-advocates in Ireland, but it is still hard for them to have someone to help them attend meetings etc. That is why I am here as a parent, an untrained facilitator. My hope for the future is that there will be an independent service financed by the government or the voluntary services.’ Jean explained Deirdre’s frustration at the lack of choices in her life–her limited independence in taking up a job, difficulties making social contacts, and sometimes feeling over-protected by her family. Jean spoke about wanting Deirdre ‘to have more independence and to live in a house with her friends in the future. But the way the services are in Ireland this might not happen for a few years and it has to be her decision alone. She needs, like anyone else, to be able to have a choice about who shares her home with her. My hopes are that this will happen when Deirdre wants it.’
Jean Spain also recounted Deirdre’s experiences as a board member representing people with learning disabilities on the Irish Council of People with Disabilities. ‘It is easy for a self-advocate to feel uncomfortable and upset at meetings. People talk too quickly and it is hard to have the confidence to ask them to slow down.’ She stressed the importance of the use of clear language, of pre-planning for meetings, and of the person with learning disability having a trained supporter.
Deirdre’s mother concluded her presentation by saying: ‘I am very proud of Deirdre. I don’t know what life would have been without her. She says what she thinks, no holds barred, and comes straight to the point. This can sometimes be embarrassing, and wonderful and amusing at the same time. She makes you think about issues in a different way. I also know I have grown by having a self-advocate in our family.’