The Brothers of Charity Roscommon hosted The National Service Users Conference 2002, on 4–5 November last, with the theme of ‘letting go’. Over 400 delegates participated in the event—showing how interest in self-advocacy over the past four years. The conference provided a forum for Irish people with intellectual disabilities to meet to share experiences, both positive and negative. Because issues were presented in a creative visual way, delegates left remembering them and hoping to carry out further work in their own advocacy groups all over the country.
The conference kicked off with the Drumshanbo Salsa drumming group who facilitated 50 of the Roscommon delegates to play a plethora of percussion instruments from around the world. All the delegate groups had made colourful rice shakers before the conference, and they joined in with the drummers in the opening ceremony. Dana Rosemary Scallon MEP officially opened the conference with words of encouragement to the delegates. Roscommon representatives performed the inspiring conference anthem Something inside so strong, accompanied by a mime.
The keynote speaker was Maria Wolfe, a young person availing of services in Galway. Inspiring and encouraging all people with intellectual disabilities, she talked about ‘letting go’ in order for people with intellectual disabilities to live fulfilling lives and follow their own path in life. She said that people with intellectual disabilities are sometimes in services that do not empower them to make decisions vital for their personal growth. Often they are not asked about their likes and dislikes, for fear of mistaken decisions. ‘We achieve things by taking control of our lives. If others do things for us all the time we remain unable to help ourselves and are left vulnerable and in a permanent state of uncertainty, as changes are made in our lives without asking if that is what we really want.’
A person should be included in all meetings about them, in a respectful and meaningful way, and have a say in what is being decided about their lives: ‘I am the person that knows best what I like or dislike.’
Services for people with intellectual disabilities need to focus more on what people are able to do and help them to develop their individual abilities, e.g, how to use public transport, banks etc. People availing of the services should have a say in how their service is run, e.g. in appointing new staff on whom they will be relying for support in the future.
Maria talked about the value and importance of real friendships. She does not favour the common practice of large groups going out together: ‘This blocks opportunities for individual expression and attention; it also separates us from people around us, as people often shy away from large groups.’
Maria’s concluding message was: ‘Spread the word around about how important it is to let go of the things that hold us back and move forward to the things that will help everyone in the services to develop and grow.’
Following Maria’s address, a number of presentations were given by delegates from other regions. The Galway Blue Teapot Theatre group ran a workshop that involved fun, activity and personal expression. They also presented a piece of forum drama that relied on the risky technique of audience interaction—a very powerful piece of work that demonstrated the ability of people with intellectual disabilities to problem-solve in creative and diverse ways.
The Caritas Advocacy Group, Cork, presented a visual account of some of the issues that service users were confronted with and had to overcome before attending the conference—e.g. family permission, finance issues, etc.
Kathleen Ryan, Kilrush, shared her experience of being in a relationship—reading stories of love and longing in a multimedia presentation of slides and atmospheric music.
A number of facilitated workshops enabled delegates to discuss issues of importance to them:
Letting go: ‘Being left to do things for ourselves’ and ‘being more independent, like going down to the shop, crossing the road, looking after our own money.’
Choosing friends and relationships: Being able to do the things that everyone else does in any kind of relationship, e.g. going for dinner, cinema, intimacy. Sometimes families are not supportive of relationships: ‘Relationships between guys and girls means hassle at home.’
Advocacy representatives—How can I best speak out for myself and others? The importance of shopping for oneself and making choices was raised, and learning to drive. Delegates talked about helping those less-able with certain activities like crossing the road. Advocacy meetings can be too big, and people sometimes themselves. Further training is required for services users and their supporters, from an outside body. The importance of knowing your rights was discussed, and the importance of respecting other people’s rights was also recognised.
Nobody in the group liked the name and they wanted it to be changed because it makes them feel ‘hurt’. They thought it was a ‘bad’ name. They were happy with the name ‘intellectual disability’. There was confusion around the name mentally handicapped and psychiatric illness. They felt the use of the term mentally handicapped is a big issue to attract funding.
‘My money—Is it mine to spend?’
People who have the use of their own money feel more in control than those who don’t. Sometimes people on training courses get paid, while others doing the same work alongside them do not. A person’s money and how they spend it is their own business. Some felt that they do not earn an adequate amount of money to live on and that they need more opportunities to earning extra money.
Do we learn from our mistakes, when we are allowed to make them?
Delegates felt that everyone makes mistakes and they should be allowed to make them as well, as long as they don’t hurt others or themselves or get in trouble with the guards, parents, at work or damage property. ‘We do learn from mistakes; we have good experiences and bad.’ ‘We have to try different things to find out what we like and what we do not like.’ ‘We learn if we didn’t try something we would not have known how we felt about it or had the experience.’
Do we have a say in the services provided for us?
People felt that there was a lack of consultation with them in relation to decisions made about them—e.g. holiday changes and plans being made without asking their opinion. Services are provided for groups, not individuals. Services encourage independent living, yet they do not give the skills for this—the areas of sex education and personal development are overlooked.
There is a need for more resources to be put into leisure and evening recreational activities. Transport is a problem. There is a need for a co-ordinated approach with other agencies. There is a need for links to be maintained between children in special and ordinary schools: ‘No choice is offered to us about what school we attend and how long we stay there. We are often held back in national school for years longer than the others. As a result of this we lose friendships. Things have improved for us because of advocacy.’
The afternoon workshops were followed by the conference dinner and dance. Delegates were addressed by Winifred O’Hanrahan, National Director of Services, and Sara Regan, Roscommon service user. Winifred give a brief account of how advocacy has evolved within the Brothers of Charity Services and said she was delighted at the hard work and progress that had been achieved so far.
On Day Two of the conference, Galway and Kilrush advocacy groups presented ‘The Spanish Experience’, with a video of the highlights of a trip some of their members had made to the Inclusion Europe Conference 2002 in Madrid earlier in the year. They identified with the issues discussed there and gained new knowledge of advocacy and how it is developing in other European countries. It was also an enriching experience from a social and cultural perspective.
The Waterford Self Advocacy group showed a video of service users being interviewed about work, play, hobbies etc. They also presented a very entertaining and funny drama. ‘They call me Boots’ was about a young man whose passion was football. But his family, while well intentioned, discouraged him from participating in his favourite sport for fear he might come to harm. Overprotection can be a barrier to someone having a full and meaningful life.
The Limerick group presented a video of the National Service Users Council meeting with the National Directorate of the Brothers of Charity Services.
A audio visual presentation called ‘Able to’ showed four couples talking about their experience of being in a relationship. They talked about the positives and some of the difficulties they were confronted with, such as resistance from families. A group of delegates from the Roscommon services presented individual pieces on their personal interpretation of ‘letting go’ in the form of song, music, poetry and role-play. Balloons were released to symbolise the letting go of many of the things that prevent people from living the lives they choose.
In her closing address, Marion Keigher, Director of Service, Roscommon, emphasised the importance of self-advocacy conferences to offer a forum for people with intellectual disabilities to tell their stories about what life is like for them. Their stories will help society’s perceptions to change in a positive way and to understand that everyone has similar needs and wishes for as full a life as possible.