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Ireland - Saint Lazarus at the EDF Annual General Assembly (May 2016)

Sarah Lennon from Inclusion Ireland - Claire Hendrick from Inclusion Ireland - Professor Gerard Quinn - EDF Executive Committee member Klaus Lachwitz  - Roisin de Burca from Down Syndrome Ireland

What does it mean to live without the right to choice and autonomy?

Dublin, 22 May 2016 | Many of us take the right to make decisions for granted: what to study, what sort of job to apply for, where and with whom we live, who to marry, who to vote for, which doctor to visit. However, for many people with intellectual or psychosocial disabilities, these basic decision-making rights are removed and their will and preferences are not respected. Many persons with disabilities end up living in institutions and psychiatric hospitals against their will or women with disabilities are sterilised without their informed consent.

The European Disability Forum's Annual General Assembly in Dublin, Ireland, opened with a European conference on legal capacity and the right of persons with disabilities to make their own choices in all areas of their lives. More than 200 representatives from organisations of persons with disabilities across Europe, academics, self-advocates and other participants shared their experiences and discussed how persons with disabilities can be supported in making their own decisions. Representatives from the Saint Lazarus Foundation was also present for the Assembly.

This is a right enshrined in the UN Convention on the Rights of Persons with Disabilities (UN CRPD) which has been ratified by the EU and 26 out of 28 EU Member States.

Claire Hendrick together with Sarah Lennon from Inclusion Ireland and Professor Gerard QuinnClaire Hendrick from Inclusion Ireland is a young Irish woman with intellectual disability who used to be under guardianship. This means that someone else decided for her and she was not allowed to take decisions about her life. "After my mum's death, I ended up living in a place for homeless people, far away from my doctor and my family. I was not allowed to look after my own affairs. To go to the doctor, I had to ask someone. If I wanted to use some of my money for my birthday, I had to say exactly how much. It was very stressful".

Roisin de Burca from Down Syndrome Ireland, a young Irish woman with Down Syndrome, explained how important it is for her to live independently and get the right support to be able to do this: "My older brothers went to college. I wanted to study too and I did. I live with my parents but I want to be independent and to be able to take care of myself. I want to work but I haven't found a job. The biggest challenge I have faced is taking responsibility. I need help to make a decision and a lot of time and information before making the decision. I also need help to live independently. With support I can".

The Chairman of the Saint Lazarus Foundation, Dr. Max J Ellul, intervened in a number of occasions during the assembly and a specific meeting was carried out with the EDF administration headed by Catherine Naughton which resulted in EDF accepting that its February 2017 Council Meeting - the first EDF meeting during the year in which EDF celebrates twenty years of hard work in favour of the disabled - will be held in Malta.


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