What does it mean to live without freedom of choice and autonomy?

22 May 2016
Participants in the conference

My decision, my right!

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.

EDF’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 enjoying freedom of choice and making their own decisions.

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 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”.

Professor Gerard Quinn of the University of Ireland in Galway presented the international legal and policy framework of legal capacity . He stressed the importance of personhood and the changes that UN CRPD brought to define all persons with disabilities as human beings recognised before the law.

Fiona Walsh from the Irish organisation ‘Recovery Experts by Experience’ talked about the organisation’s involvement in the reform of the law on legal capacity in Ireland. She stressed the importance of bringing the lived experiences of persons with psychosocial disabilities in the discussions of the reform.

National legal reforms on legal capacity in Lithuania and Slovakia, as well as their outcomes on the lives of people with disabilities were also presented.

The conference was organised by EDF in partnership with the Disability Federation of Ireland and the Centre for Disability Law and Policy of the National University of Ireland in Galway.


What is legal capacity?

Legal capacity can be described as a person’s power or possibility to act within the framework of the legal system. In other words, it makes a human being a subject of law. It is a legal concept, a construct, assigned to most people of majority age enabling them to have rights and obligations, to make binding decisions and have them respected. As such, it facilitates personal freedom. It enables a person to take up a job, get married and inherit property, among other things. It also protects the individual against some unwanted interventions. For example, adults with legal capacity can effectively refuse any medical treatment that they do not want to receive.

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