We need good support to live independently – Report about a self-advocacy conference in Hungary

The Hungarian Association of Persons with Intellectual Disability (ÉFOÉSZ) organized a self-advocacy conference on the European Independent Living Day.

We need good support to live independently - Report about a self-advocacy conference in Hungary

The Hungarian Association of Persons with Intellectual Disability (ÉFOÉSZ) organised a self-advocacy conference on the European Independent Living Day. 70 persons with intellectual disability and supporters celebrated in person and many joined online. The speakers were self-advocates from Hungary and Austria, including board members of Inclusion Europe and Steering Group members of the European Platform of Self-Advocates (EPSA).

The main topics of the conference were self-advocacy and supported decision-making. Self-advocates talked about what kind of support they need in order to make decisions and speak up.

László Bercse, chairperson of EPSA and Vice-President of Inclusion Europe explained what self-advocacy means and introduced the work of the European Platform. “Independence is crucial. We can only thrive if people around us provide support, but also give us the chance to decide independently.” – said László emphasizing the role of good support.

Oswald Föllerer is a self-advocate from Austria, and is also a member of Inclusion Europe’s Board and the EPSA Steering Group. Oswald is one of the founders of People First Vienna. He talked about the advocacy work they are doing in Austria in order to involve people with intellectual disability in policymaking. For example, in 2018 they took part in making the new adult protection law, formerly known as guardianship law.

Andreas Zehetner, another Austrian self-advocate member of Inclusion Europe’s Board and EPSA Steering Group shared details about the adult protection law. The former guardianship law meant a barrier to independent decision-making, while the new law makes sure people get the right support when making decision. There are four different types of adult representation that can be used, depending on the person’s need of support. There is one key element that applies for all of them: “People only get representation, if they want to or if it is really necessary to avoid harm.”– added Andreas, who is also a member of the Self-Advocate Council of Lebenshilfe Austria.

After the speeches a roundtable discussion took place, which was about supported-decision making and good support.

Éva Molnár, a self-advocate who participated at the discussion said the following: “For me independent living means, that I can make decisions about my life. We need good support to live independently. A good supporter lets people make mistakes. Everyone makes mistakes sometimes, not just people with intellectual disability.” – Éva told, than talked about the times she was under guardianship. She said she felt free and capable since her guardianship had ended. She can do things, she could not have imagined doing earlier, because she has not had the chance to try.

Zsolt Cziráki is a self-advocate, who teaches easy language in a university. He emphasized the role of easy-to-understand information: “Accessible information is crucial for decisions. How could we make a decision, if did not understand what is it about?”

Self-advocates were eager to share their experiences with each other and to know more about the work of their Austrian colleagues, which resulted in a fruitful conversation.

Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.

This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.

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