Partners in mental health

WHO

Self advocates endorsing the Declaration “Better health better lives"

“We are serious about what we do. We want to change the world, and we want to do it now … .”

– Shaun, a parent with a learning disability

People with intellectual disabilities (self-advocates) took an active role in the WHO/Europe conference on “better health, better lives”, held in Bucharest, Romania in November 2010. At the conference, the 53 Member States in the WHO European Region, WHO and the United Nation’s Children’s Fund (UNICEF) endorsed a declaration that established the right of people with intellectual disabilities to attain the highest possible level of health.

The declaration is an important step towards protecting and promoting the rights of the most vulnerable people, a continual focus of WHO’s work. WHO seeks to support countries’ efforts to create environments where patients are partners in decision-making about their treatment and care.

The self-advocates present at the conference described their experiences and the differences that the declaration can make to the challenges they face.

Shaun

“I want to help out and can’t stop thinking about it. Senada really got me thinking. I was talking to my two oldest kids about it and they said to me, if you were born in [Senada’s country], we would never have been born. I told my mum and she was shocked, as she raised me and my brother on her own. She said, if we were living in [Senada’s country], because I have learning disabilities, I would have been taken off her and been raised in an institution. It really moved my mother and my kids. It really moved me. I want to use my experiences to help people.”

Shaun Webster, a parent with learning disabilities, has worked for CHANGE, as a human rights and self-advocacy trainer, speaker and campaigner for seven years. CHANGE employs people with learning disabilities to work for their human rights.

Senada

“I ached, I hurt so much when I left home after the holidays to go back to the institution. In the institution there was a fenced courtyard. When I went to the fence, I saw the other children and I wanted to be with them”.

“I am very impressed with Shaun’s story, that he has 3 children. In [my country] it is forbidden to have a romantic relationship, let alone start a family of their own. In the institution it was common for women to get sterilized so they could not have children. Those in an institution who fall in love are separated and not allowed to have private time together.”

Senada spent a big part of her life living in an institution; she now lives in a small apartment provided through a community-based housing programme. She is working in the Association for Self Advocacy (ASA), and advocates that all people with intellectual disabilities be equal members of society.

In addition to working with ASA in Croatia, Senada also represents ASA on the board of Inclusion International.

Grace

“I work for TESCO supermarket, and in the kitchen at my mother’s work, I work. I grew up in a family and I feel really lucky. My mum, dad and Laura, my carer, are very important in my life. I know other people are not as lucky as I am, and it makes me feel very sad.”

Grace lives on her own, independently, and has started living her own life as an adult.

Gary

“One thing I’ve learned from this conference is that a cross-section of people all over Europe all are fighting for some common cause in our countries. I feel very proud we could get together in one place and learn from one another. I am a training adviser, to train people to be more aware of people with learning disabilities, and try and get them to listen and be more knowledgeable of our needs.”

Gary now works at training doctors to communicate better with people with learning disabilities.

Ioan

“I was happy to come to the conference and meet people from other countries – I never spoke to people from other countries before. It helps to share and see others have the same challenges.”

Now 18 years old, Ioan lived in an institution from his birth until 2003, when the institution closed. He then moved to a small family home with 12 children. This is a house with staff working in twenty-four-hour shifts: educators, nurses, etc. A charity supports this work by taking the children on trips, and providing educational support and training for the staff. Ioan now attends a special school.