Many people with learning disabilities know what it’s like to spend time in an institution. That’s why their voices should be heard above all others in the campaign to get them closed. Rosemary Trustam attended a conference at which the rallying cry was: “It’s our freedom”.
Our Voices, Our Choices, Our Freedom was a one-day conference organised by CHANGE and Lumos.
CHANGE is a leading national human rights organisation led by disabled people based in Leeds which employs people with learning disabilities. Lumos was set up by J.K. Rowling when she learned that children in institutions in Europe were being held in cages. Lumos, the spell from Harry Potter which sheds light in dark places, aims to shine light on institutions to get them closed and children cared for in their family or substitute family.
The aim of the conference was for people with learning disabilities to share experiences and views – both of institutions and solutions – and to develop their proposals on closure of institutions to take to Government.
The conference was chaired jointly by Catherine from CHANGE, a mum with learning disabilities employed by CHANGE to train professionals in parenting, hate crime and sex and relationships, and Gavin Harding MBE, founder of Voices for People, a representative on the Winterbourne View Joint Improvement Board and a local district councillor, recently appointed Selby’s deputy mayor.
Shaun Webster, a project coordinator and lead on the joint work with Lumos in Europe at CHANGE, has been helping Lumos to develop the voices of children and young people giving them the benefit of CHANGE’s expertise in peer support, communication and co-leadership.
Shaun described himself as a parent, grandparent and a person with learning disabilities. He told delegates that he worked, lives on his own, has learnt to speak up for himself and knows people look up to him and respect him. “Although some of you may feel you have less power than me, I didn’t always live like this”, he said. He described how he used to be treated like a child, often felt scared, worried he would lose his support and never believed he could ever live on his own. He had no confidence as his support worker held the power and determined what he could do.
Bullied
Shaun got a job in a warehouse but wasn’t allowed to try out other parts of work and he was bullied. Things changed when he got a good support worker, properly trained who respected him, took time and asked what he wanted, valuing his opinions and believing in him.
Working for CHANGE on the same pay and an equal basis has given him confidence and developed his skills. He knows his rights and has the freedom to decide how he wants to live his life, speaking out if he’s not happy.
Shaun spoke passionately about the power of coming together and supporting each other to have a voice and about people being included as equals and experts, not given token involvement. “Today is about closing down institutions. People’s ideas are needed about what should happen after Winterbourne,” he said.
Institutions are usually big buildings with strict rules and routines, where people’s ‘choices’ are dictated and their rights to a private family life denied. Georgette Mulheir, Chief Executive Officer of Lumos, spoke of the damage done to children, particularly the most severely disabled and poorest whose families can’t afford to visit. “They are scarey environments with lots of abuse,” she said. Without the experience of making small everyday choices, young people struggle to make bigger choices, such as where they want to live. They have to learn to be free.
Like a prison
Expert by experience Daniel Doherty started his journey in a foster family but at six years old “I did ‘something I shouldn’t have done’”, he said. He was told he was going on holiday but was sent to an institution where he lived until he was 16 years old. “It was old, dark and damp – like a prison”, he said. He had no idea why he was there and had lost his friends. Going out was a privilege and allowed ‘only if you were good’. If you were bad you were put into a quiet room for punishment. There were no choices. You could be punished for asking too many questions.
During the Queen’s Jubilee celebrations, when Prince Charles came, people were doped up to stop them saying anything embarrassing. They had to share baths so bathing was usually in dirty water. Food was ‘like porridge’. Nothing personal, like pictures, was allowed. “I felt like an animal and that the only way I would get out would be in a box”. Their only freedoms were coded songs they sang to warn each other of approaching staff – for example, if people wanted some privacy together.
When the institution closed in the early 1990s under the Community Care Act, he was placed without support in a communal flat, away from an older friend who has since passed away. Although Daniel’s life has changed now and he has a lot more choice and control he still has bad dreams and wakes sweating.
It’s easy to forget just what happened to people in institutions and what can still happen even in smaller services that take control over people’s lives.
These are some of the delegates’ comments :
“They made me have my hair cut and hide under the bed when my sister came”.
“I was only told last minute about the institution closing“.
“Staff on one shift were very good, but on the other shift had a different approach and that’s when the problems started”.
“I didn’t know the institution was closing – no one told us; we were just moved”.
“I didn’t like having to share in a dormitory – one lady used to bang on the door – it was very upsetting and scarey”.
“When I went into meetings I didn’t understand what they said all the time”.
“I couldn’t put pictures of my family up on the wall”.
“I didn’t get the choice to do things I wanted to do – doors were locked and I needed staff to go to the shops”.
“I didn’t talk about my worries with staff or family as I didn’t want to worry them”.
“When I moved I didn’t know what it would be like until I was there”.
“Worst was being far away from my home and family. It wasn’t easy to talk to staff as they put things in the day notes”.
Messages
Care Minister Minister Norman Lamb was unable to attend because of a family bereavement. He sent a video message promising a summit meeting in September to hear delegates’ proposals. However, Zawar Patel, the DoH lead for learning disabilities, was there and heard the messages.
The delegates’ message “It’s Our Freedom” and the conference activities were spread through social media with the twitter hashtag #voiceschoices seen over 1.3 million times during the day.The conference title became a rallying cry shouted out by delegates illustrated further by a conference song, ‘We have the right to live our lives; We are proud disabled people…’
owerful feelings – indignation and anger that abuse is continuing both in institutions but also in the community where services were being cut – were expressed. There was also a knowledge and confidence of their rights and the need to speak out to ensure they get them.The energy of the day was felt too through the delegates’ contributions to the debate – from the floor and within the workshops – which led to the development of the demands they wanted to present to Norman Lamb.
http://www.changepeople.org/blog-and-news/our-voices-our-choices-our-freedom-conference-presentations/
What people want from the government
• They should stop building new institutions – use the money to support people in the community;
• Everyone to have opportunities for jobs, with training of health professionals mandated to have someone with a learning disability involved in delivery;
• People with learning disabilities to be employed in care and involved in the whole process including the top level of work and checking services – and to be paid for it;
• There should be no residential homes for people with learning disabilities and people should be offered ordinary housing;
• People should be helped to develop confidence, be introduced to new experiences and have someone to stand up for them or help stand up for themselves;
• There should be more role models of people with learning disabilities;
• Things should be made more accessible.
