I Never Admitted I had a Learning Disability………

ShaunI am Shaun Webster, European Project Coordinator in CHANGE. I am a person with a learning disability. From my heart I feel very proud to be working in CHANGE. If I didn’t have CHANGE in my life I would be stuck in a dead end job with no power at all. I would be feeling isolated and small with no one taking any notice of me. Now I feel powerful and equal. In the past I used to despise having a learning disability. I used to hide it away. I used to feel embarrassed about it because people used to call me names and abuse me. My dad was embarrassed that I had learning disabilities. If I said that I had a learning disability I felt they treated me like a baby and a second class citizen. Now I am proud that I have a learning disability. I feel that I am changing attitudes and making a difference. Now I feel like I am not alone. Before I was the only person with a learning disability in my job and I didn’t know anyone outside my job who had a learning disability. I felt very isolated. Moving into Keyring I felt less isolated then I got the job at CHANGE, it felt overwhelming that there were that many people with learning disabilities! Now I feel fired up, I am not scared to speak my mind. I used to keep my mouth shut. Now because of the work I do at CHANGE, I am not afraid to speak out and defend other people with learning disabilities. CHANGE gives me the fire in my heart to speak up. When me and Catherine went to Croatia as two professionals and co workers with a learning disability everyone asked if we were volunteers. We said we were both paid workers and people were gobsmacked! I was laughing and I felt proud and equal like I was breaking down all the barriers. In some organisations I go to its still them and us at the bottom. Now I’m starting to see the change, people like us taking their power. I’m seeing people with learning disabilities being more outspoken and not standing for it anymore. In grassroots organisations I see people with learning disabilities having a bigger say. People with learning disabilities are getting fed up of always doing volunteering too. I talk to people I know who say they work really hard and only get £20. They are asking me, ‘Why don’t we get paid like you do?’ Sometimes they are doing more hours than me and they are starting to question different organisations why are they just doing volunteering? I think organisations are scared of doing the next step. It still feels like it is them and us and we need to get away from that. I think that people are scared to lose power. If they keep us doing volunteer work we can’t answer back. Why are organisations so scared to do the next step? The volunteers in CHANGE feel like they have a voice through the paid workers with learning disabilities in CHANGE. We have our own opinions and we don’t get judged for it. We feel like we are treated with respect like proper professionals. When we are in meetings we are included from the beginning because the meetings are about us. If we get ideas we are encouraged to say them. Workers without learning disabilities ask us about accessibility because we are the experts – we have life experience. We want people with learning disabilities to speak up, sometimes people with learning disabilities are scared to speak up. We feel we might get into trouble if we speak up. This is why we are organising our National Event with Lumos on June 26 for all people with learning disabilities. My dream is to shut down institutions. We want to be a part of society and have a life like you have! The time is now I want everyone to treat us as equal citizens! Guest Blog by Shaun Webster


‘Hello Boss, Today you look like a Swedish Jewish artist!’ It’s a real joy to come to work and be greeted by Tony, before I even have a chance to take my coat off! No matter how many times I say that my name is Phil, Boss always slips in somewhere, another striking example of the ingrained institutional attitudes people with learning disabilities have towards power, based on their experiences.


This week at CHANGE we’ve been busy talking about two things; NHS Expo and the national Event: Our Voices, Our Choices, Our Freedom, that we are organizing with the children’s rights charity Lumos. We’re excited, we’re on the move, people with learning disabilities at CHANGE are changing things, taking responsibility,stepping out of the box.What an honour and a privilege to work alongside people with learning disabilities challenging social injustice and discrimination.


NHS Expo, hosted by NHS England, was a huge health event ‘designed to give everyone the tools and the inspiration to make positive changes in health and care’. People with learning disabilities from CHANGE gave presentations and ran a workshop on how we work and the importance of good communication and easy read information. I witnessed the power and the intelligence of people with learning disabilities from CHANGE making connections, challenging assumptions, giving presentations, and courageously speaking out about their health rights.


A chance look at the learning disability forum and seeing a conference in Bucharest, Romania, a phone call to Lumos, shared visions and an openness and belief that things have to change started our journey together. We employed co-workers, one a person with a learning disability and an illustrator who work with Lumos. They travel to Eastern Europe making information into easy read, delivering training to policy makers, role modelling and working with young people with learning disabilities leaving institutions, guiding learning and sharing. Back to the UK bringing back lessons learnt. Sharing thinking about closing institutions and how to empower people with learning disabilities in the process so that they are no longer passive but actively involved in their journey towards more independent living.

photoShaun came up with an idea of research led by him a person with a learning disability, on the experiences of people with learning disabilities leaving long stay institutions. Shaun believes in and recognizes the power of sharing stories and history with each other. From the UK to Eastern Europe people with learning disabilities empowering one another and learning through their stories and their shared history of oppression, peer led, supporting their rights and their empowerment. People with learning disabilities using and learning from their real stories to make change happen.


On June 26th CHANGE and Lumos are organizing a national Event in Leeds. It is led by people with learning disabilities for people with learning disabilities: Our Voices, Our Choices, Our Freedom. A national Event demanding the closure of institutions in the UK and across Europe. It’s a movement for change, the collective voice of people and activists with learning disabilities demanding that their voices be heard and their freedom and their rights respected. We are organizing similar events with Lumos for children and young people with learning disabilities in London and in Europe.

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This will be a force for future change leading the way forward by people with learning disabilities themselves. Norman Lamb Minister of State for Care and Support is coming to the Leeds event and people with learning disabilities will be taking their demands to Government.

Please tell all the people with learning disabilities you know about it and please work with us and Lumos to support people with learning disabilities to make change happen.