From Rotherham to Bangkok and back!

My name is Shaun Webster. I am a parent with a learning disability and a grandad. I am an International Project Worker at CHANGE. I want to share my experience about my life with you, from the past working at a large retail company, when I never left Rotherham, to now being a role model for other people with learning disabilities.

When I got a job working at this large shop it was fine at the beginning. When I wanted to do different jobs they said ‘Yes’ at first, but they never followed it up. My job was sweeping up, packing and taking boxes out to customers. They didn’t trust me to do nothing else. I started to get very bored. Most of the time I was sweeping up and getting jobs nobody wanted to do. They used to abuse me physically and mentally because of my learning disability. They used to call me…I hate this word, ‘retard’ and ‘spacca’. They used to lob things at me and sometimes it hit me on my head. I used to get very down and I felt very small like I was less of a human being. I thought,’ I’m going to be here in Rotherham all my life and I’ll never go anywhere’. I told my supported employment agency how I felt working here but I only saw my support worker twice a year and nothing got done about it. I told the manager at the shop too, but when I told him, it was a bit better for a week or two and then it got worse. I just felt they didn’t want me there because I’ve got learning disabilities and I was just someone to abuse.

I moved from my brother’s house into Keyring, a housing organisations for people with learning disabilities to live independently in the community. I talked to my support worker there about my job and I told them I was looking for another job. My support worker got me promoting Keyring and I thought I was quite good at that. One of my friends was going for a job at CHANGE and he told me about another job at CHANGE. I had the interview. I’d never been further than South Yorkshire and had never been to Leeds before. I travelled on the train on my own, that was new for me!

I got the job! I felt I’d won the lottery!! I felt that I was escaping from the hole I was in. I told the retail shop ‘Goodbye’.  I was really happy, although things got even worse in my last month. On my last day they tied me up and put a sock in my mouth. I felt very demeaned and abused. They kept saying to me, ‘You’ll be back here’. I thought, ‘No I won’t’. The first thing my boss at the shop asked me was how much money I was getting, he told me how much he was getting and I was getting more than him! He were annoyed!

At CHANGE there were a lot of people with learning disabilities on proper paid jobs. I felt overwhelmed, I’d never seen so many people with learning disabilities working before, I thought I was the only one. I’d never worked as a co-worker before. At first I thought my co worker who didn’t have learning disabilities was my boss! I was used to people who didn’t have learning disabilities mentally abusing me, I wasn’t used to being respected.

When I started working at CHANGE, I started to learn more about myself. I didn’t realize the skills I had! I started travelling to Leeds on my own and getting more confident with that. CHANGE looks at the skills we have. They look at what we can do. They want us to learn new skills but they don’t judge us on what we can’t do. CHANGE have patience with me, they don’t judge us, they respect us. CHANGE wants us to have power and independence and confidence in ourselves.They want us to run training but they teach us the rights skills so we can do that. CHANGE supports us to have a real voice when we are talking to professionals. Sometimes we feel angry with professionals and MPs but CHANGE shows us how to put our message across  in a respectful way, how to talk to them like an equal. CHANGE helps us understand what having power, rights and equality means. Together we make sure that people who don’t have learning disabilities work equally with us. We make sure that people with learning  disabilities know about having power. We make sure we speak up for ourselves. We do training around what is power and what it means to us.

I didn’t know how to network or give presentations before I worked at CHANGE, but CHANGE gave me training and skills to do that. Working at CHANGE gives us self belief, as many of us don’t believe in ourselves. CHANGE supports us to learn how to use our life experience in our work. Before coming to CHANGE people used to talk for me all the time. They can’t shut me up now! CHANGE supports us to take risks, we do make mistakes but we learn from it, CHANGE doesn’t judge us, we learn from it and we do it better next time. Often people with learning disabilities are judged on their mistakes and aren’t allowed to learn from them.

I’d never been to London before I worked at CHANGE, then I went with my co worker to meet other people with learning disabilities there. I was overwhelmed how big London was. I met so many people with learning disabilities I couldn’t believe it. It felt absolutely great. Making new friends and working and training together, I felt really respected. I started to feel like a role model.

Then Philipa asked me if I wanted to go to a conference run by the World Health Organisation in Romania with Lumos. I worked with Lumos and we ran a group together for young people with learning disabilities who had been in institutions. Then I supported the young people to speak at the conference. The young people were happy I was there supporting them. I was a role model. I didn’t take over. I supported them to speak for themselves. I also spoke at the conference and said, ‘Listen to us!’

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Next I went to the Czech Republic, then Bulgaria, Moldova, Croatia, Northern Ireland, Brussels, Portugal, Sweden, Switzerland and Serbia! In all these countries I was training professionals to work better with children and young people with learning disabilities and supporting the young people to speak up for themselves.  Oh and I went to America on my holidays… twice! I couldn’t do that before as I didn’t have the confidence or the money!

 

 

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When I went to these countries it got me thinking that if I talk to people with learning disabilities in the UK who had lived in institutions, they could tell me about their experience of leaving institutions, what worked and what could be better.  I could use this research to share with people with learning disabilities in Eastern Europe and to train professionals in these countries.

 

 

I want to tell you about Croatia now. Catherine, another person with learning disabilities who works at CHANGE and me went on our own to a self advocacy conference in Croatia. I felt so proud that we were breaking down barriers. Other people with learning disabilities aren’t used to seeing people with learning disabilities on our own. They’re used to seeing us with support workers. Everyone said, ‘Where’s your support worker?’ I said, ‘We haven’t got one, we are proper paid workers’. At first people didn’t believe us, then they did. I think they started to question themselves, why aren’t we doing the same? Why don’t we have a proper paid job? Catherine and me were role models and we got the people with learning disabilities at the conference to question and believe in themselves. They started to ask us a lot of questions.

This Saturday coming, Catherine, myself and Philipa are going to Bangkok. This is the furthest place we’ve ever been. Catherine and me are training 40 people from across the world including from across Africa and South America who are working for an organisation called CBM. We’re training on Inclusion, employment, how we work at CHANGE and making information accessible. I’m feeling a bit nervous and I’m looking forward to it too. I’ve ordered my money and I’m starting to pack as it’ll be hot. Now we’re planning the training. When we’re there we’re also visiting a national organisation in Thailand for people with learning disabilities. We’re breaking down barriers, getting people to believe more in people with learning disabilities and what we can do.

I feel I’ve got a lot of power and self confidence now. I don’t feel scared and I believe I am making a difference across the world. People are seeing people with learning disabilities working and running training. This proves that we can have a piad job. We can run training and we are role models. People aren’t used to seeing people with learning disabilities in power. We’re breaking down barriers.

My message to you is this; I am a person with learning disabilities coming from nowhere with no power and no self respect. I didn’t know about my human rights. Now look what what I can do! I feel fired up! I feel I have power. I am a powerful leader. I am really making a difference! Other people with learning disabilities can achieve great things too. Just look at what we can do!

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Live in Our Shoes for a Day …….

My name is Kenneth Fletcher and I am a paid worker at CHANGE. I am developing a pack for when people with learning disabilities leave assessment and treatment units. It’s called a Discharge Pack at the moment, but we’re going to change the name because we don’t like the name Discharge Pack. I have a learning disability. I wanted to work on this project because I used to live in a care home that felt like an institution.

Working on this project has made me realize that there are a lot more institutions out there and they are worse that I thought they are. I was surprised there are so many after what we heard about Winterbourne View. At CHANGE people with learning disabilities are talking together and thinking about what is an ‘institution’. My other work colleagues all have different experiences and thoughts of what an institution means. It means different things to different people. But, we all agree on some things and these are the things that should never happen to us and to other people with learning disabilities.

There are some things that make a place dangerous and institutional. Here they are….When where we live is not being decorated like a normal home. When we are not allowed to have personal things on the walls. When we are not allowed to have our own opinion in the house. When you’re not allowed to go to bed when you want. When you’re talked into doing things you don’t want to do.

The staff  and the managers always have the power over us.

Professionals often think firstly about the money what they can and can’t afford. They often don’t want to pay for us to have a better life.

A lot of staff in institutions hide how they are when other professionals like social workers come in so they don’t get found out how bad it really is.

You need to have a really good social worker for them to actually listen to us.

An institution can be anywhere. Some institutions can be massive hospitals but they can also be on industrial estates and even in normal streets. What makes an institution is not only the building but how we are treated and respected as individuals living in the building. It is definitely how its run. Sometimes the staff call us dangerous and they call us the problem, but we feel its really them who are dangerous to us and they are often our problem. Because they have a job they have more power over us. If we need support this gives them even more power. They use that power over us to their advantage by saying: ‘if you don’t behave you can’t go out’.

So how can we work together to make things better?

The answer is to have more houses in the community with no gates or signs on the outside. Better training by people with learning disabilities who have lived in care homes and institutions and who are paid properly. People with learning disabilities working in the houses to support other people with learning disabilities and to help us stand up for our rights and say, ‘ No. That’s wrong’. As well as being our Peer support worker they also need to work with managers as managers often don’t listen to us.

Social workers are important too. We need a good social worker to support us and back us up. Even having loads of training does not mean you do what the training says, so we need to do work there too. It needs to be harder to get support work so that people who work with us who don’t have learning disabilities really want to do the job.

My message to you is: Start employing people with learning disabilities on the same wages as other staff to be Peer support workers.

Employ us to train your staff before they start the job.

Live in our shoes in a care home or an institution for a day, a week, a month, a year and you will see how we feel.

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A Time for Change………

 

I’ve recently come across an interesting book that questions how much we take in, how much we see and understand of the immediate world around us. I love being outside, going for walks, growing vegetables and being in the wild, but I suddenly realised how few trees I actually know the names of. How limited my knowledge is of birds and wild flowers. How many times I go for walks and don’t actually see what is right in front of my eyes. Suddenly I looked up and saw the vast beauty of the sky!

I think this happens to us all the time. What are we failing to see that is happening right in front of us? How often do we fail to spot different ways, different opportunities?  Sometimes the answer is right there, right in front of us, but we fail to see.

Changing our ways of doing things and patterns in our own lives is often really hard challenging and frightening. We then take this  fear and fixedness of change into our work. If the world around us is changing, then to be fixed and in control in some areas of our lives can feel great, necessary even, but what if it is at the expense of the people we are employed to make changes with and for?

It seems that there is something deeply fixed and rigid in how we work with and support and even see the potential of people with learning disabilities. How many times do we really have the courage to evaluate a service we are delivering? I think particularly with people with learning disabilities there is often a dogged determination to keep going, heads down, staying in control – unless of course something really huge and devastating happens like someone dies a preventable death. Then our shock and our outrage propels us to stop. Look. Try to change things. But within a culture of not-changing – of avoiding deep systemic change – then change itself becomes an overwhelming challenge and the temptation to play around the edges becomes too compelling.

Why don’t we stop and look, really look and see that some of the organisations that are already here are truly brilliant and inspiring. They have potential and hope to become the source and inspiration for change. There  are many examples but I want to look at those organisations that are working within the grassroots of people’s daily lives.

We know and many people have written and documented the serious lack of funding for advocacy and self advocacy. We know there are many self advocacy organisations struggling desperately to survive. How can it be that the Rights based organisations that should and do play such an important role in the lives of people with learning disabilities are the very organisations that are struggling to exist? Organisations where people with learning disabilities feel safe. Organisations brimming with complex knowledge and understanding from the unique and precious expertise that can only come from lived and real life experiences. Organisations we are all saying should be here above many others, organisations representing the strong and passionate collective voice of people with learning disabilities. These are the organisations who are folding while we stand by. How on earth can this make sense? Why are we allowing this to happen?

The changes to the Care Act on advocacy are very welcome, however in order for it to work, we need to work in relationships of equal paid partnership with self advocacy organisations with local authorities to change their priorities and ways of thinking.

CHANGE has  been working with self advocacy groups across the country training and empowering people with learning disabilities on how to quality check accessible easy read information that is used and developed by health and social care organisations in their regions.

We are working with many brilliant, determined, knowledgeable, awesome self advocacy organisations, supporting  them to use their knowledge and expertise and connect with each other, us and you. We are trying to bring them and their expertise into the light. We’re supporting and working with these self advocacy organisations to become without exception the heart and the leaders of what is happening for people with learning disabilities both locally and nationally.

CHANGE is working with self advocacy organisations to have a strong powerful collective voice that is heard and acted on. Many self advocacy organisations want to start to employ people with learning disabilities on a living wage. Employing people with learning disabilities to use their knowledge and expertise across services and be paid for it, properly paid, as we all are, many of us on high salaries.

Article 19 of the UN CRPD (United Nations Convention on the Rights of Persons with Disabilities) aims to remove all barriers to full inclusion and participation in society of Disabled People. It talks about a fundamental shift in the way we can achieve this by outlining a series of tangible obligations to achieve independent living and inclusion in the community. These obligations place disabled people, including people with learning disabilities at the heart of all policy making and decision making processes that affect them.

The recent Bubb report: Winterbourne View – Time for Change, focused on people with  earning disabilities having choice and control. A powerful example of this is the  Voices Choices Freedom event we organised with Lumos last June. From the event we took the views of people with learning disabilities to people with the power to change things at a Summit meeting hosted by Norman lamb and attended by many powerful leaders including Simon Stevens CEO NHS England. People with learning disabilities do know what they want and the biggest change would be for people with learning disabilities to be employed as peer support workers  and leaders in their own services supporting each other. We’re working with NHS Employers and others,through the Summit meeting to take this forward.

 

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There is an important and vital role that I believe is essential if we are to create a paradigm shift in the lives of people with learning disabilities, that self advocacy organisations must have. But to do this we need to question ourselves and the roles of the organisations we are representing, we need a collective courage and humility to question our own power and attitudes. And we need to step aside.

 

We need to start collectively thinking of how and where we can find the space for self advocacy organisations to take the lead up and down the country, so that they too can become sustainable, their knowledge and expertise paid for.

There are so many opportunities that would be transformational if we look and take courage to try a different way. We often talk about allowing people with learning disabilities to take risks, let us take the risk by giving up a bit of our own power and control.

Let’s work together so that this year we share our resources. Let’s work together to find the space that truly supports the voice ,the power, the money and values of the essential place that self advocacy organisations should and could have across the country.

If self advocacy organisations can be paid like all the other organisations to become the infrastructure and leaders that services must answer to, maybe this will create the sea change we are all desperate  for.

Let’s work together to make 2015 be the year we find our collective courage and humility to make this really happen.

Shaun Webster, Project Worker International at CHANGE and a grandad with learning disabilities says: Some organisations are too scared to let go. Sometimes we feel like puppets and we don’t have the freedom to do things for ourselves with our own agenda. Let us do it for ourselves. Let us be leaders of ourselves and Peer to Peer support workers. You think we can’t do it but we can!

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