We are human beings too.

As a group of people with learning disabilities we are horrified and  deeply upset by the stories of people who are taken away from their families and placed in Assessment and Treatment Units far from home. It isn’t fair for people to be placed in units so far from their homes just because it is cheaper.

The stories we are hearing are heart-breaking. We are devastated to hear them.

Everyone has rights – we are human beings too.

We have rights to live where we want to live, to be close to our families and to be treated with dignity and respect.

When we read the Trading People report we felt let down by a system that doesn’t respect people with learning disabilities.

We want to see a totally different approach to supporting people with learning disabilities who need support.  We, people with learning disabilities are not an opportunity for profit for a private company – we are human beings and our care shouldn’t be about money but about our family, our community, our friendships and our relationships. What we need in our lives should be built on compassion and our human rights.

We want to see no more of these big institutions and units being built.

We want to see all people  with learning disabilities human rights being respected.

We don’t want to stand for it anymore – something’s got to be done!

We want to work with the right people to make this change happen.

Written by people with learning disabilities working and volunteering at CHANGE


The Power of Two!

To celebrate people with a Learning Disability Week, I have been interviewing Mister Shaun Webster, MBE. Shaun is a father and grand-father with a learning disability, who works as a Project Worker at CHANGE, an organisation working for the human rights of people with learning disabilities. We have been talking about a subject Shaun is very passionate about: co-working. My name is Alison and I am Shaun’s p.a.

You often work with a co-worker on national and international projects. What tips do you have for people who would like to co-work?

Working internationally is exciting and amazing and I love it! When we work abroad co-working is very important. We are role modelling a new way of working. Being a co-worker, I have to think about the person without a learning disability. She or he might be having a having a difficult day. If we don’t listen to each other, the partnership could become stressful and we might both have a bad experience.

It is always better to talk things over with your co-worker. I have learnt to be open, to reflect and to compromise. Also, my co-worker has to see me, a person with a learning disability, as an equal member of the team, not as a service user.

When a new person starts co-working with you, what are the steps to make sure that it works for both of you?

Talk to each other, find out about each other, look at our different skills, find ways to compromise, listen to each other. For example, I have a speaking problem. One of my co-workers couldn’t understand me and she would say ‘ I don’t understand you, Shaun’. I said  ‘ it’s good you tell me day-to-day, you didn’t bottle it up and not tell me’. That would have annoyed me very much.

Another good thing is to share tasks. When I am doing a presentation, I like to read some slides, and let my co-worker read some too. When we’re going through our emails, and replying to our colleagues, we discuss it together.

It’s not just about taking over and doing it yourself without talking to me about it, taking the decision out of my hands. I like us to work together, sharing our power. We are equal. You are not patronizing me, you respect me and you are honest with me. You tell me what works and what doesn’t. I might not like it but you’ve got to have your opinion and I have mine. We both listen and we both respect each other.

Why do you like co-working?

I feel like I am growing and getting more confident. We learn new skills from each other that we didn’t know before. We are learning to understand each other and to grow together. We compliment one another, we are like a machine, each part works and we are better together. We share our jobs and we do what we are best at.

We did a step-by-step plan of travelling on the underground in London. It gave me the confidence to do it on my own. We grow together and we grow apart.

How can an organization benefit from a team of learning disabled and non learning disabled workers?

A person with a learning disability has a lot of life experience and skills that he or she can share with the person without a learning disability. We get to really understand each other’s experiences. We might not have A levels but we have life experience that makes us good at working together and my knowledge of living with a learning disability is something you can’t learn.

What qualities should you have as a co-worker?

Some people just prefer to work on their own. You have to learn to be open-minded, flexible, respectful and good at communicating. Otherwise, it can be stressful.

Have you co-worked with another person with a learning disability and what was your experience of this?

The first time I co-worked with a person with a learning disability, we went to Sweden together. At first, it was ok, but over-time, I felt like she was taking liberties and not focusing on her work. I had to really manage the person, rather than co-work with her. This can happen with anyone, even with a person who hasn’t got a learning disability.

Co-working has to stay professional. There is a difference between a friend and a co-worker.

With Catherine, who works at CHANGE, and who has a learning disability and autism too, we decided to go to Croatia for some work. We planned it out and made sure we supported each other in the airport.

We were doing a video diary report of our experiences every day.

We sit down, we talk together. What are the things we need to do? What tasks that need doing? Catherine is good at doing questions and I can do filming. We created short video diaries about how we felt after we had been to the meetings. We planned it out. Proper co-working!

When we are doing networking, we back each other up. I am more forward doing networking. If I miss something out or somebody doesn’t understand me, Catherine steps in.

I would like to give one last example about good co-working. My co-worker recognized that I struggle when I get a lot of new ideas coming in my head. She takes notes of them all, and sometimes she needs to stop me in my speech, when this happens, I can lose track of my thoughts. She asked me if she could record me. I said yes! I feel like the ideas can flow out of me then, and I feel more confident. We found the right way of working together.

That’s what co-working is all about!




Eczema and Me and a brilliant nurse!

  I have suffered from eczema all my life. I have been in and out of hospital a lot because of it.

Recently, I suffered a serious bout of eczema and got infections on my legs and arms. The treatment I was using had stopped working and my doctor suggested the UV light treatment at the hospital for the first time because my condition was very serious.

On my first appointment, I was nervous because I don’t like tight spaces and I imagined lying down in a sunbed.  The head nurse was very helpful and friendly. I told her I had a learning disability and she talked to me in a professional and respectful manner.

The information I had received on the leaflet was quite difficult to understand but the nurse went through it with me, step-by-step. She took her time, she made the information accessible and she asked me if I had understood everything at the end of our conversation. I thought that was really good.

She then took me to the sunbed but it was a standing up one and it was very spacious. Not as bad as what I had imagined! I went inside it and she asked me ‘How do you feel?’ I told her I felt comfortable and not uptight. She told me that I would have to get undressed during the following appointment to assess the condition of my skin and for my first UV light treatment. At first, I felt uncomfortable and self-conscious about showing my body to other people, because of my eczema and because I am a private person. She reassured me and said ‘It’s nothing to worry about’. She made a joke which made me laugh and I felt better.

My nurse told me that before my first appointment, I shouldn’t put any cream or body spray on.  She reminded me and asked me if I had remembered this on my first appointment. She also warned me about possible side-effects of itching a lot after the first session.

I was able to book my appointments around my working schedule at CHANGE and am able to reschedule my work with advance notice.

I can tell that my nurse  really is concerned about my wellbeing because she noticed that the skin on my back was bad. She was concerned that I wasn’t being prescribed enough cream. She advised me to ask for a 1000 grms instead of 500 and told me she would support me in getting this if the doctor refused.

When you suffer from eczema and you have a learning disability, you can find it difficult to look after yourself. It can really get you down because you are itching 24/7. It’s an isolating condition because people can see it and you feel unconfident. It’s like having ants on your skin and you are always scared you will get infected. I also suffer from diabetes which can make me more prone to infections.

I feel so pleased that I am being looked after at the hospital. I feel listened to, that someone is on my side and that my condition is taken seriously. I am so happy about that.

Shaun Webster – Project Worker