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

Lee’s Story – My Fiancee

I am Joanne and Lee was my partner of a year. We were going to get married and we were in love. Lee was the most important person in my life, we loved and supported each other. During our time together we went to Nottingham for Lees’ brother’s wedding, we did the 10k fun run together, we’ve done a few runs together and it was fun!

Lee was kind, caring, supportive and he used to make me laugh.

Lee lived with his parents til he was 18 then he moved out of his parents house into respite where he started to learn things about living independently like how to cook. He liked living there but as it was respite care he couldn’t stay here for long, he wanted to stay but he had to move. Lee then moved into Supported Living. He lived here with 2 other people who were already living there but felt that he had no choice so he wasn’t happy.

I first met Lee while he was living in the Supported Living home, and he told me that he didn’t feel well supported. The staff didn’t ask Lee what he wanted they made him do things.

The staff in the care home never let me stay over, I am 40 and Lee was 36. We wanted to sleep together and share special moments together but we were never allowed. I felt this was a human rights issue, it felt horrible, the care home had all the power.

The first time that Lee and me slept together was at his brother’s wedding which was in April of this year. It was so lovely, we were free, there were no staff around us telling us what to do, I will always treasure that time.

Last week Lee died suddenly in his bed.

I am devastated, I miss him so much. Lee was the love of my life. That’s why I want to write this blog in memory to Lee.

I want all of you who work in health and social care, to read this blog. In memory to Lee, please learn from this and support us, people with learning disabilities, to have loving relationships which are just like yours. We want to be able to sleep together and have special moments on our own. We want to wake up together and spend all day in bed together if we want.

 

This blog is dedicated to my love, Lee.

 

We must create a revolution

When I was 16 years old my school set up for me to do voluntary work in Normansfield Hospital for people with learning disabilities. I will never forget walking into the children’s ward completely full of small cots in rows with children of all ages. All the children seemed to be wailing and some were being fed cold mashed potatoes whilst being tied to their chairs or cots.

I remember feeling sick in the pit of my stomach. I felt that I had unwittingly walked into a sort of living hell. An underworld of torture hidden from view. I couldn’t face going back and I never knew what happened to those children although I do know that the hospital was closed down.

I won’t tell you how many years ago that was…! Fast forward to a few years ago when CHANGE started working with the children’s rights charity Lumos across Eastern Europe towards the closure of institutions and the setting up of community based services. Shaun, my colleague and CHANGE’s International Project worker who himself has a learning disability and myself, found ourselves visiting institutions in many different countries. When we returned to the UK we saw the secret filming of Winterbourne View. Like everyone else I felt horror, guilt deep sadness and a responsibility to change.

Then we waited for change to happen. It has been well documented that there were concordats, meetings, more meetings, lots of commitment but no real change.

Two years ago at CHANGE we held a national event for people with learning disabilities to have a strong united voice around the closure of ATU’s. Over 100 people with learning disabilities came to the Our Voices, Our Choices, Our Freedom event from across the UK. They came up with a set of proposals for change. People with learning disabilities took the most important proposal to the first ever Summit meeting for people with learning disabilities hosted by the then Care Minister Norman Lamb.The heads of NHS England, Department of Health CQC, policy and government were there from across the board.

The most important proposal, the proposal that people with learning disabilities felt would create the most radical change, shift in power and transform their lives and their services, was to employ people with learning disabilities in co delivering their own services.

Simon Stevens from NHS England understood the importance of the message and as a result of listening to people with learning disabilities he included the employment of people with learning disabilities in his 5 Year Forward View. People with learning disabilities were employed in the Transforming Care and Learning Disability Engagement Teams and NHS England produced a Toolkit supporting employers in the NHS to employ people with learning disabilities. They have also employed a worker to oversee this work.

Last week I went to a national conference on Transforming Care. It was inspiring! A conference packed with professionals committed to working smartly, quickly and sometimes riskily to close ATU’s and move people with learning disabilities back into their communities. But I’m worried that this change is not enough. Will this really create the shift we need so that in 10,20,30 years time we won’t have institutions as an option for a place to put and forget about people with learning disabilities?

Over my lifetime I have seen lots of changes in services for people with learning disabilities but is it real sustainable change? Has the power shifted away from professionals to people with learning disabilities? For this to happen we must use the transforming care agenda as an opportunity to start to employ people with learning disabilities throughout the system, not as porters and in canteens, we know that people can do this, but using their skills and expertise to co develop and co lead this transformation of services.

The fact is we need to face our own uncomfortable truths about ways we unintentionally hold onto our power. We have to try and understand why we do it. For me I’m relearning not to take over, to take risks, to make mistakes, to not think my way is necessarily the right way. I  question what ‘good’ looks like and try to be prepared to not feel too defensive and uncomfortable when my power is challenged. We need to change the power dynamic of people with learning disabilities as passive recipients of services, often too scared to speak out about the routine everyday denial of their rights. We must share our own power and we must do this by employing people with learning disabilities to co deliver and co develop their own services.

At the Transforming Care event I met Sharon Jeffreys, head of commissioning in Lincolnshire.In Lincolnshire they get it. In Lincolnshire they really are co creating a system and cultural change by properly employing people with learning disabilities in their commissioning team to advise and guide commissioners on service delivery and to oversee and agree the commissioning process.

We cannot wait for this change to happen. It must be now.We must be the change so that our legacy will be to know that because we have employed people with learning disabilities as co deliverers of their services, long after we have gone, and all the Transforming Care teams have finished their work, we will have left a changed culture that we will have co created together.

The only way that Transforming Care can be sustainable and the horrors we have witnessed to never happen again is to employ people with learning disabilities to work alongside ourselves. We have to do it. We must do it now. We must create the revolution.

“No real social change has ever been brought about without a revolution….revolution is but thoughts carried into action”.  Emma Goldman

 

Stuff You Beverly!

I went to a special school because I have a learning disability. I didn’t get any sex education there. A coach used to pick us up, everyone knew it was a special school. There was no curriculum and there were people with different disabilities there.

It was awful that there was no sex education but I was lucky because once swimming got cancelled and they shoved on a sex education video to use up the time. I didn’t understand it and I kept holding my plastic bag with my swimming gear and Mrs.Kirkil told me off. Mrs Kurkil said I was awful at art. This is the only time that we had anything to do with sex education at school.

Not having sex education at school meant that I was very vulnerable when I left school, I felt held back. I didn’t know about periods coz mum never talked about those things.When I started dating at 22 and a half I didn’t know anything about sex or relationships. My boyfriend had a learning disability. He was kind to start off with but it all changed when I had children. My boyfriend asked me if I could have children but I didn’t know. I wasn’t a mumsy person at school I was more a tomboy! When I had children the mum part came out of me. It completely changed my views and my personality because I had this child to look after.

I think sex education should be on the curriculum for everyone, people with learning disabilities can have relationships. Everyone needs somebody in their lives, friends or partners. We need connections and we need each other to talk to. Some of us live in isolation, this must be a lonely life.

When I left school I did an adult learning course for eighteen month for admin level 1. I didn’t get my qualification even though I worked really hard. When I didn’t get it I though ‘Stuff you Beverly’ I’ll get my qualification another way! And I did!!

I like where I live, I like my life, if I could tear it apart I wouldn’t have had those bad experiences but that wouldn’t make me the person I am today.I’m a good listener, patient, I can understand other people and support them, I’m clever, I’m always coming up with great ideas for projects! Because I have aspergers I can spot tiny details and I love that I can do this! I have a great mentor at CHANGE, he’s a person who has autism and he helped me understand some of the signs of having aspergers. We both talked about how we are in the world. I had someone who really understood me, I felt supported. I could talk to someone who really understood what it’s like to have aspergers. That’s why we believe that Peer support is so important because a person with a learning disability is using their experience to support another person with a learning disability, we both feel good!

If you were a superhero,what would your superpower be?

My name is Sarah, I am a project worker at CHANGE. My co workers are Ben and Sarah. Together we are working on the Quality Checking project for NHS England and a national consultation for the Care Quality Commission. This is my first blog!

At CHANGE we co deliver training across the UK and internationally with professional trainers with learning disabilities. We make sure that the workshops we co deliver are inclusive, interactive and fun places to discuss issues, try out new ideas and learn new ways of doing things.

At a recent training day,  we started the day off by asking the question:

“If you were a superhero what would your superpower be?”

When we asked the non learning disabled participants this question they said:

The ability to fly,  To have a super speed,  to be able to mind read, being invisible, the ability to time travel

My superpower would be: the ability to stop time. I always seem to be running late to one thing or another and the ability to stop time would help me immensely!!

What would your superpower be?

So what did people with learning disabilities say?

What really surprised and interested me about this question was how different the answers between non-disabled people and people with learning disabilities were.

Non-disabled people said that all the things that you might expect like I said, stopping time, being able to fly, being invisible, time travel and enhanced senses

People with learning disabilities on the other hand, said that they  wanted their superpowers

To be able to stop hate crime, to make the world a fairer place, to make things better for all people with learning disabilities, and to create true equality.

Each person with a learning disability we asked, thought of the world and the bigger picture. They thought of other people besides themselves and they thought of equality for all. They gave altruistic answers that would mean global improvements for the world to be a better place for everyone including people with learning disablities to live in

I am curious to know why more people with learning disabilities aren’t in positions of power and influence so they can teach us all different ways of thinking. It was a humbling and a learning experience for me which led me to ask myself again….

If I were a superhero what would my superpower be?