Learning Disability…….Tick!

Learning Disability  ……….Sign_tick_box

Feeling used and not included

Not learning new things

Feeling hatred from people

Having no voice

Lack of confidence

Feeling miserable

At least it’s a day trip out

Feeling bored

Left out

Nodding!

Pretending: ‘ Yes. I understand’

Being treated like children

Feeling like a baby

 

But…. to be included is

To be treated equally

Having a voice

My voice

My strong voice

Taking part

Being encouraged

Improving our skills

Becoming trainers… like me!

Feeling confident!

Finding our voices to make things better for others

Spreading our words

Peer to Peer Support!

No more tick boxes.

By Catherine Carter – Project Worker – DRILL

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Breaking Down Barriers in Nicaragua!

So Shaun, you went to Nicaragua with Phil a few months ago to deliver some training! Can you tell me a little more about this- I’m intrigued?

Yes! We were working with CBM. They wanted us to deliver training on employment, how to make co-working really work, Easy Read information, Peer-to-Peer support and role-modelling.

What was it like for you to travel so far to deliver training?

Very interesting! I hadn’t travelled that far before- it was a new experience. It was a bit scary at the same time as I had to take charge with the directions in the airport because Phil and I decided to take turns.

What were your impressions of Nicaragua?

Lovely people, very beautiful countryside- hot, hot, hot!!

How long were you there for?

We delivered three days training to Politicians, Disability Leaders, Community Leaders, People with learning disabilities and parents. It was an honour and it was amazing.

How did you train people around these issues?

We gave presentations, we did lots of group work, we played lots of games and we had lots of discussions. I supported people with learning disabilities to feel included. I was making sure the group was ok and that people with learning disabilities had a strong voice. I could see people with learning disabilities getting more and more confident.

Was there a language barrier?

We had an interpreter because In Nicaragua they speak Spanish. We managed to communicate well!

What do you feel you achieved by training people in Nicaragua?

I feel like we were showing to the people with a learning disability that were present, how people like myself, a person with a learning disability, are working and have a proper salary.  We are taking our power. We are equal. I felt like I was breaking barriers just by people seeing me deliver a presentation and making sure the group was run ok. I was showing that I was equal to Phil, the person without a learning disability.  I thought that was really good. We were showing the group what they were talking about, Co-working, Empowerment, Inclusion in action! It was great!

A lot of people there were quite inspired because I was speaking about my experience at work.

I think I inspire people with learning disabilities to speak up and I surprise people without learning disabilities.

What were your main achievements in Nicaragua?

I talked about my experience living in Keyring, supporting my peers to become more independent and do things for themselves, such as setting up bank accounts, and going shopping.

It was quite a new concept over there. I think they had never seen a person with a learning disability do co-working and deliver training before. It was all new.

What we all achieved was amazing!

We introduced Easy Read into Nicaragua! We were talking about what accessible information is. We talked about the Words to Pictures team who are our easy read quality checkers with learning disabilities at CHANGE. We talked about how we make jargon into easy to understand English. I told them about how people with learning disabilities are the experts on this topic and how we all work together to produce Easy Read documents.

The Government Ministers on our training gave a speech at the end and they said that as a result of our training they are going to introduce:

Easy Read into Nicaragua

Self Advocacy into Nicaragua

The employment of people with learning disabilities in senior roles into Nicaragua.

I talked to them about my role, my responsibilities. They told me about their hopes and their dreams.

They were inspired by the co-worker model.

What do you take back from this experience?

I was just so happy to see people with learning disabilities to be inspired to change how things are.

I think I inspired people!

Most people there did not work, mostly volunteering. They were all interested in my job!

Where would you like to go next?

Africa, Brazil, America!

I am a big believer in supporting people getting paid jobs and getting the right support to make this happen. Then, they can help other people in the community! They can be champions.

You could see the shock on people’s faces in Nicaragua as people with learning disabilities were becoming passionate and started to have a real voice. You could see it happening as we were there!

I am so happy we got the ball rolling! I love working with others to make a difference.

In Nicaragua I felt that together with the people with learning disabilities there, we got the top people with power to see us differently. I felt so proud!

By Shaun Webster MBE

 

 

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