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?




7DaysofAction..its like winning the Lottery

On day 1 of  the 7 Days Of Action to close Assessment and Treatment Units we want to offer our support to the families who are leading this campaign.We want to support the people with learning disabilities who are still in the Assessment and Treatment Units in your struggle to move back into your community.

When we talked about what we could do at CHANGE to support the 7 Days of Action, one of the things that people suggested was that they write a blog about how it feels to have a learning disability and what barriers people with learning disabilities continue to face living in the community.

This blog is written by  a group of people with learning disabilities who work and volunteer at CHANGE. Some people  live on their own independently in the community, some people live with support and some people live in residential units.

This is what people with learning disabilities from CHANGE have to say:

We want to share with you some of our difficult experiences and then our good experiences of what it feels like having a learning disability in 2016 in the UK.

To us having a learning disability can feel like having a monkey on our backs. We feel like we are being put down and being judged all the time. We feel we have to prove ourselves to people all the time wherever we go. Sometimes people help us in picking ourselves back up. We have some good friends on one side of the table who are picking us up and people on the other side of the table who are putting us down.

Sometimes it can  feel like we are in a goldfish bowl and people are judging us all the time and waiting for us to do something wrong then they’ll jump on us, especially if we are parents.  It can happen everywhere.

“Fourteen years ago I moved into the community, no one offered me a cup of tea, they thought I didn’t deserve my house and thought I wasn’t working and that I wanted to be on benefits. But I was picking myself up moving on and getting on with my life. It’s so frustrating, people make so many assumptions about us. We’re not spongers, we want to work. Many people think we can’t do anything for ourselves. In their minds we’re like children. It’s really not nice being treated like a child when you’re an adult. Some people are scared of us and scared to talk to us. Often people will talk about having a learning disability like there’s something wrong with us.”

But…..we can prove people wrong and WE LOVE proving people wrong! When we tell people what we do for a living they look shocked…we’re breaking the ice. People are shocked at what we can do! It makes us laugh! When we start talking to people they stop being scared and they start to respect us.Having a learning disability is who we are, its part of our lives. We love having friends who have a learning disability, because they don’t judge us. I can be myself with people like me. I feel comfortable being me. I feel equal.

We can do things that other people can’t do! We are better at developing accessible information! We can try and put the professionals right by offering them training. We can use our life experiences to develop training which can support people to do their jobs better and to make the world better for other people with learning disabilities. Actually we really ARE the experts! We have our own freedoms, we are role models for other people with learning disabilities giving them hope that there is a better and a different way forward. Being a role model we inspire other people with learning disabilities. Sometimes we can really change peoples’ attitudes and that’s like winning the lottery! We feel so proud.  “I delivered a presentation by heart and someone came up to me and said Wow! How did you pull that off! I felt really passionate and great! It made me want to deliver more training. We can do more!”

We used to hate having a learning disability but now we’re proud we have  a learning disability.

Her’s our message to you: Respect us please! Treat us like you yourselves would like to be treated. We are no different from you. Employ us and let us use our expertise and our wisdom to work together with you to make things better for all people with learning disabilities…

Wouldn’t it be fantastic if people with learning disabilities were offered employment to support people with learning disabilities in the community who have been in Assessment and Treatment Units as a new way forward. Let’s work together to achieve this!


Barriers, breaking them down and creating equality.

Over four thousand people have seen and shared on Twitter the horrifically degrading and abusive photo of the support worker employed by Mencap talking on the phone while smoking a cigarette and standing by the Disabled Person they are supposed to be supporting who is covered in their shopping bags balanced humiliatingly across them and their wheelchair.

When we see practice like this or like we saw on the Panorama programme of Winterbourne View, we collectively feel appalled and ashamed of how society can and does treat people with learning disabilities. Speaking with people with learning disabilities employed at CHANGE hearing the story made them feel angry and demeaned. What is perhaps the hardest thing to bear is that we also know that this is not a one off ‘bad’support worker. This is not just something that happens to be caught (luckily) on camera one day in a service run by Mencap. We know that people with learning disabilities are denied their basic human rights every day in many care homes run by many different organisations across the country, and across the world.

At CHANGE, we often hear of people with learning disabilities being treated badly within the services they are using. We see people’s fear to speak out and their pain and frustration at what they and their peers are living through.

Recently a woman with learning disabilities told me that she is not allowed to stay the night with her boyfriend (they are both in their 30’s) because sleeping together is not in his care plan and if it was, the staff said they would then need to do a risk assessment.

A woman at CHANGE recently said how an agency staff ” put me upside down in my hoist into the bath. I felt humiliated and embarrassed”. The staff member was suspended and then sacked. How could this happen in the first place though? How come the woman with learning disabilities was not offered counselling after such a humiliating and traumatic experience? Why wasn’t she offered the chance to be involved in making sure this doesn’t happen again when agency staff are employed, or even offered compensation? We know of people with learning disabilities who are shouted at by staff and who have no control over their own money.  We know that when people with learning disabilities live in 6, 8 10, 12 bedded units, it is simply impossible for them to make choices about their basic rights including what they eat, when they go out, when they have a bath, what time they go to bed, what time they get up, who comes in their bedroom, which staff are on shift, having privacy. These are not rights based models of housing support where people’s basic rights are respected, however good and aware the staff may be.

We live in a society that assesses people with learning disabilities as soon as they get pregnant to see if they would be good enough parents rather that support people to become good enough parents. We make judgements about capacity and use our prejudices to keep people disempowered,  even when we don’t intend to.  We live in a society that sends people with learning disabilities into assessment and treatment units far from their loved ones because there is not enough support in the community, a society where organisations supporting people with learning disabilities rarely actually employ people with learning disabilities to support themselves. We use our deep seated prejudices about what people with learning disabilities can and cannot do to frame the services that we provide and to drive forward the changes that we think are best for people.

Mencap calling people with learning disabilities who use their services ‘beneficiaries’ reflects Mencaps attitudes,  but also my guess is that it reflects the attitudes of many more care providers than just Mencap. People with learning disabilities rarely receive rights based respectful services. At CHANGE we meet and work with hundreds of people with learning disabilities across the country and they tell us their stories of services that are trying to save money, that employ too few staff to support too many people with learning disabilities. They tell us of bad practice and their fear to speak out incase they get into trouble or their care home closes down and they have nowhere to live.

We know there are controlling, abusive staff who will be attracted to become support workers because of the power they will have over another human being, but there are also many good empowering empathetic staff trying their best in very challenging circumstances.

I believe that if the service run by Mencap that the person with learning disabilities in the photo lives in, were to employ staff with learning disabilities as support staff alongside non learning disabled staff, if the care home truly respected the people with learning disabilities paying for their service and if they really worked within a rights based model that role modelled a rights based service this would get much nearer to stamping out abusive practice. In services that already don’t respect people’s rights, where people with learning disabilities are seen as passive recipients of care, it becomes so easy for boundaries of respect and rights to get broken even more and abuse to insidiously and dangerously seep in and become acceptable practice.

Surely it’s the system that needs to change. Going forward, we all need to share our power with Disabled People including people with learning disabilities, we need to look at where good practise exists ,understand what good practise looks like and support care providers to find ways of becoming transparent empowering rights based respectful role models of good services. We need to ensure that every single person with a learning disability who wants is in receipt of their own Direct Payment so they can choose their own services based on service providers needing to evidence and prove their worth and show models of good practice. If we look towards a better future for people with learning disabilities we have to address issues of power,  which means sharing our power, which means employing people with learning disabilities from top to bottom in services and organisations that they use, which means making information accessible, which means asking, genuinely listening, learning from and collaborating with our colleagues and our employers with learning disabilities, and not our “beneficiaries”.

As Shaun Webster MBE says: The word ‘beneficiaries makes me feel physically sick. It’s like going back to old institutions and we don’t want to go back to those days. Often the best people to support us, are other people with learning disabilities. We have more patience and understanding of each other because we know how to look after ourselves and therefore each other. Peer to peer support is what we need. We should be paid for this. We need better ways and more opportunities to become independent in the community. If the support worker in the photo was themselves a person with a learning disability I believe that they would have empathy and understanding and would support the person with a learning disability in an empowering way. If we are employed as support workers and Peer to Peer workers we become role models and this changes what other people with learning disabilities believe they can do. Employing us as support workers and Peer to Peer workers, breaks down barriers and changes attitudes. This changes the culture from the top down to one of respect, inclusion and equality.


Promoting inclusion and self-empowerment in Egypt

In November Jai and Shaun were invited to Cairo, Egypt to give three days training on working towards full inclusion for people with learning disabilities and self empowerment by the Coptic Evangelical Organisation for Social Services (CEOSS).  Here in their guest blog they discuss their visit.

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Working in a different country we needed to find out about the culture and attitudes of people. Because everyone spoke Arabic everything we said had to go through a translator. Mina had a hard job, especially when the discussions became heated and everyone wanted to speak at once, but he did great work and was able to keep the conversation flowing so all could be involved! We started by getting to know all the CEOSS staff and finding out what their jobs were.  Everyone was clearly very passionate about the rights of people with learning disabilities and were keen to find out how we could help them to be empowered and become valued members of society. We went through article 19 (Living independently and being included in the community) and article 21 (Freedom of expression and opinion and access to information) of Convention on the Rights of Persons with Disabilities

We were shocked to find out that people with a learning disability in Egypt are not allowed to vote, get married, or open a bank account. In 2009 the minister of Education said that children with a mild learning disability (over 52% IQ) can go to school. This is not happening, there are only about 7 children presently in main stream schools. The attitude of the other children in school to these children has been that of acceptance and this is encouraging but there is still a long way to go.

In the second two days there we ran workshop for a group made up of professionals working with people with disabilities, people with physical and learning disabilities, and parents of people with disabilities. There was a young man there with autism who really liked Shaun, and kept drawing him pictures and bringing him gifts of biscuits throughout the sessions!

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The whole group were really keen to learn more about communication skills, how to stand up for their rights, what Easy Read is, and how to change peoples’ attitudes in the community as a lot of people in Egypt treat a person with a learning disability really badly and like they are a second class citizen. Very often people with a disability are hidden from society and are either considered a “shame” or a “blessing” on their family. The group enjoyed hearing about Shauns’ life experiences and what he has achieved with the right support and help and where particularly interested in how the co-working model works. We used a lot of interactive methods in the training and the group really enjoyed being part of getting up and actioning out issues instead of just talking about them.

It is most important to change the concept of learning disabilities, the problems and the circumstances. In many communities they believe that the people with the disabilities are the problem. There are major problems with people with learning disabilities  believing in themselves as they have been brought up to believe it is them that have the problem. Now more people are aware of their rights they are demanding that these are met.

At the end of the three days we asked what people had got from the training. Some of the comments were; “Exchanging of experiences” “Communication skills” “Change is necessary” “To be a partner of the group and serve others” “Teamwork, which leads to the goal.”

We really enjoyed working in Cairo, and even managed a trip to the pyramids! We hope we can go back again.


You can find out more about the work of CEOSS here: http://en.ceoss-eg.org/