A Letter to People with Learning Disabilities from Catherine Carter

I am sitting here at my desk, thinking about how I got here and what I wish to see in the future.

I want to see many more people with learning disabilities in employment.

At the moment, there are only 6% of people with a learning disability that are employed in the U.K., in meaningful jobs.

There should be more people with learning disabilities in work.

The Equality Act 2010 is here to ensure that people with disabilities are protected against discrimination.

So why are there still so few people with learning disabilities in employment?  Is it because of our lack of confidence? Is this partly because we  are having bad experiences when we do apply for a job? Or when we go for an interview? Are people with learning disabilities actually applying? Are we going for interviews? Are we put off by non-easy read application forms? There are so many questions left unanswered.

I am currently working on a project called Learning by Doing Together, which aims to change how people think about the employment of people with learning disabilities, and employ us as peer support workers in services that are there to support us.

There are jobs out there but often people with learning disabilities are put off from applying because of barriers such as application forms that are difficult to read and fill in. We also can lack confidence in interviews.  This is because deep inside we often don’t feel good about ourselves.  We are always at the bottom of the ladder of power and we believe what the world tells us: that we cannot do things.  But that’s so wrong, we are amazing and we can do many things.

I believe you can go where you want to go if you believe in yourself. You will be faced with many barriers but you can learn from them. You may have times when you feel down as if you are not getting anywhere, but don’t give up on finding the right employment for you.  There are success stories out there of people with learning disabilities who have a meaningful job and are no longer on benefits.

Here are some good ideas in finding employment that I have learnt through my own experience.

You can volunteer and get some work experience. This looks good on an application form and CV.

Look for opportunities in places that inspire you.

In the Job Centre Plus, ask for a disability job adviser as they are trained around disabilities.

Make good contacts and connections with people in your past and present, as you might meet them again.

Don’t give up!

Always search for advice and opportunities that interest you.

Turn your negative experience into positive, in a way that you could help others, this is what I do.

Think about all the things that you can do and that you know how to do really well, Instead of what you can’t do.

Remember, we are AMAZING!!!

If I had a magic wand, I would change many problems in the system.

I will be writing an open letter to employers, which I invite you to read too.  For employers to know people with learning disabilities better, and to know about how to employ us, they could then have a more equal and better workforce.

It’s getting dark now outside. I will be leaving the office soon to go back home.  I really enjoy the work I do now as I am speaking up for people with learning disabilities. I enjoy sharing my experiences with other people so we can improve how things work.  I hope that you find a job that you like to do and that it is your dream job.

And I want to share with you these words which I love by Simone de Beauvoir, they inspire me:

 “Change your life today. Don’t gamble on the future, act now, without delay.”

 

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Two Lives

My name is Shaun Webster. I live on my own.

If I get support, it is on my own terms.

The good thing about living on your own is that you get freedom to go out and go back home anytime you want. No one can tell you what to do. I can have my friends around to see me for drinks and anything else I want. I don’t need to ask anyone if this is ok, I feel safe.

I love going to the cinema. I like to watch sci-fi, horror, fantasy, true-life and comedies. Sometimes, I go to the cinema after work. Sometimes, I go on my own and sometimes I go with my friends and make a night out of it. I don’t need to ask people if I go to the cinema because I have the freedom to see any film I want, anytime I want. I’m not going to get into trouble.

If I have a drink, or two, or three… it’s no problem for me because no one else can tell me what to do.

The great thing about living on your own is that you can have a relationship. If I meet someone, I like to get to know the person. At some point, I might invite them back home. If we decide to have sex, or not, is nobody else’s business.  No one can tell us how to live our relationship.

I have a job in Leeds for 3 days a week and I work in England and around the world.

I am lucky.

When I am working abroad, I tell my family. They do worry but they can’t tell me what to do. Yes, my mother was very worried about me going to the West Bank recently. Yes, I was worried too! I got lots of information and after a lot of thinking and talking, I decided to go, even though my mother didn’t want me to go. I am so happy I am made that decision; if I didn’t, I would regret it. I co ran a workshop for 30 Palestinians over 4 days. I shared my knowledge and my experiences and I made new Palestinian friends, some of whom are people with learning disabilities; I learnt about another culture; I learnt to adapt my training and my attitudes. I feel like my world is expanding with every journey I make, so are my skills, my friendships and my knowledge.

Suzan is a woman with a learning disability who uses a wheelchair. She lives in a care home.

Suzan has no freedom where she lives because she always needs to ask the care home staff if she wants to go out or have some friends around. The care home staff think everything is a risk and Suzan isn’t allowed to do the things I do.

When I call Suzan, the staff is not very helpful, often they won’t pass the message on about her volunteering days. That is not fair.

I feel the care home staff needs to really respect Suzan and her life, more. She has the right to have freedom like everyone else, but, I feel the care home is like an institution: Suzan can’t cook for herself; she can’t wash her clothes; she can’t choose who her roommate is; she can’t go shopping when she wants; She can’t choose who wakes her up or what time to wake up; she can’t choose what she wants for her breakfast or dinner; she can’t go out to see her friends or have her friends come round.

Suzan’s world is very small and controlled. It will never get any bigger.

If Suzan has a relationship with any one, she can’t take them back home because there is a big issue around intimate relationships.

Suzan can’t choose to go to the cinema, or to the pub, or to meet up with her friends. The care home staff won’t let her have a job. Suzan will never have the chance to work abroad. She has no power to decide for herself,  everybody else has the power to make decisions for her.

What is most unfair: I know what Suzan’s life is like because I had a time in my life when I had no power to make decisions.

Suzan will never know what it’s like to have my life.

 

 

 

‘She used big words and just expected me to understand them’

I was recently invited by the Council of Europe in Strasbourg, to give a presentation to the 47 member states on ‘Access to Justice’. It was an enlightening experience in many ways not least because in preparing for the presentation it struck me how little seems to have changed for prisoners with learning disabilities in the UK since Jenny Talbot’s brilliant report in 2008, No One Knows – Prisoners Voices.

At the end of the panel presentations and questions to the panel at the Council of Europe, the panel were asked to present one way forward that we felt would make the biggest difference for prisoners with learning disabilities.

I come from an organisation rooted in inclusion, equality, rights and access. 69% of people in prison said they had difficulty reading prison information, while 20-30% of offenders in the UK have a learning disability that interferes with their ability to cope within the Criminal Justice System. It seemed to me that without a system change to embed easy read into the justice system, across the UK and Europe,  prisoners with learning disabilities will continue to be disempowered, excluded and disadvantaged.

Here are some quotes from prisoners with learning disabilities themselves from the No One Knows Report.

‘She must have thought I was really bright, she used big words and just expected me to understand them’.

‘I don’t understand really. I pleaded guilty straight away. I didn’t know what he meant when he said custodial.’

‘They got me to sign something the other day. I didn’t know what it was, I just signed it.’

‘That’s my sort of hell, filling in forms. It sends my temper through the roof. If I can’t fill it in it does my head in’.

‘I haven’t been feeling well for the past couple of days but I haven’t done anything about it because it means filling in another form’.

A while ago, Frances and I, were invited to co deliver training to diversity and equality leads across the prison service in London. Frances was a member of staff with a learning disability working at CHANGE. As part of our preparation to deliver this training we were invited to visit a large male prison. We were taken through the process that every new prisoner goes through when they arrive in the prison. It felt very frightening and isolating and difficult to understand, even though we were not actual prisoners. However, two things struck us;  the first was that in one of the rooms new prisoners wait in, there was a very small written sign high up on a wall, near the ceiling that said:

‘Let us know if you have a learning disability’

The other thing that struck my colleague and myself was that at the end of the training Frances said that she herself was autistic and has a learning disability. The room fell into shocked silence. One by one the participants in the room said that they really had no idea that Frances was Disabled.

I was really curious about this because if you are someone who knows and works alongside people with learning disabilities and autistic people, I think that it wouldn’t  be long before you would realise that Frances is herself a Disabled woman.

Creating easy read letters, menus, forms, activity information and sentence plans is fundamentally what is needed within the prison service and would be very easy to create although it seems very problematic to put in place. The system itself is a barrier for people with learning disabilities and autistic people to access the information they need in the right format.

There also needs to be work alongside providing accessible information to support people with learning disabilities to usefully make use of the information in order to build their confidence and to support people to make informed decisions about their lives. Prison staff need to know who has a learning disability. They should have a good knowledge of the Disability Discrimination Act and an understanding of human rights abuses. There needs to be a needs led approach and collaborative multi agency working to prevent offending and reoffending.

In our experience easy read information would not only support prisoners with learning disabilities, if the easy read is inclusive it will support prisoners whose first language isn’t English and prisoners who struggle with literacy.

‘ A fifth of prisoners with learning disabilities didn’t understand what was going on in court. Most prisoners said that simpler language would help.’ No One Knows – Prisoners Voices.

Using Political Theatre Internationally to Challenge the Status Quo

For the last 5 days Shaun, Rachel, Ilinca and I, from CHANGE, have been living and working with our 5 European partners from Spain, Lithuania, Latvia, the Czech Republic and Slovakia in Prague. We have been delivering training on co creating easy read and co training. Part of what has also been important this week is building an inclusive and respectful community.

It has been a very emotional and inspiring week. Our shared values are of collaboration, inclusion, respect and equality. In practise this means that the majority of the partners are themselves people with learning disabilities, empowered amazing, awe inspiring self advocates.

Most of the people with learning disabilities we meet from Europe are rebuilding their lives having been locked in institutions, hidden from the world literally for years. The directors of the institutions are still and have been their legal guardians. This means that if it is considered a person lacks capacity, which is why they are put into the institution in the first place, it is the directors of the institution who have guardianship and therefore complete control over their lives. The people who we met who were seen as lacking capacity would in no way be seen in this country as lacking capacity. They were fully able to lead independent fulfilling lives. However in many European countries, not only are self advocates fighting for a better world for their friends and peers with learning disabilities but also for themselves to regain their freedom, their identity, their citizenship and control over their lives.

As well as the self advocates in Prague, there were wonderful, respectful, open hearted paid staff, some working around legal capacity, others running and working in NGO’s.

Ilinca and Rachel were delivering training around co creating easy read as each of our partners wants to develop easy read in their own country.

Shaun and I were co delivering training on how to use Forum Theatre to co train and co deliver training on Supported Decision Making and Article 12 of the Convention on the Rights of Disabled People. Each partner country is going to use CHANGE’s model of employing people with learning disabilities to co deliver training.

Forum Theatre is a tool that we use in CHANGE. It is a way of opening up new conversations and creating inclusion within the room. It is an effective tool that is used globally for creating social change and supporting both people experiencing oppression and those with power to find their voice and explore issues of oppression and power.

We play lots of games based on theories of inclusion, building connection, respect and equality. It’s fun and in addressing issues of having and not having power, we invite the people who have power, to step outside their comfort zones of sitting round tables having meetings and try a different way- a way that works better for people with learning disabilities. It might feel new and risky but it works and it’s also fun!

We work with participants to create interactive pieces of theatre based on people’s real life experiences of oppression and we invite the audience to explore with us ways we might do things differently. It’s safe, and it can deeply touch us. In allowing ourselves to feel our emotions we can create deeper connections with the people we are trying to co create new ways forward with.

When we step into our own vulnerability we can find the courage to let go of our power over others and use our strength to go forward from a softer, more inclusive and co creative place.

In Prague, an incredibly courageous woman with learning disabilities shared her story. When she was 15 her mother died and her father put her into an institution for many years. Her story was deeply troubling and very traumatic and when she shared her experiences, it touched everyone in the room. She offered her story to enable us to co create a short play that we could Forum. In this way we were able to better see in front of us how Supported Decision Making would have changed the way her life went. This remarkable woman taught us all something that I will never forget. She taught us about taking risks, finding our own deep courage, sharing our pain and our stories and the huge gift people with learning disabilities offer by sharing their stories of oppression. In sharing their stories we can all learn from and with people with learning disabilities how together we can make things better for the next generation of people with learning disabilities.

How many of us go to that place in our everyday lives, let alone in work. It can often feel easier to stand in the place of judgement and power. It is safer and easier for us to build an armour of professionalism which often comes with disconnection and distance from the very people we are here to serve. We worry about budgets and savings and forget to see people.

Yet it is the very people who we as a society have unintentionally excluded and betrayed who are our biggest teachers and are generously showing us a new way forward if we dare to see it.

A Day in My Life…..a project worker with a learning disability making change happen.

This week, Catherine Carter, a project worker with a learning disability went on her own to give a presentation at a conference in Manchester. I am so proud and honored to be part of Catherine’s  journey of the amazing things that she has achieved for herself and for women with learning disabilities since working at CHANGE. Here is her story of the day:

On 13th September 2017, I attended the Vos (Voices of Survivors) and MASH (Manchester Action on Street Health) project conference in Manchester yesterday.

I went there to talk about women with learning disabilities who have been sexually abused or raped.  I gave my speech about the lack of support there is for women with learning disabilities and how there needs to be better support for women.

I also talked about the lack of easy read information out there for women who have been victims and the lack of experience in what women with learning disabilities can experience when reporting the crime and how staff needs to be trained up with more knowledge around reporting, communication, easy read.

I talked about Peer support and how important it is for women with learning disabilities to get Peer to Peer support. I think there is only one SARC (Sexual Assualt Referral Centre) in England where the staff have been trained in communicating with and supporting women with learning disabilities and autism who have been sexual abused or raped. This SARC is in Bristol.

I mentioned how important it was for all SARC services in England to be inclusive for women with learning disabilities and how the SARC services need to be trained on communication and easy read.

I also feel that SARC services should employ women with learning disabilities in their services to deliver support and role models for women with learning disabilities who have been raped or sexually abused. I feel that all services that support women around sexual abuse or rape should be employing women with learning disabilities.

After my speech yesterday I was approached by Traffod Rape Crisis to train their volunteers around supporting women with learning disabilities and another company came up to me talk about the same subject.

I also spoke to Baroness Beverley Hughes PC for Stretford in Manchester about SARC services and how they need improving, she is going to invite me to a conference in November where they are looking at the topic of improving the services on how a woman reports rape or sexual abuse and how services can be improved.

I also met the actress Julie Hesmondhaigh who played Hayley Cropper in Coronation Street! She was there with her theatre company called Take Back. I talked to Julie about Theatre of the Oppressed which is what we do at CHANGE when we deliver training and I gave her a leaflet about CHANGE.

I think I inspired a lot of people yesterday about women with learning disabilities and where improvement needs to be change and I felt proud and good to know that I am making a difference in the lives of women with learning disabilities.

My Story about Hate Crime

My experience of the criminal justice system and how it can be made better

*Names have been changed to protect identity

My name is John*.  I have autism and I was the victim of a crime.  This is my story and my ideas for how to make the system better for people with learning disabilities or autism.

I knew the person who committed a crime against me.  Her name is Katie*.  I knew her for a long time and trusted her because I thought she was a friend.  Katie kept asking me for money and at first I gave her some, but then I started to say “no”.  She tried to make me feel sorry for her so that I would keep giving her money, but I didn’t want to.  She pestered me a lot and it made me really stressed.  I told the police about it and they warned her to stop and for a while she did, but then she started coming round again.  She was harassing me and I felt scared and unsafe in my own home.

Katie worked with someone else to take money from my contactless debit card, but she was caught and the police were involved again.  She stayed away for a while again, but then one day, as I was walking home, she attacked me.  She hit me on the head and pinned me down on the ground.  She stole my money and let her dog bite me.  She even pulled me into the road.  I was terrified.

My autism means it can be hard to express how things make me feel, so when I reported the crime to West Yorkshire Police I talked about Katie’s actions but not about what impact it had on me.  The police tried to be supportive and they were really calm but I don’t think they knew how to adjust the usual police procedures to a way that was sympathetic to my autism.  I didn’t tell them that I thought the action was a hate crime and they didn’t ask.  I didn’t get support from a hate crime coordinator.  I didn’t tell the police that I couldn’t eat or that I was too scared to go out.  I’ve since found out that I could have written down how I felt instead of trying to say it.

I gave a statement and the police read it back to me.  They were very careful to make sure it was correct and they explained what would happen next.  I was referred to the Witness Care Unit and they helped me to keep in touch with what was happening.  The decision was made to take Katie to court and this made me even more worried than I had been about what she did to me.  I didn’t want to go to court.  I was scared of the court building and of being in a room that I didn’t recognise.  I didn’t even want to go see the room so that I could get used to it before the trial.  The police and the court appointed Intermediary said the room would be separate from the trial room and that I wouldn’t have to see Katie, but they didn’t understand that I was scared of the room itself, not just of Katie and what she did to me.

I didn’t tell the police or the Intermediary that they could have drawn a picture of the room or showed me photographs and that would have given me the confidence to be able to go check it out first.  No one told me that I didn’t have to actually go to court and that I could give my evidence in a place that I felt safe.  They just kept pushing for me to go to court and this made me really stressed.  When we were only a couple of weeks before the court date, I asked for help from a charity where I regularly volunteer.  We managed to persuade the police and Intermediary that for my own wellbeing I couldn’t give my evidence in court.  By this point, I was continually anxious about the case and it was making me feel poorly.  In the week before the court date, we made arrangements with the Crown Prosecution Service to let me have my video link direct from the offices of the charity.

On the day of the court hearing, I went to the office of the charity where I volunteer – a place I feel safe and where I know I have people around me who understand me and who can give me the support I need.  In the end, I didn’t have to give my evidence using the video link that had been set up in the office.  Katie pleaded guilty and my evidence and questioning wasn’t needed.  I was so relieved that it was over, but I also wanted to make sure that other people in my situation get the right support.  People with autism and learning disabilities shouldn’t have to cope with the stress of a system that doesn’t work for them whilst they are already trying to cope with being the victim of a crime.

I want to share the lessons learnt from my experiences and tell people that they can find a way through the justice system that works with their autism or disability.  You just need to have the confidence to be able to say what you need – even if that means you have to write your feelings down.  You need the people around you to listen to what you need and be prepared to think differently about how they can help you give your best evidence.

Although things didn’t work perfectly for me, I’m pleased that the police service are doing a lot to help police officers and civilian staff understand some of the challenges that people on the autistic spectrum can face. As well as helpful factsheets and documents, some police forces have provided face-to-face training.

West Yorkshire Police have recently held Autism Awareness sessions delivered by Specialist Autism Services (www.specialistautismservices.org.uk) and further training and working groups are planned to help police officers or civilian staff in specific areas of police work where they may meet someone with autism. Also, there is now the National Police Autism Association (www.npaa.org.uk) who support employees affected by Autism and related conditions and also share best practice for police forces working with members of public affected by Autism. More locally, there is the West Yorkshire Police Disabled Police Association who can be contacted at wypda@westyorkshire.pnn.police.uk

If you need help there are lots of organisations who can support you through the process, some of them are listed below.

Further help and information

National Probation Service – https://www.gov.uk/government/organisations/national-probation-service

The Victim Contact Scheme – https://www.victimsinformationservice.org.uk/what-help-you-can-expect/joining-victim-contact-scheme/

National Offender Management Service – https://www.gov.uk/government/organisations/national-offender-management-service

Victim Helpline – 0845 7585112

Victim Support – www.victimsupport.org.uk

National Victim Support Helpline – 0845 30 30 900

The Samaritans – http://www.samaritans.org/

Telephone – free from any phone dial 116 123

CHANGE – http://www.changepeople.org/

Telephone – 0113-242-6619

The National Autistic Society – http://www.autism.org.uk/professionals/others/criminal-justice.aspx

 

 

 

 

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