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.

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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

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