We need to be included at the beginning and forever…

A guest blog from CBM Worldwide about Training delivered by CHANGE in Bangkok 2015

CHANGE and Changes today: “We need to do action, and now!” (Shaun, CHANGE UK).

No more plastic water bottles, but jugs with water (the David effect)! Then, the most inspiring session of the week started. Catherine and Shaun from CHANGE UK, a user-led organisation of persons with learning disabilities, explained their work. CHANGE UK is fighting for equal rights and empowerment of persons with learning disabilities. CHANGE makes information accessible, easy to read and to understand. They do research, campaigns, and training on human rights, sex and relationships, parenting, on sexual abuse and disability hate crime.

Catherine and Philippa work with Suwang on the Ladder of Power

Catherine and Shaun are role models themselves. “We are Power Changers”, said Shaun.

It is important to advocate for girls, boys, women and men with learning disabilities to speak for themselves. CBM can promote this with our projects and we should invest in making our materials accessible and easy to understand for people with learning disabilities.

We discussed the power position of persons with learning disabilities within society, as they are perceived as being low on the ladder of power. In order to support people with learning disabilities to climb the ladder of power, we need to work together to open opportunities for attending mainstream schools, for work and for health. To do this, we all need to work on the following:

  • Attitudes need to be changed
  • Give voice to, and learn to listen
  • Accessing information
  • Peer learning
  • Teaching others to stand up for themselves
  • Training of parents for being good advocates and letting their children speak for themselves

Personal stories help to change attitudes. Catherine said, “Professionals like seeing us as labels and don’t see the person first”. Shaun added, “Our voices, our choices”.

Shawn and Catherine reflecting on easy-read messages

In the afternoon we put our efforts in adapting our development framework into easy- to-understand format. For example, how do we say in easy words: “Development co-operation is accessible and inclusive”?

This was a very useful exercise, since we realized that we tend to use a lot of jargon in our daily work. For information to be useful and accessible, messages need to be accurate, short, to the point, written in large font, no capitals, pale background, and include clear pictures.

Shawn and Catherine enjoy our easy read efforts

At the end of the day, all regions brainstormed on the way forward. In most regions we already started some initiatives and we need to start listening to the voice of persons with learning disabilities, develop our own capacities and facilitate situations where persons with learning disabilities empower themselves. As Mohan said, it is not that the voices are not there, “but we are not giving our ears to those voices”. We all agreed that we wanted to be held to account for making a change.

Shaun summed it up, “We need to be included at the beginning and forever. Our voices, our choices”.

Taking the co-working model across the World: Sarah and Joanne head to Japan!

Next week CHANGE Board member Joanne and Sarah Marsay from NHS England are heading to Japan. Here they write a guest blog to tell us what it’s all about:


Hi, we are Joanne Kennedy and Sarah Marsay and we are going to Japan together!

Joanne, “I am a person with a learning disability and I live independently. I am on the Board of CHANGE.” Sarah, “I am part of the public voice team at NHS England. We want people to get involved in NHS decisions. We are developing a new ‘accessible information standard.”

We are going to Japan as part of the ‘Young Core Leaders of Civil Society Groups Development Programme.’ The programme includes people from different countries, and our trip will include people from Denmark and Germany, as well as Japan and the UK.

We fly to Tokyo on 23rd February – not long now!

We are really excited but also a bit nervous. We have not been to Japan before. Joanne has not been on an aeroplane before. Plus we have not co-worked together before! So the trip will mean us both doing lots of things for the first time.

Joanne, “I am really excited to be going to Japan. I am counting down the days! It is also a bit scary as it is the first time I have been on a trip like this.”

Sarah, “Although I have been abroad before, I have never been on a trip like this. I think I would have been too nervous to apply on my own, so it is Joanne’s enthusiasm and belief which has got us both to Japan!”

In Japan, we will learn about how the voluntary sector works in different countries, and share our own experiences. We hope to increase our skills and learn new ideas which we can use when we get back to England. We are especially interested in involving and empowering people with disabilities, and in accessible information.

Joanne, “I want to know if people with learning disabilities are on the Boards of charities in different countries. I want to know how people with learning disabilities are involved in decisions which affect them.”

Sarah, “I want to see how voluntary organisations and government bodies in other countries involve people in decision-making and how they approach accessible information. Do they have different ideas and ways of working?”

We also hope to show people about co-working, although we have only just started co-working together for this trip. We think it might be the first time anyone has gone to Japan on a trip like this as co-workers.

Sarah, “When I’ve told people about going to Japan with Joanne, who has a learning disability, some people thought I was going as Joanne’s carer – which I’m not! We are going as co-workers, and as colleagues. I think there is lots of awareness-raising to do about co-working and what it means to work in this way. We want to show people about co-working, about working on an equal basis and recognising that everyone has different skills and experiences.”

Our first experience of co-working together was when we went to a meeting in London about our trip to Japan.

Joanne, “I was really surprised that I was the only person with a disability at the meeting. Even though part of the reason for the trip is focusing on people with disabilities, I was the only person with a disability. This didn’t make sense to me.”

Sarah, “Joanne’s reaction to being the only person with a disability at the meeting really made me think. We won’t know until we get to Japan, but Joanne might be the only person with a learning disability, or with any disability, on this trip. This was my first experience of co-working and I had already found a new insight, and was already feeling challenged!”

We are really looking forward to seeing a new country and experiencing Japanese culture. We are also wanting to learn about how charities work in different countries, and especially about how people with disabilities are involved and if they are part of decision-making.

We are also excited to learn about accessible information in Japan, and from the participants from Germany and Denmark. Do the Government and voluntary organisations make their information in easy read? We want to tell people about the ‘accessible information standard’ which NHS England is developing, and about how CHANGE makes information in easy read.

We also want to explain how in the UK the NHS works with voluntary organisations to improve people’s health and to empower people to make choices about their health and care. We want to know if this is different in the other countries or not, and see if we can learn from how they work too.

We will be sharing updates on our trip and our experiences on Twitter. You can follow Joanne @joanne64886790 and Sarah @SarahMarsay or search for #jsjapan2015

You can find out more information about CHANGE at http://www.changepeople.org/

There is more information about NHS England at www.england.nhs.uk or visit www.england.nhs.uk/accessibleinfo to find out more about the accessible information standard.