Before starting at BIHR, I had little or no experience of learning disability or autism. So when assigned the project ‘Learning Disability, Autism and Human Rights’, to produce a resource on human rights for these issues, I was excited to engage with new issues, learn about these areas and ultimately produce the best product we could to help people living with autism and / or learning disabilities to find out more about human rights.

I learnt a lot from the project, I’m proud of what we produced and I’d like to share my biggest lessons with you along with the personal highlights and lowlights.

Consultation

As experts in human rights we could have produced a generic resource based on our experience of working in the health and social care sector. However, a core value of human rights is participation and to be true and just to the people the resource aims to help, we absolutely had to work with people at each stage of the process and this benefited the end product massively.

We held a mapping event in Liverpool which was illuminating, giving people that live with autism and learning disabilities the opportunity to voice their ideas and input to the final resource. This input was invaluable, and guided the whole process of developing the resource, with contacts made at the event giving advice and guidance throughout the life of the project.

Highlight – Speaking to attendees of the mapping session to find out what they wanted from a resource on human rights. We were able to speak about the issues that affect their lives, and as a team we could provide that ‘light-bulb moment’ that human rights can be a big help with these issues.  

Lowlight – Realising that we would be unable to accommodate ALL of the requests for the resource given the time and budget.

“This resource was developed in an open way, involving service users. This is very important and gives the resource credibility. The culture of co-production is very important.”

Compromise

To accommodate the vast range of information requested at the mapping session, the resource grew in size. The finished resource is 74 pages long, which is large for an accessible resource. To mitigate this the resource is separated into sections that can be read alone, and we include real-life and worked examples at every step to guide people along the journey to resolve their human rights issue. It expands upon previous resources, and couldn’t have been completed without the prior work of my incredible colleagues. Yet, the size of it was a compromise we had to make to accommodate the requests from the mapping session.

Another compromise that materialised was to group the two issues, learning disability and autism, together. Early on in the project we were told that this was not ideal however we worked hard to make it work by working closely to feedback received and to get input from people on both issues.  We grouped the two together, and the information inside is very relevant to both groups. In fact, one attendee of the launch event commented that it could simply be called ‘Human Rights – Accessible Resource’ because it is useful for anyone to learn about their rights.

“Dealing with both issues in one resource does not make the best sense in terms of meeting the needs of the different populations.”

Further compromises were that we were unable to fully illustrate every paragraph. The vast majority is illustrated, but again, the breadth of the resource simply didn’t allow for each and every part to be illustrated completely.

There were more compromises made along the way, with the designers (Neo who were excellent) and with the accessible team (Leam and Ramon, also excellent). However, through all of these I firmly believe we produced the best resource we could under the circumstances and tight time-frame.

Highlight – Producing the resource collaboratively: Our designers (Neo), accessibility team and partner organisations were all brilliant throughout the process with clear communication and expert guidance. Working together was a good experience but I don’t think any of us envisaged the magnitude of the resource at the outset and so at times the work could get frustrating. That being said, I couldn’t have asked for a better team of designers, accessibility experts and partners to make it all happen.

Lowlight – Realising the resource isn’t as accessible as we had wished at the start. However, we know that it lays a great foundation for people to find out about their rights in the detail needed to make change in their lives.

“Although this level is good for me, it is not at the right level to empower people with mild to moderate learning disabilities to use it unsupported.”

Timing

This project started in December and the resource launched in March, just a three month turn around. This tight time-scale added to the compromises made above. If the project was to be completed again, more time would have been of huge benefit. Having said that, the time-frame did ensure that we secured working relationships with well-placed partner organisations quickly, ensured that we capitalised on our existing knowledge and evidence and kept up momentum to turn create, design, produce and launch the extensive resource in a few months. It was a big ask, and it’s a credit to the team and our supporters that it got done. Even with the compromises made, it is a resource that is in the hands of hundreds of people already, helping them to confidently use human rights to get better treatment.

Highlight – Receiving the finished resource in the post and seeing all the work and input realised in print, ready to be sent to people around the country who will use it.

Lowlight – Being unable to road-test the finished resource fully before launching it. If we had more time we could have shown a draft to the same people that gave their input at the mapping session to see if any changes needed to be made.

“It covers a surprising amount of content! It’s visual, easy to understand and there are various resources for self-help.”

So, without funding from the Department of Health this resource wouldn’t have been made and so we’re really grateful for their help and support. Even with the necessary compromises and issues with timing the resource is a really comprehensive booklet that covers a vast range of issues in an easy-to-read way.

In the near future, we’d really like to use the booklet as a foundation for extending the work further. We have seen first-hand how the booklet is being used by people to better understand their rights and therefore gain more control over their lives.

But, we could do more. After an independent evaluation of the project and based on conversations with partner organisations, we are aiming to produce ‘stand-alone’ sections of the resource to break it into more manageable chunks. We’re also hoping to produce explanation videos that can be shared, explaining the information in the resource in a clear and accessible way. Finally, we’d like to hold workshops with learning disability and autism organisations and the people they work with to give them more confidence to use the resources in their lives and work.

Watch this space – with more funding we can roll out this valuable work in the not too distant future!

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