To celebrate #purplelightup for International Day of Persons with Disabilities, Kate Allen writes about purpleSTARS, a team of artists and technologists with and without learning difficulties and disabilities (LDD). They work with museums and heritage sites to make displays appeal to all of our senses.

Nothing about us without us

On Thursday 29 September 2022, members of our Surviving Through Story group, Ajay, Paul, Terry, Vicky, Gosia and Kanchan, took the train to Brighton.

It was a bittersweet moment. On the one hand we were eager to visit ‘Lockdown the Lost Years’, an exhibition by artists with learning disabilities supported by Brighton & Hove Speak Out, a local independent advocacy group. On the other hand, it was a poignant moment, as this would be the last time that members of the Surviving Through Story group would meet as the project officially came to an end.

Our train journey was full of energetic chatter. It had been a while since we had all come together and seen each other in person post Covid. Some of us had only seen each other online, self-contained in rectangular boxes on Zoom or Teams. It was lovely seeing that people actually existed outside the virtual world!

Ajay helped us navigate the streets of Brighton to find the Jubilee Library. We were very happy and excited to meet members of Brighton & Hove Speak Out, Danielle, Sarah, Emily, and Noelle, a freelance researcher.

We really enjoyed looking at the memory boxes and scanning the QR codes to hear the evocative stories of the artists who had created them.

table with art books
Covid Stories

All of us were really touched by these memory boxes. They gave us a glimpse of what that person was feeling and thinking at the time. The memory boxes showcased that life during Covid was hard and challenging but also that people had hope and resilience.

Most of us thought Hannah’s memory box was the most stirring. On the outside it was beautiful and bright with colourful butterflies. The inside of the box provided a stark contrast, showing her as a prisoner in her own home.

a memory box with prison bars
Hannah’s memory box

However, Susan’s memory box was full of hope and happiness. It had beautiful, colourful thread work depicting flowers and a butterfly.

After viewing the exhibition, we all went out for lunch. We talked about our hope that we would get the opportunity to work together again soon.

We ended the trip by taking a stroll through the tranquil Pavilion Gardens, a lovely end to our visit.

group of people in park
Brighton Pavilion Gardens

The project, ‘Covid Stories from the Learning Disability Community’, has collected the stories of 25 people with learning disabilities during the Covid pandemic and the recovery phase. Click below to see the stories.

Covid Stories from the Learning Disability Community

Surviving Through Story

Preparing social work students for practice by involving young people with profound and multiple learning disabilities in teaching and learning

This recently published article (see below), co-authored by Gosia Kwiatkowska from RIX and Kathryn Stowell from Charlton Park Academy, describes the Advocacy Pathway for social work students at UEL and looks at how the RIX Multimedia Advocacy model benefits students with profound and multiple learning disabilities (PMLD) as well as trainee practitioners.

The Advocacy Pathway

In 2018 a new Capabilities Statement was produced by the British Association of Social Work, BASW, highlighting the need for social workers to develop robust advocacy skills based on values, ethics, personal behaviours, knowledge, skills and interventions, through critical reflection.

To support people with lived experiences, social workers need to:

  • get to know people with lived experience as individuals
  • listen and know how to communicate effectively
  • support their family and friends
  • help them lead the lives they choose
  • show respect and treat them as equal citizens

The Advocacy Pathway is a 12-week programme during which social work students are paired with a young person who has lived experience of PMLD.

The aims of the pathway are twofold: to equip social work students with a new set of skills and to empower learners with the lived experience of PMLD to build relationships and provide opportunities for them to be listened to, respected and included.

It makes you discover who you are, it helps you grow as a person and learn about people’s individualism, that people regardless of whatever challenges they might be facing, they have dreams, they have aspirations, they know who they are and what they want out of life, and I think it is just an enriching pathway where you learn to grow. (social work student, 2019)

assistant and student smiling
Charlton Park Academy

Following 20 years of research and development, RIX have established a new way of working with people with lived experience of learning disability using multimedia, called Multimedia Advocacy.

The Multimedia Advocacy approach is based on the values and principles of person-centred practice, and it supports collaboration between the person with the lived experience, their family, and education, health and social care professionals.

Multimedia Advocacy learning resources are available for free on Open Learn Works platform within our course Multimedia Advocacy: Making Plans with People with Learning Disabilities

Multimedia Advocacy learning resources

Through active listening, and observation I have learnt to realise all behaviour is also communication. (social work student, 2022)