17 July 2026
Anne Corrigan, Danny French, John Hersov, David House, Jaspaul Vilkhu and Sedley Wilson.
Also, Dean Beach and John Elliffe.
Valuing and recognising lived experience is important because we’re the ones who are experiencing this every day of our lives.
Other people can learn from us but only if they make the effort to connect with us properly.
The SCIE Fliers’ work together is based on the fact that each of us is contributing ideas to the group’s discussions from our own individual perspective. The group was formed in September 2021 to act as a sounding board for SCIE on a specific project relating to how COVID-19 had affected our peer group, ‘Tackling inequalities in care for people with learning disabilities and autistic people’.
The group is comprised of eight people, including a facilitator. We have worked with each other for between 5 and 20 years, and have extensive experience of speaking up on issues of great importance to us and our peers. As a group, we always learn something new from each of us whenever we meet up.
The principles of being valued and recognised are fundamental to the work that this group produces.
Being recognised for who and what you are helps to build up a relationship of trust with strong elements of openness and transparency. If it concerns an ongoing relationship between a professional and their client, this should be the starting point. If you don’t have that, it can make it more difficult.
It is also important that our voices are heard in decision-making and that we feel listened to by health and care professionals.If this works well, we are more likely to engage with decisions and outcomes, such as a treatment plan, for example.
It also helps if professionals communicate in easier-to-understand language and don’t use jargon. Knowing your audience and what they have been through helps to make a stronger connection.
Sometimes, we might need someone else to be in the room with us, to give us the confidence to speak up for ourselves or simply to hear what is being said to us, so that we can go over it together afterwards, before giving our response.
We need to educate those people who have never worked with us before. Often, they come with pre-conceived notions about what we are like, that bear little resemblance to who we actually are.
Being offered employment opportunities can show what we are capable of and boost our own self-confidence, as well as convince employers to employ others like us.
Society doesn’t help. Old attitudes are hard to shift. There needs to be more awareness about the hidden disabilities that many people live with. In particular, these can affect how we process information and therefore what kind of support we actually require.
In this way, the Sunflower Lanyard has had a positive impact on our ability to be able to travel safely and securely. We want to have our independence wherever possible, and being able to travel about more freely helps us to achieve this.
There is often talk about the slogan ‘Nothing about us without us’ originally from the Disabled People’s Movement in the UK.
In order to include us better, especially if discussions about certain things might be triggering, it is important to create a safe space for people to feel included even if they need to remove themselves for a time.
In an unfamiliar alien environment, when you are already anxious, you want someone to give you the time and space to get yourself together.
Young people with learning disabilities can learn from us too. Speaking up now provides them with role models who can inspire others into the future.
And in the end, the solutions that we arrive at with will be stronger for having been done with, and not to, the very group of people that we are trying to serve.
The SCIE Fliers are a group of experienced self-advocates who draw on their own lived experiences to come up with ideas and solutions to everyday problems for people like ourselves.
We provide advice and training materials for service professionals and others.
To date, the group has produced the ‘Am I Invisible’ and ‘Making Things More Equal’ films and written text for SCIE pieces of work between 2021 and 2025, forming part of the ‘Tackling inequalities’ project.
