Citizen leadership – reshaping the future

by Lynne Elwell, Partners in Policymaking


This year marks twenty two years since I ran the first Partners in Policymakingcourse in the UK. This is a leadership training programme for self-advocates and parents and relatives of disabled children.

As you might expect, I am reflecting on what has happened over those years – how making this kind of investment in people and families has worked out and what has changed for disabled people and families. When I started running the courses the aim was to help families access service systems more efficiently – over time this has changed. The courses now aim to help families access life. For many this has happened, with lots of people, for example, gaining paid employment or getting their own home. The expectations from people and families over these years have changed massively – we have hundreds of good examples of achievements in all areas of life.

Initially, I hoped that by spending time with many other families and sharing their experiences would answer a question that I have been trying to understand for a long time. That is, why is it that some people are actively kept out of the mainstream of life simply because of their differences?. The investment we managed to make in families didn’t answer this question, but it has shown how people can be brought in from the periphery into the heart of their communities – with a huge impact on lives. I’m delighted that our national network is active and supportive with over 2,500 people ready to share strategies and solutions on all the issues that affect disabled people, and their families – often responding to calls for support and advice

When I reflect on what seems to have made this difference I think it is that this investment in them helps families to see their children’s gifts, while service systems concentrate on people’s deficiencies. Support systems change over time, while the families are there for the long haul. We welcome people in, and come up with creative solutions. We are working hard to create a world that works for everyone.

Some of the most rewarding times have been spent with young people, many of whom have experienced the care system and have been let down by the education system. They are now successfully attending mainstream schools, college and university, part of apprenticeship schemes or working as advisers to ensure other young people have a good experience. People have also become leaders – although many would be uncomfortable with this description. Dignity, humanity and justice are at the heart of what they do to help their own families and others.

This kind of investment in families helps to lead change, through visioning, inspiring building relationships, working in much more effective partnership with professionals and local managers.

As I reflect, I am very proud that families in our network are not driven by personal ambition, but by a desire for social justice. We are ‘walking on the shoulders of giants’ – families who refused to have their children locked away, individuals who questioned what was on offer. But our struggles to be included are far from over and new self-advocate and family leaders need to be connected to our experience and learning as they carve their own path.

To help with this I have tried to capture the key experiences and practical approaches and solutions we have been building over the decades in a book called Rights of Passage, a soon to be published resource that contains the things we have learned, that we will continue to build on and that we hope will be helpful to the next generation.


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