State of the Nation: Penny Pepper

podcast

Oct 7

Series 4 / Episode 4

Episode 4: Who Gets to Live a Full Life?

In this episode of State of Our Nation, Andy McCabe is joined by award-winning writer, poet, performer and disability rights activist Penny Pepper. Penny has spent more than 30 years campaigning for disability rights and using storytelling and creativity to challenge how disabled people are represented and understood.

Penny brings a lifetime of experience to the conversation – from growing up, discovering the power of writing and punk, and becoming involved in the disability rights movement, to experiencing social care and direct payments and fighting for greater choice and control over her own life.

In the conversation that follows, Kari and Andy reflect on what Penny’s story tells us about the social care system today – and where we need to go next.

Social care should make a life possible

For Penny, social care isn’t simply about meeting basic needs. It should give people the opportunity to participate in their communities, pursue interests, work, volunteer, create, have relationships and live the lives they want.

In the conversation that follows, Kari and Andy reflect on how easily the system can reduce people’s lives to a list of needs and tasks, rather than recognising the things that make someone an individual.

Penny’s own experience brings this into focus. At one point, Penny had six hours of home help a week and found herself having to choose between things as basic as having lunch or washing her hair.

Representation matters

Penny’s work as a writer and artist has always been connected to representation. She talks about growing up without seeing disabled people represented in the ways she wanted, and about the importance of telling more complex, intersectional stories.

Representation isn’t just about seeing people who look like us. It is about seeing whole lives – with relationships, creativity, humour, ambition, sexuality, work and everything else that makes someone human.

Autonomy, relationships and choice

Penny describes how shared support arrangements could mean that one partner effectively had to go wherever the other went, because otherwise they could lose their support. That lack of flexibility had a real impact on relationships and personal autonomy.

Andy and Kari consider what it means for social care to genuinely support autonomy – including the right to take risks, make choices and decide who you spend your time with.

Knowing your rights can make a difference

Rights only have power if people know they exist.

Penny and the conversation that follows explore the importance of understanding the Care Act and Equality Act, and of having a shared language to challenge decisions that don’t reflect people’s rights or wellbeing.

This isn’t about putting the responsibility onto individuals to fight the system. It is about making sure people have the knowledge, information and support to understand what they are entitled to – while recognising that social workers themselves are often working within a system constrained by resources.

From surviving to thriving

At the heart of the episode is a bigger question: what is social care for?

For Penny, it has to start with how we value people. It cannot be reduced to a calculation of cost, or to providing the cheapest possible way of keeping someone safe.

Kari and Andy also reflect on concerns that increasingly stripped-back budgets and cheaper models of support could take us backwards, rather than towards the kind of personalised support that enables people to live full lives.

The alternative is a vision of social care built around good lives: having control, maintaining relationships, being part of a community and being able to call somewhere home.