Feature Issue on Self Direction

Welcome, Simon! We’re excited to talk with you about self-direction around the world and how self-direction in disability fits into the larger picture of your work to start Citizen Network Research and your new book, Everyday Citizenship: Seven keys to a life well lived.

Thanks very much and you know, it’s interesting because I’m still working with people with learning disabilities and just had a call this morning with a friend and we’re currently in a complaints process with her local authority about a personal budget issue. So, I’m still very much involved in all of that. But, yes, roughly speaking, my career has had three main chapters. The early work was alongside people who were leaving institutions, and we designed Inclusion Glasgow as a new kind of organization, essentially getting people out of institutional environments and giving them as much control as possible over budgets, but also policies, procedures, staffing, and housing. Everything that makes it possible for somebody to lead a really good life. The second chapter probably began in about 2000 as we started talking about self-directed support as a kind of system for giving people control over both funding and the social work that enables people to have lives of citizenship. I learned from what was going on in the United States. I went to Wisconsin and lived in Colorado and was inspired by a lot of the positive developments, but also by some things I kind of hated about what I saw, if I’m being honest. But we continue to work with great U.S. partners to envision some kind of global governance around the ideas of self-direction. And since 2009, I’ve been doing this rather different thing of creating a think tank that has emerged into a movement for citizenship. In one way what we’re doing is trying to take forward the inheritance we’ve been given from not just the work around self-direction, but also inclusion in general. And I’ve drifted into other areas, such as working on what a system of universal basic income would look like if it were designed alongside people with disabilities.

And a lot of my work these days is focused on what we’re calling neighborhood care. We need to re-think the micro communities in which we live and think about care differently. Once you start thinking about care differently, you start thinking differently about everything: our relationship to the planet, with each other, and our ability to make decisions together. And so, I’m thinking about what self-direction means in that context.

Can you narrow down what that looks like?

I think the conversation about self-advocacy is shifting into an articulation of people’s sense of themselves as citizens with capacity, with gifts, with responsibilities. It’s not just a rights conversation anymore.

Yes, Impact and other publications have been talking about that as disability justice, a more identity-focused, personal movement that is growing alongside the Disability Rights Movement. So, what does that have to do with self-direction?

I think it’s a mature, responsible-citizen conversation, and I think that’s creating a different feeling for what might be possible. People’s ability to articulate who they are in the world, not only what they’re entitled to, but what they can give, has changed and improved and so that changes the whole conversation in an interesting way. People are starting to ask themselves, ‘What am I doing in the world? Particularly, in a world that’s clearly not working very well?’

Can you give an example?

We’ve been working closely with an organization called Plena Inclusion, which is the major intellectual disability organization in Spain. We were at a conference, and I ran a workshop about neighborhood care, and I asked people to imagine their neighborhood had become surrounded by water. How do you want it to be? What principles do you want to operate in this place? What spaces and rituals will you create? There were people with disabilities and their families there, professionals, some government officials, and nobody didn’t get it. They all generated ideas. They talked about what they were going to give to this community and how they would play a part in it. They’re not talking about what they’re going to get. I find that very encouraging that they were focused on how they were going to take care of people and the planet. Recently in my city of Sheffield we had something called the Fearless City Summit. We had more than 400 people, some with disabilities, but it was not about disability. It was about how do we as citizens build a model of neighborhood care? There is an energy out there for this. Injustice is increasing and environmental catastrophes are happening around us and care systems are breaking down. And the only answer to that is us.

You once wrote that if self-direction is so good, why is it so hard? That’s something that the authors of this issue are grappling with today. What is your answer to that?

Well, there isn’t a quick answer, but there are some things you can definitely say. The number of people self-directing has generally been growing, but slowly and with challenges. If you read the literature around self-direction, there is almost a constant refrain of, if people have flexibility in how they use their funding, the money goes further. People are more creative, outcomes are better. Now, what does flexibility cost, and who has a stake in reducing flexibility? Well, it’s the paternalistic self-interest of bureaucrats. And they may be lovely social workers or playing some other role in the system, but when they’re basically telling people who know better than them how to live their own life that they can’t do something because it’s against the rules, then what’s operating has nothing to do with economic rationality. It’s people in the system who don’t want to let go of power. It’s a remnant of the institutionalization mindset.

What gives you hope today about self-direction?

I think there are several hopeful signs. I’ve written a lot about mistakes in Australia’s disability funding system, but a campaign of people with disabilities and providers there created more pressure than I’ve ever seen to reform their broken system. They’ve increased spending on their system about 400 percent in 10 years, and I think that’s worth looking at. I’m critical about a lot of aspects of their system but, gosh, when you go to Australia these issues are front-page news because disabled people got organized and made that happen. By changing the story – their campaign was called Every Australian Counts – they changed the disability story into a universal story that could happen to everyone, and they got principles of self-direction in the manifesto and to some degree into the system, though again, there are some problems.

My friends in Spain also give me hope because there the government and coalitions grappled with all these deaths in care homes during the pandemic. They started to realize the kind of things you’ve been thinking about around inclusion and deinstitutionalization in the United States for decades, and they realized that could be the key to unlocking these issues in a way I’ve not seen before. They positioned it as a social change we all need to get on board with.

Lastly, I’m inspired by my friends in Doncaster, in England. People with mental health problems, disabilities, and others came together there in 2010 and it was originally about self-direction and personalization of support. What it turned into wasn’t just about self-direction but broadly about solidarity and community around peer support. They’re now our partners in this work to rethink what the nature of community is, and self-direction becomes a natural part of transforming our understanding of what it means to be a citizen and what community really requires of us to make it flourish. It’s us in action, together.