Making the case for the right to independent living

Disabled activists are coming together for a summit on independent living this week.

It’s vital and urgent. It comes as expert Jenny Morris looks at progress against the 2008 Independent Living Strategy that was backed by all parties.  She told me that ‘for the first time in the history of modern British social policy that things are going backwards’.

I’ve written before that for many disabled people, me included, it’s a daily struggle to get the support we need to live in a way that most people take for granted. I need support from a personal assistant to simply get up, get dressed and get to work.

I am acutely aware how fortunate I am that the council covers most of my care costs. Getting that support was extremely difficult. And now I’ve got it there are endless caveats and restrictions. For instance, sometimes I have to choose between getting support to visit elderly relatives or to go shopping to buy essentials. The council provision doesn’t cover both. None of the support covers the work I do for Scope – that has to come out of our own funds.

Those limitations can be intensely frustrating. But for many disabled people the restrictions on living their life, as a result of the ever increasing rationing of care, are much greater.

We have to make the case for a better funded social care system, which provides support that contributes to, rather than takes away, independence. Neil Crowther is absolutely right to re-ignite a discussion about the future of support for disabled people.

But that job has suddenly got much harder. I’m really worried about what appears to be a growing level of cynicism about the very principle of independent living – our aspiration to choose where and with whom we live and how we go about our daily life.

Last week as part of a debate on care homes, Labour MP Gavin Shuker argued that “there will always be some people whose condition is severe enough to rule out other options of care”. He is backed by a growing group of politicians who feel strongly that some disabled people simply can’t live independently. Michael Ellis MP joined the debate challenging the notion that care homes needed to change.

Meanwhile doubts over the principle of independent living are spreading in the media too.

Alice Thomson, a writer for the Times, recently described the prospect of living independently rather than staying in a care home as “no picnics, trips to the theatre or hair dresser — just long, lonely, empty days”. Her argument is that there isn’t enough cash in the system for people to be supported to live independently – so, should disabled people therefore shrug their shoulders and march back into care homes?

Further undermining the case for people being able to choose where and with whom they live, influential campaigner Rosa Monckton recently said in the Mail: “Local authorities argue that it is ‘a human right’ for people to live independently in the community. However, I am convinced this is a financially convenient ideology”.

It all feels a far cry from the moment in the 70s when disabled care home resident Paul Hunt organised strikes, management takeovers, and effectively led an exodus of residents from a large care home he later described to the Guardian as an ‘isolated, unsuitable institution’. This kick-started the modern-day disabled people’s civil rights movement.

I think this new cynicism in part comes from confusion about what we mean by independent living. We don’t necessarily mean living on your own – unless, of course, you want to. We mean having the right to make basic decisions about your life, and having the structures and support in place to make this a reality. New types of care mean we can support people even with very complex needs to make important choices.

We have come a long, long way.  As the Care Minister Norman Lamb recently said care homes are no longer the default. Yes, we have to acknowledge that the approaches we’ve taken haven’t always worked for everyone. But that should drive us to find new solutions not to abandon the principle and goal altogether.

We have two huge tasks in front of us. We have to make the case for a sustainable care system. We also have to re-double our efforts to make the case for the basic principle that disabled people aspire to the same kind of ‘ordinary lives’ and opportunities as anyone else.