Strategies for independent living – Part 2

By Simon Duffy

In Part 1, I said that despite the many deep challenges there are some signs of hope. But, if we are to take advantage of these new opportunities for positive change, then the strategies we pursue must evolve.

One of the most positive recent developments has been the emergence of a new generation of disability leaders. These new leaders move quickly, mobilise and can produce work of stunning detail, originality and force. We are only at the beginning of discovering what these new leaders will achieve.

Also, despite many problems, the public are waking up to the advantages that independent living offers: older people wonder whether they are really destined for institutional care, people with mental health problems want to take control of their own recovery, people rethinking education or healthcare understand that we must start with the individual, not services. Independent living offers an intellectual framework and real life experiences that are relevant to millions of people, outside the ‘obvious’ disability community.

This is an opportunity, but it is also a challenge. Personally I feel that we have all been weakened by the system’s need to divide us all up into little groups, with our own different agendas, jargons and special interests. Too often one group finds itself distanced from another group by misunderstandings or modest differences of opinion. We lose sight of our collective strength, we fail to find ways to build common cause, a shared language and stronger political demands. We complain about the labels that professionals have dreamt up, but then we find comfort in those very labels and the peer groups that they create.

This is not an easy problem to solve. I suspect identity and peer support is so important that it is not possible nor desirable to just merge diverse groups into some bigger super group: disabled people plus. For example, I do not think we can just say to older people: ‘Get over it, you are disabled!’ If there is a way forward I think it starts at the level of the individual. If we can build bridges with others, find common cause, take the first risky step of trust, then we might find that we can achieve more, and still be ourselves.

I do not think there is some simple trick to this – a quick fix – I think this is about personal integrity and our willingness to try and heal wounds and divisions.

Another advantage that we have is that government is stupid. I don’t mean that this government is stupid – some of them are wicked, but they are not stupid. I don’t mean that politicians in general are stupid – they are not, many of them are very thoughtful and intelligent. I don’t mean that civil servants are stupid – they are usually very bright. What I mean is that the government, as an institutional process, is stupid.

In one sense, government does not even really exist. In its place is a complex array of individuals, groups, professionals and advocates, all pushing and pulling to look after themselves, their interests, their passions. This is only a problem if you want government to automatically do the right thing – just because it should. Once you see that this will never happen then you must begin thinking about how disabled people can advance their own interests within a complex political process. This is not impossible.

Unfortunately some of our previous strategies here have not worked. Asking government to fund advocacy, commissioning charities to provide services, setting up an Office of Disability Issues, funding quangos to advance ‘personalisation’ – these have not been great strategies. We find in fact that the layer of intermediate organisations, the very organisations that one would expect to stand up for disabled people against government, has failed to deliver. When government decides to target disabled people then it can quickly silence or occupy any organisations it controls. In the future we must build organisations and alliances that can maintain their integrity in difficult times and that know how to put pressure on government, rather than just fold under pressure themselves.

Disabled people are quite capable of defining the policies and laws that will serve them better, we just need to start getting serious about achieving real change. That’s politics. And if disabled people want to get serious about this then they will also need to get serious about building the kind of alliances that achieve serious political change. That’s politics.

If we return to the three foundations of independent living – rights, money and presence – then we can see that, while our ultimate goal of independent living might be clear, we may need to think differently about how to achieve it.

Disability rights are not distinct rights. They are a lens by which disabled people can look at their human rights. Making progress to advancing disability rights may also be best advanced by asking how society might be changed to better to respect our human rights – for all of us. This raises fundamental constitutional issues and challenges many of our assumptions about how the welfare state is organised.

Just one of the many problems we will need to address is the relationship between central and local government in the delivery and protection of our rights. Often the disability movement has called on central government to bring local government ‘into line’. However, as a matter of historical fact, many of the reforms and changes that have benefited disabled people, were developed by partnerships at the local level. You cannot always have your cake and eat it too. If we want innovation and inclusive communities, then local government must be enabled to play a constructive role. The UK is the second most centralised welfare state in the world (after New Zealand, which has a population of 4 million) this centralisation does not serve us well.

Too often we seem to try and tackle poverty for disabled people as if poverty for non-disabled people doesn’t matter. This means we fail to make common cause with others trapped in poverty. It also means we encourage the DWP to build special benefit silos and to fund organisations like Atos to police them. We may get a slightly better deal for disabled people than people who are just workless, homeless or disadvantaged in some other way – but is that our real goal? Some disability groups are talking about a basic income for disabled people – but why wouldn’t we be campaigning for a basic income for everyone?

When we think about segregation it is worth remembering that many of those who are most segregated are people with learning difficulties and people with mental health problems.There are 21,000 people sent to live in institutional out of area placements, costing billions of pounds. Is this not a campaigning issue for disabled people? Where is the alliance between the disability movement and those of us trying to help close the likes of Winterbourne View? Are some disabled people too disabled to be included in the disability movement, let alone the community?

Here are two final thoughts.

Several years ago I attended an event run by the Disability Rights Commission on citizenship. There were no people with learning difficulties present and it seemed to me that the assumption of many at that meeting was that, while most disabled people were certainly citizens, they were not sure about those people with learning difficulties. I found that shocking and upsetting.

There are about one million people with learning difficulties, people who are citizens, who do contribute and who share the same rights as everyone else. It is critical that the disability movement makes them central to its thinking. Otherwise we accept an apartheid, where people with physical disabilities are in, but people who need assistance with communication or decision-making are out. This disability apartheid is not only wrong it weakens us all.

Finally, in Australia today they are beginning the process of implementing an ambitious system of disability funding which will provide clear entitlements, no means-testing and individual control. But how did they get there? This system was lobbied for by an alliance of disabled people and service providers under the banner of Every Australian Counts. Australia will face many difficult challenges before it can declare its system a success, but there can be no doubt that it was a political success. Building alliances and focusing on universal rights works. At the last Australian election both main parties backed the scheme and the hypothecated tax rise used to introduce it was popular with the general electorate.

It is time to be creative, to think big and to build new alliances. We cannot achieve independent living on our own and the benefits of independent living are for everyone, not just for disabled people.

About the author

Simon Duffy (@simonjduffy) is Director of The Centre for Welfare ReformChair of the Housing & Support Alliance  and policy advisor to theCampaign for a Fair Society.  His passion is to see people with learning difficulties recognised and respected as full citizens. He is author of several books including Keys to Citizenship and most recently The Unmaking of Man

1 thought on “Strategies for independent living – Part 2

  1. Another excellent blog Simon. On your last point but one, as a disabled parent of three disabled kids, one of whom has autism and learning difficulties, I wholly support your view that we must pay close attention to challenging and dismantling any hierarchy of disability and impairment. You are right, any acceptance of it weakens us all. But it is currently a distorted truth and a blight – unpalatable and inconvenient to some – that we need to set straight before we do anything else, before any meaningful alliance for change can begin.

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