Saturday, 12 March 2016

Self-determination and citizenship: out of reach for disabled people?


[This is the text of a talk I gave at Norah Fry Research Centre, University of Bristol, on March 10th, 2016]

When I was asked to do this lecture it was suggested I do something about disabled people and citizenship.  Around about the same time, I had a conversation with a hairdresser (as you do) and also listened to a You and Yours phone in (as I try not to do), both about citizenship.

The hairdresser was a young Iranian woman who was applying for British citizenship having been here for five years or so.  I asked her why she wanted to settle in this country, given that all her family were still in Iran.  She said that firstly she felt safe here and secondly, even though things may be improving in Iran, she thought it would be many years before it became really democratic.  I asked her what she meant by ‘democracy’ and she talked about ‘a government that looks after its people’.

The You and Yours phone-in asked people who had come here from other countries and become British citizens, when they first felt like a citizen - and almost everyone who phoned in talked about a feeling of being accepted, and of belonging. 

So together the hairdresser and the You and Yours contributors conjured up a picture of a society where people are accepted for who they are, a community to which you feel you belong, where you feel safe, and where you know that your government will act in your best interests and will not harm you.

I was particularly struck by this because I increasingly feel that more and more disabled people do not feel safe, do not feel accepted for who they are, and where our government seems to be acting in ways which - far from being in our best interests - actually harm us. 

I also thought I would revisit the paper I wrote about citizenship and disabled people in 2005 for the Disability Rights Commission (DRC). That was also the year that the government published a 25 year strategy to improve the life chances of disabled people, setting out the aim that:


In the DRC report, I argued that there were three aspects of citizenship: self-determination; participation and contribution.  And that self-determination was critical because without self-determination we are held back from both participating and contributing.

So what do I meant by ‘self-determination’?  It’s about making decisions for yourself, what is often called autonomy. For example, in making the case for people with learning disabilities’ rights to citizenship, Simon Duffy states, “Put simply, if you have self-determination then this means you are in charge of your own life. If you do not have self-determination then other people are in charge of you” (Simon Duffy, 2003, Keys to Citizenship, Centre for Welfare Reform, p.5).

Being in charge of your own life - making decisions for yourself - is not a simple matter if you require assistance to go about your daily life, particularly if you need assistance to communicate and to express your preferences. Self determination for disabled people is not only about removing barriers - what people often call ‘negative rights’, a right not to be coerced to do something.  It’s also often about having the right kind of assistance so that your choices can be put into action. So, for example, detaining people with learning disabilities in long-stay hospitals creates a barrier to self-determination but closing down the hospitals is not sufficient to enable them to exercise choice and control over their lives. They may also require support to make choices, set up home, manage their own money, seek employment, and so on. And they won’t be able to make decisions for themselves if their previous accommodation is merely replaced by another form of institution. They will need, instead, to have somewhere to live where they can make the ordinary choices of daily life. Not only that, but the community in which they want to live may need to make some changes themselves because, in many cases, changes in attitudes will be required so that people with learning disabilities are welcomed and accepted.

For disabled people therefore, self-determination cannot be achieved without positive rights - rights to action to be taken by other people, organisations and by society in general.  The UN Human Rights framework recognises these kinds of economic, social and cultural rights and the UN Convention on the Rights of Disabled People sets out how disabled people require specific action in order to have access to the same life chances as non-disabled people, particularly in Article 19 which concerns independent living.

So how is our society currently doing at promoting such positive rights, rights which are essential if disabled people are to have access to full citizenship?  More specifically, what is our current government doing, on our behalf?

The answer to that question is, unfortunately, that current government policies  are removing the assistance required to promote our self-determination, participation and contribution.  And in the process, people feel less safe, are more likely to live in poverty, are denied opportunities open to others, and in some cases have shortened life expectancy.  Government policy, in other words, far from promoting our citizenship, is actually doing us harm.

I’ll just briefly discuss two policy areas before going on to identify what I think are the fundamental problems underpinning and driving these developments.

“Getting disabled people into work” is currently the main focus of policies which are supposedly intended to enable us to be full citizens, and reduce the risk of living in poverty. Welfare reform is the mechanism to do this, fuelled by the assumption that the primary barrier is - not the attitudes of employers, or even the experience of impairment or illness  - but the motivation and attitudes of disabled people themselves. The most recent example of this is the removal of £1500 per year from people who have been assessed as currently not able to work because of illness and/or impairment, on the grounds that this would improve their motivation to “move closer to the labour market”.

At the same time, policies aimed at providing the assistance that people might need in order to get or retain employment are failing - primarily because they are not based on disabled people’s actual experiences and needs. 

Two examples: The Work Programme - the government’s main programme for helping people to get a job - is only managing to assist about 1 in 9 people on ESA into employment.  The Programme generally has a poor record in enabling sustained employment with only 1 in 4 remaining in employment for 6 months or more.

But it’s not just that the Work Programme isn’t achieving its aims.  It’s also actually harming people.  A survey carried out for Mind found that the majority of disabled people who were put on the Work Programme felt that the experience had worsened their mental health and had made them less likely to gain employment. Almost 20,000 people with mental health difficulties had their benefits stopped as a result of sanctions during 2014/15, an increase of 668% over the last four years. And sanctions mean no money for food, heating, rent.

At the same time, Access to Work funding - intended to pay for the support, equipment or adaptations that people might need in order to work - has been restricted for each individual and this is threatening, amongst others, people who need Sign Language Interpreters. Jenny Sealey, for example, fears that she will no longer be able to work full-time as a theatre Director. There is  also anecdotal evidence that, in general, when people are reassessed their funding is being reduced, although the DWP has refused a Freedom of Information request which would confirm whether this is a common experience.  Although there have been increases in last couple of years to the Access to Work budget, earlier cuts have not been made up and it is still not funding as many people as it was in 2010.

The message that disabled people are getting is summed up by Jenny Sealey when she says:  “I am very curious to know why Deaf and disabled people are considered second-class citizens, why we are ghettoised, discriminated against and deemed worthless”.

These two examples illustrate two key aspects of current government policies: a punitive approach to what we used to call social security but has now been renamed ‘welfare’, which bears very little relationship to people’s actual experiences or needs; and an over-riding aim of cutting public expenditure. The message is that the key to being accepted as a full citizen is to be in paid work; but that there is a limit to which we the government, on behalf of all citizens, is prepared to pay to enable you to enter and retain paid employment.   And what’s more, we think the main barrier is your attitude to work so we will reduce your benefits in order to ‘incentivise’ you to try harder. No wonder many disabled people caught up in the benefit system feel very very insecure. 

The second policy area concerns independent living - two words which sum up what it is to have self-determination, and to have the opportunities to participate and contribute.  But access to independent living has been undermined by cuts to social care budgets.  Although independent living is not just about social care, it is no accident that a protestor at Norfolk County Council’s recent meeting where further cuts of £50m were made to social care, held up a placard saying “No to 2nd Class Citizenship for Disabled People”.

Increasingly people who need support to go about their daily lives are finding that the maximum support available confines them within the four walls of their own home.  Fifteen minute visits three times a day is, for many older disabled people in particular, the maximum help they can expect from their local authority.  Deaths amongst older people have been rising since 2011, having previously fallen since the 1970s, and it is claimed that this is a result of the ‘crisis in social care’. 

The Care Act and the accompanying statutory guidance is full of fine words but the promotion of so-called ‘well-being’ is incompatible with the level of cuts sustained by social care and the proposed 2% increase in council tax is not sufficient to make good the total level of funding cuts since 2010.  The same Norfolk County Council meeting which cut the social care budget also raised its council tax by not 2% but 4% (primarily because they needed to in order to continue to provide statutory children’s services). 

The closure of the Independent Living Fund was a major setback.  It is not just that many people transferring from ILF funding are reporting reductions in the amount of support they receive, and restrictions on how they can use their direct payments, but that there are thousands of people who, since the Fund closed to new applicants in 2010, have never had the opportunities that the ILF had been delivering to people with the highest support needs since 1988.

The largest group of people who received funding from the ILF were people with “severe learning disabilities”.  Will they be more likely in the future to enter institutional provision, for example the new hospital in Northampton on the site of the old Northampton Lunatic Asylum which boasts of being the ‘Europe’s largest mental health facility for young people learning disabilities and/or autism’?

Whatever the government’s intentions set out in its various responses to scandals such as Winterbourne View, American companies have identified lucrative opportunities for moving into the provision of in-patient mental health services, particularly those specialising in secure accommodation for people with learning disabilities and/or autism. Journalists writing about these developments put them down to a ‘rise in NHS outsourcing’.

In 2013, Guardian journalist, Zoe Williams, posed a question to the government we would all like an answer to: “What's your plan for these people whose lives we apparently can't afford?”  She was specifically referring to those affected by the closure of the ILF but there would seem to be an increasing number of disabled and older people who are getting the message that society in general is not willing to allocate sufficient resources to enable them to go about their daily lives in the way that non-disabled people might take for granted. 

I could carry on depressing us all by listing the many many other policies which are undermining disabled people’s self-determination, and failing to deliver full citizenship.  But there are common factors driving these policies and we can’t hope to counter them unless we address these fundamental issues. 

These factors are inter-related and there are many different facets of them but I think they can be divided into two: a belief that public goods and services are best delivered through competition between providers; and a failure to recognise the economic and social value of the common good.

The basic assumption behind the promotion of competition in public service is that accountability is to be achieved via market mechanisms. So, with the NHS, first a so-called ‘internal market’ was introduced in the early 1990s and then competition was opened up to private providers.  The theory is that competition will increase efficiency (by driving down costs) while commissioning for outcomes, together with regulation, will assure quality.  This is not so much privatisation of NHS providers (although there has been a steady increase in private companies gaining NHS contracts) as the marketisation of all healthcare, whether provided by public bodies or not.  

But if markets are supposed to deliver efficiency and quality, why do we get to a position where, to take only a couple of recent examples, our taxes were paying up to £4000 pw for a private company to keep people with learning disabilities - described as needing “extra help to live 'in the community’” - in inhumane conditions.   Or where we were paying an NHS organisation over £3000 pw to provide such negligent care that a young man with learning disabilities and epilepsy drowned in a bath?

Why haven’t those commissioning or regulating these services, on our behalf, prevented this kind of thing happening?  How, for example, can an NHS Trust be found so negligent that it is responsible for the deaths of people in its care, which fails to investigate more than a handful of ‘unexpected deaths’ and yet no-one is held accountable.  Marketisation of NHS services - whether they are outsourced to the private sector or not - has not delivered accountability to its service users. 

The provision of social care was, of course, privatised as a result of the community care reforms in the 1990s.  This was intended, like all privatisations, to deliver choice, quality and efficiency but as things currently stand none of these things have materialised.  Instead, we have a regulator struggling to impose acceptable standards while care homes and homecare agencies go out of business because local authorities won’t pay enough for their services.  The bottom line is that there isn’t enough money going into the social care system. The private insurance industry has not been able to identify sufficient profit making products to provide an alternative to public funding and governments have been increasingly unwilling to provide sufficient resources raised from general taxation to meet the demand for good quality care.

It isn’t just that market mechanisms have proved unable to deliver quality and efficiency, it’s also that we as a society have not valued health and social care enough to be prepared to spend sufficient of our collective resources.  Or rather, we haven’t elected governments who have recognised the full extent of how vital these services are to our common good and who then use our collective resources to make the necessary expenditure.

As philosopher Michael Sandel says: “Some of the good things in life are corrupted or degraded if turned into commodities, so to decide when to use markets, it’s not enough to think about efficiency; we have also to decide how to value the goods in question”. (See ‘What Money Can’t Buy: The moral limits of markets’)

The other policy area that I focussed on - welfare reform - illustrates this second underlying problem. Not only have we as a society failed to value the common good, but an individual’s social value is increasingly defined as being in paid employment. None of the roles that most people fulfil outside their working life are to count as the contribution part of being a citizen. Moreover, paid employment is identified as the over-riding policy aim with no recognition that, for increasing numbers of people, work is bad for their physical and mental health because it is insecure, badly paid, and the working conditions are poor.  Despite this, the recent Mental Health Taskforce strategy identified employment as a “health outcome” outcome. 

This linking of social value with being in paid employment has its logical conclusion with Times journalist’s Matthew Parris’ contention that older and disabled people are “an unproductive overhang” and his belief that in the future it will be seen as ‘selfish’ for older people to refuse to accept assistance to die once they need a certain level of health and social care.

To summarise, citizenship for disabled people is incompatible with the kind of society that we are becoming (or, arguably, have already become).  This is because:

  • governments have refused to raise sufficient levels of collective resources to support the social rights necessary to our full citizenship
  • public services have been undermined and devalued by subjecting them to marketisation and/or outsourcing/privatising
  • attitudes have been promoted which value human beings only according to their productive value.

The result is that disabled people’s ability to contribute and participate is being fundamentally undermined, in particular because the support required to enable self-determination is inadequate and steadily declining.

I hate being so pessimistic so I’ve been trying hard to find ways to be more positive.  And there are a few things we need to hold on to.

While the policies and behaviours of government and organisations can make life very difficult for front-line workers, it is important to hold on to the fact that individual workers do have opportunities to make a real difference to people’s lives - and to help people to make decisions for themselves about their lives.  It’s relationships that matter: for example, recent research, like much previous research, found that people using mental health services saw their relationships with care co-ordinators as being central to their recovery.

Lucy Series, a researcher at Cardiff Law School, writes a blog called The Small Places, the title of which refers to something Eleanor Roosevelt said in 1958:

"Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world."

For all of us, it’s in the small places of our daily interaction with others that we have the opportunity to behave in ways which are kind, which recognise people’s full humanity and which can thereby help contribute - sometimes against heavy odds - to their value as citizens.

Another cause of optimism is the way the awful experiences of individuals have - primarily through social media - been brought out of the private sphere into the public.  In the early days of the disability movement we neglected the experiences of people with long-term health conditions. And although these are the people who arguably have been most affected by welfare reform policies in recent years, they are also the people who have led the campaigns against such policies.  People who cannot leave their house, who cannot engage in more traditional forms of campaigning have made their voices heard through social media.  In addition, those who in the past would have been using the traditional forms of getting their voices heard have also capitalised on the new opportunities for communicating a message.  One key example is the Justice for LB campaign - which included the first ever live tweeting of an inquest into the death of a young man with learning disabilities - and which has used other imaginative and evocative methods combining real world and virtual world methods.  

But all the time we have to recognise what are the fundamental causes of the problems we face.  A denial of the common good; an attack on the idea that we can pool resources to promote the common good; a removal of democratic accountability from government and local government and their replacement by the accountability of the market.  What we need is more democratic accountability not less.  What we need is a recognition that there are some things which we should value as a society and which cannot be efficiently or effectively delivered through financial incentives and self-interest. In particular, what we need is the involvement of people whose lives are affected by the way we use collective resources. If we think that increasing employment opportunities for disabled people is a good thing, then systems and services to achieve that must be designed by disabled people themselves. And if we want to use public money to enable people with learning disabilities, currently shut up in institutions, to lead ordinary lives then it is they, their advocates and their families who should to decide how to use that money. 


Until we address these fundamental causes disabled people will increasingly feel unsafe, as if we do not belong, and as if our government is not acting in our best interests. And, to answer the question posed by my title, self-determination and citizenship will indeed increasingly feel out of reach for disabled people.

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