During the Scottish referendum campaign we’ve been inundated with the word “independence”. I don’t think anyone can be in any doubt as to what independence means to those who advocated a Yes vote. To them, “independence” means autonomy, self-determination, the right for Scots to “decide our future for ourselves”. People talked of “taking power to ourselves”, of “our own independence”.
Disabled people also have a vision of “independence”. For forty years, since the late 1970s, we’ve campaigned for our right to self-determination, to autonomy.
Autonomy means ‘self-rule’, being able to make choices which determine what you do. It means freedom from external control.
Until disabled people started to challenge how they were treated, the assumption was that - if physical or cognitive impairment meant that you required assistance to go about your daily life - then you were “dependent” and had little capacity, or even need, for self-determination. Lack of control over your life meant that you could not choose where to live, whether to work, to marry and have children, how to participate in and contribute to your local community.
The ‘light-bulb’ moment for disabled people came when some of those who were living in a residential home in Hampshire realised that it wasn’t their need for assistance which meant they couldn’t choose even what time to go to bed, but the way that assistance was provided. Out of that realisation was built a movement which challenged the definition of “independence”. As Simon Brisenden, one of the pioneers of that movement argued, disabled people are victims of an:
"ideology of independence. It teaches us that unless we can do everything for ourselves we cannot take our place in society. We must be able to cook, wash, dress ourselves, make the bed, write, speak and so forth, before we can become proper people, before we are ‘independent’."
Instead, the independent living movement redefined “independence”:
"in a practical and common sense way to mean simply being able to achieve our goals. The point is that independent people have control over their lives, not that they perform every task themselves. Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it."
Over the years, disabled people campaigned for the removal of barriers, for anti-discrimination legislation and for government policy to change so that - instead of institutions and services which denied choice - public resources were directed in ways which enabled people to live in their own homes, with choice and control over the support they needed to go about their daily lives. In setting out a 25 year strategy for full citizenship for disabled people, the last Labour government adopted our definition of independent living as:
"all disabled people having the same choice, control and freedom as any other citizen – at home, at work, and as members of the community. This does not necessarily mean disabled people ‘doing everything for themselves’ but it does mean that any practical assistance people need should be based on their own choices and aspirations."
Internationally, this aspiration for “independence” was recognised by Article 19 of the UN Convention on the Rights of Persons with Disabilities, which concerns the right to choice and control over where you live and to “personal assistance necessary to support living and inclusion in the community”. It is significant that the right to choice and control is set within a human rights framework: unless disabled people have choice and control over the support they need to go about their daily lives their human rights are at risk, as has been illustrated over and over again.
So, just as it was clear in the Scottish referendum debate, that “independence” meant self-determination, having control over the country’s future, so disabled people have been clear that “independence” is about being able to make decisions for ourselves, about having choice and control, being freed from others making decisions for us.
Unfortunately, politicians and service providers are currently applying the word “independence” to us in a way which means the opposite. In the policy arena of welfare reform, “independence” is defined as not being “dependent” on benefits. The need for support is seen in entirely negative terms and the barriers created by discrimination, disabling working conditions and/or a lack of jobs are ignored. Instead, the cause of “dependency” is laid at the door of individual motivation and pathology, and the route to “independence” is to be found through “fixing” people’s attitudes by sending them on the discredited Work Programme and the application of sanctions.
Disabled people’s organisations used to campaign for support to the right to work, for changes to the way work is organised and against discrimination. Now the punitive impact of welfare reform on so many individuals means the focus has shifted to emphasising “vulnerability”, ill health and inability. It has become dangerous to talk more positively about a right to work as this can sometimes be seen as colluding with the “shirkers versus strivers” narrative.
In the social care world, the retrenchment is similarly damaging. Here “independence” is firmly defined as doing things for yourself, no longer in need of services, or only needing much reduced services. Along with the Orwellian use of the word “efficiency”, which really means cuts in services, enabling “independence” means providing less or no support.
Nowhere is this more apparent than in the final report of the Local Government Association’s Adult Social Care Efficiency Programme.
This report reveals that the councils which achieved the necessary “efficiencies”, i.e. cuts, were those that, for example, embarked on a programme of reducing people’s existing care packages by doing what they called “promoting independence reviews”. Some councils also achieved budget reductions by encouraging staff (through training and/or specific recruitment programmes) to change disabled people’s and family carers’ expectations of what services would provide. The ‘good practice’ examples set out in the report praise the reductions in expenditure and greater reliance on friends, families and neighbours, while ignoring the increased isolation and diminished quality of life.
The rhetoric associated with the implementation of personal social care and health budgets still uses the language of “choice and control” which disabled people promoted for so many years. Increasingly, however, the narrative is changing to reflect what local authorities are actually doing - which is dramatically reducing their expenditure on support for disabled people. Expenditure on adult social care has reduced every year since 2008 while at the same time the numbers of people needing support has increased. There is a distinct danger that we will lose all the ground gained in the last 30 years.
During the 1990s, all political parties gradually came to recognise that disability policy should be about removing barriers to, and providing support for, independent living. By 1995, all parties supported anti-discrimination legislation and all came to recognise the importance of disabled people having choice and control over the support needed to go about their daily lives. “Independence” was recognised as self-determination and autonomy, not about “doing things for yourself” and doing without support. Support - whether in the form of personal assistance, equipment and adaptations, or an additional costs benefit (Disability Living Allowance) - was seen as necessary to enable disabled people to access equal citizenship.
The big question for all us is how do we get back to that narrative. Unless we do the future is very bleak indeed.