A Question of Care – Why tensions exist

From Left Unity Disabled Members Caucus: We are supportive of the position paper on Independent Living written by Reclaiming Our Futures Alliance. We believe the National Health Service and Community Care Act 1990 simply reinforced the traditional approach of locating social disadvantage as stemming from individual incapacity. Since the 1970s Disabled people’s organisations have opposed what Professor Mike Oliver called the Individual Tragedy Model of Disability. They see the integration of National Health Service and Social Care as the continuation of this traditional oppressive practice where Disabled people’s lives are subjected to ‘medicalisation’ which often leads to inappropriate service provision and a failure to address the real cause of social exclusion – disablement. Disabled people are socially oppressed by how they are both seen and treated. Bob Williams-Findlay outlines why notions of “care” fuel disablist attitudes and practice.

“Social care in England is defined as the provision of social work, personal care, protection or social support services to children or adults in need or at risk, or adults with needs arising from illness, disability, old age or poverty. The main legal definitions flow from the National Health Service and Community Care Act 1990 with other provisions covering responsibilities to informal carers. That provision may have one or more of the following aims: to protect people who use care services from abuse or neglect, to prevent deterioration of or promote physical or mental health, to promote independence and social inclusion, to improve opportunities and life chances, to strengthen families and to protect human rights in relation to people’s social needs.”

This sounds reasonable, doesn’t it? The problem is that this lay the basic ground for neoliberal social policy and practice. The original concept of ‘community care’ was very radical and from a progressive perspective however just like the ideas behind independent living, the dominant ways of thinking were used to ‘transform’ them into frameworks supporting the status quo.

The core problem is that ‘needs’ are defined via normative values shaped by the notion that individuals are capable of ‘self-care’ within a lifecycle. Here is the first set of issues which cause a problem – the baseline established what is considered to be ‘normal lifestyles’ as led by non-impaired people within specific parts of the standard lifecycle.

The World Health Organisation’s 1998 definition of self-care states:

‘Self-Care is what people do for themselves to establish and maintain health, and to prevent and deal with illness. It is a broad concept encompassing hygiene (general and personal), nutrition (type and quality of food eaten), lifestyle (sporting activities, leisure etc.), environmental factors (living conditions, social habits, etc.) socio-economic factors (income level, cultural beliefs, etc.) and self-medication.’

It is argued that there is a framework for self-care can conveniently be visualised and organised around seven ‘pillars’ or ‘domains’:

1. Health literacy – includes: the capacity of individuals to obtain, process and understand basic health information and services needed to make appropriate health decisions

2. Self-awareness of physical and mental condition – includes: knowing your body mass index (BMI), cholesterol level, blood pressure; engaging in health screening.

3. Physical activity – practicing moderate intensity physical activity such as walking, cycling, or participating in sports at a desirable frequency.

4. Healthy eating – includes: having a nutritious, balanced diet with appropriate levels of calorie intake.

5. Risk avoidance or mitigation – includes: quitting tobacco, limiting alcohol use, getting vaccinated, practicing safe sex, using sunscreens.

6. Good hygiene – includes: washing hands regularly, brushing teeth, washing food.

7. Rational and responsible use of products, services, diagnostics and medicines – includes: being aware of dangers, using responsibly when necessary.

There are both disabled and nondisabled people who do / do not practice ‘self-care’ – likewise, It is possible to question the assumptions around what ‘people do for themselves to establish and maintain health, and to prevent and deal with illness’ means. It is argued by supporters of Independent Living that the majority of Disabled people can be supported in doing these things, that is: performance, taking control or directing. In other circumstances impairment reality creates personal restrictions so that self-care isn’t possible.

One of the points being made here is that within both common sense and societal expectations / perceptions, ‘self-care’ is established as being ‘looking after one’s own health or well-being’ – however, often contained within this is the assumption that significantly impaired people [older and Disabled people] are unable to ‘self-care’ as they require external ‘care’ (sic). The alternative view is that independent living can make self-care more likely than traditional dependency regimes.

Having stated all of this, there is an aspect of it that’s been taken as read: we instinctively grasp the notion of ‘care’ There are several definitions of ‘care’, here we entertain just two. The first definition relates to the discussion above:

“[The] provision of what is necessary for the health, welfare, maintenance, and protection of someone or something” – hence of example given being – “the care of the elderly”.

Can you to stop and think deeply for a moment about these four contours – health, welfare, maintenance, and protection – what do these contours establish in your mind? What pictures are you conjuring up?

Now, onto the second definition:

“look after and provide for the needs of” – an example might be: “she has numerous children to care for”.

Before we proceed, it is not being implied that either definition is wrong; what is being suggest is that these definitions can reinforce unhelpful and misleading stereotypes. It is the reason why many Disabled people believe the word “care” can often trigger negative views concerning the kind of support they have or require and, as a consequence, lead to distorted perceptions about their lives.

Here our journey leads us right back to the beginning again:

“Social care in England is defined as the provision of social work, personal care, protection or social support services to children or adults in need or at risk, or adults with needs arising from illness, disability, old age or poverty.”

The ‘needs’ arise from being what exactly? Over the last forty years Disabled people have challenged why society has enforced a total medicalisation of the lifestyles of everyone requiring social support – the individual tragedy model!

People may argue Disabled people have ignored the final part of the description of Social Care, but have they?

“That provision may have one or more of the following aims: to protect people who use care services from abuse or neglect, to prevent deterioration of or promote physical or mental health, to promote independence and social inclusion, to improve opportunities and life chances, to strengthen families and to protect human rights in relation to people’s social needs.”

To what extent has Social Care delivered on these aims? Even where it says: ‘to promote independence and social inclusion, to improve opportunities and life chances’, Disabled people would argue this is purely through a ‘health gaze’ and not within a disability rights agenda, as Bob Williams-Findlay said:

“My starting point is to state that the crisis within social care isn’t simply about an increasing ageing population, austerity, inadequate resources or excess of demand – these are all contributory factors, but the fact is the whole approach to social support hasn’t ever been fit for purpose.”

This is why many Disabled people baulk at the idea of an integrated Health and Social Care system and want instead to see a publicly owned health service capable of working with an independent living service designed to provide social support from a person centred, holistic, community-based framework.

A Vision for the Future: Independent Living

Independent Living is the term used by disabled people to sum up their expectation of access to the opportunities enjoyed by their non-disabled peers. It describes the political aspiration for the inclusion of disabled people in society and the practical choices being looked for to enable this. This term also includes disabled people of all ages and people in residential establishments of any age.

Independent Living and Disabled People – Centre for Independent Living Kent website

Most people would define Independence in terms of those activities someone is physically able to carry out for themselves. Following this line of reasoning, Independent Living would thus probably be explained in terms of the ability to provide for one’s own basic physical and intellectual needs on a day to day basis. Thus one of the ways disabled people and non-disabled people are defined as such is via notions of dependency. In many people’s view, to be disabled is to be dependent on others or to have choice compromised.

The trouble with such a widely accepted viewpoint is that it omits to recognise that human beings are social animals and that we are all inter-dependent on each other for many of our needs. Those people with the financial ability to do so might chose to employ someone to do many of life’s everyday chores, like washing, cooking and cleaning, but in such a scenario they are still considered to be independent and not regarded as dependant on others.

Independent Living means something very different to disabled people. It is no longer defined in terms of what activities the individual can or cannot do for themselves, but is about having control over the resources that enable us to exert influence, choice and control over every aspect of our life. It has evolved into a worldwide philosophy, since its origins in Berkeley, California in the early 1970s, when some seriously disabled students at UCLA rebelled against the inflexible and impractical arrangements provided to meet their care needs and demanded control of the resources to arrange for their own needs.

This led to the establishment of the original Centre for Independent Living and the beginning of a worldwide movement for change, led by disabled people themselves. It is a grass roots movement, which responds to the wishes and aspirations in disabled people’s endeavours for an inclusive society.

In the UK, the Independent Living movement continues to grow. There is a clear move towards a greater degree of control, by organisations of disabled people, of resources and more and more Centres for Independent Living (CILs) are being established.

Reclaiming Our Futures Alliance’s position paper on Independent Living

Reclaim Social Care sees the development of Independent Living as a fundamental human right therefore we see this as very much part of our campaign to transform Social Care. Disabled people’s organisations campaigned against the closure of the Independent Living Fund, as well as the negative impact of austerity upon Disabled people’s ability to control their lives. The Reclaiming Our Futures Alliance is a network of organisations and campaigns led by and for Deaf and Disabled people across England. They have developed a position paper which sets out their vision for a national independent living support service. This service would provide support for disabled people that is in line with the rights set out in Article 19 of the United Nations Convention on the Rights of Disabled People.

The ideas in this paper have been shaped through meetings and discussions held by disabled people involved with the Independent Living Campaign. The social care and mental health systems are in crisis. As a result, disabled people’s rights are going backwards. There is not enough funding for social care or mental health.

The social care system does not treat people fairly, for example some people such as those with chronic illness are less likely to be given support that they need. We think that we need a new system that is based on the social model of disability. This is a way of looking at the difficulties disabled people face and recognising the social restrictions exist because of barriers in society and the way society leaves us out and is not accessible to us; it is society that needs to change to include us.

The vision would be for a national independent living support system that would get rid of the “post code lottery” we have now. This is where people get different levels of social care support depending on what area they live in. ROFA believes people should get the same type and quality of support wherever they live. They also argue all independent living support should be free at the point of need. This would mean an end to all social care charging.

The national independent living support service would build on what worked well about the Independent Living Fund (ILF). The ILF was cheaper to run than social care support run by local Councils. Disabled people who had support from the ILF were also much happier than when receiving a service from local Councils.

The key demands in the ROFA position paper are:

1. Set up an independent living task force led by Disabled people. This group of people would put together plans for a national independent living support service.

2. Look at how to put Article 19 of the UNCRDP into law. This should be done working in co-production with Disabled people.

3. Make a case for spending more money on social care support. Spending more on social care could save money in other areas like the NHS and also build the economy through jobs in social care.

4. Work out how much funding needs to be spent on social care now and in the future. This is the amount of funding that would meet all Disabled people’s needs.

5. Educate the public about why it is important to support Disabled people and how this is good for everyone in society.

Many of the ideas within this paper are based upon the Twelve Pillars of Independent Living which outline the different barriers and solutions to independent living:

• Accessible information

• Enough money to live on

• Accessible health and social care

• Fully accessible transport

• Full access to the environment

• Aids and equipment

• Accessible housing

• Personal Assistance

• Inclusive education and training

• Equal opportunities for employment

• Independent advocacy and self-advocacy

• Peer counselling

ROFA recognises that their position paper is only the beginning of a long process which includes opening a dialogue with Disabled people, allies, political parties and the government. LUDMC believes this dialogue is vital, however, well-intentioned organisations and individuals are seeking to address ‘the crisis within Social Care’ (sic) without engagement with Disabled people and our organisations. The failure of the Labour Party, Keep Our NHS Public and the Social Health Alliance to involve us is a violation of Disabled people’s human rights. Simply adding ‘radical demands’ taken from ROFA’s paper does NOT alter the disablism at work here. The notion of CARE within social policy is oppressive in no matter guise one presents it in.