Social Work with People with Learning Difficulties

Making a Difference

Hunter, Susan, Rowley, Denis, Susan Hunter, Denis Rowley

• Publisher: Policy Press
• Year: 2015
• Print ISBN: 9781861348791
• eBook ISBN: 9781447312420
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

In the field of learning difficulties there has been a revolution in professional understanding and user aspirations towards delivery of services. Institutional models no longer prevail; language, attitudes and practices have been transformed.

Full of up-to-date case studies, practice examples and points for reflection, this exciting textbook explores how to embed this culture shift into mainstream services. It explores theoretical frameworks for working with people with learning difficulties and examines the role of services and the social worker, drawing on person-centred, community-centred and family involvement perspectives.

Essential reading for anyone studying social work or nursing people with learning difficulties.

Part One

Context

1. Key ideas

In this chapter we ask you to think about some key ideas that underpin the rest of the book:

• personhood
• a ‘good life’
• human rights.

We also briefly reflect on the language and labels used in disability discourse, and how our use of words affects the way that people are seen and how they are treated in society.

Personhood

What makes a person a person? Are some people more equal than others?

Let’s start at the beginning. Consider your response to some apparently simple but literally ‘vital’ questions. Indeed, we would ask you to start this book by writing down your responses to these fundamental questions. Although they are essentially ethical questions, they have an impact on the many practical matters that are addressed later in this book, including the ways in which we, as individuals and as professionals, relate to people with learning difficulties – examples such as the murder of people with learning difficulties, their abuse in regulated services as well as in the community, their experience of enforced sterilisation and terminations, their over-representation in the prison population and the under-responsiveness to their needs by the healthcare system – all these indicate the importance of addressing what it means to be a person:

• Are all human beings people?
• Are all people ‘equal’?
• Or are some, to use Orwell’s words, ‘more equal than others’?

It might seem odd to begin our exploration of ethical issues in the way that we relate to and support people with learning difficulties by looking at the question of what makes a person a person, but this question is important for three reasons. First, because we are clear in our minds that whatever we do in relating to people with learning difficulties should start from the same place as how we relate to anyone else – from recognising the ways in which we are similar to one another, rather than the ways in which we are different. Second, because some influential thinkers have, from time to time, written in a somewhat cavalier way about people with learning difficulties. For example, Peter Singer, one of the best-known living philosophers, once considered the possibility of using people with severe learning difficulties to replace animals in medical experiments. In doing so, he drew attention to the likelihood that using ‘mentally handicapped’ human subjects would be more cost-effective (Singer, 1979; Fairbairn 2008).

Think spot

Are people with learning difficulties as valuable as people without learning difficulties? Write a paragraph or two explaining your answer. Then write a little bit about how you think society should change, because of what you believe. Specifically, how do you think social work practice should change?

Have you come across people who have a different view to yours – who, for example, might believe that Peter Singer has a point? Try, for a moment, to imagine yourself into the shoes of such people, thinking about their reasons for their beliefs, trying to make them your own (for a short time). Then write a paragraph or two, as if you are these people, explaining why you hold these views.

Singer is not alone in holding disturbing attitudes towards people with learning difficulties. For example, in his book, The end of life, James Rachels (1986), another applied philosopher, compares people with learning difficulties unfavourably with those he considers to be ‘normal’. Rachels believes that ‘complex lives’ are worth more than ‘less complex’ ones. He also assumes that people with learning difficulties necessarily lead simpler, that is, less complex, lives than people who do not have learning difficulties.

Rachels believes that in a situation of forced choice – such as when there are insufficient medical resources to go round – we should choose people with complex lives over people with less complex lives. And this, he seems to think, means that we should choose what he calls ‘normal’ people over ‘retarded’ people (Fairbairn, 1991).¹

Third, this question is important because these ideas are not historical vestiges left behind as our society becomes more forward thinking. They prevail not only in philosophy, but also in local and national politics, as the following examples show.

The strange case of Councillor Collin Brewer

On 3 May 2013, Collin Brewer, an independent councillor in Cornwall, was re-elected despite having to apologise for suggesting that disabled children should be ‘put down’ to save money. In an interview with the Disability News Service (DNS) on 8 July 2013 (Pring, 2013a), he re-stated his belief that there was a good argument for killing some disabled babies – those with high support needs – because of the cost of providing them with services (Pring, 2013b). But he also explained why he had raised the issue of the cost of supporting disabled children in a comment he had made to a member of staff of Disability Cornwall in 2011. He said: ‘I had just been to a council meeting which was discussing finance. When you are talking about having to close toilets, facilities for everyone, and perhaps the coastal footpath for everyone, then I have got to question individual budgets to individual people.’ He did call for more facilities for disabled people to be built in Cornwall, to save the cost of sending them to expensive out-of-area placements, and also praised the move away from the use of ‘massive institutions’ for people with mental health conditions, but he then compared the £250,000 that it would cost to keep 10 public toilets open with similar sums paid out to support just one disabled person.

When asked by DNS whether there might be a good argument for killing a disabled child with high support needs, because it would free up more resources for the wider community, he said: ‘I am not making that judgement. There may be a case. I haven’t a clue how much they cost.’ He went on to say: ‘When people complain to me about the state of our finances, I say, “well, we can’t afford to do it.” We might be forced to close our beaches. That’s a service to us all. It is a dilemma and it is going to get increasingly a problem with budget cuts.’ He also said that he had concerns about the ‘burden’ of disabled people who are left to rely on council services after their parents die. He said: ‘Who shoulders the burden after they have looked after them for so many years?’ (Pring, 2013a).

Disability Cornwall commented that it was no surprise to them that his views were occasionally echoed by others, but that it was particularly frightening that these views are held by people who have the positions and power to make life-and-death decisions. ‘It is a sad indictment of our so-called “civilised” society that disabled children are increasingly discussed within a context of affordability, as if they were goods on a shelf that can be picked up and discarded at will, dependent upon what’s in the public purse’ (quoted in Grant, 2013).

What is the difference between 1930s Germany and modern-day Britain?

Wolfensberger (2005) and others² draw attention to some common features between the experience of people with learning difficulties in Nazi Germany and their experiences in the UK and the US in modern times. They point out how in the early part of the 20th century the extreme eugenics movement advocated killing those who were judged to have ‘lives not worth living’. In the 1930s, there were huge cuts to state institutions, causing overcrowding. At this time, Nazi propaganda emphasised the cost of caring for people with mental health problems and disabled people. In 1939, parents of the disabled child Gerhard Kretschmar wrote to Adolf Hitler to ask him to permit their child to be killed. Hitler agreed, and immediately set up Aktion T4, a committee whose job it was to organise more such killings. When the Second World War started, parents were told that their mentally and physically disabled children were being sent to special treatments centres, but the reality was that they were being killed without their parents’ knowledge. This programme was soon extended to adults, starting in Poland, and then in Germany. Under this programme, at least 200,000 disabled people were murdered over six years, through lethal medication, starvation or the gas chambers.

Explicit comparisons have been made between these historical events and the experience of disabled people in 21st-century Britain.³

On 9 May 2013 DNS pointed out:

We have propaganda pushing the idea that sick and disabled people are scroungers, work-shy, lazy. This propaganda is coming from government ministers, their special advisers, and tabloids like the Daily Express, The Sun, and the Daily Mail. Even broadsheets like the Times and the Telegraph have contributed. Such propaganda has even been raised by MPs [Members of Parliament] in the Work and Pensions Select Committee and ministers told to stop. The propaganda is working too, with hate crimes against disabled people up in vast numbers. We have many people fighting to legalise assisted suicide, inadvertently promoting the idea that life for some people is not worth living.

The authors are clearly fearful that if euthanasia becomes legal, there will be pressure on some disabled individuals to stop being a burden on other people.

Other pressures include:

• Cuts to local authority care budgets, for example, in one local authority in England the cuts mean that anyone whose care costs more than sending them to an institution will lose some care. The politicians argue that it is a choice because people can choose to move to a care home, or have some of their care provision cut. But what to cut? Eating? Washing? Dressing? Using a toilet? The net result is loss of care, or institutionalising people.
• Sick and disabled people being judged as fit to work and told to claim Jobseeker’s Allowance and to look for work or to undertake unpaid work experience for large companies.

In 1930s Germany, the government itself ordered the rounding up and killing of disabled people. In modern-day Britain, the government can claim that it is not its fault, even that it should not happen, but that private companies and the chasm of bureaucracy between various government departments are what kill people. Starvation, homelessness and neglect are what will kill people. The implementation is different, but the result is the same.

A ‘good life’

People with learning difficulties have the same aspirations as anyone else. Like every other citizen, they aspire to:

• have a home
• have loving relationships with family and friends
• control the basic elements of their lives
• attain sufficient financial means to live with dignity
• pursue their dreams and passions
• make a contribution to society.

Etmanski (2000) describes this set of aspirations as ‘a good life’. He suggests that for the vast majority of people, an absence of meaningful relationships would prevent anyone from living a good life. It is certainly true that most of us find it impossible to imagine a good life without the benefit and support of genuine relationships. However, for many people with learning difficulties, this is their bleak reality. Although much progress has been made, we need to do more to respond to the challenges that those with learning difficulties face. Improvements such as accessible buses and taxis, lifts labelled with braille, events translated into sign language and other similar measures reflect the progress that has been made, but they are not enough to ensure that disabled people have a real sense of belonging.

Over the last 50 years the disability movement has been driven by the ‘rights paradigm’, the belief that rights were the means by which citizenship would be attained for disabled people. While the rights of disabled citizens have been increasingly entrenched in the laws, policies and institutions of the UK, true citizenship, as reflected and evidenced by participation, contribution and acknowledgement of our fellow citizens, has remained elusive for many people with learning difficulties. As a result, disabled people have not had the opportunity to fulfil their obligations as citizens (Styan, 2004).

Think spot

A good life for all?

As well as thinking about what a good life might mean for you, think about whether a good life is an entitlement for all of us or an ‘added bonus’:

• Can everyone expect to have a good life?
• Does every citizen actually achieve this?
• What are the...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of tables and figures
• Acknowledgements
• Introduction
• Part One: Context
• Part Two: Transitional points
• Part Three: Conclusion
• References