Disabled People and Social Wellbeing

What’s Good for Us Is Good for Everyone

In: Perspectives on Wellbeing
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Abstract

Speaking about social wellbeing means focusing on an individual’s wellbeing not only on a personal level, but also on a social level. It involves considering the individual’s opportunities to be with others, to form healthy relationships, and to engage in various activities with others in the mainstream of society. The concerns of the disabled people’s movement, and of the discipline of Disability Studies which developed from that movement, are very similar, dealing as they do with the social aspects of disability. This is because the concept of wellbeing has been colonized and suffused with a non-disabled, often overly therapeutic discourse. This chapter will focus on how the concept of social wellbeing has been used (directly and indirectly) in disabled people’s struggle for recognition of their right to be an integral part of society and in the discipline of Disability Studies itself.

Introduction

Wellbeing is a concept that is hard to argue with. Particularly when coupled with the term ‘social’, it would seem self-evident that human beings would seek wellbeing, and that it should therefore also be considered central to the lives of disabled people. This chapter however will complicate matters by questioning the fit of ‘social wellbeing’ with the core goals of disabled people. We will particularly be concerned with some key values and models which have influenced Disability Studies and the rights for which disabled people have fought hard across the world, namely autonomy and control over their own lives. Disabled people position themselves as citizens, people who have active roles to play in society, and this discourse of ‘agency’ is at the heart of their own campaign for change. In that context, social wellbeing takes on a new shape, and can be seen maybe not as a goal in itself, but as an outcome of the search for a meaningful role in life.

Models of Disability

In this section we will start by discussing some of the models which over the years have influenced professional and activist thinking about disability. This overview will help in the understanding of the rest of the chapter. A model of disability is simply a framework to help us understand things in a particular way, and no one model can be practised exclusively. Life is more complex. However, we have chosen these models because we feel that they have a great impact on the notion of wellbeing in the lives of disabled people. Before proceeding with an overview of the different models, it is also worth noting that disabled people are not a homogenous group but that disability occurs to men, women, people with different sexual orientations, people of different ages and people of different ethnicity as well as class.

The Medical Model

For a number of years, governments and large organisations such as the World Health Organisation (WHO) have relied on the prevalence of medical diagnoses and causes of death in order to describe the population’s overall health (Peterson, 2005). WHO’s (1980) International Classification of Impairments, Disabilities and Handicap (ICIDH) and later the revised version known as the International Classification of Functioning, Disability and Health (ICF) (2001) were created to provide an objective measure for a population’s health. One of the greatest impacts of these classifications has been the medical model of disability in which disability is seen as extreme ill health. Of course, it is true that disabled people, even more than others, need good quality health services for their “improved care, survival, and quality of life” (Peterson & Elliott, 2008, p. 214). The concept of ‘wellbeing’ has traditionally arisen in connection with matters of good health. However, a number of disabled activists have criticised the medical model as one which only views disability as a problem of the individual which needs to be solved or cured (Marks, 1999; Traustadóttir, 2009). In turn, disabled people have felt that this view of disability has led to the interpretation of disabled people as individuals who are helpless, dependent, and incapable of making their own decisions and thus a burden on society (Duane, 2014; Shearer, 1981).

The Social Model

As a way of challenging this “disability orthodoxy” (Barnes & Mercer, 2010, p. 1), the 1970s and 1980s saw disabled activists in Europe and North America coming together and organizing themselves to become a vocal lobby for a different model of disability, the Social Model of Disability. Disabled people came to see that society was not inclusive of their needs, and that their human rights to equality were violated (Driedger, 1989). The social model is important for us in this chapter because it switches the view of ‘wellbeing’ from the individual onto the social context in which they live.

In its UK form, the ‘social model’ stemmed from the Union of the Physically Impaired Against Segregation (UPIAS), who in the 1970s published a paper titled, ‘Fundamental Principles of Disability’ (as cited in Oliver, 1996, p. 22). The social model of disability makes a very clear distinction between the definitions of ‘impairment’ and ‘disability’. According to this model, ‘impairment’ is taken to mean, ‘the functional limitation within the individual caused by physical, mental or sensory impairment’ (Disabled People’s International, 1982, p. 105), whilst ‘disability’ is taken to mean, ‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers’ (Disabled People’s International, 1982, p. 105). This model of disability has been instrumental in bringing about meaningful changes in the lives of disabled people because it “reverses the causal chain to explore how socially constructed barriers have disabled people with perceived impairment” (Barnes & Mercer, 1997, p. 1). Harris and Roulstone (2011) assert that more importantly the social model of disability has been a great influence for the passing of new laws and policies, including the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2006).

The Relational Model

From the start, there were debates and critiques of the simple ‘social’/‘medical’ model divide (see Thomas, 2004, for a good summary). Thomas (2007), for example, extends the original UPIAS definitions and proposes that, apart from physical and social (public) barriers, disablism also includes what she called “psycho-emotional” (private) factors which undermine disabled people’s well-being (p. 73) and their relationships with those around them. In the Nordic countries it is the relational model of disability which has dominated the conceptualisation of disability (Gustavsson, Sandvin, Traustadóttir, & Tossebrø, 2005). One of the reasons that the relational model has been influential in Nordic countries is because Nordic languages do not lend themselves well to the distinction between ‘impairment’ and ‘disability’, as put forward by the British social model of disability (Traustadóttir, 2004, 2006). According to Goodley (2011) and Tossebrø (2002), the Nordic relational model is based on three assumptions: disability stems from a discrepancy between the person and the environment; disability depends on the particular situation or context; and disability is relative. Thus the focus on ‘relational’ or social wellbeing fits well with a perspective in which we look at the individual as connected with others. These ideas have had influence beyond Nordic countries, and are very relevant to the increasing emphasis on the disabling (or enabling) effects of interactions with disabled people.

The Affirmative Model

Finally, social wellbeing can never be just a ‘bolt-on’ extra. It is about the way people think about themselves, their identity and their achievements in life. The affirmative model of disability is considered to be a development of the social model (Goodley, 2011). It was originally formulated by French and Swain in 2000 and comes in direct opposition to the tragic view of disability. The development of this model is based on the premise that, “[t]he writings and experiences of disabled people demonstrate that, far from being tragic, being impaired and disabled can have benefits” (Swain & French, 2000, p. 574). Similarly to gay pride, the affirmative model promotes disability as a positive aspect of one’s identity (Brueggemann, 2013; Swain & French, 2008). Disabled people for instance can have a strong role, not only as advocates, but also as artists (Hargrave, 2015). It is this type of strength of identity which lies at the heart of how disabled people see their ‘social wellbeing’.

Wellbeing as a Core Value in Policy

Wellbeing is a notion that traditionally has been allied with health concerns. ‘Being well’ is the opposite of sickness, and thus medical practitioners are urged not just to cure the body, but also to create ‘happiness’ or a sense of wellbeing. However, in a 2016 special edition of the prestigious medical journal, The Lancet, the editor acknowledges some of the looseness of the term:

Indices of overall wellbeing must not obscure the need for ongoing progress in reducing disease, mental illness, and premature death. Without life, there is no happiness to be realized. (The Lancet, 2016, p. 1251)

In the context of visual impairment, for instance, wellbeing can be a slippery concept: ‘the term ‘wellbeing’ may at once mean everything and nothing’ (Marques-Broksopp, 2011). Particularly when it is conflated with the term happiness, ‘wellbeing’ can become a subjective notion, something residing in emotions and feelings, and of course also in belief systems. The 2016 edition of the ‘World Happiness Report’ acknowledges some of these dangers, and urges us to consider the inequalities between and within countries in the actual distribution of happiness, turning back to the social determinants of health, such as poverty, hunger, housing or gender. For instance, when the term ‘wellbeing’ is used to refer to economic wellbeing, disabled women tend to always be more disadvantaged than disabled men and non-disabled women (Emmett & Alant, 2007).

Some of these debates about subjective or objective measures of health are particularly prominent currently, in debates about the value of life itself. As genetic technology increases the ability of medical practitioners to predict genetic conditions before birth, parents are increasingly given the choice to terminate pregnancies of babies with conditions such as Downs Syndrome (Philips & Richards, 2016) or even less life-threatening ones such as a cleft palate (Day, 2003). Their choice is driven by objectively measured, medical facts. However, that choice is a profoundly ethical, subjective one. It raises the question of whether a child with Downs Syndrome or a cleft palate is actually valued at all as a human being, whether it is likely that their ‘quality of life’ would be sufficient to constitute wellbeing, whether also they might affect the wellbeing of others in their lives. Those who have and love children with Downs Syndrome or cleft palate think positively of course about their right to life, as Sally Phillips (Philips & Richards, 2016) demonstrates in her TV documentary and as Jepson has demonstrated through her court case (Day, 2003). That is also true of course for many people with Downs Syndrome and other conditions who speak up for themselves and argue for a more comprehensive understanding of the diversity of human beings. In order to achieve wellbeing, in this sense, we need to recognise not only that all human beings are different, but that we are interconnected. Kittay’s (2002) ‘ethics of care’ re-directs our thinking towards the values in being interconnected, the ways in which both carer and cared-for can experience wellbeing together. For instance, Phillips puts over movingly how deeply she and all her family benefit from the very existence of her son with Downs Syndrome.

Thus the arguments about subjective wellbeing lead us directly to the ‘social’, the core values in what we mean by humanity. In the following section, therefore, we will add the word ‘social’ and consider what social wellbeing might consist of.

Social Wellbeing and Discourses of Social Care

Moving beyond the field of medicine, social care has also recruited the term ‘wellbeing’ in recent years, and the current 2014 Care Act in the UK for instance frames ‘wellbeing’ as a primary principle in delivering social care:

local authorities must promote wellbeing when carrying out any of their care and support functions in respect of a person. (para. 1.2)

In Malta, so far, none of the acts related to disability have incorporated or defined the term ‘wellbeing’. However, ‘wellbeing’ is mentioned in five instances in the National Policy on the Rights of Persons with Disability which was published in 2014. Contrastingly, ‘wellbeing’ is not mentioned at all in the draft of the National Disability Strategy which was published for consultation in May 2015.

The practice guidance accompanying the 2014 Care Act in the UK specifies carefully that wellbeing has to be defined by the individual client, recognising again the subjective nature of the term. One disabled person might define their own wellbeing as including access to leisure and night life, for instance; another might want wellbeing through their own family, living independently, or employment. However, as Slasberg and Beresford (2014) point out, the delivery of ‘wellbeing’ is still in the hands of social care practitioners, who themselves will decide whether a person’s outcomes are going to be funded through the public purse. As one of the current authors (Symonds, Williams, Miles, Steel, & Porter, 2018) discusses, research that is just completed about assessments of social care under the Care Act in England has also shown that disabled people are not always trusted to judge accurately their own wellbeing. Social workers and other practitioners have to assess needs, and to decide what needs will ultimately be funded. In theory, they tend to adhere to the ideas of choice contained in the latest legislation:

If it’s an area that the customer has no concern about for their well-being, or it doesn’t bother them, then it won’t bother us. (Social care practitioner)

However, another social worker describes the range of clients she sees for assessments, and the dilemma for social care in determining how to distribute resources:

sometimes they need help but don’t want it, and sometimes they want help and don’t need it. (Social care practitioner)

The fundamental problem in social care is the tension between protection and autonomy, and this is thrown into sharp relief when money is involved. A limited, cash-strapped social care system will always tend to revert to the former principle, of protection. Individual choice and control can arguably lead to chaos, with some people shouting louder than others, and with resources being distributed according to the arbitrary whim of individuals. However, the principle of protection allows the welfare state to operate within safe boundaries, ensuring that people are protected in some instances from their own unwise decisions, and taking on itself the decision of what is best for each disabled person.

How does this argument relate to social wellbeing? The definition of wellbeing within social care is not necessarily that of ‘social wellbeing’, but the two are often conflated. For instance, a person with intellectual disabilities and autism might wish to live a life which is perceived to be very anti-social. However, his social care funding depends on him becoming more ‘sociable’, taking part in social life, and maybe even living with other people. Cynically, then, we can see how social wellbeing can be used as a way of ensuring that goals are met communally, that disabled people are grouped together for the purpose of service provision, and that ultimately the delivery of social care can be manageable within a restricted budget.

In the UK, we have seen how the welfare state is being retrenched, with a call to communities and the ‘Big Society’ to be active in supporting disabled people. Like so many of these themes, this move towards community ‘assets’ is both welcomed and feared by disabled people. Social wellbeing within the wider community is of course a prized goal for all, within a society that is truly adapted to ensure inclusion. However, there are also worries that without funding for personal care, for social support or for personal development, disabled people will be prey to a hostile, uncaring community. It is difficult to find statistics regarding bullying and harassment of disabled people in Malta, but, for instance, the Equal Opportunities Compliance Unit Annual Report 2015, notes 7 reported cases of bullying and ill-treatment at the place of work, day centres or residential homes/institutions between 2014 and 2015 (Commission for the Rights of Persons with Disability, 2016). Hate crime might be considered the polar opposite to social wellbeing, but may be seen as a possible outcome of the withdrawal of the right to social care itself. Indeed, the withdrawal or retrenchment of social care support can result in ‘social wellbeing’ equating with family care, placing both the disabled person and their family in increasingly difficult positions.

In order to consider what ‘social wellbeing’ might look like in an ideal world, then, there are some complex issues to consider. The next section of this chapter will therefore look at what disabled people themselves feel about social wellbeing, and in doing so, we will turn towards ideas about relational autonomy. Being together with other people is not enough; it is also about people genuinely working together to produce solutions for and with disabled people.

Social Wellbeing and Relational Autonomy

We started this chapter with one of the core values in disabled people’s own theories relating to disability, that of autonomy. The right to decide what is best for oneself, the right to speak up and to have a voice in matters that concern you, all of these have been core to the development of the disabled people’s movement. However, there have always been some groups of disabled people who have found it hard to gain a foothold in the disability movement, particularly those with cognitive or intellectual impairments. In this section, we will take examples from research carried out with people with intellectual disabilities which included them in speaking up for themselves and in research (Williams, 2011). Despite their supposed lack of voice and lack of self-determination, people with cognitive disabilities can nevertheless think for themselves, and can tell us about what really matters to them.

First of all, what do people with intellectual disabilities want from their own support workers? Williams, Ponting, Ford, and Rudge (2010) worked with Kerrie Ford and Lisa Ponting, two researchers who themselves have learning disabilities, to discuss this question with people with intellectual disabilities in different parts of England. From the analysis, Kerrie and Lisa felt that the following five themes were central to ‘good support’: (1) Respect; (2) Supporting choices; (3) Being friendly; (4) Giving good advice; (5) Supporting people to speak up. Central to this was the idea of relationships. None of the people with intellectual disabilities in this study wanted to make their decisions completely alone. They wanted to be listened to, but they also wanted good advice to come to a joint decision.

Since that study, there has been further discussion about ‘choice and control’ as experienced by people using personal budgets (Williams & Porter, 2017). When asked about how they managed their support plans, people with intellectual disabilities in this study said that they think it is most important for them to grow more confident in managing their relationships with others, and that increased self-confidence will mean a better chance of being in control of their lives.

The notion of individual autonomy, so precious to disabled people, can be seen to shift here towards ideas about ‘relational autonomy’. For example, in an ongoing study (Gauci, 2018) about the use/role of technology at the place of work with employees with physical and/or sensory impairments, the majority of the participants claimed that it made them “more independent”. But when asked to explain further what this meant to them, comments like “it makes me feel good”, “it is liberating”, “it increases your self-esteem” and “I’m at an equal level with my colleagues”, all indicated that for the participants it was not only important that technology helped them do tasks without other people’s help but that it also increased their well-being. Independence here is seen to increase people’s well-being not only for the individual but also for the individual in relation to others, in this case to colleagues at work.

Turning back to people with intellectual disabilities, the significant people in their lives may be family members and they in turn nurture and support other social relationships with people outside the family (Forrester-Jones et al., 2006), such as close personal relationships related to love and marriage (Lafferty, McConkey, & Taggart, 2013). Finally, disabled people who have support from professionals will have a wide array of ‘others’ in their lives. Much will depend of course on the various systems for social welfare and support across the world, but where people have access to paid support services (for instance, in a day centre, in education, or at home), then the paid support staff can become key people in the lives and can contribute importantly to people’s ‘social wellbeing’. Williams and Porter (2017) also found that friendships and relationships with peers, on a basis of equality, were vital in building valued goals in one’s own life, a sense that one can contribute to society and support others. Disabled people generally are not just ‘takers’; they are active citizens and gain strength, as we all do, from knowing and helping others who are in similar positions.

Personalised social care and independent living therefore do not mean social isolation. People with disabilities have indicated clearly that they want both ‘choice and control’, that they want to be listened to, but they also want to build up a stronger identity together. This does not in any way mean that the individual and any impairment-related consequences are removed from the picture when discussing ‘social wellbeing’.

Conclusion

This chapter has discussed how the concept of ‘social wellbeing’ could be linked with the ideas of the Disability movement, and would be an important factor for any disabled person in gaining or maintaining a sense of control in their life. This does not mean being ‘independent’ and isolated, but it can involve meaningful interactions and interrelationships with others in the community. Disabled people have rights. However, there are many different rights, which are interconnected, and which might appear to conflict at times. For instance, the right to be protected and the right to be safe have to be balanced against the right to take risks. What this chapter argues is that these rights are acted out in the sphere of the ‘social’, when other people respect and value what disabled people themselves have to offer.

Disability is not a simple, unitary concept. For most of us, disability may be associated with chronic conditions, pain and unpleasant or very negative experiences. Thus when it is coupled with ‘wellbeing’ it would be naïve to claim that good social feelings can wipe out the effects of pain (Freedman, Stafford, Schwarz, Conrad, & Cornman, 2011), and McCabe and O’Connor (2009) point out rightly that economic pressures, loss of earning potential and other negative social effects can further compound the experience of impairment.

Nevertheless, a sense of wellbeing and happiness is not just to do with the number of people you know and say ‘hello’ to each day. It is to do with having a purpose in life, something which you yourself value and wish to achieve. Thus social wellbeing is not something which can be conferred on disabled people by those who ‘care for them’. It is a common goal for all of us, and with the agency and actions of disabled people in our midst, a common wellbeing might be achieved by non-disabled and disabled people becoming part of the same society.

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