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About disability

2017: Dementia as a disability? Implications for ethics, policy and practice

About the disability movement

The modern disability movement began in the 1960s in America. It was about people with disabilities coming together to fight for a common cause and to bring about changes in their lives. It was influenced by the civil rights movement and the women’s rights movement. At the outset, there was a strong emphasis on physical disability. Nowadays, we recognise that disability can arise from impairments experienced by people with a wider range of conditions (e.g. autistic spectrum disorders, dyslexia, thrombosis, stroke and coronary heart disease, rheumatoid arthritis and dementia). Some people with disabilities may have had various impairments from birth or an early age. Others, such as people with dementia, may have acquired them later in life and therefore may make a distinction between their former and current selves and lives.

The founders of the disability rights movement were primarily people with significant physical disabilities and sensory impairments who developed an independent living movement. They promoted the idea that people with disabilities were best placed to determine what their needs were. They therefore felt that they were best placed to find the most appropriate solutions. This, combined with a call for the de-medicalisation of disability and de-institutionalisation, involved a quest for social, economic and political recognition and to the gradual expansion to include people with other disabilities. This gave rise to the emergence of the social model of disability as an alternative to the dominant medical model (see section 4.2). However, many people with cognitive disabilities found self-advocacy more difficult. This may have contributed towards their under-representation in the early disability movement and their reliance on others to promote their rights.

This movement, which spread across Europe in the 1980s (Driedgner 1989), was preceded by and has led to various developments contributing towards the gradual recognition of the needs and rights of people with disabilities. Examples include:

  • —large numbers of soldiers returning home with physical and mental impairments after the two world wars. Nearly 8 million European soldiers were permanently disabled as a result of World War 1 alone according to Kitchen (2000). They could not all be institutionalised and this contributed towards a renewed focus in some countries on disability (People with Disability Australia 2017);
  • the United Nations declaring 1981 the International Year of Disabled Persons (IYDP). This had a clear focus on the human rights of people with disabilities and the removal of barriers to their social and civic inclusion in society;
  • —the Americans with Disabilities Act of 1990 prohibiting discrimination based on disability. This resulted in companies with a certain number of employees having to make “reasonable accommodations” for employees with disabilities (similar equalities legislation has been implemented in several European countries). Public buildings, shops and restaurants were required to make ‘reasonable modifications’ to ensure access to people with disabilities. Conditions were laid down to promote the access of people with disabilities to public transport and their participation in various others domains of public life;
  • —the founding of the European Disability Forum in 1997. This is run by people with disabilities and their families. It has representation in all EU member states;
  • —the United Nations Convention on the Rights of Persons with Disabilities (CRPD) of 2006. This focuses on rights but also promotes the social model of disability (described in the next section). This led to a change in the usual and accepted ways of thinking about disability. This, in turn, resulted in a radical shift of emphasis from substitute decision making to supported decision making;
  • —the European Commission (2010) European Disability Strategy 2010–2020: a renewed commitment to a barrier-free Europe;
  • —the Council of Europe (2017) Disability Strategy 2017– 2023 entitled “human rights: a reality for all”.

Many people with disabilities still encounter some degree of discrimination and prejudice. The disability rights movement has nevertheless been a massive force for change across the world and disability activism continues to prevail in social policy and political discourses. Still, it has taken significant time for people with disabilities to have their voices heard. All too often their views have been filtered down. Service providers, professionals, relatives and other people such as carers, supporters or friends have often spoken on their behalf. There are particular challenges to enabling the voice of people with more advanced dementia to be heard and these need to be addressed. Meanwhile, many people with dementia (irrespective of their possible experience of disability) still encounter this problem.

Some of the concerns of the disability movement are relevant in the case of dementia, such as the move away from a medical model, the right to be heard and to influence policy and service development, and the promotion of human rights. This will become more apparent as you read the different sections of this paper. It suggests the need for mutual exchanges, parallel and shared challenges and to join forces with the disability movement if and when necessary in support of common goals or issues.

Key messages

  • —People with disabilities started the disability movement when they came together to campaign for their rights and in particular against discrimination.
  • —The initial emphasis on physical disability has broadened to encompass people with a wide range of impairments and disabilities.
  • —The motto of the disability movement is “nothing about us without us”.
  • —Dementia is recognised as a condition resulting in impairments which can lead to disability.
  • —Despite several important developments at local, national, European and international level to challenge discrimination and to promote the human rights of people with disabilities, there is still progress to be made.
  • —It is important to hear the voices of people with dementia within the disability movement so as to ensure that subsequent developments correspond to their experiences, needs and wishes.

Different models of disability

The current emphasis in the field of disability research is the result of a long historical process. For many years, three main patterns (known as models) of disability could be traced in Western culture, namely the moral/spiritual, medical and social models. More recently, these models of disability have been challenged and further elaborated. This has resulted in alternative or different interpretations of disability. In this section, we look at:

  1. the moral/spiritual model,
  2. the medical model,
  3. the social model

 and three additional, more nuanced models, known as:

  1. the biopsychosocial model,
  2. the reinterpreted social model and
  3. the human rights model.

We will briefly describe each model and have included a table at the end of the section which summarises how each model relates to dementia and to people with dementia.

You will find references to some of these models again in section 8 which looks at their implications for the social inclusion of people with dementia.

Moral/spiritual model of disability

The moral/spiritual model of disability is familiar from religious beliefs and teachings. It was quite a widespread view in Antiquity (before the Middle Ages)2. According to this view, disability is often seen as a sign of the moral flaws of an individual, or his or her ancestors. People who see disability this way, may, for example, believe that a child’s impairment is the result of his/her parents’ moral offences. Similarly, they might consider that a person who is impaired later in life, committed a sin or did something that was immoral. According to this position, disability is a disadvantageous state, usually a visible impairment, vis- ited upon individuals and their families as retribution (e.g. Garland 1995, Silvers 1998, Stiker 1999). Although this model of disability can be traced back to ancient times, many peo- ple still make sense of disability in this way. The belief that disability has a religious or spiritual origin or significance may also help some people to cope with any difficulties they might encounter. Some view disability as positive difference and gain inner strength from those very beliefs.

Medical model of disability

From the 18th century onwards, disability started to be explained by scientific methods, and to be reduced to an individual’s physiological or mental ‘deficiencies’. Disability became ‘medicalised’3, alongside other phenomena such as alcoholism, homosexuality and criminality4. The expression ‘medical model of disability’ has become common shorthand for a one-sided view which:

1. attributes the cause of an individual’s deficits either to

  • bad luck (e.g. accidents),
  • inadequate health practices (e.g. smoking or bad diet) or
  • genes, and

—2. views disability as the inevitable product of the individual’s

  • biological defects,
  • illnesses or
  • characteristics.

Disability becomes a personal tragedy that results from the individual’s pathological5 condition (Barnes, Mercer & Shakespeare 1999, Oliver 1990, 1996, Priestley 2003, Silvers 1998).

Since the late 1960s, this one-sided medical understanding of disability has been fiercely criticised. It has been argued that it portrays disability in a biased manner that leads to practices and social arrangements that oppress people with impairments. It also results in interventions aimed solely at the ‘abnormal’ individual, with the surrounding environment not being considered. Resources are not directed at changing the environment but rather at ways to ‘improve’ or ‘repair’ the impaired individual. This, it could be argued, leads to a social and moral marginalisation of disabled people, preventing their full participation in society.

The way we understand and explain a phenomenon such as disability affects the things we do to try and remove the possible hardships associated with it. A certain view and understanding makes only certain kinds of responses and actions possible. In other words, if the cause of impairment and disability is seen to be spiritual, it is only natural to fix the issue with spiritual manoeuvres, such as exorcism and faith healing. If disability is understood in terms of medical knowledge and is conflated with impairment, then the reasonable thing to do is to focus on improving a person’s condition by means of medical interventions.

An unfortunate outcome of both of these individualistic approaches to disability has been paternalism. This involves making decisions on behalf of others for what is assumed to be their own good, even if this is contrary to their wishes. Paternalism can also be seen as a kind of expert system whereby the authorities of the relevant knowledge and craft determine how the phenomenon in question should be understood and handled. In the religious framework, the clergy are considered to be in possession of the truth; in the medical discourse, it is doctors and other professionals. In both cases, the autonomy of people with disabilities has frequently been trampled upon. They have become mere passive recipients of the benevolent assistance provided by professionals and other believers of the dominant disability discourse. This has been especially the case for people with dementia. The corresponding medical model of dementia typically focuses on the workings of the brain, over-emphasises incapacity and leaves little room for the voice of people with dementia to be heard.

Social model of disability

The deficiencies of individualistic approaches to disability seem quite clear. The emergence of a social understanding of disability has therefore been a welcome change to the disability discourse and to institutional responses to the lives of people with disabilities. Nowadays, it is widely acknowledged that disability is not merely a matter of bio- logical impairment but also, and perhaps primarily, a social phenomenon. Disablement cannot be explained and under- stood simply in terms of people’s impairment but, rather, in terms of social arrangements. In other words, it is not only individuals and their alleged incapacities that explain the limited opportunities of people with impairments but society too.

In Europe, the British social model of disability is the most well-known conceptualisation of disability as a social phenomenon. It clearly distinguishes between impairment and disability, whereby:

impairment is defined as ‘lacking all or part of a limb, or having a defective limb, organism or mech- anism of the body’,

disability is defined as ‘the disadvantage or restric-tion of activity caused by a contemporary social organisation which takes little or no account of peo- ple who have physical [sic] impairments and thus excludes them from participation in the mainstream of social activities’ (Oliver 1996, p.22).

The core idea of the social model is that people with disabilities are an oppressed social group. Their assumed inferior status is not a natural effect of their impairment, but it is produced by unjust social arrangements. Disability is seen as the material product of socio-economic relations developed within a specific historical context. This approach focuses on the disabling barriers and material relations of power (Priestley 1998, Shakespeare & Watson 2001). It should also be noted that it is now generally accepted that impairments can be of a mental or cognitive nature and therefore include people with dementia (Mental Health Foundation 2015).

One criticism levelled against the social model is the role, meaning and significance of body and impairment. It defines disability as a form of social oppression and hence as a phenomenon that should be conceptualised in social terms. Individual properties, such as impairments related to demen- tia, are not the main focus of this approach. Rather, it focuses on analysing the social causes of disability. As a result, in Brit- ain the study of impairment has been somewhat neglected by disability scholars (e.g. Hughes 2002, Thomas 2002). This is a serious shortcoming in the social model of disability. Any theoretical account attempting to explain and theorise disability satisfactorily needs to take into account corporeal6 issues (i.e. the lived experience of impairments for people with disabilities) (e.g. Corker & Shakespeare 2002, Morris 1991,Shakespeare 2014, Thomas 1999, Wendell 1996).

The biopsychosocial model of disability

Altogether, one of the most constant and pressing issues in disability studies is the meaning and significance of impairment. To what extent are bodily features the essential nature of the human body and to what extent are they social constructs? What would be proper responses to peo- ple’s impairment-related needs? Can we really attribute all disability related to dementia to external social factors? The World Health Organisation (WHO) claims that a good model of disability is “one that synthesizes what is true in the medical and social models, without making the mistake each makes in reducing the whole, complex notion of disability to one of its aspects” (WHO 2002, p.9). This syn- thesis, according to the WHO, results in a coherent view of different perspectives of health (biological, individual and social), which has come to be known as the biopsychosocial model of disability.

This biopsychosocial model of disability takes into account medical, psychological, social and environmental factors influencing a particular health condition, functioning and disability. It emphasises that everyone may experience a decrement (deterioration) in health and thereby experience some disability. This contributes towards mainstreaming the experience of disability7 and recognising it as a universal human experience. The medical and social models, in focusing on one particular factor, risk overlooking the complexity of issues related to disability. The biopsychosocial model of disability takes the emphasis off diagnoses for the planning and management of any support, care or treatment that people with disabilities may need. Nevertheless, the medical, social and biopsychosocial models of disability all reflect to some extent fixed assumptions about what is ordinary, abnormal, normal living, a social problem, dependence and interdependence, as well as certain goals, such as being a citizen, and certain states of being which are desirable (Smith 2009). It is important to be conscious of the difference between normal in the sense of what is average, common or standard and normal in the sense of how things should be. According to Chadwick (2000), when normality is formally defined, there is a risk of the two ways of understanding ‘normal’ becoming muddled. This may result in the systematic attachment of negative value judgements to people with disabilities.

The reinterpreted social model of disability

The reinterpreted social model of disability gives greater emphasis to the personal experience of disability, in addition to social and environmental factors. This includes the way a person experiences a particular condition, impairment or disability (e.g. not necessarily as a personal disaster but in terms of personal growth and spiritual, philosophical or psychological benefits). It takes the focus off a socially constructed definition of disability, based on deficiency and departure from the norm, onto one which reflects how disability is experienced by people with dis- abilities. This might, for example, involve a greater focus on personal achievements, the enjoyment of life, personal identity and self-awareness (Smith 2009, Swain et al. 2003), and in the case of dementia on remaining capacities and just getting on with life. This model does not suggest the absence of social barriers but rather emphasises that people with disabilities should be the ones to define which barriers are most important and relevant to their lives and their objectives. In other words, the model acknowledges personal experience and human agency.

Similarly, there have been criticisms recently of the term ‘care’, especially in response to the medical model of disability and a desire to reframe it as just one aspect of support. Many people with dementia, especially in countries where there are limited care and support provisions, would like to have greater access to care. They do not see it in a negative light (e.g. as a indication of dependency and passivity) but as something to which they are entitled and which may contribute towards their dignity and quality of life. The current focus on independent living in relation to disability is surely positive. Nevertheless, it also reflects a social construction which must be balanced against recognition of the right to independent thinking and recognition of the experience of people with disabilities (Smith 2009).

The way that people experience impairments or disability may also be influenced in part by cultural differences. This calls for a greater understanding of and respect for cultural beliefs surrounding dementia held by some ethnic minority groups. At the same time, we should not assume that all members of a particular identifiable group (e.g. sharing a common ethnic or religious background) think alike. Moreover, Morris (1991) suggests that lifting the pressure to conform to the aspirations of the majority (without dis- abilities) can be liberating. She further suggests that by embracing impairments, rather than fighting against them, a person ceases to be disabled by them. Nevertheless, a possible criticism of the reinterpreted social model of disability is that it might sometimes lead to an over-emphasis on positive aspects of living with disability. This might, in turn, lead to overlooking some of the more unpleasant and difficult aspects of having an illness or impairment, which Shakespeare et al. (2017) label a ‘Pollyannaish’ approach.

The human rights model of disability

With the human rights model of disability, irrespective of whether a particular condition is seen as a disability or health condition, the emphasis is on:

  1. the recognition of the person with a particular condition or impairment as an equal citizen (‘rights holder’) and
  2. others as having duties and responsibilities (‘duty holders’) towards him or her.

A key aim of this approach is to ensure:

  • —  that people with disabilities have the same rights as other citizens to contribute towards society,
  • —  that they enjoy the same benefits and
  • —  that they take the same risks as people without disabilities.

This may be achieved through rules, regulations and laws, as well as through carefully planned and meaningful involvement of people with disabilities in society. The PANEL principles are often provided as useful guidance for the implementation of a human-rights based approach. The PANEL principles are:

Participation (of rights holders)

Accountability (of duty holders towards rights holders)

Non-discrimination and equality (of duty holders towards rights holders)

Empowerment (of rights holders)

Legality (of duty holders’ actions)

The European Commission has provided further guidance to using the PANEL principles in the form of the FAIR flow- chart. This consists of establishing the Facts, Analysing the rights at stake,Identifying who is responsible for bringing about change and Reviewing any action taken (see the Scottish Human Rights Commission leaflet for more details: www.scottishhumanrights.com).

Laws and regulations can be effective when properly designed, implemented, respected and monitored. Unfortunately, they sometimes result in individuals, service providers and official bodies merely doing the minimum necessary to tick the box, and not striving to ensure full citizenship. Indeed, for meaningful involvement in society (e.g. in local and national decision making, accessing good and services, choosing where and how to live, and having the opportunity to form and maintain relationships with other people), attitudes and interpersonal interactions are also important.

However, as mentioned earlier, not everyone who experiences dementia has the same objectives. Many people with disabilities and disability activists have rejected responses to disability which reflect pity or charity and to being ‘friendly’ or ‘nice’ to people with disabilities (which may be well intended but sometimes perceived as patronising). Positive and supportive actions, based on the principles of solidarity, justice and mutual respect, should nevertheless be encouraged. Similarly, it should not be assumed that government officials, service providers and people responsible for discrimination are non disabled. People without disabilities and those with disabilities are all rights holders and duty holders, even though the latter may require varying degrees of support to exercise those rights and duties.

Finally, disability rights must be properly enforced. They must also be accompanied by coherent policies and strategies for social change, appropriate funding and effective monitoring (Crowther 2017). It is essential that policy makers and those responsible for the enforcement of laws and regulations ensure that these are also applicable to and suited to the needs of people with dementia (see also section 6.2 on policy in practice).

Summary of key points raised in this section

  • People make sense of disability in different ways, which are sometimes described as “models” of disability.
  • —These models have developed over time in a fairly linear fashion but exist alongside each other because different people find meaning in each of them.
  • —With the possible exceptions of the moral/spiritual and medical model of disability (considered by many as pejorative or an inaccurate interpretation of disability forming the basis for potential abuse, oppression and exploitation), each model aims to be progressive. It builds on some elements of existing models, sometimes responding to a perceived gap or flaw and often having a particular focus (e.g. on societal barriers, human rights or the experience of impairment).
  • The way that people make sense of disability can have a considerable impact on the lives of people with disabilities and their family and friends because most models reflect a certain understanding of the cause and hence of the way to address disability.
  • —Table 1 below provides an overview of how some of the different models of disability relate to dementia and the possible implications of each for people with dementia.

Table 1: (Some) Models of disability in the context of dementia

Model of disability

How the model relates to dementia

Implications for the person with dementia

 

 

Moral/spiritual

Dementia is considered a curse or moral flaw in the individual. Dementia is visited upon the individual as retribution or as a divine test.

The person is subjected to prayer, seeking a miracle cure or spiritual ‘healing’

interventions. Some people may feel inspired and able to cope as a result of their religious

or spiritual beliefs.

 

 

Medical

Dementia is considered as resulting solely from biomedical causes and sometimes perceived as a personal tragedy. The flaw is considered as being in the individual only.

This aims to cure or ‘fix’ the person with dementia with medical interventions or make him/her fit in. Others (e.g. doctors) are considered to know what is best. There is

little or no voice for the person with dementia.

 

 

Social

Dementia is considered an impairment causing disabilities as a result of the social/ structural arrangements in society.

The focus is on altering the social/structural environments to eliminate or mitigate the negative experience of disability. The person with dementia is involved in leading the decisions and in collective action to achieve change.

 

 

Biopsychosocial

Dementia is considered a multi-dimensional and a health experience that occurs in a context. Disability, ill-health and human functioning involve interactions betweenbiological, psychological, socialandenvironmentalaspects.

Medical, psychological, social and environmental influences on dementia as a health condition, functioning and disability should all be addressed. The person with dementia is involved in decision making and in collective action to achieve change.

 

 

 

Reinterpreted social

Dementia is considered a health condition, which together with contextual factors, accounts for the individual’s (social and psychological) experience of dementia in the broader social context. Thepersonal experienceof dementia (and of related physical, sensory and mental impairments) is considered as well as social and environmental factors.

In addition to altering the social/structural environments (as with the social model), there is greater emphasis on how people with dementia experience various impairments

(as well as possible resulting disability) and also require care, support and protection where necessary. The person with dementia is involved in leading decision making and in

collective action to achieve change.

 

 

 

Human rights

Dementia may be seen as a disability and/ or health condition. The human rights model works with the social model(s) and the biopsychosocial model but recognises the person as an equal citizen (‘rights holder’) and others as having duties and responsibilities (‘duty holders’).

The person with dementia has his/her rights upheld and experiences full inclusion and equality. People with dementia are active subjects and fully included citizens (e.g. in keeping with the PANEL principles mentioned on page 14).

 

 
 

Last Updated: Tuesday 13 February 2018

 

 
  • Acknowledgements

    The discussion paper “Dementia as a disability? Implications for ethics, policy and practice” received funding under an operating grant from the European Union’s Health Programme (2014–2020).
  • European Union
 
 

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