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Personhood and the personal experience of disability

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

Understanding personhood in the context of disability and dementia

In everyday usage, ‘person’ is usually just another term for human being. It is used to distinguish us from inanimate objects, machines, plants, animals and ‘spirits’. Discussions about personhood in relation to disability and dementia are pretty similar. They both tend to draw on the same philosophical theories. Having a disability (or an impairment or dementia) does not make someone any less a person than someone who doesn’t. However, some philosophical theories of personhood suggest that there are different types and levels of personhood. Sometimes, they are presented in such a way that they may have a negative impact on peo- ple with disabilities, affecting the way they are perceived, how some people with disabilities feel about themselves and how they are treated.

Philosophers tend to emphasise mental traits such as consciousness and rationality as the most relevant criteria in the definition of personhood. But to most people these traits are not as important as bodily shape (e.g. looking like a human being). Moreover, animals, however intelligent they may be, are not considered to be persons while humans, including infants and people with severe cognitive impairments, are (Sapontzis 1987, pp.48–49).

Personhood is usually connected to the moral realm. The expression ‘person’ is generally understood as implying a specific moral status. A person, in a moral sense, is a being whose interests must be respected. When we consider what is morally acceptable or preferable, we are morally obliged to take into account what will promote dignity or demean, benefit or harm, satisfy or dissatisfy, and so on, any being that is a person and that is likely to be affected by our actions. In other words, a person is a being with moral and social rights.

Some philosophers argue that moral personhood has different levels, in the sense that some beings are more persons than others. They state that in a moral sense, children are not full persons in comparison with adults (Sapontzis 1987, p.50). For example, children have rights to life, against abuse, and so on, although they are denied rights to property, marriage and voting. Some of their rights, such as autonomy, may be less fully respected than the corresponding rights of adults. In some cases, they are not held responsible for their actions. Similarly, it has been argued that some people, who are deemed to have very little in common with people in general, are ‘non- per- sons’ (Buchanan 1988). Such philosophical arguments are, at the very least, unhelpful and at most, deeply offensive and damaging to the dignity, wellbeing and, in some cases, even to the survival of people with dementia.

In philosophy, there are competing views about personhood but most accounts regard mental ability as a necessary condition. This includes being conscious of the world, thinking about it and seeking to understand it (see Peacocke & Gillett 1987). John Locke developed a new philosophical framework in Western philosophy for the pursuit of understanding and theorising about ‘the person’. According to Locke, a person is “a thinking intelligent Being, that has reason and reflection, and can consider itself as itself, the same thinking thing in different times and places”(Locke 1975/1690, Bk. II, ch. 27, sec. 9).

The Lockean conception of personhood represents the ideas, attitudes or activities that are shared by most people and regarded as normal or conventional in Western philosophy. It is usually agreed in philosophy that personhood is a moral issue warranting reflection and debate. The lives of beings of this sort (i.e. of persons), it is argued, possess a great psychological unity because of their highly developed cognitive capabilities (e.g. linked to conceptual abilities, understanding, problem solving and rational decision-making). Their advanced mental abilities enable their past and future experiences to form a meaningful unity, a biographical life (Buchanan 1988, Parfit 1984). In this view, personhood coincides with a threshold of moral worth whereby all beings above a particular threshold are considered equally morally valuable (e.g. McMahan 2002, Singer 1993).

With regard to dementia, Post (2006), argues that this hypercognitive definition of personhood overvalues what are often termed the ‘higher cognitive functions’ by comparison with other qualities such as humour, kindness and generosity. These other qualities are equally important to a shared concept of humanity and are not compromised when someone has dementia. The hypercognitive definition of personhood fails to take into account the emotional and relational needs and capacities of people with dementia. Such failure, combined with overlooking the importance of social interaction and considering some people as non-persons, may contribute towards additional loss of capacity and additional disability (Alzheimer Europe 2013).

Much of the most significant work on personhood and dementia has been carried out by Kitwood (1997). According to Kitwood (1997, p.8), the term personhood refers to ‘a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust’. In this view, a person with dementia does not forfeit the status of being a unique, and uniquely valuable individual as the result of a diagnosis of dementia. Rather, those without dementia have a special obligation to validate, maintain and enhance the personhood of those with cognitive disabilities. Beyond this, Kitwood suggests that the ‘malignant social psychology’ which often surrounds people with dementia in his view, can in fact exacerbate the symptoms of dementia (i.e. make them worse) and hasten the apparent progression of the condition. ”Dementia,” he says (1997, p.19) may be

“induced in part by the stresses of life. Thus anyone who envisages the effects of care as being “purely psychological” independent of what is happening in the nervous system, is perpetuating the error of Descartes in trying to separate mind from body. Maintaining personhood is both a psychological and a neurological task”.

Kitwood’s concept of personhood was influenced to some extent by the work of the German philosopher Martin Buber (1878–1965). Buber identified two different ways that people relate to one another, reflecting objectification or a genuine exchange (Alzheimer Europe 2013). These two ways are described through the word pairs ‘I-It’ and ‘I-Thou’9. The I-It mode of relating is one in which a person relates to the other in a cool, distanced, non-involved way. This fails to fully acknowledge the individuality of the other person as he or she is objectified. The I-Thou mode of relating, in contrast, involves meeting the other person in a genuine human exchange. With reference to the I-Thou relationship, Barich (1998) states, “You become a person (as opposed to an alienated and isolated individual) when you enter into relation with people.”

More recently, some philosophers have also argued, in the context of disability and personhood, that an individual’s moral worth can also be based on his/her relation to others (e.g. Curtis & Vehmas 2016, Kittay 2005, 2010, Vehmas & Curtis 2017). They maintain that the ‘human community relation’ is a significant, special relation that bestows moral value on those individuals who are part of that relation.

According to this view, a person can be considered by others as having value on the basis of a relation to some- thing/someone else. The idea is that once value has been bestowed10 in this way, that value then functions to bind all concerned, not merely those who bestow it. In this way, some human beings, who might otherwise be considered as lacking the necessary psychological properties to be persons, are recognised as persons as a result of certain relations they have to other people. But what relations are these? One example would be the relations that a person with profound intellectual disability or advanced dementia has to others as a result of having being born and cared for by human beings within a human community. These relations must be strong enough to generate obligations and as strong as those that exist towards any other person. Importantly, these relations are not purely biological. This is why they should not be called ‘species membership relations11’ but rather ‘human community relations’.

Precisely what this relation amounts to is difficult to describe. It is the relation that exists between each of us and every other human being. It is the relation that exists between a human and the rest of the human community as a result of having been born of human parents, brought up and cared for by humans, and in general, treated as a human within the human community. Naturally, the relation holds between different individuals and the rest of the community in different ways. For example, most people vote, work, pay taxes and engage in emotional and social interactions with others. However, it is not necessary for everyone (including people with various impairments, dementia or disability etc.) to participate within the human community in the same way or to the same extent. All that is required for the relation to hold is that an individual is taken into the human community and treated by the community as a human. Speaking at a conference on Alzheimer’s disease in 2014, Longneaux concluded that every person must be treated as a person, based on the premise that a human being who has feelings, even if unable to express them or to exercise autonomy, is a person.

Key messages

  • —For many people, ‘person’ is simply a term used to refer to a human being or to distinguish humans from non-humans (e.g. animals, machines, robots and even supernatural beings).
  • —Some philosophers associate the term ‘person’ with the possession of certain capabilities such as memory, reasoning and language, which unfortunately implies that some people (e.g. with memory problems) are not ‘persons’.
  • —Others suggest that personhood is based on relations between and towards other people.
  • —These relations imply obligations and the recognition of value (not just based on being a human being but on having been born, brought up and cared for by humans, and treated as a human within the human community).
  • —Being part of the human community is not dependent on the level to which a person can or does contribute towards society.
  • —All that is required is that a person is taken into the human community and treated as a person.

The individual and group response to disability

Your experience is not my experience

The sub-heading above is taken from an article by Devlieger and Albrecht (2000) who point out that we often implicitly assume that everyone experiences disability in a similar way. Another common assumption is that being recognised as having a disability can be empowering. Disability activists emphasise that discussions about disability should be led by people who are directly affected by disability, which in this case is people with disability resulting from dementia-related impairments. But this begs a series of questions:

  • — Do people with dementia want to identify with people with disabilities?
  • — Do they feel that they have enough in common?
  • — Do they face the same issues and have the same priorities as people with other disabilities?
  • — How would they feel about being described as having a disability or being disabled?
  • — Do they feel it labels them pejoratively?
  • — Do they feel that the potential empowerment sufficiently outweighs possible perceived disadvantages of being considered as having a disability?

These questions are difficult to answer, partly because literature is lacking on this topic and partly because people with dementia are not a homogeneous group. Tuija Takala (2009) highlights the danger of one-dimensional classifications (i.e. identifying solely with one group) and of failing to acknowledge that people choose their identities to some extent and belong to a number of communities12. This may also lead to overlooking the fact that some groups have a political agenda which does not reflect the needs of all the sub-groups. There are many sub-groups of people with dementia. Examples include:

  • —  homeless people,
  • —  Roma people,
  • —  people from ethnic minorities,
  • —  women (or men),
  • —  people with learning (intellectual) disabilities,
  • —  people from the LGBT+ community
  • —  and people who are in prison.

The origin and development of the impairment may also affect how it is experienced. As pointed out by Shakespeare and Watson (2001, p.12), “Congenital impairments14 have different implications for self-identity than acquired impairments. Some impairments are static, others are episodic (occurring only sometimes, not regularly) or degenerative (getting worse over time).” Within and across these sub- groups, there are varying similarities and differences in the way that disability is experienced.

Disability is not my sole identity

People have multiple, intersecting and overlapping identities. They may, therefore, find that at one point in time and in a particular context, they identify with disability and with people with disability, and that in another, they don’t. Disability should therefore not be viewed as a person’s sole or significant identity (Shakespeare 1996). People may also feel differently about disability depending on their perceptions of disability and who defines them as having one.

“There is an important difference in my associating myself with a particular group and others giving me the label” (Shakespeare 2006, cited in Takala 2009, p.131).

Not everyone wants to openly state that they have a disability or to advocate for people with disabilities. As one woman with disabilities stated:

“I’m not interested in celebrating a status, or not celebrating a status. I am just interested in living my life. I don’t have to have a banner that has to say, “disability is delightful.” I don’t have to have a banner that says, “being female is fabulous.” I’m female. I’m disabled. Don’t get in my way. Don’t bother me. Don’t deny me opportunity. That’s my basic political view” (Adrienne Asch, cited in Kroll 2012, p.65).

As Shakespeare points out, the goal of disability politics should be ‘to make impairment and disability irrelevant whenever possible, not to seek out and celebrate a separatist notion of disability pride based on an ethnic conception of disability identity’ (cited in Takala 2009, p.131).

It is therefore important to respect everyone’s right to accept or refuse, partially or fully, disability as part of their identity. We need to hear the voice of people with dementia from all walks of life, identify common experiences of disability and see people with disabilities as individuals (rather than as caricatures of a group we think they rep- resent, Takala, 2009).

Emotional and psychological impact

Accepting that one has a disability may have an emotional and sometimes psychological impact on a person. Some people may feel embarrassed or fear rejection or devaluation. Accepting or being labelled as having a disability may also have an impact on a person’s autobiographical and social self and on their self-concept. According to Harré (2004):

  • —  the autobiographical self is a person’s story of who they are,
  • —  the social self (or selves) consists of the qualities a person displays in encounters with other people and
  • —  the self-concept consists of the beliefs people have about who they are (about their qualities, the kinds of lives they lead etc.).

Many people who live with dementia will already have experienced some change in their self-concept and in their autobiographical and social selves (sometimes in a positive sense, recognising qualities they didn’t know they had). Some may have experienced social positioning (i.e. finding that their rights and duties are influenced by shared assumptions about what having dementia means) (Harré 2004).

In focus group discussions with the EWGPWD whilst drafting this report, some members described feelings of guilt, shame and anger linked to their experience of using or requesting services for people with disabilities. They described negative and even hostile reactions from other people which they felt were based on a lack of understanding of impairments and subsequent disabilities associated with dementia. Often such reactions seemed to be linked to their impairments not being visible.

“Like when you come out of the rest room and people look at you as if to say ‘What are you doing in there? There’s nothing wrong with you’” (member of EWGPWD).

“Sometimes when she is in the ‘disabled lane’ in shops, people question why she is there. They say she should get out of that lane. She refuses but also does not think that she should have to explain about her condition” (carer/supporter).

On the other hand, a clear theme, which emerged from the focus group discussion involving the EWGPWD, was that some felt that having a disability was considered more acceptable than having dementia and more likely to result in a positive response from others:

“I can’t speak for anyone else, but in XXX being disabled is much more acceptable than having a diagnosis of dementia. It’s a better label” (member of the EWGPWD).

“I would feel very happy saying I have a disability. If I say I have dementia, you know, they are going to say‘oh God, she’s mad’ and kind of ‘see you later!’ but you know, when you’re saying you have a disability – and maybe it’s where we live in all fairness – at home it’s a much much more accepted word. It’s totally accepted” (member of the EWGPWD).

Nevertheless, and in keeping with our earlier comment that people don’t all share the same experience, one member of the group expressed quite different views about identifying as a person with a disability. She later linked these to being considered abnormal:

“But then again, I think each one of you thinks differently. It’s how you think about yourselves. I’ve got a problem with it to be honest but we’re all different. Some people would be upset to go down that road. So, it’s for the individual. …..I really wouldn’t like to class myself as being disabled. I wouldn’t go about saying I’ve got disability. I think it would make me feel a bit…. you know” (member of the EWGPWD).

Stigma

Both dementia and disability are frequently associated with stigma. This also includes private stigma whereby a person or group internalises the perceived stigmatising attitudes of others and experiences or anticipates discrimination(Rüsch, Angermeyer & Corrigan 2005, Thornicroft et al. 2009). This may lead to people feeling devalued and fearing discrimination, even in the absence of any negative reaction from other people.

Accepting that everyone may experience some degree of disability at some point in their lives may eventually blur the boundaries, in a positive sense, between people with and without disabilities. Indeed, there is a growing awareness that ‘the disabled are same and different’ (Devlieger, Rüsch & Pfeiffer 2003). However, in many contexts, people with disabilities are still considered as ‘the Other’ (Murphy 1987) and people without disability continue to define themselves in relation to this ‘Other’, which is perceived as a kind of pathological population (Branson & Miller 2002).

In this section, we have emphasised the importance of recognising how people with dementia experience disability in different ways and the extent to which they may or may not wish to identify with people with other disabilities. The next section looks at some of the ways that identifying with disability may be beneficial. In particular, we look at how it can give access to certain rights, but also at some of the possible limitations of rights-based approaches to disability in the case of dementia.

Key messages

  • —Disability means different things to different people.
  • —People with disabilities do not constitute a single, unified group of people, do not all experience disability in the same way and do not all have the same goals.
  • —It can nevertheless be helpful, for those who want to, to group together to campaign for rights and raise awareness about disability.
  • —Not everyone with dementia wants to identify with disability. Doing so can have an emotional and psychological impact.
  • —Some people fear that they will be stigmatised if they identify with disability. Others, may feel that disability is less stigmatising than dementia, and that being considered as having a disability is empowering.
  • —More effort is needed to find out what people with dementia think and feel about dementia as a disability.

 

 
 

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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