How might the cultural significance of storytelling in Deaf communities influence the

development of a life story work intervention for Deaf people with dementia?: A

conceptual thematic review

Alys Young, Emma Ferguson-Coleman, John Keady

Corresponding author:

Professor Alys YoungSORDDivision of Nursing, Midwifery and Social WorkUniversity of ManchesterM13 9PL. UK

Email: alys.young@manchester.ac.uk

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Abstract

Although life story work is an established form of support for people with dementia and their

carers, culturally Deaf people who are sign language users have been excluded from this

practice. There is no evidence base for the cultural coherence of this approach with Deaf

people who sign, nor any prior investigation of the linguistic and cultural adaptation that

might be required for life story work to be effective for sign language users with dementia.

Given the lack of empirical work, this conceptual thematic literature review approaches the

topic by first investigating the significance of storytelling practices amongst Deaf

communities across the lifespan before using the findings to draw out key implications for the

development of life story work with culturally Deaf people who experience dementia and

their formal and informal carers (whether Deaf or hearing). The reviewed work is presented

in three themes: (i) the cultural positioning of self and others (ii) learning to be Deaf (iii)

resistance narratives and narratives of resistance. The article concludes that life story work

has the potential to build on lifelong storying practices by Deaf people the functions of which

have included the (re)forming of cultural identity, combating of ontological insecurity,

knowledge transmission, the resistance of false identity attribution and the celebration of

language and culture.

Key Words: Deaf, sign language, life story work

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“Each time we tell a story, it is an opportunity to feed another person’s spirit and plant the

story’s wisdom deeper into our own souls.” (Banks-Wallace 2002: 423)

Introduction and Background

This review explores the potential for the development of a life story work intervention

specifically for Deaf people who are sign language users and who experience dementia by

considering the significance of story-telling in Deaf people’s lives. Although life story work

has become a routine component of dementia care in many settings amongst hearing people

(Gridley et al. 2016), amongst Deaf people who are sign language users, it is largely

unknown. Furthermore, there is currently no such intervention available that is linguistically

and culturally tailored to Deaf people who experience dementia and no available resources on

which to draw. We first briefly describe this population and define life story work in the

context of dementia before focussing on why the cultural significance of stories and

storytelling practices within Deaf culture and Deaf communities should be attended to as a

precursor to the development of a bespoke life story intervention for sign language users with

dementia. Throughout, we use the term ‘story’ to refer to the content, themes and form of a

narrative, ‘storytelling’/’storytelling practices’ to include aspects of the context and

conditions of telling and ‘storying’ as the process of transformation of experience or

knowledge into stories.

Deaf people who use a signed language, such as British Sign Language (BSL),

conventionally referred to using an upper case ‘D’ (Woodward 1975), are distinct from the

larger populations of people deaf people (lower case ‘d’) who use spoken language (Young

and Hunt 2011) and the majority of whom will have experienced age-related hearing loss

(Lin 2012). Their distinction lies in the recognition of Deaf people’s cultural-linguistic

identity (Ladd 2003; Lane 1995). In the UK, BSL is officially recognised as an indigenous

language (Department of Work and Pensions 2003; BSL (Scotland) Act 2015) and signed

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languages are recognised in many nation’s constitutions (Jepsen et al. 2015; Wheatley and

Pabsch 2012). Linguistic scholarship has established that signed languages throughout the

world are fully grammatical, visual spatial, living languages distinct from the spoken

languages of the nations in which they exist with no vocal elements and no orthographic form

(Sutton-Spence and Woll 1999; MacSweeney et al. 2007). For sign language users, to be

Deaf is not regarded as a deficit, but rather a source of positive identity and marker of cultural

affiliation with shared values and life experiences (Ladd 2003), some of which transgress

national boundaries (Haualand et al. 2016). From an ontological perspective, Deaf sign

language users are visual beings (Bahan 2006, 2008) whose use of a visual, spatial language

is both means and embodiment of their narrative (Young, Ferguson-Coleman and Keady,

2014). This unique epistemological positioning is increasingly being explored in a range of

research studies (e.g. Friedner and Kusters 2014; Paul and Moores 2010; Hauser et al. 2010).

As a narrative method, life story work is used extensively in hearing communities to

support people with dementia (Gridley et al. 2016; Department of Health 2011; McKeown et

al. 2010; SCIE 2017). At its heart, life story work enables the person to reflect on their life

experiences and position themselves as the primary narrator of their life regardless of their

dementia, as well as providing a means to acknowledge and reinforce personal preferences

and choices within their care (Keady, Williams and Hughes-Roberts 2005). Life story work

as a process has also been used as a tool to improve connections between people living with

dementia, their families and care professionals (Gridley et al. 2016; Hansebo and Kihlgren

2001) with Kitwood (1997), in his seminal work, identifying that life story work is a

cornerstone of authentic person-centred care. It builds on retained strengths for long term

memory and its practice typically culminates in the development of a physical product, such

as a life-story book which may utilise a range of visual, photographic and written media

(Baynes 2008; McKeown, Clarke and Repper 2006). Although the evidence base for its

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clinical effectiveness as an intervention remains contested (Kindell et al. 2014) its benefits in

terms of inter-subjective interaction and positive sense of wellbeing, both for the person with

dementia and their care partners, is stronger (Kaiser and Eley 2016; Gibson 2011).

However, the extent to which the practice of life story work requires cultural

adaptation to be meaningful and effective for those from a diversity of linguistic and cultural

backgrounds has barely been considered, other than in terms of ensuring the resources used in

its practice have a resonance with the community of users (e.g. Moriarty, Sharif and

Robinson 2011). Yet from anthropological, sociological and psychological perspectives it is

acknowledged that story telling as praxis and narrative as mode of interaction are of

themselves cultural artefacts in so far as they encompass the history, reflect the values and

perpetuate the positionality of cultures and communities (e.g. Banks-Wallace 2002; Eder

2007; Howard 1991). Analysis of stories and storytelling practices, particularly with respect

to indigenous peoples is also regarded of epistemological significance because it is through

how experience is storied that it is possible to understand how the world is known (and re-

formed and resisted). Furthermore, for ‘oral’ (non-orthographic) cultures in particular, the

primarily intersubjective nature of storytelling practice has ontological significance because

no tale can be told in isolation from those who ‘hear’, grounding the self in commonalities of

identification and response to the narrative.

It is, therefore, not unreasonable to contend that the practice of effective life story

work will, in part, be influenced by the extent to which it coheres with the cultural

significance of the practices of storytelling in any give cultural-linguistic community. In

developing a tailored, culturally sensitive, life story work intervention, the issue thus

becomes the meaning and impact of storying practices in people’s lives, not just the nature of

the resources that may be available to support life story work. In relation to Deaf peoples, it

has been argued that storytelling is a centrally defining cultural feature of sign language

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communities around the world (e.g. De Clerck 2017; Sutton-Spence and Napoli 2011). In

some respects this is similar to the importance of stories in hearing ‘oral’ cultures. Without

traditions of written texts in which to inscribe histories and knowledges, the signed story, as a

form of remembering, memorising and transmission, takes on an additional cultural

significance. The implications of this perspective for working with Deaf people with

dementia and for the development of a life story work intervention is the focus of this review.

We start from seeking to understand the cultural meanings, practices and significances

of storytelling in general for Deaf people who use signed languages before relating these to

the practice of life story work in the context of people with dementia. In so doing, we refer to

available evidence about Deaf sign language users with dementia and wider literature

concerning signed languages and Deaf culture(s). Finally, we draw attention to potential

conditions that might promote effective life story work as an intervention with this population

based on the insights from the review.

Method

There is an inbuilt contradiction and irony in undertaking a structured literature review of

published work focussed on the significance of storytelling in sign language communities.

Signed languages have no orthographic form and the publication of academic, evidence based

and research literatures in a visual language is rare (see http://dsdj.gallaudet.edu/ for an

exception). Also scholarly work that is published in a signed language usually remains un-

catalogued in the major searchable data bases of published articles, books and theses.

Therefore relevant literature published in non-signed languages have predominantly been

written in the past by hearing scholars (Young and Ackerman 2001; West and Sutton-Spence

2011) and more recently by the small but growing number of Deaf academics who publish in

written languages and reflect on that process (Kusters et al. 2017a).

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There is however, a proliferation of grey literature in signed languages in the form of

vlogs (visual blogs), recorded performance pieces such as those of signed poets and Deaf

actors (http://www.bslpoetry.co.uk/) and more formal policy, informational and educational

resources translated into or produced in a signed language (e.g. health literacy materials such

as: https://www.bhf.org.uk/heart-health/preventing-heart-disease/heart-health-in-bsl).

Mindful of the potential for the reproduction of exclusion of knowledge by adopting a

literature identification process that of itself would exclude signed literatures, but nonetheless

wishing to focus attention on scholarship and evidence of a high quality, we adopted a three

stage process to the identification of available literature for the review: (i) a conventional and

systematic search of key databases using specific search terms followed by a process of

refinement of hits in order to isolate highly relevant texts, (ii) a forward searching approach

based on references within those articles to other literatures whether written or signed,

evidence based or grey literatures, that potentially were of relevance, (iii) new searches for

specifically identified areas of interest, based on the results of (i) and (ii) in order to

contextualise or expand features of the review that were emerging based on how the

identified literatures had been thematically organised. These steps are expanded below.

Search Strategy One. A literature search was carried out of three databases ASSIA

(Applied Social Sciences Index and Abstracts), ERIC (Education Resources Information

Centre) and PsycINFO (American Psychological Association Information database) using the

search terms Deaf AND narrative, Deaf AND life story, Sign Language AND narrative, Sign

Language AND life story. The inclusion criteria were: published in English language;

published between 1980-2017 (this was because prior to 1980 there was no formal

recognition of signed languages as languages in most countries in the world and therefore

little research associated with the language and its users); focused on Deaf adults, not

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children; involving any kind of storytelling or narrative practice including autobiographical

and autoethnographic stories. See Table 1 below.

[TABLE 1 HERE]

The abstracts of 62 hits were read, from which a set of further exclusion criteria were

imposed. These were: (i) if the article primarily concerned Deaf children, (ii) if the narrative

focus was exclusively from a linguistic perspective, (iii) if the focus of the work was not

culturally Deaf people, (iv) if the narrative practice concerned studies of working memory

and cognition, (v) if the main focus was on narrative within written language production, (vi)

if the word ‘story’ was included with a generalised meaning rather than specifically

concerning storytelling and (vii) if the literature item was primarily focused on sign language

interpreters and the exploration of their domain of professional practice. The imposition of

the second set of exclusion criteria resulted in a reduction from 68 hits to 12 hits.

Stage two – forward search. From the reference lists of the identified literature, a

further 24 references to written material were identified as potentially relevant, 13 of which

were books, plus an additional seven web-based resources, four of which were in a signed

language. Less strict exclusion criteria were imposed on these identified literatures at this

stage in order to provide contextual breadth to the review and the potential inclusion of

specific illustrative examples e.g. of particular performances or a category of literature in

general e.g. folklore. We are not assuming the list of identified stage two literature is

exhaustive. At the end of stages one and two the identified literature was read several times

independently by authors A and B in order to develop a thematic structure by which the

literature might be presented and discussed. Two questions guided this process whilst

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reading: (i) “What are the purposes, roles and practices of stories and storytelling for Deaf

peoples?” and (ii) “What might these imply for the development of life story work with Deaf

people with dementia?”

Stage three of the literature review was iterative and occurred simultaneously to the

writing out of themes while issues requiring broader theoretical contextualisation emerged as

well as specific linkages to life story work with people with dementia. It consisted of

targeted searches for identified issues, for example, literature concerning stories of resistance

in histories of oppressed peoples, or narrative as a form of educational practice. Twenty-

eight sources were identified.

The initial themes identified by each reader are shown in Table 2 and following

discussion the final ones used to structure the review. It is perhaps of relevance to emphasise

that the authors who carried out this analysis differ in their academic and personal

biographies which was viewed as strength in this process. Reader One is a culturally Deaf

person who has specialised in the academic study of dementia amongst Deaf people. Reader

Two is a hearing person who has worked with Deaf people throughout her academic career as

a social scientist and whose academic biography includes the study of fiction and literature.

[TABLE TWO HERE]

In presenting the review, our approach is one of conceptual thematic review rather than

thematic metasynthesis (Thomas and Harden 2008) as very little empirical literature was

identified. Given our main sources did not constitute primary data, no formal assessment of

the quality of the literature identified was undertaken.

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Cultural positioning of self and others

Storytelling is repeatedly identified in the literature as a distinct cultural practice evident in

Deaf communities (De Clerck 2017). There are many stories amongst Deaf peoples that,

with only slight variations, are similar around the world (Carmel 1987; Bahan 2006; Sutton-

Spence and Napoli 2011) and which have been regarded as one indicator of Deaf people’s

unique transnational identity (Haualand et al. 2016). However, stories have meaning, not

only as representations and expressions of Deaf culture, but also storying practices are an

active means through which cultural identity may be explored and formed. As De Clerck

(2017) argues, Deaf identities emerge through contextual and collective learning practices

between Deaf peoples in signed languages; story telling is one vehicle of such practices as the

recurring themes and subjects of shared stories reveal.

Knowing I am Deaf

The vast majority of Deaf people worldwide do not grow up with an understanding of being

Deaf as a source of cultural identity and without the use of sign language. Fewer than 10 per

cent of Deaf people have Deaf parents (Mitchell and Karchmer 2004) and thus cultural-

linguistic identity is rarely transmitted inter-generationally. How one realises one is Deaf is a

universal story, told and retold by individuals around the world. It charts the transition from

awareness in a medical sense of not-hearing (deaf), to an acknowledgement of affiliation with

other Deaf sign language users and that this could be a source of linguistic pride and cultural

identity that is positive. Such narratives are variously described in the literature as a

‘discovery story’ (Bahan 2006), a ‘coming out story’ (Sutton-Spence 2011), or a ‘conversion

narrative’ (Hole 2007). As McIlroy, a then oral deaf adult, remarks on first having had

access to the personal stories of Deaf people who signed (McIlroy and Storbeck 2011: 503):

“I found Deaf people who proudly affirmed themselves to be Deaf. This revelation blew my

mind”. Sutton-Spence (2011) comments that the significance of Deaf people sharing their

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stories about when they first realised they were Deaf lies in the opportunity that the story

provides for a shared experience to be acknowledged and reinforced – the story becomes the

cultural marker of identity to self and others. Hole’s (2007) suggestion that such stories are

‘conversion narratives’ perhaps misses the point of the person’s cultural-becoming through

the telling of new identity, emphasising instead identity as an affiliation to which one

publicly testifies and therefore is recognised.

However, in other examples, the transcendence to ownership of a cultural identity is

not so clear cut with some authors exploring positions of ‘in-between status’ within their

biographical narratives (Brueggemann 2009; McDonald, 2014a; De Clerck 2017). For

example, McDonald (2014b) argues that she became deaf through narrativising her

experiences through writing down her personal journey as a memoir, and in so doing,

answering her own questions about her newfound identity. Although recent scholarship has

increasingly emphasised the situational, transactional, fluid and intersectional nature of Deaf

identity(ies) (e.g. Napier and Leeson 2016), with some scholars rejecting a d/D distinction

(e.g. De Clerck 2010), nonetheless stories emphasising ‘knowing I am Deaf’ claim an

important identity for many Deaf people in response to perpetual experiences of

marginalisation by majority societies, an approach Ladd (2003) refers to, after Spivak (1990),

as one of ‘strategic essentialism’.

Everyday experience told as stories

Personal life experiences told as stories is another frequently recurring use of storytelling in

Deaf communities. Several functions appear in the literature, all in some way connected with

the building, affirming and strengthening of cultural identity and a sense of belonging. For

example, it is common for Deaf people to tell each other stories that are about the realities of

everyday life as a Deaf person (Bahan 2006). Many of these occur in performance, in signed

languages and, until relatively recently, rarely captured or regarded as visual literature.

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Being Deaf can be an isolating experience as much of it is lived in the mainstream

amongst others who do not sign or who do not share an understanding of the cultural identity

that being Deaf embraces, or who assume Deaf people should be treated as disabled or have

low expectations of what a Deaf person might be able to do. Consequently, many stories

challenge these assumptions and stereotypes, for example they might portray how a Deaf

individual was able to overcome barriers imposed by individuals (usually hearing) or systems

that directly or indirectly discriminate against Deaf people’s participation; a genre described

by Ladd (2003: 330) as ‘1,001 small victories’. It is suggested that the sharing of such stories

produces a collective recognition of a common experience that enables the discovery of

solidarity and building of resilience. The well-known ‘Deaf comedians’ in the 1980s and

early 1990s in the UK had many sketches that essentially lampooned the poor hearing people

who perpetually underestimated the cleverness (in the sense of canniness) of Deaf people.

From Bahan’s (2006) point of view, the response to such stories provides an

indication of the extent to which a person might recognise and affiliate with Deaf cultural

values and Deaf identities ranging from simple recognition of a shared life experience but

remaining resistant of belonging; to something more evocative such as embracing that one is

Deaf, with a lifelong membership of a community, sharing its culture and values. Bienvenu

(1994) argues that humorous reflections on everyday life as a Deaf person create the

opportunity to bond over shared experiences and to share the knowledge that one is not alone.

They also serve to reinforce the boundaries of the ‘in group’ and its values and characteristics

and by which the ‘out group’ might be known (Sutton-Spence and Napoli 2011).

Summary of relevance to the creation of life story work

These examples reveal the close relationship between identity development and storying

practices amongst Deaf people, the majority of whom will have been born outside of sign

language communities. They also reveal the function of shared stories and storytelling as

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interactive and inter-subjective practices in combating ontological insecurity in societies that

may fail to recognise the visual orientation and linguistic of Deaf peoples. Their impact on

strengthening and perpetuating the bonds of mutual kinship is fundamental.

One of the rationale for life story work with people with dementia is the potential of

the method to enhance and perpetuate someone’s sense of identity. This may seem fragile

both as a result of the effects of the progression of dementia which cognitively threatens the

relationship between memory, identity and sense of self (Kontos, Miller and Kontos 2017;

Caddell and Clare 2011) and as a result of the attitudinal responses of others to someone with

dementia, who may no longer see the individuation of the person but rather only the illness

(Sabat 2003). In the case of Deaf people, stories of cultural positioning of self and others

reveal how such conditions of identity threat and invalidation are hardly new experiences and

how storying practices have been an essential means of combating these effects.

Learning to be Deaf

Being on the inside

Ladd (2003) coined the term ‘Deafhood’ to describe not just the process of cultural and

linguistic acquisition but the more existential processes of being and becoming in order to be

Deaf. He locates the process firmly within community, the collective and history of sign

language peoples. Fundamental to his argument is that the ‘I’ of an individual journey is not

possible without the ‘we’ of the community. For De Clerck (2017) (Deaf) identity is

inseparable from a process of learning that is continual, contextual and contingent on the

indigenous knowledges of other Deaf people and a personal experience of awakening.

Shared stories and the practices of storytelling are therefore conceived of by both authors as

epistemological in that they are one of the vehicles by which these processes of identity

discovery and learning to be Deaf may take place. Stories offer a positive way in which Deaf

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people may challenge their own perceptions of being outsiders in wider society and learn to

become insiders of their own community.

Bahan (2008), for example, a well-known Deaf story teller and academic, instigates

such a sense of belonging by sharing his personal viewpoints on what it means to be a sign

language user, or in his own words, ‘a visual variety of the human race’. This term is a neat

inversion of the title of a notorious tract by Alexander Graham Bell (1884) “Memoir on the

formation of a deaf variety of the human race” where Bell argues for the sterilisation of

d/Deaf women and the banning of d/Deaf people marrying each other in order to prevent the

reproduction of a new generation (Lewis 2007). Through his stories, both written and in

performance in America Sign Language, Bahan (2008) sets out to show Deaf people what it

means to be Deaf by putting the spotlight on everyday practices that they may not value or

consciously recognise as indicative of being Deaf. For example, in one of his stories Bahan

(2008) describes a ‘hearing’ a person walking downstairs into his lounge. He has not actually

physically heard footsteps, but he uses his ‘Deaf Eyes’ to notice that his dog has pricked his

ears up in hearing the sound of movement and therefore deduces from this that someone is

entering the room. This innate visual peripheral reaction is common to Deaf people but may

not be positively appreciated until shared within a story-telling form through which the

familiar is made strange and a process of recognition and value initiated.

The above example is one small feature within a larger story; background context

within the flow of the narrative that serves to highlight and reinforce the fundamental visual

orientation of Deaf people, sometimes referred to as ‘people of the eye’ (Lane, Pillard and

Hedberg 2010). However other stories in their entirety are designed to foster mutual

recognition of shared experience and reinforcement of tacit cultural knowhow. For example,

one story told in many Deaf communities in different nations (with slight variations) is about

the Deaf man who returns to his hotel late at night only to realise he has forgotten his room

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number where also his Deaf partner is asleep. His solution is to honk his car horn loudly and

repeatedly. He scans the external-facing windows of the hotel bedrooms to spot the one

where nobody has put the light on (because they have not been disturbed by the sound). That

is his room. The humorous reaction to such a story amongst other Deaf people unites around

a sense of shared experience, pride in finding a ‘very Deaf’ solution and an awareness of the

advantages of being Deaf over those who unfortunately hear.

History and positioning

In learning to be Deaf, historical learning about ancestry and roots is important also and

reflected in storytelling. For example, the Canadian Deaf Association’s honouring of Deaf

elders is firmly rooted in the significance of their life stories for the freedoms enjoyed by the

present-day Deaf community:

“The Canadian Association of the Deaf – Association des Sourds du Canada

recognizes the special talents and knowledge of Deaf seniors. It was their

generation which fought for the right to recognition, dignity and acceptance of the

Deaf languages and cultures in Canada. They led the long fight for better quality

Deaf education, better jobs and training, more accessibility to universities and to

society … They kept the Deaf culture alive and thriving at a time when non-Deaf

society still resisted accepting its existence and its legitimacy” (http://cad.ca/issues-

positions/seniors/ ).

This sense of present values and identity appreciated through the stories of the past is also

evident in the growing number of Deaf life history projects, archives and exhibitions

throughout the world such as the Ugandan Deaf Community’s work on Deaf history,

community and emancipation (De Clerck 2015, http://blog.britac.ac.uk/telling-the-full-

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storydocumenting-the-emancipation-of-deaf-ugandans/) and the British Deaf Association’s

online heritage archive (BDA 2015, https://bda.org.uk/share-deaf-visual-archive/).

It is also through the (re)telling of stories about events of significance in Deaf cultural

heritage and history, that it becomes possible for a Deaf individual to position another person

in relation to their own and the community’s history. For example, whether someone was

also present at that event, such as the Deaf President Now! protests in the US (Christiansen

and Barnartt 2003) creates an affiliation. In the UK whether someone understands a particular

allusion such as the ‘out of the shell’ conference (British Deaf Association 1990) or the

British Sign Language marches that were organised in the late 1990’s by the Federation of

Deaf People (Beschizza, Dodds and Don 2015) would serve to place that person within the

UK’s Deaf historical landscape. Stories of presence, recognition and place thus serve to map

Deaf individuals against others’ histories and chart bonds of kinship.

Personal and community stories are also a primary means by which Deaf people have

conveyed to non-Deaf people the richness of Deaf lives and meaning of Deaf culture. Padden

and Humphries’s book (1998) “Deaf in America, Voices from a culture” is an early example

of this genre. Deaf filmmakers and theatre companies, such as Deafinitely Theatre in the UK

and the National Theatre for the Deaf in the US, amongst many other such companies, have

also played their part in storying Deaf ways of life to the external world through films such as

Love is Never Silent (1985) http://www.imdb.com/title/tt0089510/ and Through Deaf Eyes

(2007) http://www.imdb.com/title/tt0487158/. These are distinguished from the more

controversial portrayals of Deaf lives that have been created by hearing, non-Deaf affiliated

writers and producers such as La Famille Belier (2014)

http://www.imdb.com/title/tt3547740/. Through stories of Deaf families, growing up Deaf

and leading a life as a Deaf person, those unfamiliar with the culture gain a window into it

and those who know it well see Deaf lives proudly represented to the mainstream, external

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world. The narrative form is a powerful medium through which to build knowledge and

awareness amongst outsiders through its ability to imply, infer and feel, not just inform about

Deaf cultural life.

Summary of relevance to the creation of life story work

These functions of stories and storytelling clustered around ‘learning to be Deaf’ reveal both

inward (community centred) and outward (wider society) processes that utilise creative

means of communication and knowledge transfer (the narrative form) to develop bonds,

enable expressive connections between past and present, chart the fluidity of insider and

outsider positioning and generate pride in roots and contribution to one’s own and others

futures as Deaf people. One of the functions and theories of change effects associated with

life story work in dementia care is its potential to create a platform for interaction and

communication between carer and those cared for (Gridley et al. 2016; Gibson 2011). It is

also seen as a means of contextualising current behaviours in the context of an individual’s

past to render these more explicable and care more sensitised to them. For the majority of

Deaf people with dementia who will require professional care, this will be from hearing

people usually with no experience or understanding of sign language and Deaf culture and

often in environments that are aural, speaking places (Hunt, Oram and Young 2011).

Furthermore, the heritage and milestones of Deaf people’s lives do not necessarily follow

those of the hearing majority as research on Deaf life scripts is beginning to demonstrate

(Clark and Daggett 2015).

Consequently, an important facet of life story work with Deaf people with dementia in

care environments lies in its potential to unlock carers’ awareness and understanding of the

alternative histories of Deaf people’s lives which cannot be summarised as the same as others

only without the ability to hear. Evaluations of the processes of change and mechanisms of

outcomes in life story work currently are unable easily to differentiate between the effects of

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the actual life story work process and/or the effects of simply having provided quality time

and means of inter-subjective communication (Gridley et al. 2016). However, if this

approach is to work in care situations where carers will mostly be hearing outsiders to the

Deaf community, then the function of stories in learning to be Deaf will also be essential for

those non-Deaf people.

From Deaf communities’ perspectives’, learning to be Deaf with dementia is a

relatively new consideration. There has been both a lack of accessible information in signed

languages about dementia and poor understanding of its effects within the Deaf community

(Drion and Semail 2016; Ferguson-Coleman, Young and Keady 2016) which together have

meant general awareness has been under-developed. Deaf people’s personal stories of living

with dementia or caring for Deaf people remain rare (for exceptions see Ferguson-Coleman

2016; Parker et al. 2010). However, the storying of the experience of dementia through Deaf

people’s eyes to other Deaf people in a narrative form is starting to be explored as a

potentially more effective and culturally suited means of knowledge transfer than the

presentation of information bites, be those in a signed language and accessible via digital

means (Ferguson-Coleman, Keady and Young 2016).

Resistance narratives and narrative as resistance

Shared stories and narrative practices have long been recognised as integral to the cultural,

political and liberation experiences of many oppressed peoples throughout the world (Banks-

Wallace 1998; Jackson, undated). The content of stories is powerful both in (re)producing

and preserving proud histories of struggle and in creating alternative discourses to counteract

those that might predominate about one’s life and culture. Thus narratives both chart

resistance and serve as a means to resist.

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Many of these features of the function, cultural role and experience of shared stories

and the narrative form are found also amongst Deaf peoples throughout the world (De Clerck

2017) but until relatively recent times have not been recognised by those who stand outside

the culture. In part this is because Deaf people’s ‘oral’ tradition is silent, from the hearing

world’s point of view, and signed languages not fully recognised as language. Until the era

of democratisation of film and digital technologies, stories have not been easily recorded or

shared beyond those who could be present in real time and place (Young and Temple 2014:

Ch. 8). Furthermore it is argued that it is only in the past 30 years that Deaf scholars have

been able to access the academy and begin to take their place in capturing, interpreting and

telling Deaf resistance narratives (Kusters et al. 2017a).

Nonetheless, there is an increasing number of autobiographical and autoethnographic

accounts by Deaf people, (for a comprehensive list see McDonald 2014b and Snoddon, 2014

edited collection ‘Telling Deaf Lives’) although not all are cast as narratives of resistance.

Many have at their heart concerns to reflect, explore and position life experiences and

personal journeys (e.g. McDonald 2014b). Such exploration may itself be regarded as a

resistance process to those versions of self that individuals may have felt imposed upon them

by a hearing world. However, some autoethnographic and autobiographical work is

deliberately cast as narratives of resistance with the purpose to expose the rationale for

systems to which Deaf people have been subject and caused harm, to challenge apparent

truths about the limitations of Deaf people or expose sites of power over Deaf people’s lives.

See, for example, O’Connell’s (2016; 2017) personal narrative of deaf education in Catholic

Ireland and Alker’s (2000) personal account of experiences in a senior management role in a

deaf organisation.

The importance of such stories lies not just in their ability to produce an alternative

narrative to which wider society becomes exposed but to support the social mobilisation of

19

other Deaf people who recognise in the personal narratives aspects of their own lives. These

motivations were strong and effective following the recognition of signed languages as fully

grammatical, living languages in many post industrial nations where there was a surge in

publications which sought to chart aspects of Deaf cultural life and lives led through sign

language as a form of linguistic resistance (e.g. Padden and Humphries, 1988; Lang 2000).

Some of these earlier books took the form of biographical collections of first hand stories

exposed to the outside world and in print for the first time (e.g. Bragg, 1989; Taylor and

Bishop 1991). The impact of such stories at the time was not just to contribute to growing

conceptualisations of Deaf cultural identity as an alternative discourse to that of the

impairment and disability narratives that had predominated with respect to Deaf people, but

also to legitimise that oral history that previously had not been seen in print. Whilst Deaf

scholars today may challenge that process as a reproduction of the dominant hegemony

through the requirement for Deaf stories in signed languages to be seen in a written language

(O’Brien and Emery 2014), at the time their publication was an act of resistance, in

challenging those other books ‘about’ Deaf people and creating rich counter-narratives. As

Maia and Garcêz (2014: 366) note in their study of deaf story telling on the internet: “…

telling stories to a wider audience is a way to sensitize people who have different

experiences, so that they may understand the harm and oppression that others have gone

through… Narratives, thus, unfold specificities that need to be recognized “.

Such a specificity emerging over the past 20 years within Deaf communities and

scholarship is an emphasis on Deaf diversity and a resistance to the common representation

of Deaf sign language users as predominantly white, heterosexual, able-bodied people living

in the developed nations of the world (e.g. Fernandes and Myers, 2010). Biographical stories

have been integral to this new emphasis with collections created and shared within and

without the community charting gay and lesbian Deaf lives (Luczak 1993, 2007; Sinecka

20

2008), Black Deaf lives (Vasishta 2010) and nation specific Deaf diversities and

commonalities (De Clerck 2011; Friedner and Kusters 2014). In growing the internal and

external narratives of what it is to be Deaf, stereotypes are resisted originating both from

Deaf people and the hearing majority. However, the question remains as to who is storying

Deaf lives and to what effect, as the exposure of some of these narratives originates from

outsiders and ontological others, whether by class, hearing status, culture, sexuality or any

other ‘identity’ marker. Debates over who legitimately might or might not record, interpret

and tell the stories of a diversity of Deaf people(s) continue to engender new resistances

against those seen as continuing to contribute to hegemonic (often interpreted as ‘hearing’)

discourses about Deaf people (see, for example Kusters et al. 2017b). However as Fernandes

and Myers (2010: 9) caution, it is important to be wary of “proscribing terms of membership

in order to preserve Deaf culture at the expense of sustainability and social justice”. If

epistemology in part concerns who has the right to be a knower, how do we know and what

constitutes knowledge, then who controls the sharing of the story to which audiences and in

which form (language) is also of primary relevance to narrative as resistance.

Summary of relevance to the creation of life story work

One of the functions of life story work is conceptualised as a means of supporting and

continuing the personhood of the individual with dementia and retaining seem control over

how they are seen and known. This is linked with the perpetuation of wellbeing through the

restoration of presence, not absences as result of effects of dementia on one’s mind. It is an

argument that is easy to recognise in Deaf people’s resistance of discourses about them that

are reductionist, constraining and diminishing of the richness of Deaf people’s lives and

potential. These stories have also highlighted the important function of Deaf people storying

their own lives, not their stories being told by others. There are inherent resistances in who

owns the narratives and therefore who controls the scope of a person’s portrayal and by

21

extension, their life chances. It is a dynamic familiar to many groups of people who identify

with having been oppressed and for whom the creation of a counter narrative is an engine of

the processes of achieving equality.

Discussion

Polletta and Lee (2006: 699) remark in their study of public deliberation after 9/11, “the

capacity of reason-giving, storytelling, and other rhetorical genres to foster deliberation

depends on social conventions of the genre’s use and popular beliefs about its credibility

relative to other genres”. As the previous review has demonstrated, stories, the narrative

genre and the act of storytelling are fundamental practices in Deaf communities and amongst

a diversity of Deaf people(s) around the world. They serve key functions of cultural bonding

and positioning, transmission of knowledge, challenges to dominant discourses about Deaf

people’s identity and social worth and fosters mechanisms of intersubjective empowerment.

To see one’s life, values and experiences reflected back to self and possessing the power to

reflect back to others an alternative vision, life story telling in its numerous forms is a

familiar, acceptable, credible and powerful praxis for, with and by Deaf people. Life story

work with Deaf people who have dementia is, therefore, likely to be a culturally coherent

practice that builds on lifelong traditions of storying. We have outlined some of these in the

short summaries after each thematic section. However, the review has also started to reveal

some potential conditions that also must be fulfilled for life story work with Deaf people with

dementia to be effective. It is to these we now turn.

The first is that the life story work must be carried out in a signed language, such as

BSL. This might seem somewhat obvious but it is not given the range of commonly held

myths amongst hearing society about Deaf people and signed languages e.g. that signed

languages are not real languages, that most Deaf people can lip-read and that signed

languages are just a visual version of English, so it is perfectly possible to ‘manage’ without

22

communication in that language and make sense of hearing speaking people (Humphries et

al. 2017; Young and Hunt 2011). Our review has demonstrated that a Deaf person’s (sign)

language is a fundamental marker of their identity and sense of self in the world, portrayed

and reinforced by the content and modality of many stories. Not to use that language is not to

acknowledge that identity. The small amount of available direct empirical data from older

Deaf people with dementia supports this perception that in losing one’s language one is

losing one self (Young, Ferguson-Coleman and Keady 2014); a sentiment all the more

powerful for people whose language has been perpetually unrecognised or denied.

The second is the crucial role that Deaf person to Deaf person communication plays.

Again this may seem a rather simple thing to assert but is not something that Deaf people can

take for granted in everyday life in all situations and contexts. As our review has revealed, it

is the intersubjective and collective opportunities stories present to assert those fundamental

bonds of belonging and shared experience that are valued. This has been summarised from

an anthropological perspective as DEAF-SAME-ME (Friedner and Kusters 2014); an

ontological and epistemological statement in signed discourse that the translated phrase

barely captures. For life story work to be undertaken by someone who is not Deaf with a

Deaf person with dementia immediately breaks this identification of seeing oneself in others.

Within, what for many, may be a struggle to retain an identification of one’s self and one’s

place in the world in the face of dementia, it is a barrier that would be easy to remove.

Third, it is important to recognise that the personal and social history of Deaf people

will not necessarily mirror the history of the hearing majority for four distinct reasons. (i) For

the majority of Deaf people who are sign language users, linguistic and cultural identity has

been a process of awakening, learning and becoming which whilst an individual journey is

also a shared narrative. (ii) National historical events will not necessarily have the same

significance or be remembered/experienced in the same way (Deaf people’s memories of the

23

second world war is a good example of this (http://www.bslzone.co.uk/watch/world-war-ii-

unheard-memories-episode-1/). (iii) There are historical, social and cultural events that are

unique because of their particular importance to that community’s social history which may

not overlap with those of the majority community. (iv) For Deaf people, in common with

others who share a history of oppression, cultural heritage is also evidenced by the ways in

which the social relationships and political/historical discourse between majority and

minority (Deaf people) have also shaped Deaf people’s lives. Consequently, the structuring

of life story work and its processes will have to begin from Deaf people’s positioning in their

own and others’ histories which may not follow expected steps or usual trajectories.

Fourth, the review has revealed that integral to storytelling practices is the visual, not

just in the sense of signed languages being visual languages but in the ways in which stories

use Deaf people’s visual orientation in both content, form and narrative effects. Much of this

is familiarity with the expressive potential of space, positing of objects and visual

expressions. In this sense, Deaf people’s lifelong experience of the visual/gestural as

language is very different from an understanding of the use of gestures, facial expressions

and bodily enactments as compensation for verbal communication difficulties in dementia

(Novy 2018: 95). Therefore whatever technology may assist in the development and

practice of life story work with Deaf people with dementia is unlikely to be successful unless

it is able to exploit and follow Deaf people’s visual, embodied habitus. For Deaf people with

dementia the challenge may not lie in the loss of words and speech, but potentially in the

failure of others to enable their visuality, regardless of whether they have retained fluent sign

language.

Conclusion

The review set out to consider the potential for the development of a life story work

intervention specifically for Deaf people who are sign language users and who experience

24

dementia. As there has not been any previous work in this area to help guide practice, the

review adopted a transcending narrative position by exploring the place of stories in the

everyday life of a Deaf person and the cultural significance attached to storytelling for the

Deaf community as a whole. Whilst hearing and Deaf people share the same moments in time

and connection to the real-world environment, the biographical cues and markers in the

trajectory of a Deaf person’s life course to make sense of such connections are different from

the experience of hearing people. Not better or worse, just different. As the review has

highlighted, by applying this transcending narrative position to the specific situation of Deaf

people who live with dementia it became clear that any developed life story intervention

must, first and foremost, focus on the value and visual meaning of the story in the context of

its biographical, relational and cultural heritage. For Deaf people with dementia, stories will

continue to be shared in the real-world environment and they will continue to be expressed

through the sensory, visual and embodied actions that inform its telling. Consequently,

cognition can also be considered to be sensory, visual and embodied. The need for an

‘insider’ [Deaf sign language user] perspective to both take and make meaning from such

shared stories is a relational connection that will help to advance understanding and, more

importantly, the continuation of cultural identity for a Deaf person living with dementia.

Moving from this theoretical abstraction to meaningful life-storied practice becomes the next

step in this particular journey.

Statement of ethical approval

No ethical approval was required for a conceptual thematic review of pre-existing literature.

Statement of funding

25

The support of The Economic and Social Research Council (ESRC) and National Institute for

Health Research (NIHR) is gratefully acknowledged. The review forms part of work

programme 7 of the ESRC/NIHR Neighbourhoods and Dementia mixed methods study (Ref:

ES/L001772/1): www.neighbourhoodsanddementia.org

Contribution of authors

Young and Ferguson-Coleman conceived of the original idea and carried out the literature

searches and thematic classification of literature; Young was the lead writer and Ferguson-

Coleman and Keady the co-writers. All authors contributed written sections of the

manuscript and reviewed the final version.

Conflicts of interest

There are no conflicts of interest to report.

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