ORIGINAL ARTICLE: ‘I am a normal man’: a narrative analysis of the accounts of older people with Down’s syndrome who lived in institutionalised settings

Abstract

• This study is about the life stories of six older people with Down’s syndrome who spent some part of their childhoods in institutionalised settings.• They have interesting and moving stories to tell about their lives. They talked about their childhood and current lives, their likes and dislikes, their strengths and difficulties and their hopes and dreams. They also spoke about the important people in their lives.• The participants did not talk about themselves as being ‘old’, ‘disabled’ or as having ‘Down’s syndrome’. They talked about themselves in other ways, such as being ‘normal’, being a ‘man’ or a ‘beautiful lady’.• The researcher learnt about herself whilst doing this study. She learned about the value of taking time to listen to people and she reflected on her own life story.

Full text

ORIGINAL ARTICLE
‘I am a normal man’: a narrative
analysis of the accounts
of older people with Down’s
syndrome who lived in
institutionalised settings
Jennifer Brown, (E-mail: Jennifer.Brown09@ymail.com), Karen Dodd, Surrey & Borders Partnership
NHS Trust, Ramsey House, West Park, Horton Lane, Epsom, Surrey, KT198PB, UK, and Arlene Vetere,
Department of Psychology, Faculty of Arts & Human Sciences, The University of Surrey, Guildford, Surrey,
GU27XH, UK
Accessible summary •This study is about the life stories of six older people with Down’s syndrome who
spent some part of their childhoods in institutionalised settings.
•They have interesting and moving stories to tell about their lives. They talked
about their childhood and current lives, their likes and dislikes, their strengths and
difficulties and their hopes and dreams. They also spoke about the important
people in their lives.
•The participants did not talk about themselves as being ‘old’, ‘disabled’ or as
having ‘Down’s syndrome’. They talked about themselves in other ways, such as
being ‘normal’, being a ‘man’ or a ‘beautiful lady’.
•The researcher learnt about herself whilst doing this study. She learned about the
value of taking time to listen to people and she reflected on her own life story.
Summary This paper is a narrative analysis of the accounts of six older people with Down’s
syndrome who spent part of their childhood in institutional environments. The
study aimed to find out how the participants talked about themselves. Different
types of narrative analysis were used, including those of Murray (Qualitative
psychology: a practical guide to research methods, London, UK, Sage, 2003), Gergen &
Gergen (Hist Social Psychol, Hillsdale, NJ, Erlbaum, 1984) and Labov & Waletsky
(Essays on the verbal and visual arts, Seattle, University of Washington Press, 1967). All
of the participants spoke about their childhood, current and future lives. Most
participants were able to reflect upon their strengths, limitations and hopes. The
analysis highlighted the commonalities across the accounts: loss, abuse, health,
significant others, transition, resilience and identity. Significantly, none of the
participants identified themselves as having ‘Down’s syndrome’ or a ‘learning
disability,’ nor did they identify with being ‘older’. Instead, individuals identified
themselves in relation to gender and social roles. The accounts varied in terms of
their form, structure, coherence and reflexive capacity. Clinical implications are
discussed.
ª2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities doi:10.1111/j.1468-3156.2009.00596.x
British Journal of
Learning Disabilities
The Official Journal of the British Institute of Learning Disabilities

Keywords Down’s syndrome, empowerment issues, history of learning disability, identity,
narratives
Introduction
Historical context
Older people with Down’s syndrome have lived through
some significant historical changes over the past 50 years.
These include the closure of institutionalised settings,
1
advances in healthcare technology and changes in societal
attitudes towards people who have a learning disability.
2
People with Down’s syndrome are now living longer. The
average life expectancy of an individual who has Down’s
syndrome has increased threefold and is currently in the
mid-fifties, (Trumble 2002).
Down’s syndrome and Identity
There is a lack of research into the areas of identity and
people with Down’s syndrome. Cunningham et al. (2000)
investigated the self-awareness of young adults. They used
direct and indirect questions about Down’s syndrome/
disability and photos of people with Down’s syndrome to
investigate the self-awareness of 77 young adults. The
authors reported that a person’s verbal mental age was
significantly associated with being able to make social
comparisons and form social categories of Down’s syn-
drome and disability.
There is a need to discuss older people who have Down’s
syndrome. In some ways this is a fairly exceptional group as
many have lived through the experience of institutionalised
care, which no longer occurs today. They are in the unique
position to talk about how their lives have changed since
leaving long stay hospitals. This will help us to understand
how historical, social and cultural factors have influenced
peoples’ sense of themselves. Another reason for exploring
how people with Down’s syndrome talk about themselves is
that historically people with disabilities have been repre-
sented by others (Atkinson & Walmsley 1999). Therefore, by
listening to participants talk about themselves, it is hoped
that they will feel empowered, which may facilitate a
change in the power relationship between the researcher
and the participants.
Social identity theory
There are different theories of ‘identity’ and ‘self’. Some
researchers suggest the self is a relatively stable concept
(Costa & McCrae 1992); others suggest it is more fluid and
made up of multiple identities (Mead 1934; Stets & Burke
2005). In line with the idea that the self is made of multiple
identities, one approach to studying identity and self-
awareness is ‘Social Identity Theory’ (Tajfel & Turner
1979). This theory proposes that being a member of social
groups is an important part of our self-concept. The theory
involves social categorisation and social comparison pro-
cesses. The outcome of the social comparisons contributes to
a person’s self-esteem: if a person belongs to a group, which
s/he perceives to be superior to other groups, s/he will feel
better about themselves.
In a literature review on how people with a ‘learning
disability’ view their social identity, Beart et al. (2005)
highlights that many people do not identify with the label.
She discusses possible reasons for this lack of salience
including: people being unaware of the identity as they are
being protected by others (Todd & Shearn 1997); not
identifying with the label as it does not fit with their lived
experiences (Finlay & Lyons 1998); being in denial as it is
too emotionally painful (Sinason 1992); not having the
cognitive ability to understand what the identity means
(Cunningham et al. 2000). The current study used Social
Identity Theory as a theoretical framework to explore
‘identity’ of older people who have Down’s syndrome.
A narrative approach
The research method used was a qualitative approach called
narrative analysis. This is a phenomenological approach,
whereby the researcher is interested in participants’ percep-
tions and meanings of particular phenomena through the
way they talk about their lived experiences. This was
important to the authors, as they were interested in staying
close to the participants’ own words. There were several
other reasons for choosing this approach. Firstly, narrative
analysis is concerned with how a person’s story is shaped by
the historical and cultural context, which the authors
believed would be of significance in this study, e.g. the
effects of institutionalisation. Secondly, narrative approaches
have been used to study the concept of identity, Lieblich et al.
(1998). Furthermore, researchers have demonstrated how the
approach is a non-threatening and ethical way of carrying
out research with people with learning disabilities (e.g. Booth
& Booth 1996).
1
Institutionalised settings and long stay hospitals will be used
interchangeably throughout this study.
2
The term ‘learning disability’ will be used in this study, as this is
the accepted terminology used by the health and legal systems.
2J. Brown et al.
ª2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities

The current study aimed to answer the following research
questions:
•When invited, how do people with Down’s syndrome
who lived in long stay hospitals tell their life stories?
•Do people compare themselves to others (downward/
upward social comparisons) and if so, how?
•Do people have positive or negative self-concepts? Are
they aware of what they can and cannot do in relation to
others without a diagnosis of Down’s syndrome?
Method
Participants
Six participants were recruited via a local NHS Trust.
Table 1 shows the main demographic details of the partic-
ipants. Participants were selected who met the inclusion
criteria below:
1. Diagnosis of Down’s syndrome
2. Men or women
3. Older than 50 years of age. (For the purposes of this
study, the authors decided upon ‘older’ being over the
age of 50 years old. This was based on life expectancy
data.)
4. Those participants with relatively good expressive and
comprehensive language skills. This was assessed using
their scores on the Picture Naming
3
subtest of the Neuro-
psychological Battery for Dementia in Adults with Intellec-
tual Disabilities (NAID), (see Crayton et al. 1998; Oliver et al.
1998, 2005). Participants were selected if they scored over 10
on Picture Naming.
5. The authors looked at various health considerations:
none of the participants had a diagnosis of dementia and
none had any significant hearing or visual problems.
6. Spent some part of their childhood living in a long stay
hospital.
7. English was their first language.
4
Ethical issues
Ethical approval was obtained from the Local Research
Ethics Committee and the University Advisory Committee
on Ethics. The main ethical issues included: ensuring that
the participants understood what was being asked of them
and acquiring consent; explaining to participants that the
interview may bring up difficult issues; reducing the
potential for distress through developing a good rapport
with participants and using a similar approach to Booth &
Booth (1997) who adopted an informal style of interviewing
to create a relaxed atmosphere; maintaining anonymity
throughout the research process via changing any poten-
tially identifying details about the participants.
Interview procedure
This study used a similar interview format to that of Booth
& Booth (1997) who carried out three interviews with each
participant in their own homes. A semi-structured approach
was used as it was assumed that the participants might not
have had the opportunity to tell their life stories before and
hence may have had difficulties without some prompt
questions.
The interview began by asking open-ended questions
about a person’s life such as, ‘Please tell me about yourself’.
Then questions about a person’s current life were asked
including, ‘What do you like doing here?’ It was decided to
ask these more concrete questions relating to a person’s
Table 1 Demographic information of the participants
Name* Age Living situation Ethnicity Daily activities Married
Elliot 50 Residential home supported
24 hours a day
White, British Workshop for people with
learning disabilities.
No
Lily 50 Residential home White, British Workshop for people with
learning disabilities
No
John 55 Residential home White, British Day centre No
David 55 Residential home White, British Day centre No
Christopher 56 Residential home White, British Day centre No
George 53 Residential home White, British Day centre No
*Names have been changed.
3
The Picture Naming subtest involves showing a participant 14
pictures (and two practice pictures), which have been taken from
the British Picture Vocabulary Scale (BPVS), ranging from number 1
(hand) to 23 (arrow). The participant is asked to name each picture.
Crayton et al. report that the Picture Naming subtest of the NAID
has good reliability (Cronbach’s alpha = 0.87; Spearman’s Brown
split half reliability = 0.90, K. Dodd, personal communication, 14
May 2007).
4
This was because English is the main researcher’s first language
and it was believed that meaning and understanding may have
been lost if an interpreter was used. In addition, resources were not
in place to use an interpreter.
‘I am a normal man’ 3
ª2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities

current life, due to the authors’ wish to limit any potential
distress. The interview then moved on to asking about
significant past events such as, ‘Where did you live before
here?’ Then, questions relating to self-concept and social
identity were asked including, ‘What are you good at?’
Finally, questions about future aspirations were asked such
as, ‘What are your hopes in life?’
All interviews were audio-digitally recorded with the
participants’ consent. Booth & Booth’s (1997) suggestion of
using photographs and personal objects was used to facilitate
the interview process. Participants brought along certificates
of achievements, sports awards and photos. After the first
interview, genograms and Makaton pictures were used as a
way of considering participants’ non-verbal abilities.
Data analysis
The data were analysed using a narrative approach, which
drew upon ideas from different writers. Michael Murray’s
(2003) approach was initially used whereby a summary for
each person’s account was written and the main features
were highlighted in the form of a three-part story (begin-
ning, middle and end
5
). Additional analyses were carried
out on the narrative accounts including considering the
narrative structures (Labov & Waletzky 1967), identifying
the narrative forms (Gergen & Gergen’s 1984) and consid-
ering how the accounts were influenced by broader societal
and cultural factors. After analysing each participant’s
account, a comparative analysis of all six accounts was
carried out whereby the main themes were identified.
Quality control checks
Elliot et al.’s (1999) criteria for assessing the quality of
qualitative research were used. This involved the main
researcher owning her perspective through making her
assumptions explicit in a research diary, situating the
sample by providing basic descriptive data and grounding
the main findings of the data in the form of direct quotations
from the interview transcripts. Supervisors were asked to
read the data and the main researcher attended a Narrative
Analysis group whereby a colleague carried out an inde-
pendent audit. These quality control checks confirmed the
credibility of the data, ensured coherence and assessed
whether the findings resonated with the reader.
Results
Six life stories were co-created by each participant and the
main researcher using Murray’s (2003) framework of
having a three-part story with a beginning, middle and
end. The accounts varied in terms of their content,
structure and form. The following section will present
the main themes and describe the similarities and differ-
ences between peoples’ accounts in terms of narrative
form and structure.
Narrative themes
The main themes were as follows:
Loss
A sense of loss pervaded throughout all of the narrative
accounts. Most participants spoke about the sadness of
losing their parents. Speaking about his mother’s cremation,
Elliot said, ‘It was very very sad…I was crying. I was
crying. My mum. My brother. Everybody was crying.
Crying all the time’. Similarly, David reflected on his
sadness over the death of his parents, ‘And my mum and
dad died as well…Gone to heaven…. I was sad’. Most
participants spoke about this sadness, apart from Lily who
described how her mother was living in a ‘different world’.
Abuse
Many participants spoke about how they had experienced
physical abuse whilst living in the long stay hospitals. David
frequently mentioned being assaulted whilst he lived in the
hospital. He said, ‘Someone hit me once…Big Mick... He
whacked me in the face. (He demonstrates being punched in
the face)…Bite my ear once. (Points to his ear)…I was really
frightened…I don’t want to go back there again’.
Transition
All of the participants spoke about moving homes and
living in different places. For example, Lily and Elliot both
spoke about living on many different wards in the hospital.
The majority of participants preferred their current way of
life as opposed to living in the institution. Lily explained
about liking her current ‘freedom’ and having her own
possessions. Elliot talked about liking the surroundings of
the hospital; ‘They had some lovely fields over there’.
However, overall Elliot stated that he preferred his current
home to the hospital. He said, ‘It is nicer here’.
Health
Several of the participants emphasised their physical health
during the interviews. They either mentioned it in relation to
their own particular health problems or to how their bodies
were injured. At the beginning of the first interview, when
Elliot was asked to describe himself, he talked about how he
5
The ‘beginning’ reflected childhood events, the ‘middle’ was
current life and the ‘end’ corresponded to identity and future hopes.
4J. Brown et al.
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‘looks after himself’. He repeatedly spoke about his forth-
coming operation on his toenail and about how he would be
‘brave’ for it. A significant feature of George’s story was his
‘heart trouble’. He said, ‘For my heart trouble. You know
what I got…My back you know, my back gets sore…’
Attachment figures
All of the participants spoke about significant people in
their lives, such as their families, friends and support
workers. For example, Elliot talked about how his father
taught him to swim. He said, ‘With my father, yeah. He had
to hold me…He teach me to swim... Yeah, I can swim on
my own now. (He smiles)’. This gave a sense of pride and
achievement. The participants also spoke positively about
attending various social groups, e.g. church, advocacy and
drama.
Resilience
There was a sense of resilience throughout several stories.
For example, a significant event in Lily’s early life was
moving into the long stay hospital when she was 6 years
old. She explained that her mother had a ‘breakdown’ and
that this was the reason that she had to move homes. She
put on a brave face with regards to leaving her family home
when she was a young girl, stating that she ‘did not mind’.
Identity
Gender.The six participants talked about themselves in
different ways. No one talked in terms of a having ‘Down’s
syndrome’ or a ‘disability’. Four out the six participants
drew on gendered identities: ‘I am a normal man’ (Elliot);
‘I am a beautiful lady’ (Lily); ‘I am a grown man’ (George)
and ‘I used to be a kitchen boy’ (Christopher). In particular,
the accounts showed that many of the participants
positioned themselves in line with a stereotype of what it
is to be a man or a woman. For example, Elliot spoke about
doing the gardening in the old hospital, his wish to work as
a ‘builder’ and his enjoyment of going to the pub, drinking
Guinness, playing darts and snooker.
Social roles.The participants also identified themselves in
relation to social role identities. Lily identified with being
her ‘father’s daughter’, a worker, ‘a bridesmaid’, ‘a Great
Aunty’ and a ‘mate’. In contrast, Christopher’s identity
appeared to be wrapped up with his old job as a ‘cleaner’ in
the hospital. He stated that he cleaned at the weekends and
in the evenings and that his main strength was cleaning.
Age and physical characteristics.None of the participants
described themselves as being ‘old’. George said that he was
a ‘grown man’. Lily described herself as ‘young’ and ‘little’.
Christopher was not sure what I meant when asked about
what it felt like to be fifty-five. He stated, ‘I don’t know
about that one’. John talked about himself in terms of his
physical attributes. He said, ‘I have two teeth’.
Social comparisons.Three participants understood when
asked whether they were the same as or different from
other people. For example, Elliot spoke about his siblings in
terms of their age and in terms of their physical attributes.
He spoke about how Trevor was ‘younger’ and ‘very tall’.
George compared himself with his fellow resident and said
that he was not like him as his fellow resident had a hearing
aid and he did not. John said that his advocate was not like
him as he said his advocate was ‘tall’.
Personal strengths and difficulties.The participants varied in
how they spoke about their strengths and difficulties. For
example, David talked about how he was good at sports,
e.g. badminton. When asked about his difficulties, he stated
that he wore glasses and that he did not read. George said
that he found certain household jobs difficult because of his
heart and that he had to be ‘careful’. In contrast, Lily
emphasised that she could do things on her own (e.g.
cleaning) and did not refer to any personal limitations.
Narrative form and structure
Gergen & Gergen’s (1984) approach was used to analyse the
narrative forms in each of the six narrative accounts. For
example, Lily’s account could be interpreted as an heroic
narrative as she talked about the obstacles she faced (such as
having her clothes stolen at the institution) but also the ways
in which these obstacles were overcome (for example her
parents meeting with the hospital manager to help resolve
the situation). In contrast, there was a sense of tragedy in
Elliot’s story, such as when he spoke about not being able to
marry his girlfriend. The accounts of John, George, Chris-
topher and David were interpreted as both regressive and
progressive at times as they talked about the difficulties they
experienced when they were younger as well as the more
positive times in their lives, such as their holidays and
interests.
The narrative accounts varied in their structure, coher-
ence and reflexive capacity. As the interviews progressed,
the topics appeared to be talked about in more depth. For
example, the first interview with Elliot briefly covered many
topics whereas the third interview went into the topics in
more detail. The main researcher attributed this change to a
development of the participants’ narrative skill and to her
interviewing skills, such as being able to stay with the
participants when they spoke about uncomfortable life
issues, rather than quickly moving on to the next topic.
Labov & Waletzky (1967) framework was used to analyse
‘I am a normal man’ 5
ª2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities

the narrative structures. In order to develop a sense of
structure, the main researcher used many prompt questions.
For example, the question, ‘How did that make you feel?’
was asked to gain the evaluation structure (reflexive
capacity). The majority of participants were able to evaluate
the significance of events to a certain extent. For example,
Lily was able to say that she felt ‘angry’ when her
housemates told on her for not doing the cleaning. Likewise,
George spoke about feeling ‘frightened’ when he was beaten
by his father. However, there were times when some
participants did not offer many evaluative comments about
their life experiences. For example, Elliot and John often
said, ‘it’s alright’, when asked to talk about the significance
of something.
Questions such as, ‘What happened?’ were asked to gain
more of the abstract, orientation, complicating action and
resolution structures. However, despite using these ques-
tions, it was often difficult to analyse the narratives
structures. Some accounts were more limited in terms of
their content. For example, John spoke very little about his
early life. He generally answered with one word or a very
short response. A significant feature of David’s interviews
was the way he jumped from topic to topic. Hence, some
accounts were more coherent than others.
Summary and conclusions
This study used a narrative approach to co-construct six
accounts with older people who have Down’s syndrome.
With respect to the original research questions, all of the
participants talked about their childhood, current and
future lives. Each person’s story was unique. However,
there were several commonalities including, loss, abuse,
transition, health, significant others, resilience and identity.
Significantly, none of the participants identified themselves
as having ‘Down’s syndrome,’ and nor did they identify
with being ‘older’. Instead, individuals identified them-
selves in relation to gender and social roles. This study
corresponds with other studies, e.g. Davies & Jenkins
(1997); Finlay & Lyons (1998) which found a lack of salience
with the disabled identity from the perspective of the
person given that diagnosis, i.e. the participants see
themselves as ‘people’ not ‘disabled’. Half of the partici-
pants compared themselves to others, in relation to phys-
ical attributes. Most participants were able to reflect upon
their personal strengths, limitations and consider future
hopes.
The participants spoke about loss or abuse in their lives
and the accounts varied in terms of their structure,
coherence and reflective capacity. Fonagy (1994) argues
that if a person has been abused it is beneficial for them to
remember, reflect and make sense of that experience rather
than putting it out of their mind. Some of the participants
seemed more able to remember and reflect on their difficult
experiences than others. For example, Lily and Elliot were
able to recall what happened to them in great detail
whereas John gave a limited description. This could be due
to a difference in the participants’ coping styles, whereby
they either repress or express their experiences. Another
reason could be due to differences in peoples’ narrative
skill. Researchers emphasise that the way parents talk to
their children can influence narrative skill development
(Fivush 2001), as well as the emotional context of the
family (Dallos 2004). Hence, the separation from their
parents and move into the institutions may have been
detrimental to the participants’ narrative development.
Another reason for this difference in peoples’ narrative
abilities could be related to people with learning disabil-
ities having difficulties understanding timescales, learned
acquiescence and language limitations (Booth & Booth
1996). It is therefore important to consider that the gaps in
the stories could be attributed to the main researcher rather
than the participants.
Critique of study
This study has been effective in exploring how older people
with Down’s syndrome see themselves. However, there are
limitations. Firstly, Narrative Analysis privileges language
and thus there was a reliance on the verbal abilities of the
participants. This may have been demanding for some
participants at times. The researcher attempted to minimise
this by ensuring frequent breaks and carrying out shorter
sessions. She also paid attention to ‘even the small partic-
ulars and happenings’ in the interviews, as recommended
by Booth & Booth (1996).
Furthermore, although the authors sought to empower
the participants, they were still very much guided by their
research aims of studying the social identities of the
participants. Even though these aims changed and became
an exploration of the participants’ lives, it could be argued
that the authors did not fully involve the participants from
the start of the research process. Hence, one improvement to
the study could be to include the research participants from
the very beginning. That is, to involve people with learning
disabilities in the research topic selection, in the research
design and in the production of any written reports. This
would be more in line with Atkinson & Walmsley’s (1999)
approach to autobiographical research.
Clinical implications for practice and research
This study has shown how the process of creating a life
story in a relational context can facilitate a person to talk
about themselves and their lives. This has therapeutic
implications in terms of allowing a person to feel empow-
ered, use their own words and hence be in control of their
lives, which fits with one of the basic principles of Valuing
6J. Brown et al.
ª2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities

People (Department of Health 2001). For example, when
talking about the research process itself, Lily said, ‘I like
doing this’ because ‘I can do it on my own’.
In terms of labelling someone, this study has shown how
it is important to use the participants’ own words when
considering how they see themselves. There is some positive
literature available for children with Down’s syndrome on
this subject, e.g. Archer (2004) and for adults (e.g. Canadian
Down’s Syndrome Society 2006; Russell 2006). However,
there are no books available for older people with Down’s
syndrome. Therefore, it would be helpful to create a book by
older people with Down’s syndrome for others like them-
selves. This would hopefully enable them to identify with
the main character’s life experiences of living in a long stay
hospital, and moving out into the community and then
engaging in positive everyday situations.
This study emphasises the importance of listening to
people with learning disabilities. Lily said ‘they listen to
me’ when she talked about her brothers and advocacy
manager.Kraemer (1999) highlights how people who are
able to overcome serious disadvantage usually have one
or more supportive people in their lives or they may
belong to a community. Hence, in this study the signif-
icant others and sense of community (e.g. hospital,
church, immediate and extended family, advocacy, work-
shops) were likely to have contributed to the participants’
sense of resilience. This study agrees with other research-
ers who suggest that having a wide range of social roles
appears to buffer against the effects of negative social
comparisons, Linville (1987) and increases a person’s well
being, Thoits (1983). This has implications for how
services for people with learning disabilities are organised
and how services need to consider a person’s roles within
a community.
Future research
This study shows the value of using narrative approaches
with people with learning disabilities. It promotes the view
that people with learning disabilities can narrate their life
forming experiences. It is hoped that more researchers will
use this method as a way of doing research with these
individuals.
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