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Social Science & Medicine 61 (2005) 1095–1105

www.elsevier.com/locate/socscimed

Men, sport, spinal cord injury, and narratives of hope

Brett Smith�, Andrew C. Sparkes

Qualitative Research Unit, School of Sport & Health Sciences, University of Exeter, St Luke’s Campus, Heavitree Road, Exeter,

Devon, EX1 2LU, England

Available online 10 March 2005

Abstract

Drawing on data from a life history study of a small group of men who have suffered spinal cord injury and become

disabled through playing sport, this article explores the meanings of hope in their lives. It focuses upon the life stories of

14, white, predominantly working-class men, aged 26–51. The most common kinds of hope used by the men were

shaped by three powerful narrative types that circulate in Western cultures. These were ‘concrete hope’ (the most

common form), shaped by the restitution narrative; ‘transcendent hope’, shaped by the quest narrative; and ‘despair’ or

loss of any kind of hope, shaped by the chaos narrative. The implications of this dynamic process for their identity

reconstruction as disabled men are considered.

r 2005 Elsevier Ltd. All rights reserved.

Keywords: Spinal cord injury; Sport; Narrative; Hope; Disability; United Kingdom

Introduction

Spinal cord injury (SCI), as a major disruptive life

event, instigates a multiplicity of difficult and complex

issues a person has to deal with. One important issue

revolves around the notion of hope. According to

Mattingly (1998), hope is a ‘‘narrative thing’’ (p. 70).

Likewise, Little and Sayers (2004) argue that hope is

narratively constructed and can broadly be defined as

the subjective probability of a ‘good’ outcome for

ourselves or someone close to us. Attempting to

understand how hope is experienced, however, is not

an easy task. As Nekolaichuk, Jevne, and Maguire

(1999) note, because hope is elusive and grounded in

experience it ‘‘remains a complex construct that

continues to elude health researchers’’ (p. 591). Simi-

larly, Little and Sayers (2004) suggest that the study of

e front matter r 2005 Elsevier Ltd. All rights reserve

cscimed.2005.01.011

ing author. Tel.: +441392 262868;

64726.

resses: b.m.smith@exeter.ac.uk (B. Smith),

eter.ac.uk (A.C. Sparkes).

hope faces several difficulties. One is that hope is

ubiquitous, another is that there are ambiguities of

meaning, which together make a third difficulty. Hope

may have many variations and is—technically—always

irrealis in the linguistic sense of being something that is

non-factual or non-actual.

Despite these difficulties, some fields, such as narra-

tive studies, have made sustained efforts to grapple with

the concept of hope. This is particularly so with regard

to how hope operates in relation to different forms of

illness. For example, talking about HIV in Australia,

Ezzy (2000) notes that for many people, the new medical

treatments available can be understood as providing

hope and an increased ability to plan for the things that

would return life to ‘normal’. For others, however, even

though these treatments provide hope that is welcomed,

particularly hope for a longer life, they recognise the

uncertainties surrounding both the promise of the latest

HIV treatments and the specific effect of these on them

personally in terms of developing a stronger sense of

communal responsibility and a re-enchantment of

everyday life.

d.

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–11051096

A number of scholars have pointed out that hope, in

terms of the statistical probability of being cured of

cancer, is often evident in the talk of patients, survivors,

physicians, family members and friends (Crossley, 2000,

2003; Del Vecchio Good & Good, 2000; Del Vecchio

Good, Munakata, Kobayashi, Mattingly, & Good,

1994; Little & Sayers, 2004). Likewise, Lupton (2003)

notes that a dominant narrative surrounding cancer in

modern Western societies is that of hope related to a

cure. This story line, she argues, which is evident in

individual stories and media representations of cancer, is

infused with sporting and military metaphors. Here,

‘fighting’ and ‘winning’ the battle against cancer is

intimately linked to having a positive attitude to getting

better. Moreover, people with cancer are lauded if they

‘‘appear to be brave, never allowing themselves to ‘give

in’ to the disease. There is an emphasis on ‘will’ which

argues that ‘if one has enough hope, one may will a

change in the course of the disease in the body’’’ (p. 70).

In contrast, a lack of attention has been given to how

narratives of hope might relate to people who have

become disabled via specific activities. Consequently,

little is known about their expressions of hope and the

multiple meanings it can have in their lives. In this

article, therefore, we draw on life history data to

illuminate how different kinds of hope are experienced

by a small group of men (n ¼ 14) who have suffered SCI

through playing the contact sport of rugby football

union and now define themselves as disabled. We also

seek to illustrate how these different kinds of hope are

framed by three powerful narrative types that circulate

in Western cultures.

Method

This article focuses upon the life stories of 14, white,

predominantly working-class men, aged between 26 and

51. Their years of age when they sustained a SCI ranged

from 16 to 35. Having gained ethical approval from the

University of Exeter Ethics Committee, initial contact

was made with the participants via the English Rugby

Football Union’s support network for injured players.

To ensure confidentiality and following negotiations

with the sports injuries administrator for this organisa-

tion, it was agreed that an open letter from ourselves

explaining the project, along with a brief questionnaire

seeking demographic details, would be distributed in one

of the newsletters circulated by the network. The

questionnaire ended by asking the respondent to

indicate if they would agree to be interviewed, and if

so, to provide their name and address in a stamped

addressed envelope that was also supplied.

All of the participants were involved in confidential,

thematic, informal, life history interviews conducted in

their homes by the primary investigator (Brett Smith).

At the start of the first interview the nature of the project

was explained again to the participants and any

questions were answered. It was made clear that they

were free to terminate an interview or withdraw from the

project at any time without having to provide a reason

for doing so. Further, it was agreed that pseudonyms

would be used in all future publications.

During each interview, the primary investigator acted

as an ‘active listener’ in an attempt to assist the

participant to tell their life story in their own way and

in their own words. Each participant was interviewed

three times in their own homes, over a period of a year,

with each interview lasting from two to five hours. All

interviews were tape-recorded, transcribed, and sub-

jected to a structural analysis and a content analysis

(Lieblich, Tuval-Mashiach, & Zilber, 1998; Sparkes, in-

press). The former focuses on the formal plot and

organisation of the narrative to tease out the distinct

structures that hold it together with a view to identifying

it as a particular narrative type. With regard to a content

mode of analysis, rather than examining the structure of

stories as a whole, the researcher seeks central themes,

typologies or instances of paradigmatic categories within

the narratives told. As part of this process, themes are

allowed to emerge and concepts are developed from

stories in an inductive manner. Here, researchers look

for similarities in the data and then create categories to

organise the data as a collection of specific instances.

This process also seeks to identify relationships among

categories.

Against this backdrop, we now turn our attention to

the life stories and different kinds of hope told to us by

the men in our study. We begin by focusing on the

dominant kind of hope used within the restitution

narrative. Next, hope as part of the quest narrative is

examined. Finally, the despair, or loss of hope,

embedded in the chaos narrative is considered.

Concrete hope and the restitution narrative

The restitution narrative framed 11 of the men’s life

stories. According to Frank (1995), the plot of this

narrative has the basic storyline: ‘‘Yesterday I was

healthy, today I’m sick, but tomorrow I’ll be healthy

again’’ (p. 77). For these men, this translates to,

‘Yesterday I was able-bodied, today I’m disabled, but

tomorrow I’ll be able-bodied again.’ For the participants

who told restitution narratives, concrete hope was

prominent in their stories. According to Marcel (1962),

this kind of hope is oriented to specific or material

results. It is similar to the typical definition of hope used

in the psychological literature as ‘‘the positive expecta-

tion of realising desirable outcomes’’ (Barnard, 1995, p.

47). A sense of concrete hope, partly framed by the

demands of the restitution narrative is connected to

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–1105 1097

themes relating to the technology of a medical cure and

the restorable body-self. This is displayed in the

following comment by Eamonn, a 29 year old whose

spinal cord was damaged at the level C5/6 12 years ago,

and who now spends his days in a wheelchair, lifting

weights, reading, listening to music, and watching

television:

Interviewer: Did you ever think that you might one

day become disabled through rugby?

Eamonn: No, never. I knew there was the possibility

that it could happen, and I’ve heard of it happening

to people. But I never thought it would happen to

me. You don’t, otherwise you’d never play. So

becoming disabled was not what I expected, and

when it happened I lost everything. It was, is, such a

huge crisis and because of it I’ve lost my life. So,

everyday I tell myself that I’ll walk again. That’s

what gets me out of bed in the morning. I don’t work

and don’t play sport anymore. So, what do I really

have to look forward to? Well, I have hope. It’s

about every single day hoping that I’ll walk again.

Which might sound crazy to some people but at least

in this miserable existence I have hopeyI look

forward to the day when I can get everything back

that I had before the accident. Stand, and walk. So,

really, the main thing that keeps me going is the hope

that I’ll recover. Hope that medicine will keep

progressing and find a cure. Hope that there will be

an end to all this.

In a similar fashion, Matthew, an unemployed, single,

35 year old who worked his way through a number of

office jobs before damaging his spinal cord when he was

20 years of age at the level C5/6, said during a dialogue

about the absence of disabled people in his life:

I don’t socialise with disabled people, and don’t have

any disabled friends. They are probably very nice,

but why be friends with them. Okay I’m disabled, but

I don’t see myself like that in the future. This might

sound anti-disabled or something, but I really do

hope that I will be able to walk someday. To get back

my old life. It’s a tragedy what happened to me. I

certainly don’t like this body and I hope it will be

repaired as soon as possibleyThat’s what I hope for.

And I won’t give in. I’ll battle to get back my old life

and who I was. And I have a fighting chance because

medicine and technology is coming up with all sorts

of things, so I don’t think a cure is out the

question.yMy hope is that I will be cured, walk,

and get back my old self.

As these comments by Eamonn and Matthew suggest,

hope in restitution narratives is linked to concrete

outcomes that revolve primarily around the discovery

of a ‘cure’ via medical and technological advancements

in the future. Their comments also suggest that the

metanarrative of restitution and concrete hope helps

create and sustain a restored self and an entrenched self

as described by Charmaz (1987). In combination these

operate to instil notions of a ‘comeback’ which lock the

individual into their past body-self relationships and

ways of being in the world with the belief that they will

return to this state. This process does not occur in a

social vacuum. Therefore, while narrators articulate

their life stories in ways that seem natural and

individualistic this is not the case. Rather, concrete

hope and the restitution narrative that helps enact

entrenched selves need to be considered in relational

terms and as culturally and historically contingent. This

is because narratives do not spring from the minds of

individuals but are social creations. As Frank (2004)

states, ‘‘People build their own stories on the narrative

scaffolding that their local worlds make available, and

these scaffolding constrain the kind of story that can be

told, even as they enable storytelling’’ (p. 178).

Accordingly, when attempting to gain purchase on an

unfamiliar world following SCI, newcomers to disability

may seek knowledgeable or experienced others for

orientation, information, and advice regarding the

psychosocial and physical landscape that presumably

awaits them. For example, Richard, a 43 year old who

damaged his spinal cord at the level C4/5 when he was

23 years of age, responded to the following question as

follows:

Interviewer: How did you feel when you broke your

neck?

Richard: When I broke my neck, I was in such mess

and it’s a truly terrible time. But not long after the

accident, when I was in rehabilitation, I had probably

the first important bit of information about dis-

ability. Well, at least it’s the one that sticks in my

mind—even todayyI was lying in bed, couldn’t

move at all, and I remember, vividly, as if it

happened yesterday, the doctor saying that I might

never walk again. Obviously I was devastated, and I

can’t remember exactly what he said next. But I can

after that, because after a few minutes he told me that

I shouldn’t give in and that the odds of a cure being

found were rising each year. That felt good. It gave

me my first glimpse of hope and I keep that attitude

with me every dayyMy hope ever since being in

rehabilitation is that a cure will be found and I’ll

walk again. I believe in that today as much as I did

then. I’ll never let that go.

Similarly, memories of rehabilitation for the other

participants suggest that the process of therapeutic

emplotment that occurs in medical encounters whereby

doctors, health professionals, and patients create and

negotiate pre-presentations and a plot structure within

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–11051098

clinical time, may act to instil hope and chart a course

for what needs to be done after SCI in relation to the

kind of body-self that is aspired to in the future (Becker,

1997; Del Vecchio Good et al., 1994; Mattingly, 1998).

For example, Max, a 46 year old who acquired a C5/6

spinal cord injury at the age of 22, commented.

Interviewer: What sticks in your mind the most about

rehabilitation, after the injury?

Max: Many things. But, for one, I suppose I was a

complete emotional wreck. I didn’t want to live. I felt

it would have been better if I’d died there and then on

the rugby pitch. Mostly, those days are behind me

now though. After the accident, my doctor in ‘X’

[name of spinal injury rehabilitation centre] men-

tioned that there would be the possibility to repair

the spinal cord or re-grow it at some point. And so

there it was. I might walk again and there was hope

after the accidenty.The doctor said that there was a

lot of research being conducted on spinal regenera-

tion and that in the future I could benefit from this.

And that gave me hope. At the very least it sowed the

seeds in my mind that I could walk againyIn

rehabilitation, I had to learn things all over again. It’s

like being a baby again. The nurses and physiothera-

pists on the whole were great teachers. They certainly

kept my hope up, and they were always there to tell

me that I could regain some movement back, and

perhaps even walk again. That’s still my aim, my

hope.

Therefore, when people find themselves in uncharted

territory due to SCI, one way in which they begin to

compose their stories of concrete hope is by drawing on

the narrative resources made available to them within

the cultural setting of formal rehabilitation. Here,

relations with doctors and health professionals whose

work is framed primarily by the medical model are

important in providing what Pollner and Stein (1996)

refer to as ‘narrative maps’ that describe and advise new

comers about the people, practices, and problems they

are likely to encounter after SCI. These maps, which can

shape and instil a sense of hope for a cure, continue to

operate beyond the point of discharge from formal

rehabilitation. Indeed, outside this context the partici-

pant’s experiences of hope were sustained and developed

through their relationships and interactions with sig-

nificant others. As Paul, a single, 26 year old who at 17

acquired a SCI at the level C4/5 and immediately

suffered a cardiac arrest, stated: ‘‘Friends and family

have been tremendous because they’ve given me hope.

They still do. Quite often they tell me about new

developments that aim to repair the spinal cord and help

muscle movement. Of course, hearing that gives me

purpose, a sense of hope.’’ Likewise, the following

comment by Craig, a 36 year old suffered a C5/6 SCI six

years ago, suggests that a repository of cultural mean-

ings and a narrative map for a future life are provided by

family and friends, who, like the majority of people who

tell restitution stories, are currently able-bodied.

Interviewer: How have other people dealt with your

injury?

Craig: Terribly. Sometimes I think it’s as bad for

them as it is for me. But, I wouldn’t be where I am

today without those people that stuck by me through

thick and thin. My family, and my friends have been

a great source of support over the yearsyThey often

tell me, ‘‘Never give up hope. Never forget that there

are medical advances all the time. Remember that

you can walk again.’’ I never forget that and it gives

me direction in my life. That’s really important,

because I do want to walk againy.My hope is to

reverse what the accident has done to me and get

everything back that it’s taken away. My friends and

family support me one hundred percent on that front.

Besides family and friends contributing to the shaping

and maintenance of an individuals’ sense of concrete

hope, the media along with published biographical

material in magazines and books assist in the construc-

tion of narrative maps and emplotments that play a

significant role in teaching the person how to be

disabled, how to interpret their own and the disability

experiences of others, and what stories from the range

available are worth attending to (Frank, 1995). They can

also, as the following comment from Dan exemplifies,

help frame, incite, and sustain a sense of concrete hope

by directing them to medical stories revolving around a

cure. In a dialogue about how he spent his days

generally, Dan, who is a single, unemployed, 29 year

old who suffered a SCI at the level of C5/6 when he was

16 years of age stated:

My days are rather boring now. Apart from watching

TV, the occasional trip into the town centre, there

isn’t much to do. That’s okay though. Yes, I hate this

existence and I wouldn’t wish this on anyone. But I’m

hopeful that a cure will arrive at some point and then

life will, of course, be so much better. Take last week

for instance, I read in a newspaper that spinal

regeneration is very much a possibility now, and that

it won’t be long before humans can benefit from this

research. Now while I’m sitting here, I’m thinking,

‘‘Dan there’s hope for you yetyOne day you’ll be

walking again.’’ So reading things like that, which I

seem to do quite often, helps keep my hope alive that

everything will be okay in the future and that this is

just temporary.

Likewise, Harry, now 40 years of age, living in a rural

community with his wife and young daughter, and with

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–1105 1099

a C5 level break sustained when he was 31, replied to the

following question:

Interviewer: How does it feel being in a wheelchair

now?

Harry: Awful. I try not to think about it though.

What’s important is that I can get out of the damn

thing. My family have never let me forget that a cure

might just be around the corner, which gives me hope

that I won’t be stuck in the chair forevery.I want to

walk again and I’ll think that until the day I die. I’ll

never give up hope. It’s all I have. Every time I read a

piece in the newspaper about a new advancement, or

treatment, then that keeps my hope upyI think a

cure for paralysis will happen in the next 15 or so

years because if you read all the reports in the spinal

newsletters I get through the letterbox, and the news

on TV, or in newspapers, then that’s a huge

possibility. Knowing that keeps my hope alive.

Transcendent hope and the quest narrative

In terms of experiencing SCI via sport, quest stories

meet suffering head on; they accept impairment

and disability and seek to use it. As Frank (1995)

points out, just what is quested for may never be wholly

clear, but the quest is defined by the person’s belief

that something is to be gained from the experience.

Two of the men in our study (David and Doug) told this

type of story about themselves during the interview

process. Furthermore, in contrast to the restitution

narrative that incorporates concrete hope, quest stories

foster and embrace transcendent hope. This kind of hope,

as defined by Marcel (1962), is not orientated to

achieving a fixed and specific outcome, but instead

embraces uncertainty and finitude, celebrating surprise,

play, novelty, mystery, and openness to change. In this

sense, according to Barnard (1995), ‘‘the hopeful person,

rather than being defined (or enslaved) by particular

wishes, is continually open to the possibility that reality

will disclose as yet unknown sources of meaning and

value’’ (p. 48). As Doug, who experienced his C5/6 SCI

at the age of 23, is now 34 years of age, studies part-time

and is a ‘full-time father’ after parting amicably from his

wife, stated.

Interviewer: How do you feel about life now?

Doug: Right now I feel great about life and

myselfyI’ve developed a much more rounded

personality and have become a different person, a

much better one after the accident I think, with lots

of different sides to meyOkay, for a period of time

after the accident I was a mess. But now, I don’t view

disability as a crisis. I’m on a different path, and I

think a better, more fulfilling one. So I’m happyyI

don’t want to go back to my old life. That doesn’t

mean that I don’t have hopes and dreams. I’m still a

hopeful person, but it’s not about a cure as many

people might thinkyI don’t hope for a cure, and, in

my view, it’s still very unsure whether one will

comey.So, I don’t live with the hope for a

cureyMy view of hope is more about a hope for a

better worldyBut I don’t really know what that will

mean because I’m still learning. And I think part of

the beauty of life is not knowing what will happen in

the future. Life is uncertain. I enjoy this though, and

feel that part of life is learning to live and enjoy just

how mysterious and beautiful it can be.

Likewise, David, a 28 year old teaching assistant, who

at the age of 17 acquired a C5 SCI following the collapse

of a scrum, remarked:

Interviewer: You said earlier, you’ve changed. Can

you tell me more about that?

David: Yeah, as I said, since the injury, not being

able to walk is the biggest thing. One minute you can

walk, the next you’re paralysed. But that shouldn’t be

viewed as a bad or awful thing. I’ve changed so much

since, and feel a better person now. In fact, my whole

personality has changed. I don’t have much of my

able-bodied self left because I’ve changed so much as

a personyWhat I’ve learned so far has made it all

worth ityI’ve got more choices now to explore who

I want to be, and disabled people deserve more

choicesyBut saying that I’ve changed and become a

better person because of everything doesn’t mean

that I’ve settled on who I am yet. I haven’t said ‘I am

this person’yI’m still developing myselfyand I’m

more interested in the type of person I’m becomin-

gyBut I’m not sure who I will be in the future.

Which isn’t a problem for meyA lot of people

though expect me to say that I want my old self back

and wish to walk again. But I don’t. I don’t pin my

hope on being cured anymoreyHope for me now is

about having opportunities, living in a better society

which respects disabled people and values them, and

not feeling tied down to one life plan. Actually, I like

the fact that my future isn’t clear, and I look forward

to continuing developing myself, learning, and

having hope that I can enjoy life and live with all

the problems and surprises that goes with it.

Clearly, for David and Doug, transcendent hope and

the quest narrative operate in tandem to shape their

post-SCI experiences and their identity construction as

disabled men. As the comments reveal, for them,

becoming disabled through sport is reframed, with the

aid of this kind of hope, as a challenge and an opening

to other ways of being. As such, the past is placed

securely behind them, life is lived in the present, and the

future is a vista of possibilities (Sparkes & Smith, 2003).

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–11051100

Further, as their comments also signal, in these

circumstances a developing self as described by Charmaz

(1987) emerges. Here, rather than simply committing to

an outcome tied to a cure, and being locked into specific

prior activities and former identities, David and Doug

are concerned about the direction of their lives as well as

the character of the self they shape along the way.

Indeed, the two men commit themselves to growing and

developing in the future. By opting for a developing self

these men emphasise their ability to reconstruct their

sense of self over time, they display an openness to

change, and they show a willingness to explore new

identities as possibilities emerge.

However, quest stories and the construction of

transcendent hope are both individualised and relational

achievements. As noted earlier, while each story told is

unique to the individual the telling, in its form and

content, it is intimately connected to the stories made

available by others. As Doug commented:

Interviewer: How did you feel after breaking your

neck?

Doug: Depressed. Angry. A complete mess. I admit

that after the accident I was pretty messed up. I never

thought at that point that I would be here right now.

But, while the journey to where I am right now hasn’t

been easy, I’ve managed to turn the road.

Interviewer: How did you do that?

Doug: Difficult to say really. I suppose there are lots

of reasons, some I probably don’t even know myself.

How did I turn the road and change?yOne reason

for this, and my whole change in who I am, I

suppose, has to do with the help that other people

have given me. Disabled, and able-bodied, have

taught me that being disabled isn’t the end of the

world. Quite the contrary. You can be happy and live

a very good lifeyAlso this is stressed by the disabled

rights movement and learning from them that

disability can be a positive experience, and we

shouldn’t be ashamed, has made me feel stronger

and more hopeful about lifeyHearing from others

that disability isn’t a tragedy, and it isn’t me or my

disability that is the problem, has helped no end. It’s

given me new hope.

David offers similar reflections:

Interviewer: When in rehabilitation, how was it for

you?

David: I hated it in many ways. I was at an all-time

low in there. Not now of course. Thanks to all the

discussions I’ve had with all types of people, young,

old, my parents, other disabled people, lots of people,

I think that I now live life with a big smile on my

face. That hasn’t been easy to achieve mind you, and

I wasn’t very good at taking advice before breaking

my neck. Now though, I would never underestimate

the power of what people can offer youy.Becoming

a different person requires you to break out of the

mould. But again that is a problem because I do

think that the media presents a very one-sided picture

of disability. It’s all very negative and geared toward

being curedyWell, as I’ve come to learn from a lot

of other people, it doesn’t have to be like that, and a

cure is quite a fragile thing because it probably won’t

happen for a very long timey. People have given me

hope to live a new life and see disability as a chance

to develop as a person and give something back to

society.

For Doug and David, the quest narrative and the

associated sense of transcendent hope provide a

narrative scaffolding that appears useful to them in

terms of restorying the self and developing differently

valued body-self relationships. Even though the wider

culture is not awash with multiple stories on which to

build alternative identities, notions of self, and forms of

embodiment on becoming disabled, the comments made

by these two men seem to suggest that the potential for

reconstructing self stories is enhanced when access is

gained to counter-narratives that provide alternative

maps and different emplotments regarding disability and

impairment.

According to Nelson (2001), counter-narratives ‘‘are

tools designed to repair the damage inflicted on

identities by abusive power systems’’ (p. xiii). They are

purposive acts of moral definition that set out to resist,

to varying degrees, the stories that ‘‘identify certain

groups of people as targets for ill treatment. Their aim is

to re-identify such people as competent members of the

moral community and in doing so to enable their moral

agency’’ (p. xiii). In relation to counter-narratives, one

of the ways in which the stories of David and Doug are

framed, and enabled, is by the emancipatory potential of

what Swain and French (2000) describe as an affirmative

model of disability.

Building on the libratory imperative of the social

model outlined by Oliver (1996), Swain and French

(2000) define the affirmative model as a non-tragic

narrative of disability and impairment which encom-

passes positive social identities, both individual and

collective, for disabled people grounded in the benefits

and life experiences of being impaired and disabled. By

deviating from standard plots and dominant assump-

tions about disabled people (e.g., disability is a tragedy

that ruins a life), this model resists and challenges the

mainstream stories that people attempt to fit their lives,

and the lives of others into. Therefore, as a counter-

narrative, the affirmative model has revelatory, libera-

tory, therapeutic and transformative possibilities for the

individual and the community by making available and

legitimising different ways of living as a disabled person.

As Doug explains when speaking about how he feels he

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–1105 1101

has changed and become a different person in recent

years:

Hearing people, including non-disabled, talk about

their lives, and knowing that it’s not me individually,

but a societal issue, including the barriers we face,

whether that’s access to buildings or equal rights for

employment, has helped. Knowing that it’s not me

had a major lift and helped me to change, to be

reborny.It’s important, I think, to let our voices be

heard and be valued. We can to stick together, which

can be hardyBut, and I know this isn’t for everyone,

but for me it feels good knowing that I’m part of

something and not aloney. The knowledge I’ve been

given by the social view, and disabled people in

general, has been tremendously important to me in

how I’ve developed as a person and the ideas I’ve got

now. With their help, it’s become a lot easier to resist

saying ‘‘I do want hope for a cure’’y.I can under-

stand some people wanting one and that’s their

choice. But, I do think, for me anyway, it can be like

carrying a huge weight around your neck. I mean, a

cure might not be found in my lifetime. In fact, that’s

probably unlikely.yThe media exaggerates the

chances of a curey.But focusing all your attention

on walking again doesn’t let you live life now. How

can you enjoy it and be happy with who you are

and who you might become? For me, I don’t think

you can.

Echoing these words in the middle of a dialogue that

focused on changes to his sense of self, David

commented:

Being able to change and develop personally has been

made possible by other disabled people, and non-

disabled people who have taught me that breaking

my neck isn’t necessarily the endyThe social

position on disability I’ve heard aboutyIt’s society

that mainly disables people, has helped me make

some sense of disability and how to liveyCertainly, I

think the advice offered to me since becoming

disabled has helped me resist the tragic role given

to disabled people and the expectation that we all

want to walk again which, for me, just isn’t the case

now. In fact, not hoping for a cure doesn’t tie me

down to one way of seeing thingsy.As I’ve come to

learn, I certainly don’t think for some people it’s very

healthy to live your life solely with the hope that a

cure will arrive. I mean, what happens if it

doesn’t?yThe media, and a lot of disabled people

don’t think about that. They aren’t cautious or

critical about it, when in fact a cure is probably a

long way off.yFor myself, I couldn’t develop

knowing the hope for a cure was hanging over me

day after day.

Despair and the chaos narrative

In contrast to the restitution narrative that attempts

to outdistance mortality by rendering disability transi-

tory, and the quest narrative that meets disability head

on, is the chaos narrative. According to Frank (1995),

this narrative imagines life never getting better. Such

stories are chaotic in their absence of narrative order

and lack of plot. They may result in despair and the loss

of any kind of hope. Jamie, a 44 year old former crane

driver, who acquired a SCI at the age of 35, was the only

person in our sample whose life was, and remains, in

chaos following SCI. His spinal cord was damaged at

the level T2. Here, ‘T’ denotes thoracic vertebrae, and

the ‘2’ indicates the neurological level of damage. Jamie

thus has no movement below the head and requires a

ventilator to breathe. He is currently unemployed, lives

alone in a new bungalow alone after he and his wife

divorced shortly after the SCI. His children visit him

fortnightly, and he has two female personal assistants.

As Jamie stated halfway through a dialogue with the

interviewer about how he feels about himself at this

moment in time:

I don’t. I’m no one. [7 s silence] I have no future, no.

Then, I won’t walk againy.It’s just, just. You have

an accident in life. I don’t know, but, but it’s, it’s, a

jumble. I’ve been given a chance of life, but it’s not a

life, not living. It’s, then, then, see, the accident

happened and I can’t do anything now. That’s the

way it is. What can I do? My life, it’s, it’s, not here.

It’s overyI have nothing left to live. I have no hope

of a life. I have nothing. There is no hope for me.

As the passage above suggests, in chaos, Jamie is

without hope and experiences despair. For him, ship-

wrecked by the storm of SCI, and left without any kind

of hope, time is experienced as static and empty (Sparkes

& Smith, 2003). Life, as the words below imply, is

deemed to be meaningless and devoid of purpose.

Interviewer: I think you still have a lot offer, to your

children, society, yourself.

Jamie: I don’t think so. No. I’m useless. Nothing. My

condition won’t improve. No point anymore. I’m no

one now. It’s a matter of sitting here alone until I die.

Life ended for me the day I broke the necky. I was

more a ‘doer’ before the accident. Now I’m not

much. Not much. I’m half my weight now. Believe it

or not, I was big and strong. Now I am nothing. Life

moves on, without me. That is how it is. How it will

always be. I just survive. No ambitions. Nothingy.

Sometimes I don’t think I can go on. I do. But life

won’t improve. It can only get worseyThere is no

hope in my life.

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–11051102

In chaos Jamie is swept along, without control, by

life’s fundamental contingency. His comments also

reveal that when hope is lost, or absent, the belief

emerges that one’s life is in effect over. This is important

according to Freeman (2003) because in situations

where certain outcomes are anticipated as inevitable,

where things cannot be otherwise, individuals may

experience what he calls narrative identity foreclosure.

This involves the premature conviction that one’s life

story is effectively over. In such instances, Freeman

suggests, if one already knows, or believes one knows

what lies ahead, then one may become convinced

that there is little value in lasting to the very

end. Consequently, one’s life may seem a foregone

conclusion and, therefore, devoid of hope. The indivi-

dual in this circumstance might feel that he or she can no

longer move creatively into the future. Accordingly,

Jamie said in response to being asked, ‘‘what do you do

during the day?’’:

I don’t really. Every day is like the last. Not much. I

don’t know [5 s silence]. I’m consumed with these

feelings of ‘‘What’s the point of being here?’’ I can’t

answer that. I wish I was even filled with anger. But

I’m not. Nothing inside me. I’m really not alive. I

don’t have a good life [7 s silence]. Everyday is

another day of emptinessyMy life is emptyyDark-

ness is consuming me. And I can’t even move my

fingers. What can I do?yWithout anything to look

forward to, I just exist. I have done since the

accident. It’s lonely existing like this. I don’t see or

speak to people. I’ve not contacted friends for a long

time. I suppose I could, but it’s difficult. And my wife

isn’t here now. And, talking to you now, I forgot that

I could speak. It’s, looking at me, what have I got to

offer? No one wants to speak with me. It’s difficult

like this, existing. My life and situation couldn’t get

any worse. It couldn’t get any better either. It’s ended

yMy life is hopeless.

Discussion

In this article, an attempt has been made to illuminate

the most common kind of hope used by 14 men who

have become disabled through sport. We have also

aspired to reflect on the possible functions and meanings

imparted by the hope utilised in relation to the process

of reconstructing body-self relationships and identities

over time. Despite the majority of the men drawing

upon hope to help them understand and impose order

on their experiences, important differences were identi-

fied in the kinds of hope used and the influences of these

in reconstructing body-self relationships. We have

suggested that the differences are due, in part, to the

power of the restitution, quest, and chaos narratives to

shape experience in general, and the kinds of hope used

in personal accounts, in particular.

For the majority of the men in our study, their

experiences were shaped by the restitution narrative that

led them to articulate a sense of concrete hope. Their

comments revealed how within this narrative type

notions of hope are relationally constructed, drawing

on particular models of body, self, identity, and

disability supplied by the cultures and sub-cultures that

these men inhabit. Importantly, hope for a ‘cure’ when

framed in terms of restitution is often articulated in a

taken-for-granted manner that lacks reflexivity. More-

over, despite offering a coherent and plausible storyline

and a kind of hope to live by that enables these men to

make sense of their experiences, this may, however, be

counterproductive, and constraining when it comes to

reconstructing or re-storying new body-self relationships

following SCI (Smith & Sparkes, 2002, 2004; Sparkes &

Smith, 2002). For example, as Ezzy (2000) suggests,

concrete hope framed by restitution narratives assumes

an ever expanding and improving future and tends to

ignore, or be shocked by, the idea that a cure via

medicine will not arrive on time. However, concrete

hope can be precarious because the person invests

heavily in one particular anticipated future that is

predicated on restoring the body-self via medical

advances, even though this future is often more

uncertain and problematic than specific narrative maps

and therapeutic emplotments suggest.

Of course, recognising the precarious nature of

concrete hope would mean accepting that medical

science can disappoint and that the former body-self

relationships that were cultivated in an able-body may

be lost forever. Subsequently, the present is filled with

stories of concrete hope and life is narrated in the future

tense as the individual waits for a cure that will return

them to an able-bodied state of being (Sparkes & Smith,

2003). In this situation, however, not only is the

precariousness of concrete hope denied, but also future

possible selves are ignored and the potential for these

men to develop different senses of self and explore other

identities as disabled men is constrained and limited.

Furthermore, as Frank (1995) argues, one problem with

the restitution plot associated with concrete hope ‘‘is the

obvious but often neglected limitation of the modernist

deconstruction of mortality: when it doesn’t work any

longer, there is no other story to fall back on’’ (p. 94).

When restitution and material salvation through bio-

medical technologies does not work, other stories and

kinds of hope have to be prepared or it is likely that

narrative wreckage will ensue.

Others have also suggested that in specific circum-

stances, and in certain contexts, restitution stories along

with the kind of hope they generate with its absolute

faith in medicine may be problematic, prohibit change,

and be constraining to live by. For example, Lupton

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–1105 1103

(2003) suggests that, when concrete hope dominates,

people are expected to fight and battle the illness or

disability, providing them with the glories of a hero even

if they do not actually restore the body-self to what it

used to be in the past. For her, this can be problematic

when it comes to restorying the self following a

traumatic life event as it locks the person into singular

and inherently limiting patterns of masculine behaviour

and ideals, including ‘‘an emphasis which is related to

notions of individualism, fighting spirit and the power of

thought to shape one’s life course’’ (p. 70). Likewise, this

heroic masculine narrative, while inspiring for some,

may hinder the transformative potential of disability for

many others. As Kleiber and Hutchinson (1999)

emphasise, ‘‘Portraying recovery as aligning one’s

actions with those of the physically heroic not only

creates an unrealistic ideal that most individuals cannot

live up to, it also directs the course of recovery in

personally limiting ways’’ (p. 152). Thus, the combined

effect of the restitution narrative and concrete hope

problematises the ability of the men in our study who

used them to reconstruct their sense of self by reducing

their access to, and flexibility to engage with, the wider

cultural repertoire of stories that are available for

synthesis into personal stories.

This is not to propose that these men should be denied

the right and the opportunity to tell restitution stories

containing specific and desirable outcomes. After all,

concrete hope can play a part in the process of coping

with a traumatic life event by helping to palliate or

assuage misery, construct a sense of continuity after

SCI, and create a plot structure in which having this

kind of hope means having a future (Becker, 1997; Del

Vecchio Good et al., 1994; Ezzy, 2000). However, it

needs to be acknowledged that problems can arise when

people become fixated on one kind of body and sense of

self in circumstances where the restitution narrative and

its associated kind of hope are not appropriate.

One important counter-narrative to the restitution

narrative that two of the men (David and Doug) in our

study had gained access to, and were willing to engage

with was the quest narrative. This narrative type is

closely linked to an affirmative model of disability. It is

important because, as a counter-narrative of disability,

told by various people, it has the potential to help

redress and challenge the way in which research evidence

related to a medical cure is often sanitised and/or

distorted when presented by the media. Furthermore, as

the comments by David and Doug indicate, this

counter-narrative may help in the process of recon-

structing identities by providing a sense of communal

consciousness and expanding the cultural repertoire of

stories on which to draw when re-plotting a life. It can

also enable the reconstruction of selves by resisting a

sense of concrete hope and pointing toward an alter-

native kind of hope. In so doing, it displaces the tragedy

storyline that restricts opportunities to engage with a

range of possible future identities that are a necessary

part of becoming a developing self. Accordingly,

transcendent hope is embraced as being integral to the

human condition, allowing the present to be attended to

in its immediacy and experienced as fully lived.

It needs to be acknowledged, however, that there are

potential problems with transcendent hope and the

quest narrative. For example, Frank (1995) suggests that

one danger with the quest narrative and its associated

expression of hope is that it romanticises disability and

acts all too readily to reassure others that just as the

storyteller has risen above disability, so they too can

escape. Likewise, a potential limitation of the affirmative

model is that it may disembody the experience of

disablement, siphoning out experiences of the body and

its fleshy physicality in favour of a political–structural

analysis that focuses solely on barriers to participation

and an affirmation of a positive identity. Some might

also see this model as depicting the disabled as one

homogeneous group. Hence, there is the risk of

excluding or avoiding multiple forms impairment and

their effects, ignoring those who do not see themselves as

part of the collective disability rights movement,

disregarding those who covet a cure, and thereby

negating diversity and difference.

Notwithstanding such issues, it would seem that, over

time and stimulated by different circumstances, quest

narratives and transcendent hope as available counter-

narratives have empowered David and Doug to alter the

trajectories of their lives and infuse their history with

new meaning and complexity. In combination, the quest

storyline and it connection to transcendent hope provide

a narrative scaffolding that allows these men some

flexibility to adapt to an uncertain future. They are also

extremely helpful in terms of enhancing the ability of

these men to explore a range of identities and

reconstruct different body-self relationships. All this

enables David and Doug to enhance not only their

experiences, but also the experiences of others, as they

inhabit, develop, and construct different body-selves

throughout their lives.

Set against the restitution and quest narratives is the

chaos narrative that shaped the experiences of one of the

men in our study. For Jamie, chaos is a non-identity,

with no hope to guide the self in any meaningful way.

With limited narrative resources, he continues to

internalise and experience the premature conviction that

his life story is effectively over. The absence of hope and

the despair that goes with this leads to narrative

wreckage and the embodiment of chaos.

One important way to alleviate this situation and

move out of chaos, however, is by telling stories. As

Frank (1995, 2000, 2004) argues, storytelling can play an

important role in repairing narrative wreckage as the self

is gradually reclaimed in the act of telling. Thus, as a

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–11051104

wounded storyteller, Jamie needs the opportunity and

the support to recover and reclaim the voices that SCI

has taken away from him. In effect, he needs to be

granted narratibility. This means his life, voice, and

experience of events must be affirmed as being worth

telling and thus worth living and reclaiming. In part, this

involves an enhanced tolerance for chaos as a part of his

life story by all those connected to Jamie. As Frank

(1995) emphasises, if the chaos story is not honoured,

the world in all its possibilities is denied. For him, to

deny a chaos story is to deny the person telling this story

which means that they cannot be cared for. Certainly,

getting out of chaos is to be desired. However, as Frank

points out, ‘‘people can only be helped out when those

who care are willing to become witnesses to the story.

Chaos is never transcended but must be accepted before

new lives can be built and new stories told’’ (p. 110).

None of this, of course, is to claim that this process is

easy or straightforward. Frank (1995) acknowledges

that chaos stories are anxiety provoking, threatening,

and difficult to hear. In part, this is because of their lack

of any coherent sequence or plot that means that the

teller is not understood as telling a ‘proper story’.

Another reason hearing is difficult, Frank suggests, is

because the ‘‘chaos narrative is probably the most

embodied form of story. If chaos stories are told on the

edges of a wound, they are also told on the edges of

speech. Ultimately, chaos is told in the silences that

speech cannot penetrate or illuminate’’ (p. 101).

Furthermore, given that the disabled are one minority

group that anyone can join at any time, and given the

indistinctiveness and permeability of the boundaries

between the able-bodied and the disabled, the chaos

narrative is fear provoking for the able-bodied. As

Couser (1997) notes, ‘‘the border is patrolled vigilantly

by ‘normals’ more out of fear that they might stray over

it than out of fear of transgression by those on the other

side’’ (p. 178). Part of this patrolling involves defining

and legitimising what acceptable stories of hope are

from the perspective of the able-bodied. Thus, the

concrete hope of restitution and the transcendent hope

of quest are preferred to the lack of hope and despair

that goes with the chaos narrative. As Mattingly (1998)

notes, therapists and others work to construct ‘success’

stories, ‘‘They presume that patients will not be

committed to therapy without success, for success breeds

hope, and hope is essential’’ (p. 79). Accordingly, in

Western societies as Lupton (2003) points out, ‘‘To

despair, to lose hope, are frowned upon as strategies of

dealing with diseases such as cancer’’ (p. 70). Moreover,

as Mattingly (1998) comments, the unacceptability of

the chaos narrative to listeners is closely linked to the

issue of desire.

The essential place of desire in a narrative model is

particularly striking when we realise not only that the

story hero but even the story listener is drawn to

desire certain story outcomes and fear othersyWhen

a story is told, if that storytelling is successful, it

creates in the listener a hope that some endings

(generally the endings the hero also cares about) will

transpire y We hope for certain ending; others we

dread. We act in order to bring certain endings

about, to realise certain futures, and to avoid others’’

(Mattingly, 1998, p. 93).

The desire for certain kinds of hope, therefore, when

confronted with the implications of the chaos narrative

can instigate in the listener what Marcus and Nurius

(1986) term a feared self. This is a type of possible or

imagined self that one does not desire to become. It also,

suggest Marcus and Nurius, serves as a motivator, so

that the individual takes action to avoid the possible

body-self they fear and are afraid to be. Thus, certain

narratives are foregrounded and celebrated while others

are marginalised and silenced. As such, telling, hearing,

and honouring chaos stories can be an extremely

difficult, risky, complex, delicate, and precarious process

for all involved.

Having described how the restitution, chaos, and

quest narratives shape the experience of hope, it needs to

be acknowledged that the findings presented here are

illuminative rather than definitive. Accordingly, the

findings need to be treated with caution and seen as a

point of departure for stimulating further questions and

investigation. For example, questions remain regarding

the processes by which the men in our study were drawn

toward one particular narrative type and kind of hope

over others and how shifts in each of these occur.

Likewise, in terms of how specific narrative maps and

therapeutic emplotments are constructed over time and

performed in various contexts before different audiences

needs to be better understood. This is particularly so

given the social nature of storytelling and the power

differentials involved in this process that allow some

stories to be told and listened to while others are silenced

or ignored.

Finally, the question needs to be raised as to whether

the kinds of hope associated with the restitution and

quest narratives as expressed by the men in our study are

actually important to them. Or, is it rather, something

they feel they are supposed to talk about, and expected

to talk about in certain ways in specific contexts, such as,

a research interview, encounters with health profes-

sionals, and interactions with family and friends?

Indeed, in more general terms, could it be that certain

kinds of hope, such as concrete hope, are more

important for the able-bodied and ‘healthy’ people, as

a way for ‘us’ to live with ‘them’, than it is for the

disabled or the ill themselves, even though they quickly

learn that they need to express certain kinds of hope if

they are to maintain relationships with others and secure

ARTICLE IN PRESSB. Smith, A.C. Sparkes / Social Science & Medicine 61 (2005) 1095–1105 1105

the professional services they require? Clearly, it is

beyond the scope of this article to address such issues. It

remains, however, that hope matters and needs to be

taken seriously.

Acknowledgements

We wish to thank the following for the contribution

they have made to this article. The two anonymous

referees for their insightful and helpful comments on an

earlier draft. The English Rugby Football Union and

their sports injuries administrator for allowing us to gain

access to players who have experienced spinal cord

injury through playing this sport. The views expressed in

this article, however, are entirely our own and should

not be taken to represent those of the English Rugby

Football Union or their sports injuries administrator.

Most of all, our heartfelt thanks to the fourteen men

interviewed for allowing us into their lives and for their

permission to write about them.

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