how we live: participatory research with six people with learning difficulties

How we live: participatory research with sixpeople with learning dif®culties

Malcolm Richardson MSc BEd DipN

Senior Nursing Lecturer, University of Shef®eld, Department of Mental Health

and Learning Disabilities Nursing, Manvers, England

Accepted for publication 22 June 2000

RICHARDSON M. (2000)RICHARDSON M. (2000) Journal of Advanced Nursing 32(6), 1383±1395

How we live: participatory research with six people with learning dif®culties

Drawing from the Social Model of disability, six people with learning dif®cul-

ties participated over 18 months in researching their own lived experiences.

The method involved weekly group discussions supplemented by participant

observation. The study's value stems from in-depth inquiry, which included

the participants in the data collection, analysis, dissemination and conse-

quences that they found meaningful. The participants lived in nurse managed

community homes. They described how they had faced social and economic

exclusion, for example, concerning marriage, child rearing and decently paid

employment. With the assistance of nursing staff, the participants had overcome

many other social barriers and were enjoying a wide range of activities and

choices. Consequently, the participants lived varied lives which they described

as interesting and worthwhile. Contemporary models of nursing had success-

fully directed nursing staff to support `ordinary living'. However, some

disabling assumptions were evident within contemporary nursing. Hence,

models of nursing and service delivery were helping both to create lifestyles

that the participants valued, whilst simultaneously contributing to their

disempowerment.

Keywords: learning disabilities, participatory research, social model, nursing,

power, community living

INTRODUCTION AND PROJECT BACKGROUND

The Social Model of disability argues that it is not

impairment that disables a person, but the social and

economic exclusions which people with impairments

face. The model emphasizes therefore civil rights, socio-

political access and inclusion (De Jong 1979, Finkelstein

1980, 1993, Stone 1985, Bynoe et al. 1991, Oliver 1993,

1996).

Consequently, the model rede®nes disability and

impairment as follows:

Disability

¼ the loss or limitation of opportunities that prevents people who

have impairments from taking part in the normal life of the

community on an equal level with others due to physical and

social barriers.

(Finkelstein & French 1993, p. 28)

Impairment

¼The lack of part or all of a limb, organ or mechanism of the body

(Finkelstein & French 1993, p. 28)

Hence disability does not reside within individuals, as

traditionally ascribed, but is socially constructed.

Correspondence: Malcolm Richardson, University of Shef®eld, Department

of Mental Health and Learning Disabilities Nursing, Humphry Davy House,

Golden Smithies Lane, Manvers, S63 7ER, England.

E-mail: m.richardson@shef®eld.co.uk

Ó 2000 Blackwell Science Ltd 1383

Journal of Advanced Nursing, 2000, 32(6), 1383±1395 Issues and innovations in nursing practice

Disability arizing from learning dif®culties is, similarly,

socially constructed, arizing from powerful medical,

professional and political interests. These sustain the

illusion that many disparate and amorphous conditions

are alike rather than distinct (Bogdan & Taylor 1982,

Manion & Bersani 1987, 1989, Borthwick 1994). People

corralled within the frame of learning dif®culties are

deemed incompetent, unable to adequately speak for

themselves, and thus requiring care, protection or treat-

ment. Consequently, many were, and continue to be,

excluded from mainstream society, its schools, leisure

facilities, work places, and democratic processes (Heddell

1980, Potts & Fido 1991, Race 1995, Fennel 1996).

However, the Social Model has been the subject of

criticism. First, for not incorporating adequately other

forms of oppression such as racism, sexism and ageism.

Second, for not effectively addressing the individual's

experience of impairment, such as fatigue or pain, which

may not be so susceptible to social manipulation. Third,

for removing barriers from one group that may, in turn

create barriers for another. For example soft lighting may

help one form of visual impairment but exacerbate another

(Crow 1992, 1996, French 1993a, Kelly 1996). However,

the strength of the social model lies in its capacity to draw

attention away from individuals and to unite disabled

people to challenge the barriers they face collectively

(Oliver 1996).

Research questions

These criticisms of the Social Model indicate that

disability research should address not only social, cultural

and economic oppression (Oliver 1996) but also the

complex interplay of impairment (French 1993a). Addi-

tionally, nursing researchers will need to re¯ect upon

current practice, education and research in order to

identify the barriers to which nurses may be contributing

(Northway 1997). Drawing from these criticisms, this

study posed 3 research questions:

· What do people with learning dif®culties, living in the

community, have to say about their lives and experi-

ences?

· What are their views about the differences between

their lives and those of non disabled people?

· How do disablist assumptions in¯uence the lives of

people with learning dif®culties and nursing practice?

Literature review

The researcher reviewed autobiographically based

accounts of people with learning disabilities from 1967

to 1997. Prior to 1984 only 5 accounts existed (Booth et al.

1990). However, by 1997 there were over 40 publications.

Methods varied widely and included diaries (Hunt 1967),

participant observation (Edgerton 1967, 1984, Atkinson

1985, Wilkinson 1989), surveys (Campbell 1968), pictorial

visual questioning (Conroy & Bradley 1985), interview

schedules (Flynn 1986, Holland 1997), empathic approa-

ches (Goode 1989), open and informal conversational

modes (Atkinson 1989, Brechin 1993), group work, poetry

and art work (Atkinson & Williams 1990), friendship

circles (Gold 1994), oral history and life stories (Atkinson

1993, Booth & Booth 1996, Goodley 1996), and focus

groups (Ippoliti et al. 1994).

The literature revealed many aspects of life experience.

Primarily, however, what emerged was the common

humanity of people with learning dif®culties trying to

get by in their daily lives, much like the rest of society

(Edgerton 1967, 1984, Hunt 1967, Flynn 1986, 1989,

Jahoda et al. 1990). Adults preferred to live in the least

restrictive place, usually separate from parents (Flynn &

Saleem 1986) in hostel rather than hospital, group home

rather than hostel, independent living rather than group

home (Heal & Chadsey-Rusch 1985, Richards 1985, Booth

et al. 1990, Pass®eld 1993, Gold 1994). They were often

excluded from respected social positions, not quite

allowed the same rights, privileges or obligations or

accredited the same emotional capacities (Flynn 1989,

Potts & Fido 1991, Cambridge et al. 1994, Cheston 1994,

Etherington et al. 1995, Collins 1996, Holland 1997). Yet,

they were generally making the best of community living

and complaining less than, perhaps they should.

None of the literature examined the relationship

between the Social Model of disability and nursing

practice with people with learning disabilities. However,

a number of factors that people with learning dif®culties

reported to be important to the quality of community life

emerged, as follows:

· the importance of maintaining and developing friend-

ships, relationships and family ties (Atkinson 1987,

Atkinson & Ward 1987, McVilly 1995).

· the neeed for structured approaches to domestic activ-

ities (Flynn 1986)

· the need for information about personal medication,

health, ®nances and grievances (McVilly 1995)

· the need for support for self advocacy and autonomy

(Brandon & Ridley 1983, Sugg 1987, Flynn 1989,

Wilkinson 1989)

· the need for structured days (Flynn 1986, McVilly 1995).

Staff were seem to be important in assisting people to

realize these factors, thereby reducing their dissatisfac-

tions (Atkinson & Ward 1987, Atkinson 1987, Wilkinson

1989, Holland 1997).

This paper reports therefore on issues of importance to a

small group of people with learning disabilities and

con®rms many of the themes emerging from the literature.

This study extends previous research by seeking to

apply a participatory methodology as outlined below.

M. Richardson

1384 Ó 2000 Blackwell Science Ltd, Journal of Advanced Nursing, 32(6), 1383±1395

The sample does not aim to be representative. Its value

lies in the inclusion of the participants within the data

collection, analysis and dissemination and the potential

for participants to use the results in ways that they ®nd

meaningful.

THE STUDY

Methodology

Traditional disability research re¯ected the traditional

view of disability. Subjects were usually regarded as

dependent and passive `objects of research'. Often the

researcher was the only bene®ciary. Participatory meth-

odology on the other hand (Brechin 1993, French 1993b,

Swain 1995, French & Swain 1997, Richardson 1997) aims

to minimize the potentially oppressive nature of disability

research (Hunt 1981, Barton & Clough 1995, Barnes 1996,

Bury 1996). Participants are involved in the research

production and the researcher engages with their struggles

on issues of power. Data analysis and dissemination,

jointly undertaken, better position the participants to map

and clarify power issues and to negotiate new structures

(Swain 1995, Barton & Clough 1995). Participatory

research may thereby comprise a step on the path to

emancipatory research (Zarb 1992, Oliver 1996) in which

disabled people control the research and decide who and

what to involve.

At the start of the project reported here, only a handful

of studies had reported participatory methods (Brechin

1993, Minkes et al. 1994, Minkes et al. 1995, Rikberg

Smyly 1997). These studies bear no relationship to one

another. Each used different methods, some qualitative

(Brechin 1993) others more quantitative (Minkes et al.

1994, 1995, Rikberg Smyly 1997), but each sought to

optimise the participation of those researched. An issue

they found in common was the dif®culty of involving

participants in the data analysis and the need to explore

this through greater use of qualitative approaches (Rikberg

Smyly 1997).

Ethical considerations

Barton (1996) argued that, despite its antioppressive intent

the participatory researcher must have the humility to

identify the limitations of research that is inevitably

partial. Similarly, not everyone is ready, or wishes, to

confront their oppression. For those who do, the conse-

quences are unpredictable. The researcher should ques-

tion by what right the research is undertaken, the

responsibilities that arise from the researcher's privileged

social position, and how the researcher's knowledge and

skills may be used to challenge forms of oppression.

Additionally, the researcher should consider whether the

production of the research reproduces a system of domin-

ation or challenges that system. Ultimately participatory

research should result in something of worth to the

participants.

Method

The method consisted of group meetings supplemented

with participant observation. A National Health Service

(NHS) Trust assisted with seeking volunteers living in the

Trust's residential homes. Nine people volunteered,

subsequently 3 were unable to participate due to problems

with travel.

The participants (4 men and 2 women) were aged

between 44 and 52 years. Four shared a house with two

other residents and two shared a house with one other

resident. They had lived in the community for over 10

years. Each had a Named Nurse (Department of Health

(DoH) 1991) registered in Learning Disabilities working

from the house. Additionally each had a Special Interest

Worker, a member of staff who worked under the nurse's

supervision. Before the research the writer was unknown to

the participants and only known incidentally to any staff.

Group meetings

Meetings were held weekly and lasted an hour. The

purposes were to:

· facilitate free and open conversation about the partic-

ipants' lives and their views,

· create a forum in which the research data and analysis

could be checked by the participants, thus involving

them in the analysis,

· enable participants to choose how the research results

should be used.

From July 1997 30 meetings were held over 18 months.

These were recorded and transcribed (300 000 words).

Transcriptions were analysed for content using meaning

units (the smallest unit of conversation that means some-

thing) and template analysis (Crabtree & Miller 1992). The

meaning units were colour coded and pasted into general

categories. For example, in the transcript below each

phrase forms a meaning unit because each conveys

meaning. A second level of meaning arises from the two

separate conversations, distinguished here by use if

italics:

Robin: Are you going out anywhere?

Pam: Oh Elsie Tanner, they called her Pat Pheonix.

Writer: Tonight? Let me see.

Jane: And that other one.

Pam: Died didn't he?

Writer: No, I'm in with Eric.

Issues and innovations in nursing practice Participatory research with people with learning dif®culties

Ó 2000 Blackwell Science Ltd, Journal of Advanced Nursing, 32(6), 1383±1395 1385

Jane: Albert Tatlock.

Robin: Who's picking Eric up?

Writer: His grandma's picking him up from school.

The template approach interrogated these categories in

relation to the research questions, further re®ning the

categories (Figure 1).

Participant observation

To enable topics to be discussed in context and observed

(Edgerton 1984, Jorgensen 1989), the writer spent ®ve half

days (35 hours) with each participant (210 hours in total)

over an 18-month period. Notes, recorded contemporane-

ously every 20 minutes, included time of day, activity and

the participant's views. Additionally the researcher

attended a Christmas party and a barbecue at the invita-

tion of the participants and accompanied the participants

to a 3-day conference.

FINDINGS

Relationships

Community life is sometimes bleak and lacking ful®lment

(Flynn & Saleem 1986, Atkinson 1987, Atkinson & Ward

1987, Cattermole et al. 1988, Wilkinson 1989, Booth et al.

1990, Walker & Ryan 1995, Myers et al. 1998). In contrast,

the participants consistently emphasized their current

satisfaction with life, con®rming factors in¯uencing satis-

faction and dissatisfaction referred to in the literature

mentioned above. These satisfactions stemmed largely

from the quality of their relationships and supporting

activities. Spending time with participants as an observer

placed the researcher in a privileged position. It was

possible to witness the extent and qualities of relationships

other researchers have queried but seldom seen (Atkinson

& Ward 1987). There was the possibility, however, that the

researcher's presence could upset the sensitive structure

underpinning a friendship. To minimise this possibility

the researcher avoided revisiting the same friendship

situations. For example one Friday, as the researcher set

off with Jane to her day centre, Jane noticed that Keith, who

usually walked with her, had turned back homeward.

We returned for Keith and it became apparent that the

researcher's presence was unsettling him. Jane gently

persuaded Keith that everything would be all right. She

took his arm and carefully folded it in hers. Together they

walked the half-mile to the day centre. At the centre

Keith's unease departed as he chatted with familiar

people. Hence, the researcher witnessed a sensitive enact-

ment of friendship and compassion that spoke far more

Figure 1 Meaning units and categories.

Table 1 The friends each participant cited (other than staff) and the main place that friend was met

Day Work Women's Retired

Friendships Girl or centre centre College staff House Staff Staff

n = number boyfriend n n n n n n n Other

Jane 1 4 Not used Not used Not used 3 1

Tim 1 1 3 1 Not used 1 1 2

Dave 1 Not used 3 Not used Not used 1 1 2 1

Barry 1 (New) 1 2 1 Not used 3 1 1

Pam 1 4 Not used Not used 1 3 2

Robin 0 Not used 1 1 Not used 3 1 1 1

The numbers indicate the number of friends in that location. To avoid duplication, the same friend is not indicated at more than one

location even if encountered at more than one.

M. Richardson


than when Jane or another participant responded to the

question, ``Who are your friends?''

The participants enjoyed relationships (Table 1,

Figures 2 and 3) that served different social, nurturance

and intimacy needs (Bayley 1997, Pedlar et al. 1999). For

example four had sexual friendships. Another was hoping

to form a closer friendship with a dance partner. Other

relationships facilitated the exchange of news and gossip,

as here:

Pam: She's been a buggeroo today, ¼that Julie, that Julie.

Jane: Again? ¼Ooh, what's she been doing naughty?

Pam: Well I don't want to embarrass, she's a swine.

Jane: Why?

Robin: What's she been doing Pam, what's she been doing?

Pam: She's been a naughty girl. Yes she's been¼you know them

things, light switches on t' wall, she's been touching them and she

were trying to put it on, and that man said, `leave it alone Julie!'

¼.she's been putting them on and off¼

In telling the story to friends Pam vented her displeasure

whilst enjoying an interesting moment telling `the story'.

A quality more evident in the tones and background

excitement than in the words themselves. This combined

with the listeners' enjoyment of the `gossip' reinforced the

social bond between teller and listeners.

Figure 2 Example of a

social network ± Dave's

activities during a typical

week.



The richness of the relationships ful®lled many needs,

such as to help a friend:

Pam: Keith's had some bad news.

Jane: Yes, very sad about that.

Pam: Yes he had some bad news, his mum died.

Jane: She died yesterday.

Pam: Died yesterday, he did have a cry¼.He is going to the

funeral on Tuesday.

Jane: He will cry.

Pam: He will when he gets there. He'll feel it in his heart about her.

Writer: ¼is there anything you will be able to do for him?

Jane: We'll help, I'll help him a lot.

Pam: Jane and Keith, they help each other.

Jane: David (another resident) he is very good with Keith,

absolutely.

Pam: He helped me when my mum died.

Jane: There's nothing wrong with Keith, he can understand what

you mean.

Pauline: But he will cry on Tuesday.

Jane: He got so depressed, he got so depressed. We asked him

what do you want for your mum? We got some ¯owers for his

mum, some lovely ¯owers.

Atkinson (1987) highlighted the importance of opportun-

ities to create and support friendships. This was achieved

through various activities (Box 1):

Writer: So, if you wanted to invite somebody home for tea or a

barbecue it would be one of those friends would it?

Jane: Yes we do.

Barry, Robin and Tim: Yes, yes, yes (said simultaneously).

Pam: Oh yes we do. We always invite them ¼to parties ¼.

Each participant cited one or two staff as friends. Parti-

cipant observation revealed more about these relation-

ships, as Tim's staff member volunteered:

One of my mates ¼and Tim (participant)¼they go out now, they

have a drink. They love him and Tim like went to the christening

and that with his baby.

Like Tim, the other participants visited these staff friends,

attended weddings and children's or grandchildren's

christenings. These were long standing friendships,

11 years in Tim's case. One afternoon everyone was cooing

over some baby pictures taken by Pam. Jane explained that

a staff member, whose granddaughter was born that

morning, called to take Pam to see the baby. Friendships

between the participants and staff were not therefore

super®cial or restricting as sometimes queried (Atkinson

1987), but mutually valued and enriching.

Figure 3 Key to network diagram (after Seed 1996).

How We Live

We are Tim, Jane, Pam, Robin, David and Barry and we live in

a large town.

We meet every week and we talk about things ± anything we

choose. Our conversation is recorded so that we don't forget

what we have said. We have talked about all sorts of things so

that we can tell you about how we live.

We share our home bills and our cars. Some of us go to work,

some to college. Some of us go to day care or the women's

group or a discussion group. We meet our friends often. We

invite them to parties, barbecues, and take-aways. Our friends

stay overnight. We visit friends. We follow the news and

football. We do house work. We watch TV. We go bowling. We

go swimming. We like the cinema and videos. We plan our

holidays. We furnish our homes. We shop. We cook for

ourselves and for our friends. We wash and iron our clothes.

We have a door key. We put money in our savings accounts.

We love our gardens. We choose our things.

Our nurses and staff assist us, they ®nd out what we like. We

like to exercise regularly. We like good food and healthy foods

like fruit and vegetables. We like where we live. We don't like

strict people who boss us about. We don't like to complain even

if we can. We have our private thoughts. We live with people

we like. We don't like living with people who upset us. When

our friends die we go to their funerals, we miss them badly.

Box 1 The participants produced a poster for a conference they

attended. It contains examples of things all the participants did,

with the exception of the women's group that Pam wanted to

include. The group felt that the items they had chosen for the

poster best communicated, `how we live'.

M. Richardson


Concerning marriage, none of the participants had

married, their views varied:

Writer: Did you ever want to marry and have kids?

Jane: I never wanted `em (children)! Enjoy my nephews. Too

much bother, not me!

Dave: Staff get divorced¼why bother?

It would be unusual, given the similar ages of the

participants, if as young adults they did not internalize

the message not to expect marriage and children in

accordance with public attitudes (Heddell 1980, Potts &

Fido 1991). Pam even emphasized ``Marriage is not for me,

no!'' Tim had thought about marrying his girlfriend but

when asked said, `not yet'. However, current intimate

friendships had lasted almost a decade, indicating ability,

rather than inability, to sustain relationships.

Concerning nurses, the participants expressed their

views on good nurses, typically:

Writer: What makes a good nurse?

¼listens, doesn't shout,

Not in a rush all t' time,

¼is my friend,

They like all the residents an' all

They talk to you as well, they talk to you.

Barker (1991) and Taylor (1992) described this similarly as

shared ordinariness, the nurse as `familiar', as Ôfamily',

Ôfair play', Ôshared feelings', Ôfun' and sometimes, `friend-

ship'. Pedlar et al. (1999) demonstrated that life worked

well when relationships and activities were supported by

mutually valuing relationships between paid support and

people with learning disabilities.

Similarly, the participants described their current rela-

tionships with staff as friendly and supportive. Conse-

quently, all the participants could describe the general

contents of their care plans, such as photographs of

friends and family, details of interest, activities and

health, for example:

Writer: Do you all have a care plan that the nurses write?

Barry: Yes.

Jane: Yes.

Keith: We've got our own folders.

Writer: What do you do with the folders?

Keith: We read them.

Writer: ¼do you get chance to put in what you want to put in?

Keith: Yes sometimes, yes¼

Health maintenance, education and screening were

evident both from observed clinical visits, as when Jane

attended her eye clinic, and from the participants'

descriptions of health activities some of which they

included in the poster shown in Box 1.

Autonomy

Writer: Have you all lived at St. Austin's? (hospital)

Robin: Yes I have.

David: We all did.

The most far±reaching barrier to autonomy was hospital-

ization during early adulthood. Hence none of the partici-

pants had children, owned their dwelling or tenancy or

held long standing paid employment. Yet work, though

always low paid or unpaid, was not unwelcome:

David: I work Tuesday, Wednesday and Friday me.

Writer: You do, are your enjoying it still?

David: Yes, I just got paid today.

Writer: Good. Does it pay much?

David: £9.

Writer: For three days work?

David: Yeah.

Writer: Is that good?

David: Yes, it's a good job I've got.

Similarly, Reid and Bray (1998) found work represented

earning a living, the satisfaction of a job, and status. With

speci®c assistance, it might have been possible for each of

the participants to maintain paid work. Two participants

obtained part time paid employment 3 months into this

project.

Long periods without access to employment had led the

participants to cultivate other intrinsically rewarding

activities (Box 1), pursuing these brought the participants

into daily interaction with other members of the commu-

nity.

To support their activities, relationships and lifestyles

the participants relied on state bene®ts. They shared the

costs of domestic bills and cars. They reported having

enough money. However, ®nding £300 each to attend a

learning disability conference at which to speak about this

research required additional ®nances from the NHS Trust,

and from a charity.

The two female participants (sisters) aspirations

differed somewhat to the men's. Like many women of

their generation, they de®ned themselves more in terms of

home-centred expectations than, for example, paid

employment:



Pam: ¼my (elder) sister¼she's grown-up and married. Got kids of

her own. Nice house. Left school, she were only 14 then.

Writer: What happened when you got to 14, did you have to leave

school?

Pam: Oh we left school at 14-year-old. Monica was 14. My sister¼she was 14. She fell in love with a young man¼ and they got

happily married and have children of their own and a nice house.

Writer: What happened to you when you were 14? Did you leave

school and get a job?

Pam: Er not exactly¼.When me mum was alive she brought us

here¼ because they couldn't cope. So me and Jane came here.

Writer: Where did you go to live?

Pam: Up at St. Austin's¼.I was on Field View.

Writer: ¼what was it like in those days?

Pam: Well it, staff were bossy and that.

Writer: They were bossy?

Tim: They were too bossy! ¼(indistinct).

Writer: Was it scary, when you went there to begin with?

Pam: Ooh I was frightened. I was morbid.

Jane: Yes, yes I was!

Writer: You were, you were frightened were you Jane?

Jane: Yes.

Pam: But now we've grown up¼.We used to wear institution

clothes then¼ but we don't wear institution clothes now.

Jane: Boots like football boots.

Barry: Institutional dresses¼.Others are left now what were

bossy¼.Now there's some more people that's nice now.

Robin: That's old Austin's. They were old nurses.

Pam: The old ones are left.¼.It was a long time ago!

This account depicts some of the differences between the

sisters' lives and that of their nondisabled elder sister.

Institutional life denied them similar family lives.

However Pam and the other participants placed this

®rmly in the past, indicating that life and their aspirations

moved on.

The participants seldom accounted for their lives in a

linear format. Analysing the transcripts enabled the

sequencing of their stories. This revealed some changes

in the participants' self-concepts over time. Generally, this

pointed to a greater sense of self-direction, particularly

concerning choices such as food, furnishings, decoration,

individual holidays and activities, as in this example:

Writer: Who picked that lovely blue for that room where you have

your breakfast and what not?

Jane: Well we all did.

Pam: We all did¼.

Writer: ¼Did you have a meeting together to do it?

Pam: Yes we had a meeting about it, you know with ¼ (Named

Nurse) in here about it.

Jane: She says if you want this sky blue ±

Pam: ¼you can have it.

Jane: You can have what you want.

The participants had individual meetings about their

plans, as here:

Pam: ¼my meeting on Monday, there was the Rona, Tim, erm

Mel (special interest workers), Tracey (Pam's Named Nurse) and

Carol Walton (senior nurse) all came to my meeting. And she

said if you don't want to go to¼(address), they can't make you

go¼.

Power and powerlessnessIf one accepts that autonomy is about self determination,

freedom to act and control one's life (Pedlar et al. 1999)

then, in addition to participants exercising choices as

above, the data also revealed how autonomy was

restricted. For example, tenancy rights were unclear:

Barry: I know er do you know Kevin Turner er been naughty and

he were hitting staff.

Pam: O my god! Why?

Robin: He's gone back to St Austin's (the hospital)

Barry: Because he was hitting staff.

The participants concluded that Kevin's return to hospital

was a consequence of his misbehaviour. However justi®-

able, his swift return indicated the fragile nature of his

tenancy rights. The balance of power appeared to be on

the side of the service managers and nurses. The extent of

this imbalance and its disabling consequences became

more evident as the data accrued. For example, the

researcher was in town with Barry when he pointed to a

car, saying that it belonged to a former nurse whom he

feared but tolerated for years. Hence, it apparently took

much longer to obtain remedial action if a participant was

dissatis®ed with a nurse than vice-versa. Here is another

example of power imbalance:

Writer: What happens when, when somebody else moves in, a

new resident comes in?

Robin: You don't know them do you, you don't know them.

Writer: You don't know them. How do you feel about that?

Tim: Awful.

Robin: Dreadful. Like Kevin Turner, he were a new one¼

M. Richardson


Writer: Kevin Turner?

Robin: ¼yes.

Writer: Did you know about Kevin Turner's arrival?

Robin: Eh?

Writer: Did you, how, what did you feel when you knew that

another person was coming to live then at your house?

Robin: Doubtful, not happy about it.

Writer: You weren't happy about it?

Robin: No.

Writer: Does anybody ever ask you what you think?

Robin: No.

Writer: No. Have you ever been asked Jane, what you think about

somebody moving in, did anybody ask you?

Jane: No.

Writer: Have you ever had a new resident move in here where you

are living?

Jane: Well Tim came in, in erm Graham's place, because Graham

died didn't he?

Writer: Do you think then, when there is a vacancy in one of the

houses, do you think they should ask you what you think about

the person moving in. Do you think they should ask you?

Robin: Yes they ought to, they ought to.

When asked about choosing staff and new residents the

participants typically said `Nurse does it'. Ramcharan

et al. (1997) argued that carers are socialized to see people

with learning dif®culties as recipients of care. Services are

thus framed and service users only have freedom to act

within that dependency frame and not therefore upon it.

Service users can likewise internalize this viewpoint.

Robin, however, resisted this control:

Robin: I took all my money out of the bank.

Writer: Oh, you took all your money out of your bank account?

Robin: She found out (a former Named Nurse) and she were¼(indistinct) to me for it. She found out when the bank statement

came, bank statement.

Writer: She found out, so what happened?

Robin: I got into trouble.

Therefore, as Collins (1996) found, the participants'

services supported their personal preferences and

ordinary life arrangements, but fell short of realizing full

citizenship rights and power sharing.

Contemporary nursing models do not prompt nurses to

facilitate power sharing. Critiques of nursing models have

pointed to power being conceptualized primarily as an

administrative and control function (Chapman 1995,

Fawcett 1995). Richardson (1997b) described how models

of nursing adopted medicine's individualization of

disability. Models have been enhanced by non-nursing

models such as An Ordinary Life (Kings Fund 1980),

Individual Programme Planning and Shared Action

Planning (Brechin & Swain 1989). These have directed

nurses to support community living and choices. The

participants' nursing staff had therefore succeeded to an

extent in terms of these models.

Self perceptions of impairment, and limitationsDisabled people sometimes hide their impairment to

avoid potential barriers. However, people seldom deny

their impairment, which is often a signi®cant part of

their personal identity (Abberley 1993, French 1993a,

Morris 1993, Wooley 1993). Learning dif®culties are of

diverse and imprecise nature (Bogdan & Taylor 1982,

1989, Clark 1983, Manion & Bersani 1987, Borthwick

1994, Harris 1995, Joseph 1997). So, not surprisingly the

participants referred to their impairments imprecisely,

for example,

Writer: Then if you're not ill why do you need nurses then, what

is your disability?

Robin: I talk too much.

Dave: I need help. I get poorly. I take ®ts an' nurse helps me.

Writer: What about you Tim?

Tim: I¼(indistinct) I get nervous and that, yes.

Hence they never denied impairments and it would be

folly for research to disregard the limitations arizing from

them. However, despite the range of choices exercised by

the participants, the data also revealed some limitations in

the participants' lives that did not stem from their

impairment, but from assumptions that attributed to them

dependency or incapability. For example, the participants

expressed their views about their exclusion from staff

selection, choosing with whom they lived and some

aspects of their ®nancial management. Yet, they remained

largely excluded from such activities.

Checking the analysis

Natural conversations formed the bulk of the transcrip-

tions. After some shyness and hesitancy in earlier meet-

ings, the group settled into a natural rhythm. The

participants then ran the meetings informally over tea

and cakes choosing their topics. Participants enjoyed the

reports. They corrected inaccuracies and would not agree

with something they though untrue, as here:

Writer: Some of you go to day care.

Robin: I don't!



The participants demonstrated that they understood that

the research would tell the story of how they lived, for

example,

Jane: How is our story going on?

Writer: It's coming along nicely¼there is quite a lot of it now.

Checking the analysis with participants necessitated an

iterative approach. Finding ways to optimize the partici-

pants' self-expression, however, involved the trial of

several techniques. Most helpful were drawings with a

smiley, sad or straight face (e.g. Conroy & Bradley 1985).

These helped the participants to express feelings associ-

ated with speci®c places, issues and events. Similarly

photographs (Richards 1985) of places, events, friends,

family and associates helped to stimulate new topics of

conversation.

Open-ended questions (Lovett & Harris 1987) sometimes

prompted detailed responses and some story telling.

When con®rmation of individual views was sought,

`either/or' questions (Lowe & Pavia 1988, Shanly & Rose

1993) helped to establish clarity.

The emergent data were collated into short reports and

later into life stories. Reading these aloud with partici-

pants enabled them to check the analysis and make

corrections. Life stories have proven helpful in assisting

people with learning dif®culties to develop a sense of life

continuity, direction, understanding and achievement

(Booth & Booth 1996, Goodley 1996, Hussain 1997). The

®nal report appeared in parallel text, with the academic

text on one side of the page and a participant-friendly text

on the opposite side for use by the participants (Bashford

et al. 1995).

DISCUSSION AND CONCLUSION

Research is never ®nal and always partial (Barton 1996),

for example, the data generated by the participants inev-

itably underwent considerable reduction. The results

presented can only be representative, rather than compre-

hensive. The small scale of the study precludes general-

ization of the results, but the participants' con®rmation of

the analysis strengthens credibility. Their views do shed

light upon the research questions.

In relation to the ®rst two research questions, the

participants described themselves as having varied lives,

interesting, mostly enjoyable and ful®lling. Yet their

history of exclusion was evident and continuing. Even

so, current life styles bore some similarities to their

neighbours of a similar age. For example, interpersonal

relationships and activities enabled the participants to

enjoy and contribute to the quality of life in their commu-

nity. They did this variously, such as by providing labour

for employment, engaging in community work, using

public transport, car sharing and by their physical and

social presence. Adequate ®nances were important to this

group. Paid staff were a signi®cant support in organizing

activities that suited the individuals' personal interests,

choices, relationships, friendships, health and aspirations.

In relation to the third research questions, some disab-

list assumptions were evident in the participants'

accounts of their lives, both past and present. Although

both the participants and staff had done much to over-

come social exclusion, the participants acknowledged that

much of the power and control in their lives today

remained with staff (`Nurse does it', Ôask the nurse', Ô¼she found out', ÔI got into trouble'). The participants'

power and control over personal ®nances, home tenure-

ship, choosing with whom they lived and choosing staff to

assist was minimal. Yet, the participants held and could

articulate their views on these issues. Hence exclusion

from such controls could not be attributed simply to

incapacity, but represented barriers both to personal and

collective autonomy.

In the development of nursing care, nurses should assist

people with learning dif®culties to share power. More

speci®cally, decision-making on sharing in the selection

of residents to homes, formulation of tenancy rights,

selection of staff, choice of Named Nurse, personal

®nances, auditing standards and independent living

should involve all disabled people. Clients will need

support and assistance to develop the con®dence and

skills that will enhance their participation. Skills such as,

for example, interviewing, self-advocacy, and assertive-

ness need to be taught. Absence of speci®c skills should

not be seen as grounds for exclusion. Trusted friends and

staff may assist people in this situation, for example, in

helping to clarify equal opportunities practices. Facilita-

ting collective involvement should also be a part of the

empowerment process, so that no individual is over-

whelmed. Access, transport, payment and expenses asso-

ciated with these activities will also need to be addressed.

The participants sent copies of the research report to

their house staff and to the NHS Trust. The responses were

encouraging. Subsequently, in one house, the residents

accepted an invitation to take part in staff selection.

Additionally the residents were consulted about 2 poten-

tial new residents. At the time of writing, the Senior Nurse

was considering how to include more people with

learning dif®culties in Trust issues.

Further research could examine the best ways by which

nurses, carers and organizational structures may support

people with learning dif®culties to exercise power and

control.

Acknowledgement

I would like to thank the anonymous referee for numerous

helpful suggestions.

M. Richardson


References

Abberley P. (1993) Disabled people and normality. In Disabling

Barriers ± Enabling Environments (Swain J., Finkelstein V.,

French S. & Oliver M. eds), Sage, London, pp. 107±115.

Atkinson D. (1985) The use of participant observation and

respondent diaries in a study of ordinary living. British Journal

of Mental Subnormality 3, 33±40.

Atkinson D. (1987) How easy is it to form friendships after leaving

long stay hospitals? Social Work Today, 15 June, 12±13.

Atkinson D. (1989) Research interviews with people with mental

handicaps. In Making Connections: Re¯ecting on the Lives and

Experiences of People with Learning Dif®culties (Brechin A. &

Walmsley J. eds), Open University Reader, Hodder and

Stoughton, London, pp. 63±72.

Atkinson D. (1993) Relating. In Re¯ecting on Research Practice:

Issues in Health and Social Welfare (Shakespeare P.,

Atkinson D. & French S. eds), Open University, Buckingham,

pp. 58±69.

Atkinson D. & Ward L. (1987) Friends and neighbours: relation-

ships and opportunities in the community for people with a

mental handicap. In Reassessing Community Care (Malin N.

ed.), Croom-Helm, London, pp. 232±248.

Atkinson D. & Williams F. (1990) Know Me as I Am: an Anthology

of Prose, Poetry and Art by People with Learning Dif®culties.

Hodder and Stoughton, London.

Barker P. (1991) Finding common ground. Nursing Times 87,

37±38.

Barnes C. (1996) Disability and the myth of the independent

researcher. Disability and Society 11, 107±110.

Barton L. (1996) Sociology and disability, some emerging issues.

In Disability and Society: Emerging Issues and Insights (Barton

L. ed.), Longman Sociology Press, London, pp. 3±7.

Barton L. & Clough P. (1995) Conclusion: many urgent voices. In

Making Dif®culties ± Research and the Construction of SEN

(Clough P. & Barton L. eds), Paul Chapman Publishing, London,

pp. 143±147.

Bashford C., Townsley R. & Williams C. (1995) Parallel text:

making research accessible to people with leaning dif®culties.

International Journal of Disability Development and Education

43, 211±220.

Bayley M. (1997) Empowering relationships. In Empowerment in

Everyday Life Learning Disability (Ramcharan P., Roberts J.,

Grant G. & Boreland J. eds), Jessica Kingsley, London, pp. 15±34.

Bogdan R. & Taylor S.J. (1982) Inside Out: the Social Meaning of

Mental Retardation. University of Toronto Press, Toronto.

Bogdan R. & Taylor S.J. (1989) What's in a name. In Making

Connections: Re¯ections on the Lives and Experiences of

People with Learning Dif®culties (Brechin A. & Walmsley J.

eds), Hodder and Stoughton, London, pp. 76±81.

Booth T. & Booth W. (1996) Sounds of silence: Narrative research

with inarticulate subjects. Disability and Society 11, 55±69.

Booth T., Simons K. & Booth W. (1990) Outward Bound: Reloca-

tion and Community Care for People with Learning Dif®culties.

Open University Press, Buckingham.

Borthwick C. (1994) Mental retardation. Dementia and Age of

Maturity. Disability and Society 9, 519±531.

Brandon D. & Ridley J. (1983) Beginning To Listen: A Study of the

Views of Residents Living in a Hostel for Mentally Handi-

capped People. MIND, London.

Brechin A. (1993) Sharing. In Re¯ecting on Research Practice:

Issues in Health and Social Welfare (Shakespeare P., Atkinson

D. & French S. eds), Open University Press, Buckingham,

pp. 70±82.

Brechin A. & Swain J. (1989) Creating a `working alliance' with

people with learning dif®culties. In Making Connections ±

Re¯ections on the Lives of People with Learning Dif®culties

(Brechin A. & Walmsley J. eds), Hodder and Stoughton,

London, pp. 42±53.

Bury M. (1996) Disability and the myth and the independent

researcher: a reply. Disability and Society 11, 111±113.

Bynoe M., Oliver M. & Barnes C. (1991) Equal Right for Disabled

People: the Case for a New Law. IPPR Welfare Series 1991/92,

Institute for Public Policy Research, London.

Cambridge P., Hayes L., Knapp M. & Gould E. (1994) Living in the

community after leaving long-stay hospital. Social Care

Research 57, Rowntree Foundation, http://www.jrf.org.uk/

social_care/sc57.html accessed 1 June 1999.

Campbell A.C. (1968) Comparison of family and community

contacts of mentally subnormal adults in hospital and local

authority hostels. British Journal of Preventative and Social

Medicine 22, 165±169.

Cattermole M., Jahoda A. & Markova I. (1988) Leaving Home: The

Experience of People with a Mental handicap. Department of

Psychology, University of Sterling, Sterling.

Chapman P.A. (1995) A critical perspective. In Models for Nursing 2

(Salvage J. & Kershaw B. eds), Scutari Press, London, pp. 9±17.

Cheston R. (1994) The accounts of special education leavers.

Disability and Society 9, 59±69.

Clark D. (1983) Mentally Handicapped People: Living and

Learning. Bailliere Tindall, London.

Collins J. (1996) Housing, support and the rights of people with

learning dif®culties. Rowntree Foundation, Social Care

Research 81, March. Rowtree Foundation, http://

www.jrf.org.uk/social_care/sc81.html.

Conroy J. & Bradley V. (1985) The Pennhurst Longitudinal Study:

A Report of Seven Years of Research and Analysis. Temple

University Developmental Disabilities Centre, Human Services

Research Institute, Boston, Philadelphia.

Crabtree B.F. & Miller W.L. (1992) A template approach to analysis:

developing and using code books. In Doing Qualitative Research

(Crabtree M. & Miller W.L. eds), Sage, London, pp. 93±109.

Crow L. (1992) Renewing the social model of disability. Coalition,

July, 5±9.

Crow L. (1996) Including All Our Lives: Renewing the social

model of disability. In Exploring the Divide (Barnes C. & Mercer

G. eds), The Disability Press, Leeds, pp. 55±73.

De Jong G. (1979) The Movement for Independent Living, Origins,

Ideology and implications for disability Research. University

Centre for International Rehabilitation, Michigan State Univer-

sity, Michigan.

Department of Health (1991) The Patients Charter. Department of

Health, HMSO, London.

Edgerton R.B. (1967) The Cloak of Competence: Stigma in the

Lives of the Mentally Retarded. University of California Press,

Berkley.

Edgerton R.B. (1984) Lives in Process: Mentally Retarded Adults

in a Large City. Monograph no. 6. American Association on

Mental De®ciency, Washington D.C.



Etherington A., Stocker B. & Whittaker A. (1995) Outside But Not

Inside ± Yet. People First, Instrument House, King's Cross

Were, London, 207±215.

Fawcett J. (1995) Analysis and Evaluation of Conceptual Models

of Nursing. F.A. Davies, Philadelphia.

Fennell P. (1996) Treatment Without Conent. Law, Psychiatry and

the Treatment of Mentally Disordered People Since 1845.

Routledge, London.

Finkelstein V. (1980) Attitudes and Disabled People. World

Rehabilitation Fund, New York.

Finkelstein V. (1993) Disability: A social challenge or an admin-

istrative responsibility? In Disabling Barriers ± Enabling Envi-

ronments (Swain J., Finkelstein V., French S. & Oliver M. eds),

Sage Publications, London, pp. 34±43.

Finkelstein V. & French S. (1993) Towards a Psychology of

Disability. In Disabling Barriers ± Enabling Environments

(Swain J., Finkelstein V., French S. & Oliver M. eds), Sage,

London, pp. 26±33.

Flynn M. (1986) A Study of Prediction in the Community

Placement of Adults who are Mentally Handicapped. Final

report to ESRC, Hester Adrian Research Centre, University of

Manchester, Manchester.

Flynn M.C. (1989) Independent Living for Adults with Mental

Handicap: a Place of My Own. Cassell, London.

Flynn M. & Saleem J. (1986) Adults who are mentally handi-

capped and living with their parents: satisfaction and percep-

tions regarding their lives and circumstances. Journal of Mental

De®ciency Research 30, 379±387.

French S. (1993a) Disability, impairment or something in

between. In Disabling Barriers ± Enabling Environments (Swain

J., Finkelstein V., French S. & Oliver M. eds), Sage, London,

pp. 17±25.

French S. (1993b) Practical Research: a Guide for Therapists.

Butterworth-Heinman, Oxford.

French S. & Swain J. (1997) Changing disability research: Parti-

cipatory and emancipatory research with disabled people.

Physiotherapy 83, 26±32.

Gold D. (1994) We don't call it a circle: the ethos of a support

group. Disability and Society 9, 165±169.

Goode D. (1989) The World of the Congenitally Deaf Blind:

Towards the Grounds for Achieving Human Understanding. In

Making Connections: Re¯ecting on the Lives and Experiences of



Goodley D. (1996) Tales of hidden lives: a critical examination of

life history research with people who have learning dif®culties.

Disability and Society 11, 333±348.

Harris P. (1995) Who am I? concepts of disability and their

Implications for people with learning dif®culties. Disability

and Society 10, 341±351.

Heal L.W. & Chadsey-Rusch J. (1985) The Life Style Satisfaction

Scale (L.S.S.): assessing individual satisfaction with residence,

community setting and associated services. Applied Research

in Mental Retardation 6, 475±490.

Heddell F. (1980) Accident of Birth. British Broadcasting Corpora-

tion, London.

Holland A. (1997) People living in community homes: their

Views. British Journal of Learning Disabilities 25, 68±72.

Hunt N. (1967) The World of Nigel Hunt. Darwen Finlayson,

Beacons®eld.

Hunt P. (1981) Settling accounts with the parasite people.

Disability Challenge 2, Union of the Physically Impaired

Against Segregation, London, 37±50.

Hussain F. (1997) Life story work with disabled people. British

Journal of Learning Disabilities 25, 73±76.

Ippoliti C., Peppey B. & Depoy E. (1994) Promoting self deter-

mination for people with developmental disabilities. Disability

and Society 9, 453±460.

Jahoda A., Markova I. & Cattermole M. (1990) Stigma and the self

concept of people with a mild mental handicap. In Making

Connections: Re¯ections on the Lives and Experiences of



Jorgensen D.L. (1989) Participant Observation: A Methodology for

Human Study. Sage, Beverly Hills.

Joseph S. (1997) Causation of learning disability. In Dimensions of

Learning Disability (Gates B. & Beacock C. eds), Bailliere

Tindall, London, pp. 105±133.

Kelly M.P. (1996) Negative attributes of self: radical surgery and

the inner and outer life world. In Illness and Disability:

Exploring the Divide (Barnes C. & Mercer G. eds), Disability

Press, Leeds, pp. 74±83.

Kings Fund (1980) An Ordinary Life: Comprehensive Local Based

Services for People with Mental Handicaps. Kings Fund Project

Paper No 50, Kings Fund Centre, London.

Lovett D. & Harris M. (1987) Important skills for adults with

mental retardation: the client's point of view. Mental Retarda-

tion 25, 351±356.

Lowe K. & De Pavia S. (1988) Canvassing the views of

people with a mental handicap. Irish Journal of Psychology 9,

220±234.

McVilly K.R. (1995) Interviewing people with a learning

disability about their residential service. British Journal of

Leaning Disabilities 2, 138±142.

Manion M. & Bersani H. (1987) Mental retardation as a western

sociological construct. Disability, Handicap and Society 2,

231±246.

Minkes J., Robinson C. & Weston C. (1994) Consulting the

children: interviews with children using residential respite

care. Disability and Society 9, 47±57.

Minkes J., Townsley R., Weston C. & Williams C. (1995) Having a

voice: involving people with learning dif®culties in research.

British Journal of Learning Dif®culties 23, 93±97.

Morris J. (1993) `Prejudice'. In Disabling Barriers ± Enabling

Environments (Swain J., Finkelstein V., French S. & Oliver M.

eds), Sage, London, pp. 101±106.

Myers F., Ager A., Kerr P. & Myles S. (1998) Outside looking. In

Studies of the Community Integration of People with Learning

Dif®culties. Disability and Society 13, 389±413.

Northway R. (1997) Disability and oppression: some implications

for nurses and nursing. Journal of Advanced Nursing 26,

736±743.

Oliver M. (1993) Disability and dependency: a creation of

industrial societies? In Disabling Barriers ± Enabling Environ-

ments (Swain J., Finkelstein V., French S. & Oliver M. eds),

Sage, London, pp. 49±60.

M. Richardson


Oliver M. (1996) A sociology of disability or a disablist sociology?

In Disability and Society: Emerging Issues and Insights (Barton

L. ed.), Longman Sociology, London, pp. 18±42.

Pass®eld D. (1993) What do you think of it so far: a survey of 20

priory court residents. Mental Handicap 11, 97±99.

Pedlar A., Howarth L., Hutchinson P. & Dunn P. (1999) A

Textured Life. Empowerment and Adults with Learning Dif®-

culties. Wilfred Laurier University Press, Waterloo, Ontario.

Potts M. & Fido R. (1991) A Fit Person to Be Detained: Personal

Accounts of Life in a Mental De®ciency Institution. Northcote

House, Plymouth.

Race D. (1995) Historical development of service provision. In

Services for People with Learning Dif®culties (Malin N. ed.),

Routledge, London, pp. 46±78.

Ramcharan P., McGrath M. & Grant G. (1997) Voices and choices:

mapping entitlements to friendships and community contacts.

In Empowerment in Everyday Life Learning Disabilities (Ramch-

aran P., Roberts G. & Borland J. eds), Jessica Kingsley, London,

pp. 48±69.

Reid P. & Bray A. (1998) Real jobs: the perceptions of workers

with learning dif®culties. Disability and Society 13, 229±239.

Richards S. (1985) A right to be heard. Social Services Research

14, 49±56.

Richardson M. (1997) Participatory research methods: people with

learning dif®culties. British Journal of Nursing 6, 1114±1121.

Richardson M. (1997) Addressing Barriers: disabled rights and the

implications for nursing of the social construct of disability.

Journal of Advanced Nursing 25, 1269±1275.

Rikberg Smyly S. (1997) Interviewing clients: a project to explore

client views about a change in service provision. British Journal

of Learning Disabilities 25, 64±67.

Seed P. (1996) Day Services for People with Learning Disabilities.

Jessica Kinsley, London.

Shanly B. & Rose J. (1993) A consumer survey of adults with

learning disabilities currently doing work experience: their

satisfaction with work and wishes for the future. Mental

Handicap Research 6, 250±262.

Stone D.A. (1985) The Disabled State. Macmillan, London.

Swain J. (1995) Constructing participatory research: in principle

and in practice. In Making Dif®culties: Research and the

Construction of Special Educational Needs (Clough P. & Barton

L. eds), Paul Chapman, London, pp. 75±93.

Sugg B. (1987) Community care: the consumer's point of view.

Community Care 22, 6±7.

Walker C. & Ryan T. (1995) Disparities in service provision for

people with learning dif®culties living in the community.

Joseph Rowntree Foundation, Social Care Research 75, http://

www.jrf.org.uk/knowledge/®ndings/socialcare/sc75.htm

Wilkinson J. (1989) Being there: evaluating life quality from

feelings and daily experiences. In Making Connections:

Re¯ecting on the Lives and Experiences of People with Learning

Dif®culties (Brechin A. & Walmsley J. eds), Hodder and

Stoughton, London, pp. 54±62.

Wooley M. (1993) Acquired hearing loss: acquired oppression.

In Disabling Barriers ± Enabling Environments (Swain J.,

Finkelstein V., French S. & Oliver M. eds), Sage, London,

pp. 78±84.

Zarb G. (1992) On the road to Damascus: ®rst steps towards

changing relation of disability research production. Disability

Handicap and Society 7, 125±138.



how we live: participatory research with six people with learning difficulties

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