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Self-Advocacy, ‘Learning Difficulties’ and the Self:
An Interpretative Phenomenological Analysis
Abstract
Objectives. To explore and give voice to the ways in which people with learning difficulties
experience membership of self-advocacy groups, and how members of such groups relate to
the label ‘learning difficulties’.
Design. A qualitative study using interpretative phenomenological analysis (IPA).
Method. Six participants took part in in-depth, semi-structured interviews .Transcripts were
analysed using IPA.
Results. Self-advocacy was associated with processes of transformation; participants felt
more confident, capable and happy, with more control over their lives. Most participants
readily accepted the label ‘learning difficulties’ but did not find this identity salient. Most
considered learning difficulties to be fixed and outside personal control and, for many, the
label was associated with medical experiences and diagnoses.
Conclusions. The ways in which self-advocacy and ‘learning difficulties’ are experienced in
relation to the self hold implications for the self-advocacy movement.
Acknowledgments
The support and guidance of Viv Vignoles in the planning, analysing and writing of this
report is gratefully acknowledged. I would also like to thank John Hersov for his advice and
support, particularly in the planning and drafting of materials, and for putting me in touch
with the groups in this study. A special thanks to all who took part in the interviews for their
time and for sharing their experiences with me so openly. I would also like to express my
thanks and apologies to those whose accounts I wasn’t able to include in this report.
Introduction
Recent decades have seen great changes in the way that services for people with learning
difficulties are delivered. Since the 1960s, the field has gone from being an essentially
medical discipline, in which professionals were all-powerful, to one which- at least on paperis committed to the right of people with learning difficulties to govern their own lives
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(Wehmeyer, Bersani & Gagne, 2000). By the early nineties, terms such as “user
empowerment” and “user participation” were widespread in politics and services (Simons,
1992). In 2001, the Department of Health published its Valuing People White Paper,
followed in 2009 by Valuing People Now. These initiatives state:
“…that all people with a learning disability are people first with the right to lead their lives
like any others… Putting People First is about empowering people to shape their own lives
(Valuing People Now, p. 10).
Alongside these cultural and policy shifts, people with learning difficulties themselves have,
through self-advocacy, been attempting to make their own voices heard. People First1 define
self-advocacy as “people with learning difficulties speaking up for ourselves” through
opportunities to share experiences, support each other, learn to speak up, find out about rights
and to speak up to local services (http://www.peoplefirstltd.com/what-is-self-advocacy.php).
Since their emergence in the 1960s and 1970s, self-advocacy groups have grown rapidly in
number and their presence in the UK continues to grow (Beart, 2005).
However, Simons (1992) draws an important distinction between groups that are user-led
and those which are run by and for services. A number of researchers have raised concerns
about the latter (and more prevalent) model of self-advocacy (Simons, 1992). It is argued
that, in such groups, opportunities to challenge the philosophy of services, and the system
that create them, are limited (Aspis, 1997). Decades on, politicized, user-led groups remain
small in number (Goodley, 2005).
Finlay and Lyons (1998) have suggested a potential link between these problems and the
issue of social identity. It has been argued that, whilst there are many factors involved in the
creation of social movements, collective action by any group requires that the group members
identify as a group labeled by society, and that this identity is salient (e.g. Andrews, 1991;
Beart, 2005; Kawakami & Dion, 1995). Many people with learning difficulties do not seem
to identify in this way. A significant proportion of people who have been labeled as having
learning difficulties either refute the applicability of the label to themselves or do not use it
spontaneously in self-descriptions (Davies & Jenkins, 1997; Jahoda et al, 1989; Finlay &
Lyons, 1998, 2005). This finding has been attributed both to the potentially negative
1
People First is the only UK organisation run by and for people with learning difficulties. They aim to raise
awareness of, and campaign for, the rights of people with learning difficulties and to support self-advocacy
groups across the country.
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emotional repercussions of adopting a socially devalued identity (e.g. Sinason, 1992) as well
as to simply not considering the label a useful explanatory or descriptive resource in their
everyday lives (Finlay & Lyons, 2005).
There has been surprisingly little research on the issues faced by self-advocacy groups,
and even less which foregrounds the thoughts, feelings and experiences of self-advocates
themselves. The present study therefore aimed to explore and give voice to the ways in which
people with learning difficulties experience membership of self-advocacy groups, and how
members of such groups relate to the label ‘learning difficulties’.
Method
Participants
Six participants took part in this study2, recruited through two London-based, user-led selfadvocacy groups for people with learning difficulties (Table 1).3 All participants had a range
of experiences in ‘speaking up’ and decision-making, within their self-advocacy group and at
local, regional and/or national level. Participants were told the study was about “yourself and
your experiences of self-advocacy”. The term ‘learning difficulties’ was avoided when giving
information about the study in order to avoid influencing the salience of the label (see Finlay
& Lyons, 1998). Ethical Issues: During recruitment, care was taken to ensure participants
received appropriate support in making an informed decision, including the use of easy-read
consent-related information (Appendix ‘A’). Advice was taken from a contact at Valuing
People Now to ensure interview questions were not leading or likely to cause distress.
Name
Gender
Age
Self-advocacy group
2
Two ‘campaigners’ were also interviewed for this study. However, due to the richness of participants’
accounts, along with limited space, it was unfortunately not possible to include them in this report.
3
To protect anonymity, all names are pseudonyms. ‘Take Charge’ is also a pseudonym. ‘In this table, ‘People
First’ refers to a small group, based in an unnamed London borough, which is part of the nationwide
organisation ‘People First’.
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Mary
Miriam
Liz
William
Carol
Violet
Female
Female
Female
Male
Female
Female
46
38
35
56
41
60
People First
People First
People First
‘Take Charge’
‘Take Charge’
‘Take Charge’
Table 1: Participants
Interview Procedure
Participants were interviewed individually in their group’s offices, with interviews typically
lasting between 20 and 45 minutes. The following two broad lines of enquiry were taken:
1) Self and representations of learning difficulties
2) Experiences of self-advocacy
The interview began with specific questions taken from Finlay and Lyons (1998), designed to
assess participants’ identification with their ‘learning difficulty’ status:
1.
2.
3.
4.
How would you describe yourself to someone who doesn’t know you?
If I asked one of your friends to tell me about you, what do you think they would say?
Would it be right or wrong if someone said you had learning difficulties?
(If ‘wrong’) Have you ever thought you had learning difficulties?
`Learning difficulties’ was used in the phrasing of interview questions, and throughout this
report, as it is the term self-advocates have themselves recommended as the least offensive
(Finlay & Lyons, 1998; People First, 1992). Questions 1 and 2 aimed to establish whether or
not ‘learning difficulties’ were a salient part of their self-concept. If learning difficulties were
mentioned spontaneously in self-descriptions, this was taken to suggest salience and, if not,
this was taken to indicate non-salience. Remaining questions aimed to assess whether
participants reject the label ‘learning difficulties’. Participants were classified as denying the
label if they rejected it in both questions. Questions were asked in the above order so as to
avoid influencing the salience of ‘learning difficulties’ in self-descriptions (see Finlay &
Lyons, 1998).
For the remainder of the interview, a semi-structured format was used, conducted in
accordance with guidelines for Interpretive Phenomenological Analysis (IPA) interviewing
(Smith, Flowers & Larkin, 2009). A loose schedule was set prior to the interview, comprising
a list of topics and subsidiary questions (Appendix ‘B’). However, during interviews, the
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participant was treated as the ‘experiential expert’ and emerging concerns were thus followed
up by the interviewer even where not immediately relevant to the interview schedule (Smith
et al, 2009). Topics and questions were constructed to be open-ended and neutral, and, in
accordance with guidelines for avoiding acquiescence in interviews with those with learning
difficulties, care was taken to ensure questions were phrased simply and clearly (Finlay &
Lyons, 2001). During interviews, dialogue was kept informal and relaxed. Participants were
fully debriefed, again with the use of easy-read materials (Appendix ‘C’). Interviews were
audio-recorded and transcribed verbatim.
Analytic Procedure
Interview transcripts were analyzed using IPA; a systematic, qualitative analysis which aims
to offer insights into how a given person, in a given context, makes sense of a given
phenomenon or experience (Smith, et al, 2009). IPA was considered appropriate for the
analysis because, it offers an interaction between participants’ accounts and academic
interpretation whereby the phenomenology of the participant is a central focus. IPA is
therefore in keeping with the spirit of self-advocacy and its aim to give participants ‘voice’.
The analysis involved a series of stages. Firstly, each transcript was read and re-read in order
to ‘get to know’ participants individually. Next, detailed notes were made, including
summaries of content, initial interpretations and connections between different aspects of the
transcript. These notes were then used to formulate themes for each participant. Finally,
identified themes were analyzed for potential connections in order to arrive at a final set of
themes, aiming to represent all participants. Validity checks for qualitative research were
performed throughout the research process to ensure that identified themes were consistent
with the data, and were not led by researcher expectations. In keeping with Smith and
colleagues’ (2009) recommendations for assessing validity, Yardley’s (2000) four principles
were followed: sensitivity to context; commitment and rigour; transparency and coherence;
and impact and importance. In addition, identified themes and analyses were judged against
Stiles’ (1999) criteria for ‘reflexive validity’: prior theories and understandings should be
permeable to new ideas and so observations should change the researcher’s initial
understanding. Reliability criteria were not considered appropriate for this study as the
purpose of IPA is not to offer generalizable findings, but rather to offer one of many possible
interpretations. In this context, the use of measures such as ‘inter-rater reliability’ would
merely produce an interpretation agreed by two people rather than functioning as a check of
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objectivity (Yardley, 2000). The aim of validity checks is therefore not to claim a singular
‘true’ account, but to ensure the credibility of the final account (Osborn & Smith, 1998).
Results
Five themes were identified in the participants’ accounts, summarized in Table 2. Each
participant was represented in each theme (see Appendix ‘D’).
Line of enquiry
Themes
Self and representations of learning difficulties
Control over learning difficulty status
Learning difficulties as restrictive
Experiences of self-advocacy
Sense of autonomy and efficacy
Sense of being listened to and understood
Self-advocacy as transformative
Table 2: Summary of Themes
Self and Representations of Learning Difficulties
The initial interview questions, taken from Finlay & Lyons (1998), are summarized in Table
3. All participants accepted the ‘learning difficulty’ label to some degree, at some point in the
interview but, for all but one participant, self-descriptions suggest the label was not salient.
Under Finlay and Lyons (1998) criteria, Violet rejected the label. However, later in the
interview she referred to herself as having “middle-class” or “mid-range” difficulties,
suggesting at least some level of identification with the label. William was the only
participant to spontaneously mention learning difficulties in his self descriptions. Indeed, his
physical disability and learning difficulties was the first thing William mentioned, suggesting
that learning difficulties are a salient aspect of his self-concept.
Participant
Miriam
William
Liz
Violet
Carol
Mary
Accept/ Reject label?
Accept
Accept
Accept
Reject (but accepted later in interview)
Accept
Accept –‘mild’ learning difficulties only
L.D. mentioned in self
descriptions?
No
Yes
No
No
No
No
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Table 3: Identification with 'learning difficulty' status
(i)
Control over learning difficulty status
Reflecting the above results, a theme which emerged strongly from all but one of the
participants was an unquestioning acceptance of their learning difficulty status and a
representation of learning difficulties as fixed and outside personal control.
Interviewer:
How did you come to learn about learning difficulties?
Miriam:
Well it was at home I didn’t know I’ve got learning difficulty I went to with my mum I
went to the hospital somebody told me I’ve got learning difficulties and then after
that I knew.
For Miriam, learning difficulties were ‘discovered’ after a visit to hospital. Miriam accepts
her diagnosis without question and her description of being informed of a disability, of which
she had previously been unaware, evokes a sense of learning difficulties as a hidden medical
condition over which she has no control. A medical representation of learning difficulties
was evident among several other participants, including Mary:
Interviewer:
Have you always felt sure that you had learning difficulties?
Mary:
I’ve had um I’ve had um like medicals all these tests and things.
Liz’s account of the origins of her learning difficulties also indicates a strong medical
representation:
Liz:
I was normal at the first beginning. But when I came to four years old then I- then they said
you got learning difficulties and…they left me overnight in the hospital and that’s…
how I got to learn how I was learning difficulties.
Here Liz is referring to an incident in which she became visually impaired; an impairment
which she considers an integral part of her learning difficulty. Liz’s transition from ‘being
normal’ to ‘being learning difficulties’ is strongly rooted in a medical experience, evoking a
sense of powerlessness over her status. Like Miriam, Liz talks of being ‘informed’ of her
learning difficulties and did not question her diagnosis. Liz’s view that learning difficulties is
something that you are, not just something you have (“I got to learn how I was learning
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difficulties”), is echoed in William’s account of his own learning difficulties, and of working
with those with profound learning difficulties:
William:
I can’t do that I’m a learning difficults.
William:
They’re trying to tell you but you can’t listen...we know it can’t be helped cos people
you know are not of our- of our- like what we are.
In this quote, William conceptualises both his own status and that of those with more
profound difficulties as fixed and essentially different from each other. Similarly, Carol talks
of coming to terms with having learning difficulties as a process of acceptance, suggesting
she views the label as a fixed aspect of her self:
Carol:
I thought well I’ve got a disability so I’ve gotta accept it
While a fixed, essential view of learning difficulties as outside personal control was
identified among most participants, Violet’s experience was a notable exception:
Interviewer:
For how long have you felt sure that you had ‘mid-range’ learning difficulties?
Violet: Well, I think it goes up every so often if you get a like you get better and better [pause] in
yourself...I used to go college a lots and its helped me like to use to use my reading,
use my writing, and do a bit more thinking. Because I’m I- I do now [stumbles] I’m
first time I’m a chair-person, of the meetings, and I can be all charge of meetings
now.
In contrast to the accounts of the five other participants, Violet does consider herself to have
power over her learning difficulty status, which ‘goes up’ when she learns new skills.
Significantly, Violet refers particularly to skills gained from her experience as a selfadvocate, suggesting that a desire to change her learning difficulty status represents a
motivating factor for self-advocacy.
(ii) Learning difficulties as restrictive
All participants held conception of having learning difficulties, or being labeled as such, as
restrictive or potentially restrictive:
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Liz:
…learning difficulties people it’s like you have to learn something one day from the next…
one day I will be like yea you’re not gonna do this you’re not gonna do that but…I
still get where I get to go and I do what I have to do to get a lift cos it’s part of me.
For Liz, learning difficulties have the potential to stop her doing things, although she conveys
her determination to overcome these restrictions. Liz’s use of “one day” suggests that this is a
daily struggle for her. Indeed, restrictions associated with learning difficulties emerged as a
strong concern in the lives of the majority of participants, particularly those restrictions which
represented key issues of personal autonomy such as employment:
Interviewer:
When you got diagnosed, what was that like...?
William:
It felt very bad, very strange to me at the moment, it felt very strange to me cos I
thought wha-wha-what can I do with a learning difficults, you know what I mean? I
can’t do things, I can’t paint, I can’t get up on-climb up on a ladder. I can’t you know
what I mean? Wha- you know what can I-what can I do? You like for work for
instance, what available can I work? When I-when I first learnt when I was learning
difficults right, when I first learnt- when I first joined the council, as a gardener,
right, I weren’t allow-allowed to use any pushing machines cos of me cos of me
learning difficults, right. Well I had me disability also [touches hips]…. I couldn’t use
‘em cos I had a difficult-mild learning difficults not learning difficults but disa- bility
and I couldn’t use the machines and they wouldn’t let me allow ‘em.
Following diagnosis, restrictions represented an important and immediate concern for
William, and his emphatic “what can I do?” conveys a sense of sudden powerlessness or lack
of control over his life. The entangling of learning difficulties and physical disability in this
quote suggests that, for William, the two are linked by their common restrictive influence on
his working life. Restriction regarding work was brought up at a number of separate points in
the interview and William related this central concern to other issues of personal autonomy
such as obstacles to raising a family.
Liz’s wish to marry her boyfriend despite her family’s objections highlights another key
restriction to personal autonomy:
Interviewer:
Liz:
…so what do you think your mum would think about you getting married?
[pause] That would be a saaad story! I don’t know. I have no idea. But I- [stumbles] because
I’m a [pause] upstanding person even though I’ve got learning difficulties [pause] …I
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speak how I feel and if you don’t like it then it’s not my problem…I’m just me and if
you don’t like it well [pause] that’s life. Tough. Stuck. You’re stuck with me until I
die! (I don’t die fast!) [laughs] but that’s how I see it I don’t see it as just cos I’ve got
learning difficulties I just do as I- not do as I please but I just do what I wanna do.
Liz’s description of family conflict reflects her wider struggle for autonomy and her
determination to overcome the restrictions associated with learning difficulties, highlighted
earlier in the interview. However, in this quote it is not only ‘learning difficulty’ itself that is
imposing restrictions but also her family. Liz’s assertion, in response to the question of
marriage, that she is an “upstanding person” despite having learning difficulties indicates a
sense that having learning difficulties is accompanied by particular judgments on her as a
person, and expectations regarding limitations on her behavior.
Similarly, for Violet, it is not learning difficulties but rather “unfair” treatment which
restricts autonomy:
Violet: …it’s like when you go into a school, and because you got…learning difficults, you shouldyou should be all together really, because there’s no no nothing in it, it’s only
because you’re slow, it is. [Mm] And they’re quick. And that’s why they’re in a
normal school, and why are we pushed in another way?...my school life er it was
really unfair…
Participants also talked of restrictions in terms of lack of voice:
Miriam:
Um learning difficult sometimes can’t speak for yourself….sometimes people just
ignore us um like you know why has that person got a learning difficulty.
Carol: Um profound is they they can’t speak they have- we we do sign language and speech n
everything…And learning difficulty-disability is [pause] um [pause] they can speak up
but just need a little support but profound need more support
Both the above quotes are immediate responses to being asked about ‘what learning
difficulties means’, suggesting that, for Miriam and Carol, not being able to “speak for
yourself” is a defining feature of having learning difficulties. For Miriam, being ignored is an
important personal restriction associated with having learning difficulties. Similarly, Carol’s
distinction between “profound” and “learning difficulty-disability” indicates a conception
that, the more profound one’s learning difficulty, the greater one is restricted in the ability to
“speak up”.
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Perhaps unsurprisingly, considering the strong sense of restriction felt by many
participants, where autonomy and independence had been achieved, this was often of great
personal importance, as evidenced by the following responses to the question “How would
you describe yourself to someone who doesn’t know you very well?”:
Violet: Well I’m very- I live independently on my own, and everything. I’ve got my own flat…
Mary:
My name’s Mary, I have my own flat. Um I work here…
The fact that markers of independence are the first thing mentioned in self descriptions and,
indeed, in the interview itself, is a powerful reflection both of the sense of restriction felt by
the participants in this study in relation to their learning difficulty, and of their determination
to overcome such restrictions.
Experiences of Self-Advocacy
Three themes were identified in relation to this second line of enquiry. These themes seem to
offer a direct response to the issues of restriction voiced above.
(i) Sense of autonomy and efficacy
Participants gained a sense of autonomy and efficacy through their experiences of selfadvocacy, which translated into a wider sense of confidence or control over their lives:
Liz:
…they’re all for helping you and doing what you want to do basically….you learn a lot and
you kinda they don’t dictate what you wanna do…they listen to you and see if you
want to do it- if you don’t want to do it um they’re not gonna force you to do it…that
is the difference between parents and self-advocacy…the parents will tell you have
to do it [shouting] then and then! [lowers voice] And it’s not like that and it’s a good
thing because you get to know- you get to feel how you wanna feel- if you’re down
you’re down.
For Liz, the supporting staff play a key role in facilitating her sense of autonomy. Liz feels
supported in doing what she wants and emphasizes the fact she is not “forced” into anything,
indicating that, in self-advocacy, Liz feels she is the one in control. Liz feels a self-direction,
not only in the freedom to make her own decisions but also in her feelings. She is not
restricted to positive feelings; she can feel how she “wants” to feel. Importantly, Liz directly
contrasts this with life at home and her raised voice for the words “then and then!” highlights
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the extent of her frustration and sense of restriction. For Violet too, there is a sense that,
through self-advocacy, she is being given a new opportunity to take control over her life:
Violet: And that’s when they said to us it said oo it’s a new law out now. You can say anything now
and you speak it back out and tell them what you think about it…
Violet coveys a feeling that through self-advocacy, she now has a say over things that affect
her and that there are channels through which this can be achieved. Also important to Violet
was the fact that self-advocacy was a paid job:
Interviewer:
…so what is ‘Take Charge’ for?
Violet: For people, well to speak up for theirself and everything. And they can work like I can, it’s
like you got our own job- got a work job here, and everything. We get paid for it.
The fact the self-advocacy is a paid or ‘proper’ job was also emphasised by William and
Mary:
William:
…not only that it’s a paid job- it’s a paid we get paid every month
Mary: It’s made me more confident um yea I love the job and um they understand me…I can do it
on my own today and that’s a good…Rhys said that you did well today…Yea like
you’re doing your job properly.
As highlighted earlier, having a paid job is a key issue of autonomy for William, and this now
emerges as a salient aspect of self-advocacy. Similarly, for Mary, self-advocacy is first and
foremost a job from which she gains a sense of responsibility and efficacy; a feeling that she
can do things well and that her work is appreciated by others. The effects of such an
experience of self-advocacy are considerable:
Miriam:it make you- people with learning difficulties think for yourself...get charge of your life you
know.
Miriam’s statement that people with learning difficulties “get charge” of their life through
self-advocacy is a powerful reflection of the sense of greater control that all participants felt
self-advocacy gave them.
(ii) Sense of being listened to and understood
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Self-advocacy also gave participants a sense of being listened to and understood, both in the
sense that their opinions were taken seriously and that self-advocacy offered them a space to
voice concerns and difficult feelings.
Interviewer:
Carol:
… what do you like most about um ‘Take Charge’?
Um we’re all friendly- we’re like family really…Um we just get on really well, we we
talk to each other- we try and listen to each other when we can and very supportive
with each other.
Carol’s description of her self-advocacy group as “like family” evokes a strong sense of selfadvocacy as a support network. For Carol, the fact that people listen and support each other is
the thing she most values in her self-advocacy group. This experience of self-advocacy was
echoed in the accounts of several other participants, including Liz’s:
Liz:
if you got kind of a problems and you’re having problems at home and stuff like that
and then you can go and express it and say ‘I’m having problems at home’ and
they’re quite- they’re very understanding people.
For Liz, self-advocacy is a place where she can receive support with problems encountered
elsewhere in her life. The use of the word “express” suggests that self-advocacy allows her
the opportunity to ‘let out’ negative feelings that she might not otherwise get an opportunity
to discuss. Emotional support through self-advocacy emerged as a valued aspect of selfadvocacy for four participants.
Being listened to and taken seriously was also a source of pride for a number of
participants, and was often tied with a sense of autonomy or efficacy:
William:
...everybody give us a good clap “woooosh!” all whistled at us I think we done well
Carol puts it similarly:
Carol:
well we did have someone from the government come and speak about um ask us
questions…and um I must’ve come out with some good stuff and obviously they writ
back a email to thank me for the contribution which I did- which I though woow! So
they’re gonna so they put that down in the government slot
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Carol expresses her pride and surprise at being thanked for her contribution by someone from
the government who had come to talk to the group, and seems to feel a real sense that her
opinions were valued.
(iii)
Self-advocacy as transformative
For all participants, these experiences of autonomy, efficacy and being listened to and
understood were associated with significant personal changes:
Interviewer
…what is the point of ‘Take Charge’ being there?
William:
Our groups. Groups and…speaking up…
Interviewer:
…and why do you do that speaking up?
William:
Cos you get an education, yourself. [Pause] Which makes- which makes you be
powerful. And be proud, of it…which I am… And not only that…getting your
confidence and- and going through- and going through speaking up in front of loads
of people. Not getting the butterflies and going woooarr- shaking all load of people
you know when you got- they say to me “William get up and speak!” what you know
don’t know what speeches I have to say, … when I first done that I got experienced
at it- it’s not – I didn’t – I just looked at the words what- what I had to say, I never
looked at the people
Here William refers to “going through” a process of becoming experienced at ‘speaking up’
and compares his past performance (“I just looked at the words…I never looked at the
people”) with that of today (“Not getting the butterflies”). For William, this transformation is
a reflection of a broader process of “getting your confidence”. Indeed, for William, speaking
up is the key reason self-advocacy exists, and is closely tied with confidence in his mind. In
addition, speaking up is associated with becoming ‘educated’; an achievement of which
William feels proud and which makes him “be powerful”. This last view of speaking up is
significant, as it is in contrast to William’s strong concerns about the restrictions associated
with having learning difficulties, highlighted earlier.
This process was echoed in many other accounts:
Liz:
…it kinda helped me to come out of my shell basically. So People First kinda helped me a
lot…I wouldn’t go to somewhere and talk how I talk now. I wouldn’t be like this I’d
be shy and stuff. And now I can just go and talk.
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Miriam:It’s different it is different. I think here is more brought out of yourself and more happy
more here. Cos before you know I was not happy…but now I’ve come here talking
about that it’s like you got things round you like talking to you…
Carol describes a similar process of transformation through self-advocacy:
Carol: I had a partner live with me. But that didn’t last long- abusive and that so I took him to court
I thought no I’m not having this so, I think- and it’s only by coming to ‘Take Charge’
group and pla-like support workers and ‘Take Charge’, made me-give me the
strength and say “No, I’m not having this no more” so it made me speak up as
well….I never used to say anything I never used to speak I was very shy I was very
within myself but now look at me now it’s through drama, ‘Take Charge’ that made
me speak up and show me colours what I am really like and what I am… I feel much
happier now cos I got lots going for me and um before I didn’t have lots abuse n that
a lot of things were holding me back but this time I ain’t got nothing holding me back
For Carol, self-advocacy was key in transforming herself from being painfully shy (“I never
used to say anything I never used to speak”) to confidently ‘speaking up’ for herself; a
transformation which enabled her not only to end an abusive relationship but also to take her
partner to court. For Carol, ‘speaking up’ is synonymous with “strength”, and the importance
Carol places on speaking up, in terms of making fundamental personal changes, further
highlights the unique role of self-advocacy in her life. Importantly, however, the
transformation Carol describes is not one in which she has changed her character; rather she
has been able to reveal it. Through self-advocacy Carol feels she has become able to express
her ‘true’ self, to show what she is “really” like. As a result, she reports feeling “much
happier” and, echoing earlier themes regarding restrictions and autonomy, Carol states “this
time I ain’t got nothing holding me back”.
Discussion
Together with the themes of restriction, efficacy and autonomy, these transformative
experiences of self-advocacy have resonance with the humanistic perspective of human
development (Rogers, 1959). Rogers (1959), argues that all people posses an underlying
"actualizing tendency", which leads them to strive to seek challenges and realize their human
potential. The strivings of the self-advocates in this study to learn, become more confident
and achieve autonomy in the face of restrictions lend support to the notion of such a
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tendency. The fulfillment of this tendency is argued to be associated with formation of a
coherent sense of self (“integration”), and a greater sense of eudemonic well-being (Ryan &
Deci, 2000; 2004). In accordance with this perspective, many participants in the present study
experienced their transformation into more confident and autonomous selves as facilitating
happiness and ‘true’ expression of self and personality.
In order for psychological growth and integration to occur, Deci and Ryan (2004) argue
that services and workplaces should facilitate the fulfillment of three basic psychological
needs: ‘competence’, ‘relatedness’ and ‘autonomy’. These three concepts were evident in
many participants’ accounts of self-advocacy. Opportunities to express and develop
competencies, and to achieve autonomy had previously been, or continued to be, restricted
outside self-advocacy. Through new activities and responsibilities, autonomy and efficacy
was achieved, and the drive for active growth and integration supported. In keeping with Deci
& Ryan’s (2004) findings, social support and belonging also seemed to play a role in
participants’ experiences of transformation. As highlighted earlier, it is only recently that
services have begun to recognize that people with learning difficulties posses these basic
needs, along with the potential to learn and grow (Valuing People, 2001; Wehmeyer et al,
2000). The accounts in this study seem to confirm the profound importance of such an
approach.
These conclusions find support in the work of Beart, Hardy & Buchan (2004), a
grounded theory study of self-advocacy.4 Echoing the experiences of the self-advocates in
this study, Beart and colleagues (2004) conclude that membership of a self-advocacy group
changes the self-concept of participants, including feeling more confident, speaking up for
and sticking up for oneself. The present study also supports Beart and colleages’ (2004)
conclusion that this change takes places through processes stemming from the activities of
self-advocacy rather than simply through the act of teaching people how to do self-advocacy.
Beart and colleagues (2004) too highlight the importance of gaining new roles and
responsibilities, along with the experience of a positive social environment, but do not offer
an explanation for the processes of how these experiences facilitate self-concept change,
apart from by facilitating a sense of ‘status’. In light of the earlier discussion, and the themes
identified in this study, these processes could be linked to the fulfillment of basic needs for
competence, autonomy and relatedness (Ryan & Deci, 2004).
4
The author was unaware of Beart and colleages’ (2004) study when planning, conducting and analysing this
research.
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The transformative experiences reported by participants in this study offer strong support
for the claim that, on a personal level, self-advocacy can, and does, change lives. However,
Aspis (1997) argues that while self-advocacy does indeed makes participants ‘feel good’, this
does not necessarily translate into social change. Goodley (2005 p, 335) warns, “there is a
danger of romanticizing the ‘autonomy’ of self-advocates if we ignore their day-to-day
experiences of oppression”. Indeed, accounts of participants’ experiences outside selfadvocacy included being ignored, bullied and restricted in personal autonomy. It is on this
issue that social identity may hold importance. According to many researchers, the apparent
lack of a salient collective identity among participants in this study should be a barrier to
collective action (Beart, 2005; Finlay & Lyons, 1998; Kawakami & Dion, 1995). Indeed,
self-advocacy did seem be experienced by most (although not all) participants primarily as a
means for personal development and fulfillment rather than for collective action. Moreover, it
is unclear whether the participants in this study identified collectively as “people labeled by
society” (Beart, 2005, p128). Rather, most participants seemed to hold a fixed, ‘essentialist’
view of learning difficulties in which medical experience or professional diagnosis was key.
Accordingly, three of the participants in this study made clear distinctions between their
identity and those with more complex support needs, despite sharing the same label given by
society.
Implications for self-advocacy
The accounts of participants in this study suggest that ‘empowerment’ on a personal level
may not necessarily translate into a salient social identity or a desire to take collective action.
Nevertheless, the social and policy changes of recent decades do indeed have personal
autonomy at their heart (Valuing People, 2001). More work therefore needs to be done to
establish the nature of the relationship between these societal changes and the personal,
psychological impact of self-advocacy.
A second, perhaps related, implication for self-advocacy, arising from this research, is the
discrepancy between the ‘essentialist’ or ‘medical’ representation of learning difficulties,
demonstrated by many participants in this study, and the stated approach of user-led selfadvocacy groups:
“People First promotes the social model of disability…We are against the medical model of
disability…professionals put labels on us marking us out as different from everyone else. It is
these labels which get in the way and stop us taking part…” (www.peoplefirstltd.com/).
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Further research could investigate the prevalence of this discrepancy, and the reasons behind
it, along with its potential relationship with social identity and collective action. If further
research suggests that such a discrepancy exists more widely, this may suggest that selfadvocates either have not had sufficient access to the ‘cultural discourses’ surrounding
labelling (Davies & Jenkins, 1997) or have actively chosen to adopt a ‘medical’ view of their
learning difficulty. Either finding may hold significant implications for the self-advocacy
movement.
Limitations
As highlighted earlier, this was a small, qualitative and exploratory study which aimed not
to provide generalizable findings and conclusions but rather to give a nuanced interpretation
of the thoughts and experiences of people with learning difficulties who take part in selfadvocacy. As with any study of this kind, there are inevitable limitations. The analysis
offered here cannot claim to offer explanatory power for the experiences of the large number
of self-advocates in Britain and elsewhere. It must also be acknowledged that analysis will
have been influenced by the researcher’s own experiences and understandings, and therefore
the account represents only one of a number of possible interpretations.
However, each of Yardley’s (2000) principles of qualitative validity have been met.
Sensitivity to context was demonstrated during the interview process; the interactional nature
of the data collection process was taken into consideration and interviewing guidelines for
researchers working with people with learning difficulties were followed. Commitment and
rigour was demonstrated through the systematic IPA analysis stages and careful planning of
the study, outlined earlier (Smith et al, 2009). To ensure transparency and coherence, the
research process has been described in detail and all interpretations have been grounded in
the context of interview transcripts. Reflexive validity has also been achieved (Stiles, 1999):
The study began with ideas about collective identity and collective action. In the end,
identified themes were far more centered on personal restriction and autonomy, along with
personal transformation. While the accounts of participants do indeed provide insights on the
issue of collective identity and collective action, this did not seem to be the focus of selfadvocacy for most participants. In this way, the observations made in this study have changed
the researchers’ understanding.
Finally, the impact and importance of the study (Yardley, 2000), is left to the reader to
judge. By focusing on a small number of participants, it has been possible to provide a
detailed account which ‘gives voice’ to participants’ experiences and understandings. It is
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hoped that this approach has indeed provided interesting and useful insights into the thoughts
and experiences of these self-advocates.
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References
Andrews, M. (1991) Lifetimes of Commitment: Aging, Politics, Psychology. Cambridge:
CUP.
Aspis, S. (1997). Self-advocacy for people with learning difficulties: does it have a future?
Disability & Society,12(4), pp. 647-654.
Beart, S. (2005). 'I won't think of meself as a learning disability. But I have': social identity
and self-advocacy. British Journal of Learning Disabilities, 33(3), pp. 128 – 131.
Beart, S., Hardy, G. & Buchan, L. (2004). Changing selves: a grounded theory account of
belonging to a self-advocacy group for people with intellectual disabilities. Journal of
Applied Research in Intellectual Disabilities, 17(2), pp. 91-100.
Davies, C. A. & Jenkins, R. (1997). 'She has different fits to me': How people with learning difficulties
see themselves. Disability & Society, 12(1), pp. 95-110.
Deci, E. L. & Ryan, R. M. (2004). Self-Determination Research: Reflections and Future
Directions. In E.L. Deci & R. M. Ryan (Eds.). Handbook of Self-Determination Research.
(pp. 3-36). N.Y.: University of Rochester Press.
Finlay, M. & Lyons, E. (1998). Social identity and people with learning difficulties:
implications for self-advocacy groups. Disability & Society, 13(1), pp. 37-51.
Finlay, W. M. L. & Lyons, E. (2001). Methodological issues in interviewing and using selfreport questionnaires with people with mental retardation. Psychological Assessment, 13(3),
pp. 319-335.
Finlay, W. M. L. & Lyons, E. (2005). Rejecting the Label: A social constructionist analysis.
Mental Retardation, 43(2), pp. 120-134.
Goodley, D. (2005). Empowerment, self-advocacy and resilience. Journal of Intellectual
Disabilities, 9(4), pp. 333-343.
Jahoda, A., Markova, I., & Cattermole, M. (1988). Stigma and the self-concept of people
with a mild mental handicap. Journal of Mental Deficiency Research, 32(2), pp. 103–115.
Kawakami, K., & Dion, K. (1995) Social identity and affect as determinants of collective
action: Toward an integration of relative deprivation and social identity theories. Theory and
Psychology, 5(4), pp. 551-577.
Osborn, M., & Smith, JA (1998). The personal experience of chronic benign lower back pain:
An interpretative phenomenological analysis. British Journal of Health Psychology, 3(2), 65–
83.
People First. (1992). Letter to Mencap News, May.
Ryan, R. M. & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic
motivation, social development and well-being. American Psychologist, 55(1), pp. 68-78.
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Ryan, R. M. & Deci, E. L. (2004). An overview of self-determination theory: An organismic
dialectical perspective. In E.L. Deci & R. M. Ryan (Eds.). Handbook of Self-Determination
Research.(pp. 3-36). N.Y.: University of Rochester Press.
Rogers, C.R. (1959). A theory of therapy, personality and interpersonal relationships, as
developed in the client-centered framework. In S. Koch (Ed.). Psychology: A study of a
Science. (pp. 184-256). N.Y.: McGraw Hill.
Simons, K. (1992).`Sticking Up For Yourself’ : self-advocacy and people with learning
difficulties. York: Joseph Rowntree Foundation.
Sinason, V. (1992). Mental Handicap and the Human Condition: New Approaches from the
Tavistock. London: Free Association Books.
Smith, J. A., Flowers, P. & Larkin, M. (2009). Interpretative Phenomenological Analysis:
Theory, Method and Research. London: SAGE Publications Ltd.
Stiles, W. B. (1999). Evaluating qualitative research. Evidence Based Mental Health, 2(4),
pp. 99-101.
Wehmeyer, M., Bersani, H. & Gagne, R. (2000). Riding the Third Wave: Self-Determination
and Self-Advocacy in the 21st Century. Focus on Autism and Other Developmental
Disabilities, 15(2), pp. 106-115.
White Paper (2001) Valuing people: a new strategy for learning disability for the 21st
century. London: Department of Health.
Valuing People Now (2009). Valuing People Now: A new three-year strategy for people with
learning disabilities. London: Department of Health.
Yardley, L. (2000). Dilemmas in qualitative health research. Psychology in Health, 15(2), pp.
215-228.
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APPENDIX ‘A’
Easy-Read Info Sheet
Would you like to take
part in my study?
Photo
Of Researcher
My name is x and I’m doing a study as part of my Psychology
course at university. I would like to talk to you about yourself
and your experiences of self-advocacy.
For example we might talk about...
-What you think about yourself
-What it’s like to be in a selfadvocacy group
-Other parts of your life (if you are happy to talk
about this)
Would you like to take part?
If so, just let me know. I will be at the Big Day meetings so
you can meet me and ask any questions.
22
APPENDIX ‘A’
11785
Easy-Read Info Sheet
Some other things you might like to know...
•
Where will we meet to talk?
Your Group’s offices
•
Will you talk to me in a group or on your own?
I hope to talk to you on your own. There will be
other people you know in a different part of the
room so that we are safe and feel comfortable.
• Will you have to answer all the questions I ask?
No. You won’t have to answer any questions you don’t want to.
•
Can you change your mind and leave the study?
Yes. You can change your mind and stop talking to
me whenever you like. You won’t have to tell me
why you want to stop.
•
Will what you say be kept private?
Yes. I will record our talks on a tape recorder. This is
to help me remember what people tell me. Only I
will listen to these recordings. I will not use your
name in anything I write about the study. This
means the study will be confidential and
anonymous.
23
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•
Will you find out the results of the study?
Yes, I will let you know what I find out.
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APPENDIX ‘B’
Interview Schedule
Social Identities (Finlay & Lyons, 1998)
- How would you describe yourself to someone who doesn’t know you?
- If I asked one of your friends to tell me about you, what do you think they might say?
Representations of LD (Finlay & Lyons, 1998)
- Can you tell me what ‘learning difficulties’ means?
Acceptance/rejection of LD label (Finlay & Lyons, 1998)
- Would it be right or wrong if someone said you had learning difficulties?
- Have you ever thought you had learning difficulties?
Access to discourses around LD/labelling etc.
In answers to above two topics- explore whether discussed this type of thing before with
others- e.g.
- How did you come to learn about what learning difficulties means?
- Have you ever talked to anyone else about learning difficulties or about what it means
to have learning difficulties? (follow up- when/who/before self
advocacy/campaigning?)
- Have you always felt sure that you had learning difficulties? Have you talked about it
with anyone?
Representations of self-advocacy/campaigning
- You’re a member of [e.g. ‘Take Charge’], is that right? Can you tell me about that
group? (prompts/follow up q’s: what’s the group for/what do you do in that group?)
- Can anyone with a learning difficulty be in [e.g. ‘Take Charge’]?
- Why do you think some people with learning difficulties aren’t part of groups like
[‘Take Charge’
Motivations for self-advocacy
- Why did you get involved in [e.g. ‘Take Charge’]?
- How do you feel when you [e.g. are in a meeting]?
- What bits do you/don’t you like about being in [e.g. ‘Take Charge’]?
- Who do you think it is helpful for when you [e.g. go to big meetings]? (i.e
themselves/the council/others in group/others with ld?)
General life experiences
- Where do you live (house/flat/with family/with friends/)? Was it always like that?
- What kind of things do you do during the day? (was it always like this?)
- What do you like doing for fun?
- Has being in [‘Take Charge’] changed anything about your life or how you feel in your
life?
Final thoughts
- Is there anything else you would like to talk about/tell me?
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APPENDIX ‘C
Easy-Read Debrief
Thank you for taking part
in my study!
Here is some information about why I did
this study:
I wanted to find out about why people in self
advocacy groups want to stand up for the rights of
people with learning difficulties.
I also wanted to find out whether you think having learning
difficulties is an important part of who you are. I wanted to
find out if this was an important part of being a selfadvocate.
Singer?
-
Brother
?
I wanted to know about
these things so
that we can all have more information about how to help
more people with learning difficulties get their voices
heard.
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APPENDIX ‘C
Easy-Read Debrief
I will think about what people have told me and I will let
you know what I find out.
Remember, everything you have told me is confidential
and anonymous.
Thank you for helping me learn
about yourself and self-advocacy
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APPENDIX ‘D’
Table of all participants and themes
Control over
‘learning
difficulty’ status
Learning
difficulties as
restrictive
Sense of
autonomy
and efficacy
Sense of being
listened to and
understood
Self-advocacy as
transformative
Carol
I thought well I’ve
got a disability so
I’ve gotta accept
it
She lets me do me
own thing but I
know some people
don’t [pause] let
people do their
stuff but me mum
does so she’s
supportive.
and
obviously
they writ
back a email
to thank me
for the
contribution
which I didwhich I
though
woow! So
they’re
gonna so
they put that
down in the
government
slot
they writ back a
email to thank
me for the
contribution
which I didwhich I though
woow! So
they’re gonna
so they put that
down in the
government slot
I never used to say
anything I never
used to speak I
was very shy I was
very within myself
but now look at
me now it’s
through drama,
‘Take Charge’ that
made me speak
up and show me
colours what I am
really like and
what I am…
William
I can’t do that I’m
She said,
“Remember this
son-remember this
son. Things you can
not do, things you
may not be able to
do in your life,
when you got-you
got a learning
difficults”.
not only that
it’s a paid
job- it’s a
paid we get
paid every
month
...everybody
give us a good
clap
“woooosh!” all
whistled at us I
think we done
well
Cos you get an
education,
yourself... [Ok,
great] And not
only that…getting
your confidence
L: Well the best
thing is like
when we had awhen we have a
group round
and
everything ...
and they talk to
us and
everything, and
ask us questions
what we need
and what we
don’t
themes
Well, I think it goes
up every so often
if you get a like
you get better and
better [pause] in
yourself...I can be
all charge of
meetings now.
I love the job
It’s made me more
a learning
difficults.
Violet
Well, I think it
goes up every so
often if you get a
like you get
better and better
[pause] in
yourself... I can be
all charge of
meetings now.
I: Ok um and have
you ever thought
that you had
learning
difficulties?
And that’s
when they
said to us it
said oo it’s a
new law out
now. You
L: No! Well only
can say
epilepsy. That’s all
anything
that runs me down now and you
speak it back
out and tell
them what
APPENDIX
‘D’
you think
Table of all participants and
Mary
Interviewer: have
I: Have you always
Rhys said
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you always felt
sure that you had
learning
difficulties?
M: I’ve had um
I’ve had um like
medicals all these
tests and things.
felt sure you had
mild learning
disabilities?
R: Yea…I mean I
can write a bit you
know but some
things I can’t do is
form-filling.
that you did
well today…
Yea like
you’re doing
your job
properly.
and um they
understand me
confident um yea I
love the job and
um they
understand me…I
can do it on my
own today and
that’s a good…
Rhys said that you
did well today…
Liz
they kinda left me
overnight and um
they left me
overnight in the
hospital and
that’s when it all
became out how I
got to learn how I
was learning
difficulties.
…learning
difficulties people
it’s like you have to
learn something
one day from the
next…. um- one day
I will be like yea
you’re not gonna
do this you’re not
gonna do that but I
still I still do what I
have to do and I
still get where I get
to go and I do what
I have to do to get
a lift cos it’s part of
me.
they don’t
dictate what
you wanna
do. They
they listen to
you and see
if you want
to do it- if
you don’t
want to do it
um they’re
not gonna
force you to
do it…that is
the
difference
between
parents and
selfadvocacy
if you got kind
of a problems
and you’re
having
problems at
home and stuff
like that and
then you can go
and express it
and say ‘I’m
having
problems at
home’ and
they’re quitethey’re very
understanding
people
it kinda helped me
to come out of my
shell basically. So
People First kinda
helped me a lot.
Because I wouldn’t
be like I wouldn’t
go to somewhere
and talk how I talk
now. I wouldn’t be
like this I’d be shy
and stuff. And now
I can just go and
talk. And it’s kinda
helped me a lot.
Miriam
Well it was at
home I didn’t
know I’ve got
learning difficulty
I went to with my
mum I went to
the hospital
somebody told
me I’ve got
learning
difficulties and
then after that I
knew.
I: Can you tell me a
bit about what
learning difficulties
means?
it make youpeople with
learning
difficulties
think for
yourself...get
charge of
your life you
know.
People First
does help…It
relaxes me it
makes me
confident make
me happy and
people know
what the staff
understand you
got that feeling.
It’s different it is
different. I think
here is more
brought out of
yourself and more
happy more here.
Cos before you
know I was not
happy…but now
I’ve come here
talking about that
it’s like you got
things round you
like talking to you
like talking.
W: Um learning
difficult sometimes
can’t speak for
yourself you got a
er like um like
people can like
supporting you .
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APPENDIX ‘E’
Ethics Form
SCHOOL OF PSYCHOLOGY
ETHICS FORM FOR RESEARCH WITH HUMAN PARTICIPANTS PART A
Your name
11785
Your email address
[email protected]
Supervisor
Viv Vignoles
Project Title
Learning Difficulties, Collective Action and Social Identity:
Thoughts, Feelings and Experiences of Campaigners and
Practiced Self-Advocates
Degree (e.g. BSc, MRes)
BSc
Please give a response to each question below (delete the option that is not required)
Please add explanatory information where appropriate
1. Will informed consent be obtained from participants? This is defined as informing
the participant of all aspects of the research that might reasonably be expected to
influence their willingness to participate as well as the right to withhold personal or
private information.
In the case of children or adults unable to make decisions for themselves, will
consent of a responsible adult be obtained?
yes
(details in
“statement
of ethical
issues”)
2. Will participants be informed that they can withdraw from the study at any time?
yes
(details in
“procedure”
and
“statement
of ethical
issues”)
3. Will deception - defined as giving misleading information - be involved? Note that
many experiments involve withholding of information, since participants can modify
their behaviour if they are aware of the APPENDIX
hypothesis. ‘E’
no
3a. If the answer to 3 is "yes", will the deception be of a kind that would lead to
Ethics Form
participants objecting or showing unease once debriefed?
n.a.
4. Will participants be debriefed? This involves providing participants with necessary
information to complete their understanding and monitor feedback from them with
yes
30
11785
regard to any unforeseen events during the experiment, e.g. painful apparatus
(details in
‘procedure’
and
‘statement
of ethical
issues’)
5. Will the experiment involve any undue risk? Undue risk is defined as a risk that
participants would not take during their normal lives.
no
5a. If the answer to 5 is “yes”, has the research project previously been referred for
approval to an Ethics Committee?
n.a.
6. Is the research likely to obtain evidence of physical or psychological problems of
which participants may be unaware? If so, how will this fact be communicated to
them (or in the case of children or non-consenting adults, to a responsible adult).
no
7. Are the data to be kept confidential (i.e. personal information identifiable only by the
researcher and supervisor)? If the answer is "no" who else will the data be made
available to and how will the participant be asked to consent to this?
yes
8. Does the project require ethical approval from an ethics committee that is external to
the University? If so how will this be obtained?
no
9. Do you or your supervisor believe there are special ethical issues with the proposed
study that you would like reviewed by the ethics committee?
yes (see
‘statement
of ethical
issues’)
IF YES, What are they?
You must also answer the following question
Will the proposed research expose the researcher or the participants to risks different
from or greater than those of everyday life?
no
If your proposed research involves any of the following, you must tick "yes" and
complete a risk assessment form to be signed by you and your supervisor:
(1) work with non-human animals
(2) work in biological laboratories
(3) work off-campus in unfamiliar settings
If your answer is "yes" you must complete a full risk assessment form available at:
http://www.sussex.ac.uk/psychology/1-3-14.html
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APPENDIX ‘E’
Ethics Form
SCHOOL OF PSYCHOLOGY
ETHICS FORM FOR RESEARCH WITH HUMAN PARTICIPANTS PART B
Title: Learning Difficulties, Collective Action and Social Identity: Thoughts, Feelings and
Experiences of Campaigners and Practiced Self-Advocates.
Background (no more than 150 words):
Explain the aims of your project, and refer very briefly to relevant previous research. Provide
a rationale for your research, and explain what contribution it is likely to make. State your
hypotheses, with an appropriate justification.
This study is based on an established finding that a significant proportion of people who have
been labelled as having ‘learning-difficulties/disabilities’ either deny the applicability of the
label to themselves or do not use it spontaneously in self-descriptions or explanations (see
Finlay & Lyons, 2004). Finlay & Lyons (1998) linked this finding to some of the problems
faced by ‘learning-disability/difficulty’ self-advocacy groups and campaigns, pointing out
that many such groups appeal to a collective identity which does not seem to be salient for a
significant number of people included in this social category.
This study, therefore, aims to investigate the thoughts, feelings and experiences of people
who are involved in self-advocacy/campaigning. Specifically, I hope to explore whether
these people do in fact identify strongly as a ‘person with learning-difficulties’ or whether the
label is rejected/used in more of a pragmatic way. I also hope to explore peoples’ motivations
for, and feelings about, being involved in collective action. Furthermore, it will be interesting
to investigate how being involved in collective action has affected people’s self-concepts or
life experience.
This is an exploratory study with no hypotheses but could contribute to the ‘social model’ of
learning disability as well a holding implications for the ways in which self-advocacy
groups/campaigns organise themselves/appeal to members.
Method summary:
a) Identify who your participants will be, how many and how they will be recruited.
32
APPENDIX ‘E’
11785
Ethics Form
The participants will be people who are classified by the services they use as having
‘learning difficulties’ or ‘learning disabilities’ and who are practiced members of selfadvocacy groups or active contributors to ‘learning difficulty/disability’-related campaigns.
‘Practiced self-advocates’ will have had experience being part of decision-making processes
outside of their immediate group(s) (e.g. sitting on local authority partnership boards).
‘Campaigners’ are defined as those who have chosen to contribute to a campaign aimed at
improving the lives of people with learning difficulties.
The study will use an opportunity sample of approximately eight participants who will be
recruited through self-advocacy and campaign groups based in and around London and
Brighton. I will first contact self-advocacy/campaign group leaders or project managers,
asking whether they think group members might like to take part. If so, I will provide
individuals with more information about the study and how to take part if they are interested.
b) What is your design?
The study will use qualitative, semi-structured interviews.
c) Give a description of the materials you will use. In the case of questionnaires, explain how
your items were constructed and what they are supposed to measure.
The interview is designed to be semi-structured and informal. There will, however, be a few
specific questions, taken from Finlay and Lyons (1998):
5.
6.
7.
8.
9.
How would you describe yourself to someone who doesn’t know you?
If I asked one of your friends to tell me about you, what do you think they might say?
Can you tell me what ‘learning difficulties’ means?
Would it be right or wrong if someone said you had learning difficulties?
Have you ever thought you had learning difficulties?
Questions 1 & 2 are designed to explore participants’ social identities and particularly
whether or not ‘learning difficulty’ is a salient part of participants’ self-concept. If learning
difficulty is mentioned spontaneously in self-descriptions, this could suggest salience,
whereas, if learning difficulties are not referred to, this may suggest non-salience. Question 3
is designed to explore participants’ representations of learning difficulties. Questions 4 & 5
are designed to measure whether or not participants reject the label ‘learning difficulties’.
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Remaining interview questions are more flexible and will depend on the course of each
interview. Please see attached interview schedule for more details.
A dictaphone will be used to record interviews for later transcription. The study will also use
several ‘easy-read’ info sheets which I will design myself, with input from a contact at
Valuing People Now (a government initiative to promote self-advocacy for those with
learning difficulties).
d) Provide a brief description of the procedure you will use, including any debriefing.
Interviews will be carried out individually in participants’ group offices. All interviews will
be recorded for later transcription. The length of the interview will vary up to approximately
one hour. The interview schedule will consist of a series of open-ended questions designed to
elicit information on p’s social identities; salience of the label ‘learning difficulties’ to p’s
self-concept; p’s representations of learning disabilities; p’s access to discourses around
issues of labelling; p’s representations of, and motivations for, getting involved in self
advocacy/campaigning; whether self-advocacy/campaigning has changed p’s social identity
at al, as well as some of their general life experiences.
In order to obtain informed consent, an ‘easy-read’/accessible info sheet will be sent round to
groups before meeting (see end of document). This will include info on the likely topics for
discussion as well as issues of informed consent such as right to withdraw without reason and
confidentiality (including use of a dictaphone). If participants express an interest, individual
interviews will be arranged. Here, the following procedure will be used to ensure informed
consent:
1) briefly reiterate the likely topics for discussion
2) re-explain info sheet, especially confidentiality and right to withdraw without reason
at any time
3) check understanding- explain again if seem unsure
4) participant provides verbal consent
Participants will be debriefed after their interview with the help of another short, ‘easy-read’
info sheet (See attached for a draft. This may be amended slightly after consultation with my
contact at Valuing People Now. Amendments will only be for clarity and the essentials of the
debrief form will not be changed). After analysis, I would also like to update participants on
my general findings and get some informal feedback. This will be obtained by meeting with
groups for an informal group discussion. Again, easy-read materials may be useful here.
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e) Include a statement on ethical issues. – Even if there are none, you need to demonstrate
that you have thought about this, and justify your conclusion that there are no issues.
The primary ethical issue in this study is the participation of people classified as ‘vulnerable
adults’, who are likely to face extra difficulties in protecting themselves and in making
informed decisions. As such, extra steps will be taken to ensure informed consent. In the
spirit of self-advocacy and of the Mental Capacity Act (2009), additional consent will not be
obtained by other adults/supporters/parents etc but rather potential participants will be
supported to make their own decision about whether to take part in the study. An official
summary of the Mental Capacity Act (2009) states:
“…every adult has the right to make his or her own decisions and must be assumed to have
capacity to do so unless it is proved otherwise....No one can be labelled ‘incapable’ simply
as a result of a particular medical condition or diagnosis”. P1-2 209 summary of Mental
Capacity Act.
Therefore, apart from the initial screening of the study by a project manager or group leader,
(which offers extra protection), informed consent will be obtained from participants
themselves (see ‘procedure’ above as well as copies of info sheet). This sheet will be
distributed in advance of meeting potential participants so as to ensure they have time to
consider whether they would like to take part, as well as the opportunity to consult parents or
supporters.
If participants seem to understand and are interested to take part they will then be assumed to
have capacity to give consent. However, I am aware that participants are still likely to need
extra support in making an informed decision. Therefore, when re-capping info for informed
consent at the start of each interview (see procedure), I will make sure to always use clear and
simple language. I will be sensitive to the fact that participants may say they understand these
issues when they don’t fully, and will ask questions to check this. I will be careful to ensure
that potential interviewees understand this important information before asking for their
consent.
Working with ‘vulnerable adults’ also raises issues of safeguarding. The fact that this study
uses individual rather than group interviews raises extra safeguarding concerns, both on the
part of the participant and the researcher. To overcome this, interviews will take place in a
familiar location (p’s group offices) and in a quiet corner of a room with familiar others,
rather than a separate room.
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Ethics Form
An additional ethical issue is the possibility of upsetting content in the interview. I have taken
two steps to minimise this risk. Firstly, I have discussed the interview topics and potential
questions in detail with two experienced professionals in the field of ‘learning disability’ and
self-advocacy. They have expressed that the interview is unlikely to be traumatic or upsetting
but have pointed to a few specific topics which will require extra sensitivity e.g. ‘life
experiences’, especially living arrangements (as older participants are likely to have spent
time in unpleasant long-stay hospital institutions). Secondly, during the interview, I will
therefore be sensitive to how the participant is feeling and, rather than waiting for participants
to voice concerns, will offer opportunities to move on to another topic or to end the interview
if this seems appropriate.
There is no deception involved in this study, and full information on the rationale will be
provided in debriefing, in easy-read format. Apart perhaps from the safeguarding concerns
addressed above, participants and researcher will not be exposed to any undue risk.
f) Indicate briefly how you will analyse your data.
I will transcribe recordings and analyse the data using Interpretive Phenomenological
Analysis (IPA).
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