Life story analysis
(1) Introduction
In this analysis of the life stories we refer to the content and interplay of
various resources that make up a network of resiliencei. Resilience is often
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understood as an individual trait or characteristic, something a person has
(or not). In public discourse, for example, in the media, a person is
thought to be resilient if they can ‘bounce back’ after a bad experience or
if they ‘never give up’ despite adverse circumstances. We have argued in
the literature review that resilience is about more than individual character
traits. Indeed, thinking of resilience in terms of personal characteristics
alone can lead to individuals being blamed for for their lack of ability to
bounce back or to persevere. In our view, being resilient is not simply an
end point that is achieved (or not), rather resilience is an ongoing process
and that we all realise our potential in relationships with others. This is the
key message disabled people have given us in the life story phase of the
research.
Through the analysis, we have been able to develop our understandings of
these key resources as follows:
Material - Availability of financial, educational, technological, medical, and
employment opportunities or assistance, as well as access to food,
clothing, and shelter to meet basic needs. A lack of one material resource
(e.g. money) can be circumvented by another (e.g. unpaid support by
extended family).
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Relationships - with significant others, peers, and adults within one's
family and community. A consideration of the kinds and qualities of these
relationships including trust, love and intimacy.
Identity - Personal and collective sense of self and purpose, aspirations,
beliefs and values, including spiritual and religious identification.
Encompasses twitter, Facebook and non-virtual spaces. A nebulous but
crucial concept best thought of as in flux, shifting and blurring
personal/collective identities
Bodies - A strong recurring theme in the narratives but best understood as
the body-the-world: as soon as one speaks of the body then society and
culture enter the fray. The body can also include the mind – for example in
a discussion of learning disabilities and mental health – but as mind-inthe-world.
Power, control and communication - knowledge is power but so is real
control of one’s life. Works well to bring in how we conceptualise power as
something one has and something that flows through people. Having the
opportunity to communicate, in a variety of diverse ways, is an essential
part of having power and control.
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Community participation - Taking part in one’s community through a
host of activities and engagements – participation refers to instrumental
acts and activities – what is done in the community.
Community cohesion – a community’s potential to include or exclude
members to partake in activities – an exploration of values and
commitments on the part of community members and a sense of
belonging.
Social Justice - Huge overlap with community cohesion. Therefore, need
to conceptualise social justice in terms of wider structural inequalities and
forms of discrimination – and examples of structural equality and antidiscriminatory policies / practices.
Figure 1 (below) is a visual representation of the network of resilienceii:
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We suggest that these resources cannot be seen as discrete or entirely
separate categories, but are overlapping and interconnected resources. It is
access to these resources that allows a person to have a sense of
him/herself as ‘resilient’iii.
Our analysis is of the stories and accounts from the six groups of
participants (see details in the methodology section below) and reveals
distinct ways in which some of these resources connect or settle at
particular times and places across the life course.
This report focuses on the life stories of disabled people guided by the
analytical framework outlined above.
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(2) Methodology
In this second phase of the resilience project, following the literature
reviewiv, we sought to explore the concept of resilience with disabled
people themselves through the use of interviews. We adopted a narrative
approach to the interviews. Narrative research methods have been used
extensively in research with disabled people and their alliesv and are
underpinned by the belief that disabled people are experts in their own
livesvi. Disabled people are not seen as simply subjects of research but as
active participants in the research process. Specifically, our participants
were invited to tell us about aspects of their lives that they felt were
important to them, as well as addressing the research aims and interests of
the wider research project. Throughout this analysis we refer
interchangeably to participants and narrators to capture their distinct
involvement and contribution to the research project. Stories offered rich
and thick accounts of people’s lived experiences; they offered unique
insights into personal accounts. At the same time, stories gave access to
the contemporary social, political, policy, service, community and familial
contexts in which they were framed. Stories were not simply about
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individuals; they also illustrated the wider social and cultural factors that
frame the narratives of people. The personal and collective aspects of
resilience we identified in the literature review were, therefore, illuminated,
revisited and in many cases reframed through the stories we collected.
Ethics
The life story phase was guided by a reference group of disabled people
and by project board members at Scope and at Manchester Metropolitan
University. All narrators understood their rights to confidentiality and
anonymity in the research process and the right to withdraw from the
research at any time, without having to give their reasons. Interviews were
audio recorded with narrators’ permission. All participants were given
copies of the interview transcripts and the life stories were constructed in
consultation with them. Where participants felt that they benefitted from
the input of significant others to their story (for example, in the case of
children and their parents or other family members, some adults chose to
be interviewed with their partners or with their Personal Assistant), we
adopted a ‘distributed methodology’. A ‘distributed methodology’ meant
that we aimed to combine ethically, sensitively and carefully the
perspectives of an informant and those of significant others. We sought to
address the potential dangers here of others’ accounts dominating those
of the primary narrator. We sought to ensure that the holistic and
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informative account provided was that of the narrator. While we
acknowledge those critics who suggest that the accounts of powerful
others may dominate the accounts of disabled people, a distributed
methodology was employed here only when the narrators themselves
invited others to contribute to the sharing of life stories. Moreover, we
hope that the richness of narratives was further enhanced through the
bringing in of disparate, distributed but interconnected voices.
Recruiting participants
Participants were recruited from throughout the north-west region of
England and from a range of urban and rural locations between
November, 2011 –March 2012. Information about the research was
disseminated via a range of organisations including: disability specific
support organisations, pan-disability organisations, parents’ groups, carers
groups, disability mailing lists and by word of mouth. Participants who selfidentified as disabled people were included in the study and this included
people who identified with a range of impairment labels including: physical
impairments, the label of learning disability, life-limiting/threatening
impairments and mental health service users. As our initial sample had
failed to include people who use assisted and alternative forms of
communication (AAC), we recruited a group of three young people who
use AAC to a small focus group to supplement the life story phase of the
8
study. We were subsequently able to interview one young person who
used AAC.
Interviewing participants
Narrators were interviewed at a time and location of their choosing. Often
this was in their own home but sometimes participants were interviewed at
their place of work or in a pub or café. Some participants were interviewed
via the telephone if this is what they preferred or because they lived a
long way outside the North West region and they were happy to be
interviewed on the telephone. One participant chose to be interviewed via
email as this suited her communication style. One participant chose to be
interviewed by Skype as this was more convenient for her. Where
participants were not interviewed in person, or where interviews took a
‘distributed’ approach as outlined above, this is indicated in the participant
tables below.
Introducing our participants
Our original intention was to recruit six participants to each of six groups
as follows:

Disabled children (0-14)

Parents/carers of disabled children (including parents/carers of adult
children)

Disabled young people (14-25)
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
Disabled people of working age

Older disabled people (60+)

Disabled people with degenerative and terminal conditions
As the tables below demonstrate there was over recruitment in some of
the categories and slight under recruitment in others. Narrators in the
sample groups were as follows (pseudonyms are used throughout):
Group 1: Children
Pen portrait
(0-14)
Summer *
Summer is 5 years old, she is described as having
Cerebral Palsy and a learning disability. Summer
lives with her mother, Cate, father Chris and big
sister Beth in a city suburb. Summer attends a
special school.
Mark *
Mark is 10 years old, he is described as having ‘high
functioning’ autism. Mark lives with his mother,
Nancy, and sister in a small town in a semi-rural
location. His brother, Greg, aged 17, lives in a special
residential school nearby. Mark attends a
mainstream primary school with an ‘autism unit’
attached. He is about to transfer to an independent
school for children with autism. Mark’s father lives a
long way from the family and has intermittent
contact with Mark.
Peppa *
Peppa is five years old, she is described as having
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global developmental delay and a speech
impairment. Peppa lives with her mother father and
older brother and sister in a small town in a rural
location. She attends a local special school.
Annie *
Annie is fourteen years old, she is described as
having profound and multiple learning disabilities
and she has a life- threatening impairment. Annie
lives with her mum and dad, and her younger
brother in a large town. Her big sister has her own
family and lives nearby. Annie attends a local special
school.
Diane*
Diane is twelve years old and is a wheelchair user.
She lives with her mum and her younger sister in a
small town. She spends time with her dad on a
regular basis. She attends a local mainstream high
school that has a base for disabled children.
* distributed approach. The following people collaborated on writing the
children’s stories:

Summer, her mother and sister

Mark and his mother

Peppa, her mother, father, brother and sister

Annie, her mother father brother and sister

Diane, and her mother
Group 2: Young
Pen portrait
People (14-25)
Lucy **
Lucy is in her mid-twenties. She describes herself as
having mental health difficulties. Lucy is currently a
student and lives with her cat.
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Jim
Jim is nineteen. He describes himself as having
dyslexia. He is currently a student living at
university.
David
David is twenty-three. David describes himself as
having cerebral palsy. He is a recent graduate. He
currently lives at home but is about to move into
independent living.
Greg*
Greg is seventeen years old. Greg is described as
having autism and severe learning difficulties. He is a
school student. Greg lives in a residential special
school.
Asad
Asad is seventeen. He describes himself as being
deaf. He is a sixth form college student. He lives
with his parents and siblings.
Michael
Mike is nineteen. He is a college student. He
describes himself as having cerebral palsy. Mike
lives with his parents.
Hayley
Hayley is twenty-two. She attends a specialist
communication college. Hayley is an AAC user and
wheelchair user. Hayley lives with her parents.
* Distributed approach: Mark and his mother collaborated to write his
story.
** Email interview: the interview was conducted by email, as the participant
chose this as her preferred communication style. About ten emails were
exchanged over a couple of weeks.
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Focus group of
Pen Portrait
young people who
use AAC
Joseph
Joseph is seventeen and attends a local
communication specialist college. He is a wheelchair
user and uses AAC. He lives at home with his family.
Martin
Martin is seventeen and attends a local
communication specialist college. He is a wheelchair
user and uses AAC. He lives at home with his family.
Adrian
Adrian is seventeen and attends a local
communication specialist college. He is a wheelchair
user and uses AAC. He lives at home with his family.
Group 3:
Pen Portrait
parents/carers
Cate
Cate is in her early forties. She is the mother of
Summer who is 5 year old and has the label of
Cerebral Palsy. She is married to Chris and has an
older daughter Beth who is eight years old. Cate
works for a disability charity
Nancy
Nancy is in her mid forties. She is the mother of
Mark who is ten and has the label of Asperger
Syndrome and Greg who is seventeen and has the
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label of severe autism and mental health issues. She
has an older daughter who is at university. Nancy is
divorced and her ex-partner has limited contact with
the family. Currently Nancy has no paid work outside
of the home, but she is very involved in a local
parents’ organization.
George
George is in his early forties. He is the father of
Diane who is thirteen and has the label of Cerebral
Palsy and Kelly, who is eleven. George is divorced
from Diane’s mother but plays an active part in his
daughter’s life. George is self-employed.
Kirsty
Kirsty is in her mid-fifties. She is the mother of
Louise who is nineteen and has the label of learning
disability. She is married and has an older daughter.
Kirsty is a manager.
Molly
Molly is in her early fifties. She is the mother of
Annie who is fifteen and has the label of a severe
learning disability and life-threatening impairment.
She is married and has a younger son at home and a
daughter who has her own family. Molly is a nurse.
William & Penny
William and Penny are in their fifties. They are the
parents of Neil who is twenty-eight and has the label
of severe learning disability. Neil lives independently
in his own home close to William and Penny’s home.
They have an older daughter who has her own
family. William is a former bank clerk who now
works in the disability field. Penny is a former midwife and now works as a care manager for Neil.
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Janice
Janice is in her mid forties. She is the mother of
Peppa who is five and has the label of global
developmental delay. She has two older children – a
daughter, Kagome and son, Mr Bob. She is married
to Phil. Janice is a former speech and language
therapist but she currently has no paid work outside
the home.
Helen
Helen is in her early thirties. She is the mother of
Billy who is nine and has the label of autism, ADHD
and epilepsy. She has an older daughter and a
younger son. Helen is no longer married to Billy’s
father, but is remarried. Billy’s father still plays a role
in Billy’s life. Helen used to work in the NHS but has
recently given up her job because of her caring
commitments.
Brian and Jane
Brian and Jane are in their sixties. They are parents
to Gabby who is in her thirties and has Down’s
Syndrome. She works as a sou chef and is a Special
Olympian. Brian used to work in construction but
both Brian and Jane now work in the disability sector.
Alice ***
Alice is in her forties. She is the mother of Adam
who is 12 and has autism and Down’s Syndrome. She
has an eight year old daughter and four year old son.
Alice has no paid work outside of the home.
Rebecca ***
Rebecca is in her late thirties. She is the mother of
three year old Aaron who has Down’s Syndrome.
Rebecca has two older children and is married.
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Rebecca works with people with the label of learning
disability.
*** Telephone interviews
Group 4: disabled
Pen Portrait
people of working
age
Mary
Mary is in her mid forties. She has the label of
cerebral palsy. She lives alone. She is a voluntary
worker.
Abbey
Abbey is in her early thirties. She has the label of
spina bifida and is a wheelchair user. She lives
alone. She works as a disabled student support
officer.
Matlida
Matilda is in her early thirties. She has a physical
impairment and has used mental health services.
She lives alone. Matilda works for a disability
organization.
Jill
Jill is in her late thirties. She has the label of clinical
depression. She lives with her husband and two
children. Jill works in Human Relations at a large
organization.
Afia
Afia is in her late twenties. She has a physical
impairment as a result of a car accident in her teens.
She lives alone. Originally from Russia, she has
recently completed her PhD and is seeking
employment in the UK.
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Geoff ***
Geoff is in his early fifties. He has a physical
impairment and is an amputee. He lives with his
wife. Geoff works with people with the label of
learning disability.
Rachael ***
Rachael is in her late twenties. She is a wheelchair
user. Rachael lives at home with her parents.
Rachael works as an access officer for a disability
charity.
*** Telephone interview
Group 5: older
Pen Portrait
disabled people
Olivia
Olivia is in her early sixties. Olivia has a visual
impairment. Olivia lives with her husband and has
two grown up children who have left home. Until
recently, Olivia was a university lecturer, she has just
retired.
Flora
Flora is in her mid-sixties. Flora has Multiple
Sclerosis and is a breast cancer survivor. Flora lives
alone and has grown up children. Flora works for a
local organization of disabled people.
Simon
Simon is in his early sixties. Simon has a form of
muscular dystrophy. He lives alone. Simon recently
retired from an office job.
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Luke
Luke is in his early sixties. He has a physical
impairment and dementia. Luke is a mature student
and lives in university halls with the support of a
carer.
Graham
Graham is in his early eighties. He has a range of
age related impairments and a long-standing
mobility impairment. He lives with his wife. He is a
retired engineer.
Group 6: disabled
Pen Portrait
people with
degenerative &
terminal
conditions
Jack
Jack is in his mid-thirties. Jack has a degenerative
neurological impairment. He lives alone. Jack was
recently made redundant from his job at a local
newspaper and is currently studying for his PhD.
Chris
Chris is in his mid-forties. Chris has a degenerative
neurological impairment. He is married to Cate and
father to Summer and Beth. A former nurse, Chris
works with people with the label of learning
disability for the local Primary Care Trust.
Ellie
Ellie is in her late fifties. Ellie has a degenerative
neuromuscular impairment. She lives with her adult
son. Ellie is a chemist.
Jenny
Jenny is in her mid forties. She has a degenerative
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condition. She lives alone. Jenny is a university
lecturer.
Emma
Emma is in her mid-forties. She has Multiple
Sclerosis. She lives
alone. Until
recently, Emma
was a research
academic but
currently she is
not in work.
Beatrice****
Beatrice is in her early thirties. She has a congenital
heart condition and was given six months to live five
years ago. Originally from the United States,
Beatrice lives alone and is studying for a masters
qualification at university.
****This interview was conducted via Skype
Analysing the stories of our narrators
Our approach to analysis was underpinned by an understanding of
resilience based on social constructionist modelsvii. Drawing on the
discussion in the literature review and the overview of the resources
provided in the introduction above, we identified eight resources. Life
story interviews allowed us to explore with narrators the significance of
these resources in their lives and the ways in which they impact on leading
fulfilling lives but also how the interconnections between them might
impact on potential in a person’s life.
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A thematic analysis of the transcripts was guided by each of the resources
identified above. We were aware that, in taking this approach to analysis,
there is a danger of forcing the stories into the network. We sought to
reduce this danger by constantly re-visiting the data and checking that we
were not shoe horning data into the pre-existing categories. We also
checked that there were no omissions in the categories, or stories, that fell
outside the resources we had identified. We were satisfied, on reflection,
that the categories work and that they allowed us to develop a
constructive approach to analysisviii.
The report follows a life course structure focusing on resilience at each
stage of disabled people’s livesix from childhood to older age,
encompassing the input of parents/carers in the lives of disabled people.
A life course approach allows us to explore how stories unfold at different
historical moments and in different cultural contextsx.
While we felt it
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important to include a separate group of disabled people who identify
themselves as having degenerative or terminal conditions in the
recruitment phase of the research, their stories are analysed through the
life course approach. So for example, Annie’s story is included in the
section on disabled children, rather than in a separate section on the
experiences of disabled people with terminal and degenerative conditions.
We felt that this fitted better with the life course approach to analysis we
have taken.
In the sections that follow, we present the life story analysis of the lives of:
 Disabled children
 Parents/carers of disabled children
 Disabled young people
 Disabled people of working age
 Older disabled people.
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(3) Resilient children: bodies,
bedrooms and champions
Key points for resilience:
Diagnosis acts as both a passport to resources and a barrier which means
that expectations are low;
Accessible homes and environments are important to children;
Bodies matter;
Parents/carers, siblings, friends and professionals can all act as children’s
champions;
The expectations and aspirations of adults around them impact
significantly on the lives of disabled children, sometimes in positive ways,
sometimes in more negative ways;
Participation does not always mean doing what ‘non-disabled children’ do.
I am 10, live at home with my mum and brother and sister in Northwest
town. I go to school there. I have a cat called Riley and love playing
Minecraft. My favourite food is chicken. I am very shy and don’t like noisy,
crowded places. I pick things up quickly, but anxiety can make it difficult
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for me to talk to people. I don’t like being given direct orders, asking is
better! I like my laptop, or something I really wanted and got. I like …
My cat Riley. My computer and playing Minescape. Familiar people, places
and routine – family, home, school. Feeling welcome, included and valued.
Being clever.
(Mark, disabled child)
My name is Summer, I am five years old and I go to a special school. I
was born early and I like crawling and using my big buggy. I live with my
mum, dad and my sister Beth who is eight. I love my mum and my dad
and my sister very much. I have a best friend called Dan and I really like
Dean, head teacher at my school, Lily, my teaching assistant, Louise, my
dinner lady and Mary, the lady from [voluntary organisation] who takes me
out. People say that I am funny and kind and loving and good at listening.
I like being tickled. I like playing with my sister – we play teachers. I like
sitting on my sister’s lap. I like being read to and I like singing – but I
don’t like it when other people join in… I like Charlie and Lola, the Little
Princess, chocolate, bananas, Pig goes Pop and turning my light on and
off! I also like being in the garden, digging in the mud, getting messy and
growing things.
By Peppa
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My name is Annie, I am fourteen years old and I go to a special school. I
live with my mum, dad and my brother who is eleven. My big sister, who
is 23, lives nearby with her family. I love my mum and my dad and my
sister and my brother very much. They say that I am happy go lucky, I
smile a lot and that I teach them what the important things in life are. I
like music – especially the Backstreet Boys and S Club 7 and Kylie Minogue
to calm me down or the Eagles at night time. I like to try and take wet
wipes out of their packet. I like throwing them behind me
Material Resources
For children, an inclusive home, captured by a ‘good bedroom’ and a
supportive family (that is very much supportive of you) emerged as key
conditions of a resilient life. This is significant when one recognises that
many disabled adults continue to live in inaccessible homes devoid of
adaptations.
Unsurpisingly, children did not mention money, the benefit system nor the
pressures of their parents balancing work and family life. They did,
however, display coherent knowledge about a host of material conditions
of everyday life. Children cited the importance of prosthetic and adaptive
devices (such as wheelchairs, augmentative communication and hoists).
They and their families reminded us that these devices are expensive. They
were also clued up on the importance of informal support networks under-
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girding everyday life. Parents, siblings and friends provide key
relationships to young children. Mark told us that his life benefited from:
Familiar people, places and routine – family, home, school; feeling
welcome, included and valued.
While Annie had very clear ideas about how others can best relate to her:
You need to learn all about me. There is an information pack in my
home which you need to read carefully and slowly, take your time,
and ask my mum, my dad, my sister or my brother if you are
unsure. To keep me safe, read all the information about me. I need
resources – like a hoist and a special bath.
Identity
Children spoke to us about developing a sense of being different from
other children. Clearly, a disabled identity brings with it a sense of
difference and otherness, not least in the eyes of non-disabled peoplexi
and yet children’s identities were intimately tied to specific interests and
activities that they were involved in as much as they were tied to notions
of disability. As we can see from the Peppa and Mark’s stories, the stories
give a real sense of who they are through music, play and popular culture.
They also remind us of the need to understand the complex ways in which
identities are formed in a social world in which disabled identities are
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often viewed as lacking, deficient and Other. For many children, their
encounters with the notion that they are different begins with their bodies
and the responses of other people to their bodies.
I remember thinking that the diagnosis I got was
freedom at first, but now I have it, its really restrictive
because it’s not mainstream, no one recognises it, so
therefore I don’t fit into a nice box so I don't get any
services.
(Lucy, young disabled person).
Bodies and Minds
Childhood diagnosis may provide a functioning impairment labelxii that
allows services and professionals to respond to the needs of children. For
others, diagnosis brings uncertainty.
So she has global developmental delay. They should just write
down a paragraph which says “we have no idea what it is”!.
Phi
I’ve
got a friend with cerebral palsy, I was sure Peppa had cerebral palsy
l.
too and I was banging on about it “please can we scan her?” They
Ja
scanned her and she doesn’t have it. But my friend said she had
nic
e
thought that Peppa had CP as well. But a colleagues of hers had
is
told her “Oh well, of course, you’ve got cerebral palsy because
a
when you were being diagnosed that’s what they called anything
for
they didn’t understand and now they call it global developmental
me
delay”, so it’s obviously it is just that same catch all the term! But
r
sp
26
ee
ch
an
Janice is in her mid forties. She is
the mother of Peppa who is five and
has the label of global
developmental delay. She has two
we’ve got better scans now so we can look at
them and say “oh it’s not CP, after all” (Janice,
older children – a daughter, Kagome
and son, Mr Bob. She is married to
a mother)
We sat there and asked a couple more
Cate is in her early forties. She is
questions and with a big huff, the consultant
the mother of Summer who is 5
said “listen Mrs ***** I can’t tell you if your
daughter’s got cerebral palsy or not, what I can
tell you is…” and the words cerebral palsy
year old and has the label of
Cerebral Palsy. She is married to
Chris and has an older daughter
Beth who is eight years old. Cate
drifted through the air, and at that point there was just this white
works for a disability charity
noise and I could see her mouth moving, I don’t know what she was
saying after that point, I didn’t listen… I didn’t know what cerebral
palsy was, I didn’t know what it meant. I knew it was something
drastic but I wasn’t sure what. As we travelled back in the car, Chris
[partner] was swearing, he was saying she didn’t know what she was
on about, she was grasping at straws. When we got home Chris
disappeared. I found him upstairs on the computer and he had put
‘cerebral palsy diagnosis indicators’ into the computer (Cate, parent).
These dealings with health professionals around diagnosis have been
widely documented in the literaturexiii with one key observation relating to
the paradoxical ways in which a diagnosis both gives a label to difference
(which might be viewed as positive) whilst potentially pathologising the
child (which can be felt as negative). Any conception of resilience,
therefore, must be mindful of the significance of labels of difference and
the label’s influence on the person and others’ perceptions of a person so
labeled.
27
As children grow older bodies can create uncertainties. As a child gets
bigger then this might create difficulties for their parents in terms of lifting
and place greater demands on responsive and suitable adaptations. These
adaptations are expensive, often dependent on disability benefits and
always difficult to access. Some disabled childhoods are marked by the
stress of operations, hospital visits and rehabilitationxiv that drain resilience.
All of these experiences lead to a sense of bodily difference as, in many
cases, the body is understood by medical, health and psychological
knowledge in negative ways. And yet the body is, also, a key site for the
development of a resilient identity: an identity that is aware of one’s own
body and the need for other people to respond supportivelyxv. The body
can be seen as a key site for children defining who they are and reminding
people of how they should respond to their bodies. Children were very
much aware of their bodies and had clear ideas about how others should
touch, respond and respect them:
I don’t like being pushed in my wheelchair by someone who hasn’t
asked me. Being tipped out of my wheelchair! (Summer)
I am very shy and don’t like noisy, crowded places. I pick things up
quickly, but anxiety can make it difficult for me to talk to people
(Mark)
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I don’t like it when people have cross or loud voices Being in a
busy shop without my headphones in. It is OK for me to go in
there if you remember to put my headphones on before we do!
(Annie)
Parents/carers played crucial roles in enabling their children to develop a
positive sense of identity and in shaping what it was possible for their
children to achieve. Parents are key advocates or champions for their
children.
Brian and June told us:
We just decided that we would give Gabby what we would give to
any of our children so she went to brownies, guides, she learnt to
play the piano, she did ballet and tap. Obviously her achievement
levels were lower but that didn’t matter, she was getting things back
from it and she was learning. At six she started gymnastics and she
went to her first games in Dublin when she was seven and she did
gymnastics from seven to sixteen. She retired a sixteen but she still
does swimming and fitness.… she has been to Russia, Estonia,
Denmark, Germany and the United States.
Her parents’ support meant that Gabby saw herself as an athlete, allowing
her to have power, control and communication in her life although Brian
and June felt that this had been achieved in spite of other people seeing
Gabby as a ‘Down’s Child’ and having low expectations of her.
29
Looking back at her life, Beatrice also told us how her parents’
expectations of her had crucially shaped her life in promoting her
resilience:
One of my cardiologists made a comment to me once she said “you
know most congenital heart patients kids don’t move out of their
parents house. It’s like pretty phenomenal what you have done” and
my response was: “I didn’t really know there was any other option. I
didn’t ever really realise that I could have just sat at home and felt
sorry for myself because for my parents absolutely that was never
one of the options” and I am really glad about that. It’s like I wasn’t
treated differently I mean I know that I was I know that I was treated
differently, but not to the best of their ability not, I wasn’t.
When children have different ways of communicating, the body remains a
place where choice and control are exerted: where bodies initiate
resilience, where boundaries are laid out about the use of prostheses,
equipment and adaptations surround the bodyxvi.
 Summer’s advice captures the body as
a key site for training, advising and
monitoring other people’s reactions and
responses. Children assert a sense of self –
a positive identity – through exploring
their own comportment in the world.
Summer is 5 years old, she has the label of CP and a learning disability.
Summer lives with her mother, Cate, father Chris and big sister Beth in a
30
city suburb. Summer attends a special school. We can represent Summer’s
connections in terms of a network of resilience:
As we can read from the visual network, the body becomes a key medium
through which a host of other resources are illuminated from fighting for
equipment (social justice), having an accessible shower room (material)
and struggling to traverse inaccessible environments (community
participation). The lesson from our child narrators is that the body can
only be understood in its social, cultural, community and relational context.
31
Bodies have the potential to demand environmental and cultural changexvii
that promotes resilience.
Annie did not like being a pain and would cry to make sure others knew.
Equally, she told us, she got very cross when she was hungry: a common
experience of many children! It is tempting to focus on the impaired body
as the site for considering the capacities (or limits) of resilience. But, as
Annie demonstrates, all accounts of childhood emphasise the emergence
of the body but that the body cannot be separated from the world in
which it is situated: bodies become known, marked, felt, understood and
reacted to the world in relationships with othersxviii:
A bad day for me: I would have to get up early and eat all my
breakfast. I would have to get dressed and have my nappy changed
and wear my splints. I wouldn’t be able to wash
my hands or get muddy and I would have to go
to a crowded place where people flushed toilets
and used the hand driers. And then I would go to
a party where a balloon would pop and I would
go out for tea somewhere I didn’t know (Summer,
disabled child).
A bay day: would be to get up early and be in a
rush. I’d have to go to a busy supermarket
Summer is 5 years old, she is
decribed as having CP and a
learning disability. Summer lives
with her mother, Cate, father
Chris and big sister Beth in a
city suburb. Summer attends a
special school.
Annie is fourteen years old, she is
described as having profound
and multiple learning disabilities
without my headphones and somebody who
and she has a life- threatening
didn’t understand me would feed me. I’d get
impairment. Annie lives with her
thirsty or have a tummy ache. I don’t like it when
mum and dad, and her younger
brother in a large town. Her big
sister has her own family and
32 attends a
lives nearby. Annie
local special school.
new people crowd round me when they are trying to get to know
me. I don’t like business, they need to take their time to get to
know me and listen to my family who can help tell them what I like
and don’t like and what I need to keep me safe. BUT my day would
be made better if you could sing me a song and give me a cuddle
in a calm, peaceful place (Annie, disabled child)
Power, control and communication
Being supported in their communication is key to children having a sense
of power, control and communication in their lives. Children complained
that they were not asked often enough for their opinions. Instead, as is
often the case in childhood, their views were spoken via proxies.
I do get involved in review [annual review of the statement of
special educational needs] meetings, but it is hard to say when you
are not happy with things, and they tend to have more meetings
about me than with me. At the last review, there was some person
on the list I didn’t even know, the reviewing officer or some woman!
I do join in, they do ask me what I would like to say but their stuff
comes first and then they ask me. (Diane, child)
Asad told us, in contrast, that the fact that his parents
Asad is seventeen. He
spoke English as an additional language, meant that
describes himself as being
professionals spoke to him:
college student. He lives with
English is my first language but my mum and dad’s
deaf. He is a sixth form
his parents and siblings.
first languages are Urdu and Punjabi. So generally,
when we met with doctors and so on, I would communicate with the
33
doctors because my parents didn’t understand as much English as
me. So professionals would explain it to me, tell me about where to
get advice and so on and I would tell my parents. As I got older,
my parents’ English got so that they understood.
Asad’s story reminds us of the importance of access to information in the
lives of families of disabled children. Knowing where to go and and who
to ask for information and advice is of key importance in creating
resiliencexix
While acknowledging the limits of choice and autonomy afforded to
(disabled) children, it is important to acknowledge the power, control and
communication of parents and family members that are essential to
supporting resilient childhoods, a point we develop later in the section on
parents/carers of disabled children. Suffice to see here: all the disabled
children we spoke to cited their families as key championsxx. Moreover,
disabled children spurred on their families to advocate for them, accruing
many cultural, social and intellectual forms of capital that families might
not have had prior to the presence of disabled childxxi
This raises important questions about advocacy and support in the lives of
disabled children who do not live with their families or whose families are
unable to speak up for them for a variety of reasons, including: the
34
complexity of the systems and services on offer, living in poverty or the
additional challenges faced if English is an additional rather than first
language. If familial resilience undergirds the resilience of disabled
children, then children without resilient families face significant threats.
Community
The children were keen to share with us what they liked to do. These
activities indicate forms of community participation that encompass
specialist and inclusive early years contexts including respite and short
breaks, playing on the computer at home, watching Charlie and Lola or the
Little Princess in your bedroom, eating chocolate, digging in the garden,
getting dirty, eating fish and chips at IKEA, learning about colours and
numbers, dressing up.
Children shared with us what might be seen as quirky and unusual
interests and activities as evidenced by Annie
I like it when a spoon drops on the ground - woops!!
Their accounts broaden our understandings of childhood participation, play
and leisure; iindicating the value of particular interests to community
participation.
Children alerted us to the way in which resilient activities need not
35
necessarily involve doing what other (non-disabled) children do. Some
children preferred quiet and solitary activities. Others were more interested
in being with a crowd.
My perfect day: I would be with my family. I would get
up slowly and everything would be very calm. I would
listen to music all day and have the mirror ball going. I
would be in the sunshine and I would be able to go on
the beach and put my feet on the sand. Then I would
go in the hydro pool and splash about and I would
have a bath too and splash about in there – I’d play
splish, splash, splosh! And I would eat LOADS of food! When I
came home, I would have my thigh massages and stay up late!
(Annie, disabled child).
Alongside what they like, as we mentioned above, children had definitive
views of what they did not like. Summer does not like hand driers, busy
places or the sound of the toilet. We know from previous research that
children use bedrooms as a safe, private and confidential spaces through
which a sense of self and belonging may growxxii. Disabled children
recognized this and also pointed out the need for inclusive and adapted
spaces.
Community cohesion was articulated by the children in terms of the
willingness of others to support them in their activities in ways that were
36
sensitive to their bodies and identities. Indeed, as we shall see, parents,
carers and families play a crucial role in educating others in their
community about the politics of disability. However, we should not ignore
the fact that children are themselves resilient agents of change.
Social Justice
Disabled children, through their very existence, promote a sense of social
justice:
We never used to complain, right letters, speak out, particularly, we
aren’t the sort of people that would necessarily say, this is wrong.
We’d probably have a chat about it, put our names down on
petitions every now and again but to be on the front line fighting,
you know is a rally awkward position for me and Craig to be in, and
we’ve had to learn to be in that position. The only way I think we’ve
managed to do that is by thinking in many ways this is not for us,
this is for Summer and Summer can’t advocate for herself, and if we
don’t do it then her life will be undoubtedly disadvantaged. So that
has been really, really hard I think, learning to fight, when it’s not
the actual kind of default kind of mode really (Cate, parent).
Disabled children have the potential to act as catalysts for the emergence
of resilience on the part of their families and allies. The emerging resilience
of children is umbilically tied to their disabled identities and embodied
differences. Indeed, while children might not have used the rhetoric of
37
anti-discriminatory legislation nor the policy words, say, of anticipatory
duty, the underlying meanings of these practices were evident in their
accounts:
As Annie put it:
I need people who … Care about me; Listen to me and learn from my
family; Take the initiative; Fit in with my family; Follow my routines
with food and medication and sleep’. And so to remind you some of
the things that are important to me:

My family

Learning about me and what my needs are

Caring for me and about me

Fitting in with me and my family

Listening to me and my family
Clearly, while we met many strong characters amongst our small group of
disabled children whether or not they continue to thrive depends hugely
on the capacities of families, allies, services and professionals to value their
lives, aim high in order to release their potential.
Practictioners make a huge difference in the lives of disabled children and
their families. Summer told us:
38
I really like Dean, head teacher at my school, Lily, my teaching
assistant, Louise, my dinner lady and Mary, the lady from [voluntary
organisation]
However, at times, the actions of the adults in children’s lives also created
barriers for disabled children participation in schools and communities:
So I had a teaching assistant to support me in school from primary
school until about Year 8 in high school, but I used to get really
frustrated because the teaching assistants weren’t helpful. They just
said: ‘you can be like everyone else if you just try harder’ and I felt
confused, because I didn’t want to be like everyone else. I decided I
had outgrown this sort of support. I don’t want a teaching assistant
any more. (Jim, young person)
At break time, I have to sit in a room with all the disabled children. I
don’t really know why because, well I used to have to go to the toilet
at break, but I don’t now. It seems like they’re trying to club all the
disabled children together, we’re not ordinary friends, if I made an
enemy of one of the people in there or something, if I had an
argument with one of them, I’d still have to sit in there with them.
(Diane, child)
At school, I hate the way that the teaching assistants look through my
planner and say: “have you done this homework and
have you done that homework?” and I’m like “no, I
was planning on doing it.” They don’t need to do
that for me because everyone else is allowed to
Diane is twelve years old and
is a wheelchair user. She lives
with her mum and her older
sister in a small town. She
organise themselves. The teaching assistants tend to
spends time with her dad on
think that I need to be perfect, even though everyone
a regular basis. She attends a
else doesn’t have to be perfect. The teaching
local mainstream high school
that has a base for disabled
children.
39
assistant hasn’t got time to go round to check on everyone to make
sure they are doing their work exactly perfectly. The teaching
assistant writes things in my planner, teachers tend to say what target
would you like to set, but my teaching assistant just writes stuff in my
planner that she thinks I should improve. (Diane, child)
Disabled adults, looking back at their childhoods, also recalled the bullying
and harassment they experienced from their (non-disabled) peers.
As a child, I was very easily upset, very easily hurt, was bullied, was
left out, all those stereotypical things - not ever physically bullied. I
went to a girls’ school and there was that mean ignoring that girls
can do. And, actually being run away from that’s the one thing that
sticks as an adult because I couldn’t keep up so they would run away.
Nobody wanting to sit next to you or choosing you for teams, those
kind of things.
Matilda (disabled person)
I was still bullied at school [despite the presence of a teaching
assistant]. I was bullied by a girl called Jane Smith who effectively
appeared to be jealous that I had a woman that came to the toilet
with me, which now as an adult I found pricelessly amusing.
(Abbey, disabled person)
The participants were divided about whether attending mainstream or
special school increased or depleted their resilience. Abbey went to
mainstream school and told us:
40
My ex partner was special ed, and the difference in his life chances
and where he got to, he didn’t even go to university until he was
thirty one, I was only twenty.
(Abbey, disabled person)
But Michael (young person) told us:
I was transferred to a local high school myself for brief period but
that wasn’t a pleasant experience. I wasn’t bullied or anything but
[other pupils] just kept going too fast.
(Michael, young person)
Parents and carers talked about how they could support their children to
be resilient. Brian and June had clear ideas about how to build their
daughter’s resilience and the threats to resilience she faced:
I think with Gabby what we have always thought of as resilience is
respect and confidence. And confidence and respect in itself gives
people resilience. Because if you respect other people, they tend to
respect you and therefore you can cope with things and do things
and your aspirations become that much more and you can come out
of that a better person. We expected more of Gabby and that in itself
gave her resilience.
The way society treats disabled people is
definitely a threat. Society and the media as a whole,
One of the things for Peppa that we feel is important is emotional
resilience; it strikes me as something that’s perhaps even more
important than speech and movement. It’s something that my
husband and I thought about a lot with the older two children as
well … I think the only way that you can build resilience in a little tiny
41
one like Peppa, is to let them know that they can come to you, so
that they can still be brave, but if it’s still too much then they can
come to you and you’re the one that has to be brave. But also, this
might have been a different answer before last week, but my feeling
has always been that she’s got to try things. She’s got to be allowed
to play and she will fall over and she will hit her head, and she’ll do
that in the garden and she’ll do that in the house and she’s got to be
allowed to do it because it just that if she was younger and learning
to walk I would probably let her do it but she might always be like
that. (Janice, parent)
Janice tells us that building resilience in Peppa’s life means that she needs
a good strong support network but also the opportunity to take risks.
Barriers to resilience for children often include exclusionary attitudes in
schools and other community settings; schools and teachers lacking a
sense of anticipatory duty on the part of their school to promote disability
equality; recent government policy initiatives to ‘end the bias towards
inclusion’xxiii; the inability of other parents of non-disabled children to think
about the education of all children not simply their own; an uncritical
expectation of educational and physical achievements based on notions of
the typically developing child. These factors, which threaten to put disabled
children at risk, have already been well documentedxxiv.
However, the
children in this study have demonstrated that with good support, from key
people and their local communities, and with the opportunity to
participate in activities and to take risks, it is possible for disabled children
42
to be resilient and for them to be the catalyst that builds resilience in
others.
(4) Resilient parents / carers:
social justice, tricks of the
trade and ‘challenging the
norm’
Key Points:
Parents/carers and children value short break provision but there is already
evidence to suggest that the availability of short breaks is reducing after
changes to the funding stream that mean that money is no longer ring
fenced.
Parents/carers continue to face considerable barriers to work including lack
of affordable and appropriate childcare and flexible work;
Parents/carers describe the on going ‘fights’ they have for the children in
terms of accessing education, health and social care. Paradoxically, they
described these fights as both contributing to building and draining their
resilience;
43
Parents/carers value their relationships with other parents of disabled
children as key supports;
Parents/carers describe ‘hostile communities’ which, sadly sometimes
include their extended families;
Parents/carers re-think their understandings of ‘normal’ bodies and ‘typical’
development.
Disabled children are often the catalysts for resilience in parents/carers’
lives.
Material Resources
It could be argued that the labour of parenting of disabled children is truly
one of material labour: with parents and carers consistently engaged in
fights for financial, physical and structural support. Carers are plunged
into potentially a life time of labouring for the material needs and rights of
their relatives. There is no doubt that policy and funding initiatives such as
Aiming High for Disabled Children: Better Support for Familiesxxv have
supported and helped families in immeasurable ways and yet in a time of
economic restraint such funding streams are no longer ring fenced. The
process of accessing Disability Living Allowance and other benefits is a
huge struggle identified by parents as often a torturous processxxvi. For
44
some carers the very process of ‘playing the game’ to access benefits and
short break support required them to display overtly a lack of resilience by
focusing on their difficulties ‘coping’. Indeed, the present system of
accessing benefits and support puts family resilience at risk as
parents/carers find themselves in the demoralising position of having to
put forward the worst case scenario in order to access minimal amounts of
support – and some times no support at allxxvii
When we had the social work assessment, a friend had warned me
that the only way you are going to get a short break is to say that
you are having a breakdown. I didn’t believe that could be right – it
is ridiculous. But the social worker sat there and said: “I need to ask
you one final thing, are you on the verge of a breakdown or is your
relationship?” I could not believe that this was part and parcel of the
assessment, because I could lie to her, and then presumably she’d
tick the box and I’d get the hours, or I could sit there and I could
say to her “no” and then she could go away and deny us the hours.
This is like a ridiculous trap almost for parents to fall into. So I said
to her: “well, if you’re asking me, are you or is your relationship
going to have a break down if you never give us any support then
the answer is yes. If you’re asking me am I on the verge of a
breakdown right now at this very point in time the answer is no, but
given that if you don’t give us any support then the answer would
be yes, then if you go away from here today and don’t give us any
support then I will be on the way to that, yes, and that’s is as honest
as I can be with you. She looked a bit flummoxed and she said:
“well right ok”. And I thought I’m not sure how she’s going to
interpret that but I can’t lie (Cate, mother of five year old summer).
45
In the cases where families were allocated benefits and services this did
not necessarily equate with an easy life. With short break provision
arranged, parents still expressed anxieties about the inconsistent
relationships being made with their children:
Cate is in her early forties.
Under Aiming High for Disabled Children funding,
She is the mother of Summer
we’d had three hours a week short break provision,
who is 5 year old and has the
but that has been reducing, our three hours a week
label of Cerebral Palsy. She is
became three hours a fortnight and then three hours
married to Chris and has an
a month. It was supposed to help with Summer’s
older daughter Beth who is
learning and development but it has just been a baby
eight years old. Cate works
for a disability charity.
sitting service to be honest. And it has been a bit mixed – I mean
there was no consistency at first, different people all the time, then
we did get consistency but I wanted to be clear that this person was
not a friend, the carer is sharing your house, she’s here sometimes
when we’re not, she’s sharing
your children, she’s playing with them, and it’s difficult to keep
that as professional but that is what we want (Cate, mother of
five year old Summer).
And as short break money for disabled is no longer ring fenced, parents
are already seeing their children’s short breaks being eroded.
We know that four in ten disabled children live in poverty and that 65% of
those children live in extreme povertyxxviii. The Coalition government
proposes reforms to the welfare system to encourage families to work
46
their way out of poverty, and, although work-life balance is a perennial
problem for all families, it can be especially challenging for families with
disabled children. Only 16% of mothers with disabled children work,
compared to 61% of other mothersxxix. A significant barrier to work is the
lack of appropriate and affordable childcare.
I employed three new girls last Christmas through an agency and
paid for them out of the direct payment account.
One of them ended up being somebody that was on
Facebook all the time and it didn’t work, so she
went. The other girl’s boyfriend smashed her car up
Molly is in her early fifties.
She is the mother of Annie
who is fourteen and has the
label of a severe learning
so she couldn’t come to work and then the other
disability and life-threatening
girl got a full-time job in a school but still wanted to
impairment. She is married
come and didn’t want to leave us. So consequently, I
and has a younger son at
have got nobody that could help me to actually hold
home and a daughter who
my job down. So now in my responsible job, [as a
has her own family. Molly is
a nurse. told
nurse] I was letting the ward down so I went to my manager
her “I can’t do this I don’t know what I am going to do but it’s
going to make me very sad to give up”. She gave me time to try
and sort it out so I had a month off to try and find some new
people which I employed via another agency and that is just starting
now. And that’s exhausting in itself because you have now got to
teach them everything that you do and it’s in your home. They’ve
transferred me from staff nurse to bank staff now and I’ve been off
work, so I’m back on Carer’s Allowance, so there is a financial strain
on the family now. (Molly, parent mother of fourteen year old Annie)
However, there are other barriers to parents working. Helen told us:
47
I had to give up work in February, because I did get very stressed, it
was just too much. I didn’t even notice until one day I just completely
melted and I never went back and I gave my notice in. Work were
really good, I had been there for ten and a half years, they had seen
me through my pregnancy so they had gone through every step of
the way with me. But you are always doing something you know, you
are always going to see the neurologist, always
going to ADHD clinic and I felt like I was never at
Helen is in her early thirties. She
is the mother of Billy who is nine
work and all my holidays were being booked off
and has the label of autism,
to see people and then we didn’t have a
ADHD and epilepsy. She has an
holiday…Things have been difficult financially since
older daughter and a younger
I gave up my job. We don’t go out any more, we
son. Helen is no longer married
don’t do anything, the kids understand that
to Billy’s father, but is remarried.
everything we have to do is a very limited budget.
Billy’s father still plays a role in
Billy’s life. Helen used to work in
But it’s not always about money, is it? (Helen, mother of nine year old
Billy)
Some parents explained that they were able to work
because of their flexible employers and working
colleaguesxxx:
I’ve worked on and on and off, after a fashion,
all the way through having the children. I was
working four days a week just before I found
out I was pregnant with Peppa and I was really
enjoying it. So I was expecting that I would have
her and then do what I’d done before, but I didn’t
work at all during all this period of finding out
things were wrong and when I was offered work
the NHS but has recently given
up.
Janice is in her mid forties. She is
the mother of Peppa who is five and
has the label of global developmental
delay. She has two older children – a
daughter, Kagome and son, Mr Bob.
She is married to Phil. Janice is a
former speech and language
therapist but she currently has no
Chris is in his mid-forties. Chris
paid work outside the home.
has a degenerative neurological
impairment. He is married to
Cate and father to Summer and
Beth. A former nurse, Chris
works with people with the label
there were problems with getting a day nursery
of learning disability for the local
that wasn’t terrified of having her there, so I didn’t
Primary Care Trust.
do any work until she got a little bit older. The
48
child development centre told me that any day nursery would take a
child with difficulties, which was a complete lie! I was very angry
because the day care nurseries wouldn’t take her, they were terrified, I
could hear that when they were interviewing me. So the disability
equality act is not true!
Janice (mother of five year old Peppa)
I’m in a quite lucky position [at work] because having become quite
informed about my rights and establishing myself in a position where I will
say at work, I’m going to this appointment with Summer or I’m going to
spend some time at home. I know deep down there’s people who might
think: “ we all want to spend a bit of time at home”, but I think I’ve got a
bit more assertive about saying what I want but that’s probably built on
the basis that I deliver the work. If I wasn’t performing in my job I think I’d
really would struggle with saying what I want … Sometimes it means taking
work home and doing it a night when the kids are in bed and stuff like
that, but nobody can turn round to me and say “you were in late”. If I feel
something’s at threat regarding my family then I would become quite
militant … I don’t want to be, but I will be like that if I have to. I would be
very wary about changing into another job because I’ve established that
sense of people know where I know where I stand. I think, that it makes
you a lot stronger but it does discourage the ability to be more impulsive.
(Chris, father of five year old Summer)
However, Chris felt reluctant to move jobs for fear that they would not be
able negotiate flexible working in different working environments.
Relationships
49
We know that parenting a disabled child can impact negatively on
marriage and relationships between carers. This is often less to do with
the impairment of the child and more linked to the stresses of fighting for
a disabled child and the pressures of living on a low incomexxxi.
We’ve been very lucky in the sense that we’ve got a
really, really good special school for Summer, just
round the corner, who do go that extra mile …
People say that when you have a baby, it can rock a
relationship and if you’re not strong it will break you,
and that’s very true, but when you have child with a
disability that’s probably so much more true and we have been
rocked and tested and it is the strength of our relationship has
carried us through it. We have humour, we laugh at each other and
how we deal with things. We have a very healthy kind of way of
offloading this with each other, having a rant about things and
getting frustrated but we are always there for each other. I really
have to say I don’t know how anyone does this on their own, I really
don’t, unless they have a very, very tight network of friends and
family, which we do have some very good friends and most of them
have children with disabilities, but they’re all so different and have
such different disabilities, that they all have different concerns and
yes, there is that kind of support level there but when it’s something
like this that is so personal to your family, and the school which is
your backup, that’s been our saving grace really. (Cate, mother of
five year old Summer).
When marriages did break down, but close working and supportive
relationships remained, this worked well for children. Although, as we
50
found with one divorced father we spoke to, the fact that there could only
be funding for adaptations to one family car and one home (which were
the mother’s) meant that it was difficult for him to spend time with his
daughter.
We can’t take her hoist everywhere we go. It is difficult trying to take
her to the toilet or getting her in and out of my car. Now my partner
and I live separately, my partner has got Diane’s adapted vehicle but I
am managing with a normal car. (George, a father of thirteen year old
Diane)
As we have also seen in the sections on children and young people, it
seems that the presence of disability – or negative attitudes towards
disability - can be the catalyst for the emergence of resistance and
resilience. The very relationship of caring, whilst one associated with the
stresses of fighting the system, also has the potential to bring with it great
resources on which parents draw onxxxii:
As a parent, not only do you have a child that
obviously from the onset is considered different,
but every step of the way to enable that child to
have the same as your other children it’s a battle.
(Brian and June, parents of Gabby who is in
her thirties)
For five years I was doing all Annie and I did a lot of fundraising
and fought for a grant for Annie’s bedroom and bathroom and
51
hoists. I actually fought the system. The County Council were saying
that we were entitled to the disabled facilities grant but there is only
twenty thousand in the pot and there are two families in [our area]
who needed it so would you be willing to split the money?
I said
“hold on a minute, I can’t be worrying about another family”. But
here I was worrying about another family because I know how
desperate it is. So I fought and fought and fought and when I was
at desperation stage I rang the Family Fund and said “I don’t know
who to turn to, we really need this bathroom and this girl is going
to get bigger an I have been told I can’t have it – I have had three
quotes from builders over the last three years and now they are
going to pull the plug from it. And I’m distraught!” The lady on the
phone said “You don’t know who you are talking to do you I
actually wrote that reform, I work for the MPs.” So behind the
scenes some things had gone on and we did get the grant in the
end. But we were so exhausted with the fight that we didn’t
complain. (Molly, mother of a fourteen year old)
In addition to care work, the body is also a space to develop resilience –
not only for the child – but also for the parent as they revisit, perhaps,
some of their own assumptions around normality and the body:
Beth was born two months early, when she came out she was small
but a perfect little baby. Summer was born three months early –
she looked like a little bird, a bit red, a bit see-through, a bit
unfinished. But when we took her home after eleven weeks in
special care, they said ‘here’s your daughter, she is fine, take her
home and enjoy her”. So we did (Cate, mother of a five year old).
This message of ‘enjoying the child’ is one often shared by parents of
52
disabled children and hints at the gift of parenting and caring. For some
parents their children’s bodies meant that they were plunged into
relationships with professionals in health, education and social care:
I wrote a diary from that day for a whole year documenting
all of her appointments and we had two hundred and fifty
appointments in the first twelve months.
(Molly, mother of a fourteen year old)
The impact of these relationships can simultaneously build but also drain
parents’ resilience:
I was worried, so at about seven months, I took Peppa to see the
health visitor. Peppa was really tired and she was on my knee and her
head was flopped forward and the health visitor went bananas. She
said “there’s something wrong with her!”. It was awful actually. I was
saying “well, actually, this is her really tired and she isn’t physically
great usually but she’s not like this.” I said “can I bring her back
another day, not at sleep time?” But the answer was “oh no, you need
to go and see the paediatrician now!” It was a real panic and it really,
really upset me and really frightened me. I felt the news was broken
to me very badly. When I did go and see the paediatrician, he asked
me what I thought and I said “I think she’s slow, but she’s going
along in a line, it is developing”. I think that I just want you to give
her a bit more time and the paediatrician listened to me but actually
in the end the health visitor was right. (Janice, mother of a five year
old)
53
Different bodies demand different responses, care practices and
supportxxxiii:
When she gets up in the morning, we get her out of bed and we
pick her up and we carry her downstairs, then we feed her, then we
change her nappy, because she’s incontinent, then we get her
dressed, because she can’t dress herself, and then we pick her up
and we put her back on the sofa, and we then brush her hair,
because she can’t brush her hair, brush her teeth cos she can’t
brush her teeth and then we put her in her wheelchair and we
wheel her out to the car, then we take her to school, and we pick
her up from school and we bring her back and we do her tea and
we put her in the bath, we wash her, cos she can’t wash herself, and
we take her out and then we read to her, she can’t read and you
stand back and you think, “gosh yes.” And sometimes you’re
reminded when you see other children of the same age who don’t
have a disability (Cate, mother of a five year old).
If a key aspect of recognising one’s resilience is pitching this in relation to
the particularities of a family then this was supported by parents talking
about the ways in which they re-evaluated developmental milestones and
celebrated their child’s achievements in their own right. Rather than simply
judging their child’s developmental achievements against the usual
milestones, families would often create their own. Bodies are not simply
fixed or static, they are shifting and changing as they are understood in
different ways, by different people, at different times. Parents often reject
dominant narratives about the body as they challenge the norms typically
associated with the developing childxxxiv.
54
I have become a more assertive stronger person. Loving Summer
and looking at having different dreams, different goals is something
that I think you have to kind of get used to, so, whereas when she
was three she managed to kneel up, it was just like, oh my god, and
it was such a beautiful day and I’ll always remember it, you know.
All those kind of stepping stones and milestones that you look at
from the health visitor and stuff, they just go right out of the
window and it’s a whole different set of goals and they come slowly
and sometimes they don’t come and sometimes, you know you’re
still kind of hoping for things to come. But from that I suppose I’ve
learned a lot about myself, about you know adjustments in life and
about the value of life and about the value of love I suppose, and
seeing that despite all the difficulties about picking her up and
feeding her and caring for her (Cate, mother of a five year old).
For some carers challenging the norms involved them literally wheeling
away from certain groups of professionals:
They decided that Neil was going to be
profoundly disabled, they just said he was going
William and Penny are in their
to be handicapped and it would be best if we
fifties. They are the parents of
put him in a home, because if we took him home
Neil who is twenty-eight and
it would destroy our marriage. He was nineteen
has the label of severe
months when he had the diagnosis and I was six
learning disability. Neil lives
months pregnant at the time and they offered
independently in his own
me a termination by caesarean section the next
home close to William and
day. They said we should not bring another child
Penny’s home. They have an
like that into the world.
older daughter who has her
own family. William is a
I just turned round to William and said: “this ain’t
former bank clerk who now
works in the disability field.
Penny is a former mid-wife
55
and now works as a care
manager for Neil.
where I’m going with him. If they just think he’s useless!” That was
the attitude of all the staff, the speech therapist, the physiotherapist,
occupational therapists, paediatricians, they were all there. I said
“there is no way I’m want to bring Neil up in this environment and
there’s no way I’m going to terminate a baby”. So I said to William
“you can either sit here and listen to it or you can follow me out”
and I went out and William followed…. So we walked away from
medical services – the only thing we did was glasses. That was one
of the turning points in Neil’s life, we didn’t realise that he was so
frightened because he couldn’t see anything. (Penny, mother of 28
year old Neil)
Power, control and communication
Other carers could not make such choices because they were required to
access professional interventions throughout the life course. And yet some
parents took power and control from professionals, choosing to manage
their children’s care almost in spite of professional roles and interventions:
So really you are your own - you’re like the consultant [medical
practitioner] in charge of your daughter. It’s up to you. At the
moment she has a mark on her back that has not gone away – it
might be a pressure sore. I brought it up, I told everyone and I
bought her a cushion. (George, father of fourteen year old Diane)
Managing relationships with professionals and accessing information in
order to feel that parents had power and control in their lives was a key
issue for parents and crucial to their resilience as Nancy (mother of ten
56
year old Mark and seventeen year old Greg) explained:
It has been really difficult for me, I’ve come as near to a nervous
breakdown as you can without actually having one. I would say to
other parents that you need ‘information, information, information’,
get to understand the system. And learn to dance with the
professionals, people say it is a fight, but it is more of a dance and if
you dance slightly differently and the outcome will be different. So
keep dancing!
Community
For parents/carers community cohesion links directly
in to a sense of solidarity with other parents. Meeting
other parents of disabled children offers opportunities
for them to share experiences, for community participation and crucially
to share information. This sense of solidarity is particularly important when
parents experience discrimination and rejection – often from friends and
families close to them:
My side of the family has been really good. I’d a fear I wouldn’t cope
and that I would be at home with three boys and
not able to do much for the other [non-disabled]
Rebecca is in her late
two. I had a vision of exhaustion, bitterness and
thirties. She is the mother
resentment, not because of my child but because of
of three year old Aaron who
the systems. I was tired and worried. My partner
has Down’s Syndrome.
Rebecca has two older
children and is married.
57
Rebecca works with people
with the label of learning
still doesn’t get it, he doesn’t take the leads on appointments or
anything. And although my family are great, it has driven a bit of a
wedge between me and my mother-in-law. She was in Australia
when Aaron was born and my partner had emailed her to say I was
struggling a bit and I saw her reply - I should ‘pull myself together
and stop wallowing in it’. My mother-in-law has decided that she
doesn’t need to learn Makaton and that she will communicate with
Aaron in her own ‘special way’ – so we are always delighted when he
signs and she doesn’t know what is going on! She’s married to a
brash American and some while before Aaron was born, we were
talking about my job [working with people with learning disabilities]
and he’d said that basically people with learning disabilities are a
drain on society and should be shot. When we had our first baby we
were told there was a high risk of Downs, which turned out to be a
heart condition, and he suggested we get rid. So he had dug himself
a bit of a hole there, but actually he is really good with Aaron and
loves him to bits. I know there is a bit of pity there but he loves
Aaron, he thinks he’s ace. (Rebecca, mother of three year old Aaron)
I think I have pushed my mum and dad out; maybe for their own
good.
They don’t ask to have Billy anymore. Purely because they
can’t cope very well and that’s fair enough but I wouldn’t push Billy
on anybody. I wouldn’t want Billy to get upset by putting him in that
situation. I went sort of through a mourning period because Billy is
not my old Billy, he is a different Billly now and it still does upset me,
because I miss my little boy. But I don’t think my parents have gone
through that yet. But they need to do it in their own time and realise
that he is never coming back. So I think that’s another reason just
you know just stay away if you can’t accept it, just stay away. But as I
say I am at the very early stage of building up this resilience I am not
quite there yet at the moment. And I think sometimes I pretend to be
58
resilient and I will take it on the chin and then at home later on I will
be just devastated (Helen, mother of nine year old Billy)
The sense of lack of community cohesion, even within the extended
family, is a key threat to resilience. Helen felt unable to share her
experiences with other people as she felt they wouldn’t understand, lack of
community had a big impact on Helen’s sense of resilience:
I think I am still building my resilience, it’s still pretty low at the
moment but day by day I am learning that I have got to protect Billy.
I have got to protect my family and I build up walls to people I do
block people out. I don’t listen to what people say all the time, and I
do shield Billy a lot and that is my way of building up mine and Billy’s
resilience. He will learn from me and we will build it together.
There is no doubt that while the benefits system, exclusionary educational
settings and community marginalisation puts disabled families at risk these
very same experiences appear to promote within carers a sense of social
injusticexxxv.
And I do a lot of sitting in coffee shops with friends,
but in the day. I think a lot of people might go out
for a drink in the evening, well I like to go and meet
people for coffee. I just think it depends what you
like, I think as you get older, you get to know
yourself. So when I’m stressed I withdraw, I shut
Kirsty is in her mid-fifties.
She is the mother of Louise
who is nineteen and has
the label of learning
disability. She is married
and has an older daughter.
Kirsty is a manager.
59
down and I, if I’m really stressed I’ll just sleep, but you know that
you need to make the effort to go out and for me I need to go out
and have contact with other human beings, and just stay sane really.
But I think I’ve just learnt to cope like that over the years (Kirsty,
mother of nineteen year old Louise)
That’s why it is good to meet other parents of disabled children. I
think that’s quite useful to feel like you not the only ones because
speaking to other people, even if they are friends, they really don’t
know what you’re going through or understand.
They can
sympathise with you but I feel like I have got a bit of phobia almost
now about parents of able bodied children, especially young families
because I went through that with Diane, if somebody tells me they
are pregnant or you know I just think “oh God!” (George, father of
thirteen year old Diane)
George’s story tells us about his sense of community cohesion with other
parents of disabled children, but he simultaneously talks about the sense
of distance he feels from parents of non-disabled children.
While parents spoke of parent/carers groups as lifelines: sharing common
experiences and knowledge about service provisionxxxvi, they appear to
have little choice in becoming involved in discourses and practices of
social justice: an affront found in and out outside of the UKxxxvii.
It was because the MP got involved, the school got involved and we
said that we would get the solicitors onto them, so then I think they
turned it around and said “I think we won’t do a core assessment
then, we’ll just come and visit you”, and actually it was at that point
60
that I realised that the social worker, the previous social worker
hadn’t been to either of the panels (Cate, mother of five year old
Summer)
So far I have been so beaten and disappointed by the system and
its lack of ability – it wears you out. (Alice, mother of Adam who is
12)
The concept of a ‘normal’ progression towards the future is troubled by
disability:
A health visitor sat in this room with us and said: ‘You can’t run with
it Molly, in the next two years, you will piece together her milestones
what her future may or may not be’. So I went straight out and
bought a puzzle and I put a piece a day in for two years to build a
picture. I didn’t know what the puzzle was, it just happened to be
Austria where we had taken [my older daughter] when she was tiny.
We built that puzzle but, when the two years were up, there were to
pieces missing so we never completed it and to me it was a guide
that we were never to know how it was going to be. We won’t know
how Annie [disabled daughter] is going to be or if she is not going to
make it or whatever. (Molly, mother of fourteen year old Annie)
It could be argued that parents/carers are drawing on, and contributing to,
a more enabling conversation about disability: where disability is seen as
an opportunity for celebration rather than for mourning.
61
It is in relationships with practitioners and services that parents negotiate
their children’s identities as a disabled child:
One of the things that I struggle with healthcare professionals,
doctors particularly, when we had Summer was their reluctance to tell
you what they suspected. That partly may be medical litigation issues
and a fear of us saying “you know you said this” but I think, there is
this sense of protecting people from information and I’m a great
believer in people can deal with really difficult stuff but you need to
give them as early a head start in it as possible. I think with Summer,
she’s got a learning disability and I don’t know the depth of that and
I’m not really that interested in that, but what I care about is the fact
that it’s an acknowledgement that there’s a learning disability and I
appreciate. I think that there is this fear that there is a lot of stigma
attached to learning disability but that to me is the issue, it’s the
stigma. I think her learning disability is a huge challenge but it’s a
challenge that’s not going to get reduced by not identifying it, but by
identifying it. And without the diagnosis, you can’t access services.
(Chris, father of five year old Summer)
I’ve seen this guy at the local shopping mall and he is in an electric
wheelchair and he has ‘Spaz 1’ as his number plate, and I’m never
quite sure how to deal with that. It is like when black people use the
‘n’ word.
I wouldn’t encourage Summer to go around doing that sort of thing
but I find it quite interesting. I’ve seen it a few times with young
people, they become punks with cockatoo hair and everything and I
just think I can understand that sense of thinking “ you’re going to
look at me, I’ll give you something to look at.” I admire that, I don’t
have that in me but, I really like to see people who are able to
express their individuality and also that they’re very different to other
62
people with disabilities and suddenly you get that this is not a
homogenous group.
(Chris, father of five year old Summer)
Chris tells us about the process by which he came to understand that his
daughter has the label of ‘learning disability’ while at the same time
thinking about the ways in which Summer will have to negotiate her sense
of identity as an adult. For parents, embracing a disabled identity for their
child is often a difficult process:
I am always very scared of the word disability, almost I don’t like
saying he is disabled because I don’t think he is disabled. I think he
has disabilities which is the same thing, but it just makes it sound so
much worse. People don’t believe you when you say that. They think
you are lying, epilepsy doesn’t seem like a disability sometimes, but it
is it’s a horrible disability. It is all day every day and all night. Billy has
also got memory problem, purely because of seizures purely because
of damage. (Helen, mother of nine year old Billy)
This process is made particularly difficult when they and their child
experience rejection in the local community:
Billy loves people he just wants to be their friend but doesn’t quite
get the social boundaries. He can come across as quite in your face
and that can come across as quite aggressive to some people but he
is not. Bill just wants to hug you and love you but it scares some
people. He doesn’t get invited to parties by friends from school and
he hasn’t done for years and doesn’t go to anyone’s house for tea.
And nearly every day he comes out of school and says can so and so
63
come round for tea and I can see their mother looking at me going:
“please no! Please no!” so I have to make up a hundred and one
excuses all the time about why they can’t come.
I try to keep Bill
busy, so he goes to cubs he goes horse ridding and rugby and
football and film club. (Helen)
Being stared at when in the community is a common experience for
parents of disabled children and this also makes families feel isolated in
their communities:
I just don’t go to the supermarket any more, I just get deliveries. It’s
just so difficult Billy would either be ADHD Billy who would just be
whizzing round the aisle madly and people would stare. Or he would
be the autistic Billy where it would take me half an hour to get down
the tin aisle because he would be putting everything in order and
people would just look!
A few months ago we went into the supermarket and there was a
basket with sugar in it and obviously, people had taken a few and left
it a mess, and Billy was just looking at this basket. And I thought, I
am going to pretend I haven’t seen him but I thought he was going
to explode and so I said quietly “do it!” People were just staring at
him but maybe he could get a job shelf stacking! But God help
anyone who took anything though – he would say ‘don’t touch!”
(Helen, mother of nine year old Billy)
These accounts trouble traditional notions of resilience
64
that emphasise autonomous, economic, social and
physical well-being in spite of adversity. For some carers
living as happier a life as possible was their perspective
on the consequences of living a resilient life. Resilience
might therefore be less about becoming more independent against the
odds but being more respectfully linked into a number of interdependent
relationships that allows the person to thrivexxxviii.
One family saw interdependence as the key to their adult son living a
resilient life using a circle of supportxxxix. This family had found that a circle
of support was a good way of making the lives of people with learning
difficulties better. Circles of support are made up of the family, friends and
supportive workers of a person with a learning difficulty and they come
together to give friendship and support to the person. The aim is that the
circle will help the person do the things they would like to do and to
support in planning for new things in their life. This includes day-to-day
activities in a person’s life, such as going out in the evening, meeting new
people or going shopping but it also includes big things, such as going on
a holiday, finding a job or moving house.
Having a circle of support is why Neil is leading the life he’s living
now [in his own home with support], because we’ve got direct
payments and the independent living fund. We made sure his life
65
was OK… But gradually we are going to step back a little bit and we
feel that the circle round Neil is a big part of enabling us to do that
because me and William are here, but what happens if me and
William aren’t here? We definitely need this circle of support to
understand what is happening, how Neil’s life works so that if we’re
not here, the circle can carry on making Neil’s life work. And also so
that the responsibility is taken off Samantha’s [Neil’s sister] shoulders,
she’s part of the circle and she’s part of what goes on but there’s the
network around there.
And since we’ve had the circle, it’s been a place where everybody
who is a member is comfortable, they don’t turn up all the time, but,
in fact, at the first one, my sister turned up and she was absolutely
gobsmacked that Neil had friends because there was all his friends
there and she was absolutely amazed, embarrassed that she didn’t
know that he had friends. My brother thought that he had to be
qualified to look after Neil. Nobody realised that if they see Neil, he’s
always got a PA with him, so they are not responsible for his care.
They kind of thought we’d turn up, drop Neil at the front door and
walk away, so I think that the circle’s been a good place for all that
stuff to be talked through in a good way.
We’re strong outspoken parents, but the circles facilitator tells us to
shut up, and the circle is giving the staff confidence to make
decisions that maybe they felt they couldn’t because we’re such
strong parents. We realised that we were holding Neil back, we
realised you know that Neil had to live his life now and the circle
makes decisions. (Penny and William, parent of twenty-eight year old
Neil)
Penny and William understood that for Neil to be resilient he needed a
strong network around him and that throughout his life it had been
66
support networks and committed people in his life who had enabled a
young man described by professionals as having ‘profound and multiple
learning disabilties’ to live in his own home and to have a job. Like, Penny
and William, several parents and carers in the study had interesting takes
about the concept and definition of resilience:
Well, it’s a funny word resilience isn’t it? The thing that it
means to me is how do you bounce back, it’s about positivity
and about how do you bounce back and about how are you
supported and about what’s been good. We don’t think about the positive
side of things because we’re are always mixed up you know in
some other kind of disaster or some other fight, but I could
tell you nine hundred thousand issues that have gone wrong
for us and the journeys that we’ve been on and you know we’ve bumped
along the bottom with. But when you’ve asked me how have you managed
to stay as you are and how have you not managed to get dragged down
by it, I’m not sure that I really know, so that is a really interesting one.
(Kirsty, mother of nineteen year old Louise)
Resilience to me is about coping effectively and not being done in. I
am resilient – I think my upbringing enables me and I’ve got a lot of
skills and the attitudes that help and a lot of experience, I’m 44 now
so I’m very old! (Alice, mother of Adam, aged 12)
67
When I think about resilience, I think there is an element of your own
personality, and your own drive, and your own initiative. Sometimes
you picture a dream and we should teach our children to be whole
and to learn and to want to grow and all these lovely things that we
want for ourselves. So I think that carries you right through life. My
child hasn’t asked to be severely disabled and she deserves whatever
I can bring her. If you have to be their voice or their legs, try to find
it in yourself to deliver that. I think that my resilience comes from
being told ‘no’, I won’t have ‘no’ and if I have to have ‘no’ then I have
satisfied myself that ‘no’ is the right answer. So whilst a professional
will say to me “Annie will never see take all those toys out of her
pram there is no point”. I think “how dare you?” That may well be
true but as a parent I am not ready to hear that information. That
maybe right or wrong it doesn’t matter but we are the ones who
have actually got to come to terms with having these children… But
Annie makes us resilient actually, she is our glue and when we don’t
have her anymore or we have to make the decisions of what’s going
to be for her or not, I don’t know…
(Molly, mother of fourteen year old Annie)
Molly touchingly describes how, despite the uncertainty her daughter
Annie faces, it is Annie who makes the family resilient.
Brian and June (parents of Gabby who is in her thirties) told us:
We expected more [than other people did] of Gabby [despite her
diagnosis of Down’s Sydrome] and that in itself gave her resilience.
Parents’ stories reveal complex negotiations with the resources that make
up the network of resilience. The challenges they face can often drain
68
their resources and leave parents and carers feeling they lack ‘resilience’ in
their battles to seek support and services for their children, but,
paradoxically, it seems that for some parents these very same challenges
build resilience. As Molly told us, it is the presence of Annie within the
family that builds its resilience. While this analysis reflects the complexities
of family life, what is clear, as we saw in the section on disabled children, is
that resilient families are crucial to the lives of disabled children, young
people, and adults. Resilient families provide many of the resources that
allow individuals to identify themselves as resilient. Policy and practice
must recognise these interconnections in order to build resilience in the
lives of disabled people.
(5) Resilient young people:
web 2, activism, community
participation and cohesion
69
Key points:
Barriers to communication persist for disabled young people;
Disabled young people are politicised;
Material resources become a key issue;
Disabled young people are engaged in new forms of community
engagement including Web 2.0
Web 2.0 constitutes a new arena for community participation and
belonging
My benefits nightmare? You really wanna know? lol!xl Now I am a
part time student I became eligible for benefits in September. So I
claimed ESA [employment support allowance], housing benefit and
also had to change my student finance into part time from full time. I
don't recommend it. It’s still not quite sorted. I might hopefully cross
fingers get paid my ESA tomorrow... lets hope. The real nightmare for
me has been the communication difficulties I have with using the
phone. It just panics me and I can only do it on a good day (and
means I can't do anything else). At the time I made the claim for ESA,
which you are meant to do over the phone, I went into my local
jobcentre (which is a small one) and reminded them of their duty
under the equality act to provide me with a paper form, which they
reluctantly gave me. I also sent a paper claim to housing benefit, but
it was easier to get that form. I was sent a letter from both housing
and ESA requesting details of my student grant, which I don't have,
70
because student finance, another telephone based system, have also
managed to catastrophically muck my part time application up. It’s
still not sorted. (Lucy, young person)
I had a lot of software already but I got a laptop through disabled
student support which has been amazing because the programmes
work so much better than they did on my old computer. I can take it
to classes too, which I was never allowed to do at school. I also use
a lifescribe pen which is an absolute lifesaver because it records what
you write and what the person is saying – it has been the best thing
ever. (Jim, young person)
I’m moving into supported living and it’s working out ok. Mainly, I’ve
got things transferred into my name, but the difficulty is that my
mam’s had the benefit before, or certain parts of it like the Disability
Living Allowance component. It’s quite difficult for me to say to my
mam: “well actually, you know these are my benefits and I’m going to
start needing them now”. They don’t give you a manual or anything
on how to approach the subject! And the reason she hasn’t been
able to have a full time job is because she’s been caring for me, so it
isn’t a very nice situation for my mam. But I’m twenty-three now and
I didn’t want to wait until I was forty and think ‘well, I didn’t try to live
on my own’.
I think having my own space will be beneficial to me.
(David, young person)
Material Resources
In contrast to children, who did not directly mention money, access to
material resources becomes a key concern for disabled young people as
they navigate a host of transitions – from home to university or work and
71
from informal care in the home to formal care in independent living
environmentsxli. The young people’s stories speak of access to material
resources like benefits, housing and assistive technologies but these are
entangled with relationships and identity as young people move from
family care to independent living. Sadly, David is aware that by exercising
power, control and communication in his own life this impacts negatively
on his mother’s financial resilience as she adjusts to her new
circumstancesxlii. Michael is anxious about what the future may be in terms
of benefits and care:
I just hope I don’t get trapped with lack of benefits or support and I
would no longer be able to be independent or even have the
dignity of being a normal human being… To the service providers I
will have to say this one thing, treat every disabled person as an
individual for one, try not to think in terms of just monetary or
financial value, make sure, this is absolutely imperative, make sure
the quality of care is the same and of the same quality all across the
board, it is not good leasing out services that we depend on for our
very lives.
David’s network reveals his interactions with a host of resources including
the benefits system:
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David is twenty-three.
David describes himself as
having cerebral palsy. He
is a recent graduate. He
currently lives at home but
is about to move into
independent living.
Access to clear and readily available information is key to enabling
disabled people to access the resources needed to create resilience.
Social Justice
Access to resources is closely linked to issues of social justice. Lucy
experiences indirect discrimination in the benefits system that she tackles
through making use of advocacy and demanding accessible materials to
support her application. However, Greg experiences direct discrimination
in terms of accessing medical resourcesxliii as his mother Nancy explained:
73
Greg was refused an operation. They said he would not cope and he
would not understand what was going on and if it was any of the
other children [without a learning disability] [the consultant] would
“operate tomorrow”, that was the phrase he used, but he wouldn’t
operate on Greg. We had to wait two years and travel to London for
the operation.
Abbey, a disabled person in the working age group, who worked as a
disability advisor in a university spoke of the barriers students face:
I spend my days devising personal learning plans for students which
are never read, never acted on. We’re doing a lot of evaluation of the
service at the moment and the most common things that we get
back are PLPs not being read, not being sent places, not being acted
upon. Which makes you wonder why you bother really, sitting in your
little cupboard all day writing personal learning plans that then don’t
get looked at! Common complaints are the lecture notes not being
put on [electronic system] early enough prior to the lecture because
there is still this idea, that if you put you’re lecture notes on-line,
students wont turn up to your lectures. We can point people in the
direction of research that says that that is wrong but there’s still the
perception. (Abbey, disabled person)
Threats to social justice in the lives of disabled young people also provoke
acts of resistance as the young people take power and control in their
lives:
74
I went to the Hardest Hit rally in [city] in October, I’m also
campaigning against disability and benefit related cuts, mainly on
Twitter. I’m also, scarily, thinking about standing as the disabiltiy rep
at the [student]
Union next year. (Lucy, young person)
I’m a big social network user, I found out about this
research from Twitter. I feel it has been a really
useful way of me finding out information - if you’ve
got a question or anything, people, you’ll ask people
and they’ll give you some answers. If you’re behind a keyboard and
able to
voice your opinion that way, it’s much easier than going to a
demonstration. I wouldn’t go because I wouldn’t want to put myself
at that risk. (David, young person)
The impact of social media on the resources and politicisation of (disabled)
young people is often ignored. There is no doubt that social networking
provides new forms of community participationxliv. It has been argued by
political scientists that the use of Web 2.0 technologies such as social
networking, blogs, wikis and file sharing has the potential to connect
activists globallyxlvSadly, the sense of community and support Lucy
experienced through the use of social networks was not always
available to her in the non-virtual world:
Lucy is in her
mid-twenties.
She describes
herself as
having mental
They are jealous of the support I get, and appear to want to work
with disabled people, but not be friends with them. Because of
health
difficulties.
Lucy is
currently a
student and
75
lives with her
cat.
the course I am on, and I am pretty open about my mental health
problems, they know some of the things I have a problem with, but I
think its partly the age difference but I just don’t get on with my
peers on my course. But hey, I put my name forward for student rep,
so they'll have to talk to me :))
Power, control and communication
Disabled young people also explained how taking part in government
initiatives in their local area had given them a voice:
I have also been a member of the Aiming Highxlvi initiative for
disabled young people. The aim was to get young disabled
Mike is
people’s voices heard on important issues. Basically a lot of people
nineteen. He is
in our group weren’t able to conjugate words or articulate their
a college
student. He
thoughts and feelings properly because they had emotional slash
describes
behavioural disorders and it was up to me and my good friend
himself as
[name], to allow their voices to be heard.
having cerebral
We worked on the short break scheme and we managed to get
palsy. Mike
[name] lodge opened as a fully accessible holiday place for
lives with his
disabled people and their families. I opened it myself – it was my
parents.
crowning achievement because we had made this a reality for people.
My name is on the wall of the lodge. It is very difficult for disabled
young people and their families to go on holiday because of all the
equipment they need to take, like a hoist or a commode, but at the
lodge they can just relax.
Jospeh told us that he would like there to be more money available for
communication aids like his and that he thought that the government
could find the money for this:
76
Martin and Adrian also wanted other young people to have support with
their communication. Hayley had been given a communication aid at
sixteen but without the support to learn how to use itxlvii, she was eighteen
before she was able to use it to communicate. She described how she felt
when she was finally able to communicate as ‘beautiful’. Like many young
people with communication impairmentsxlviii, Hayley had her own
communication method that she used at home with her family, but access
to a communication aid was vital to building relationships beyond her
family.
Communication is inextricably linked to social inclusion and this is
illustrated by the fact that Hayley will be moving to a mainstream college
in the next academic year where her wish is to ‘meet new people and try
new things’.
Whereas children in the study talked about being unable to have their say
in reviews at school, the group of young people who use AAC told us that
at college they were consulted about staff appointments and sat on
77
interview panels as well as meeting with the architects to discuss the new
building for the college.
The significance of technology – whether it be AAC devices, iPads or Web
2.0 forums – is that it promotes collective and individual well-being. This
was clearly and consistently articulated by the young people in the study.
However, there is evidence to suggest that issues of power control and
communication and choice are complex in the lives of disabled young
people:
At school we were able to stay over one night a week. The problem
was that the school day was long – it started at quarter to nine and
ended at four fifteen so at the end of the day we were
tired and we just wanted to relax. But we had to do a
Michael is nineteen. He is
sport or an activity of something. And some of the
a college student. He
people there couldn’t talk, they couldn’t do anything
describes himself as
basically and we were forced to play with them, they
having cerebral palsy.
were nice people but it was basically like being in an
Michael lives with his
old care home. In the beginning, when I first went there, we
were
parents.
able to go out to shops or the cinema, but when the new head
teacher came that went. There wasn’t enough money or it was about
health and safety so we couldn’t go …. If ever we raised any issues,
they shot us down. I ended up in the deputy heads office on a
number of occasions for complaining about the poor standard of
food and about there being nothing to play with outside apart from a
football.
78
I said when my parents got power of attorney, because I didn’t know
how to deal with social services because I wasn’t told how to deal
with them, I said in the power of attorney contract that if anything
were to happen to me that would cause severe brain damage or
make me more disabled I would not want to be resuscitated, I find it
terrible that people get resuscitated everywhere even if it is against
their wishes not to be as what they want to be (Michael)
Michael’s reference to a power of attorney refers to a process where
people considered to lack ‘mental capacity’ in accordance with the 2005
Mental Capacity Act, someone else is given the power to make decisions
for them. The Court of Protection makes the final decision in cases where
a person’s capacity is disputedxlix
Disabled young people identified access to education as a key material
resource. Looking back at their education, young people talked about the
different educational setting they had experienced and the different
barriers they faced as well as describing enabling and supportive
environments that enhanced their community participation (involvement
in and responsibility for participating in educational or leisure pursuits) and
sense of community cohesion (a strong sense of belonging):
I didn’t get much help at school because when I was at school I
didn't have any recognisable mental health problems, and it was just
before autism and ADHD etc became more widely recognised so I
was just labelled as naughty and left to get on with it. I kinda realised
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about 6 months before the end of school that if I was going to get
my GCSEs and get on in life then I would have to do it myself, so I
rebelled against the 'naughty' label and taught myself pretty much.
The teachers had given up teaching me. I guess it’s where I've got my
'fighting spirit' from. I’m just out to prove people wrong, that I can
do and I can get this degree. (Lucy, young person)
Jim is nineteen.
I left school at sixteen and took a year out and went to work as a
ranger with an environment centre.
He describes
I was put in charge of
himself as
running a wild life society with kids. I’d always like playing with
having dyslexia.
kids, my mum is a child minder and I’d always had a bit of a thing
He is currently
for nature so it was a great job. They gave me a lot of
a student living
responsibility but after about nine months I decided that I needed
at university.
to go back to college, so I went back to do childcare, learning and
development. And when we were studying psychology I wanted to
understand social constructs better so I thought about going to
university. My tutors were absolutely lovely, really supportive and the
course suited me because there were no tests at the end of it
because I can’t do that one thing – I can’t do tests. (Jim, young
person
But to my amazement a lot of the people on the course seem to
think I’m good at it. I’ve got a reputation for knowing stuff, but that’s
only because I work hard. I do all the reading, I did all the summer
reading when some didn’t even pick up a book. (Jim, young person)
Greg is 17 and lives at [name]. It is a residential special school for
children with autism. He is very happy there. Before getting a place
at the school, Greg spent fifteen months in a residential adult mental
health unit.
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Relationships
Disabled young people told us about the relationships with people that
had touched their lives – tutors who were lovely, people who believed in
them – impacted positively on disabled young people’s sense of identity –
for Jim seeing himself as a successful student, having previously been
labelled ‘the special needs kid’ and for Greg new relationships allowed him
to live happily in a community.
Relationships with family, though changing from childhood, continue to
be important to disabled young people:
I live on my own in a council flat which I have had for 3 years. I have
a big fluffy white cat called Angel, and she’s my carer :) She is
amazing. My Mum lives ten minutes down the road with her husband
of one year, and I also have a sister, who is 2 years older than me
and she lives ten minutes away too! (Lucy, young person)
My family have been a great support to me. I can just go to my dad.
If there was a problem then we would talk about it as a family and
we would work out how to sort it out. My little brother has a hearing
impairment and I support him too. (Asad, young person)
If I feel the world’s out to get me my sister is really good, she
infuriates me enough to get passionate enough to do something
about it – I just have to push on through to get through it. (Jim,
young person)
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It’s been OK finding people to do the direct payment work. I usually
employ people we know, someone my mam knows, perhaps. I need
people who are reliable and when I used a care agency that wasn’t so
good. (David, young person)
Currently my parents are building an annexe for my
grandmother who is going to move in with us. I like
Nan because she gave money for me in trust which
funded my chair and Nan’s always supported me.
I often talk to my Nan, Mum and Dad don’t
necessarily listen. Eventually when Nan goes away
or dies, that annexe will become my house, it will be
connected to the house but it will still remain a
separate house.
I currently have people doing my personal care and
that will continue. (Michael, young person)
A key element in the promotion of resilience appears to relate to the
support of the extended family: a finding that overlaps with what disabled
children told us in section one of the life story analysis. This also suggests
that while families offer support and alliance these same families share
experiences of disablisml. Inevitably, as young people grow older then the
locus of support expands to include friends.
Michael told us about how important his friendships were to him but that
they also brought sadness:
I’m not saying special schools are bad, but they are sad places – a lot
of my friends died while I was there. You saw them being slowly
82
eroded away until they were a shadow of themselves. But the school
was like a family to me, in addition to my biological family. My friend
died from his muscular dystrophy. It was sad because he was a year
ahead of me and when he went into the sixth form I didn’t really see
him so I was looking forward to seeing him when I moved up but
they told us that he had died that he wouldn’t be coming back, of
course we were upset but we weren’t allowed to cry or anything, well
I don’t personally do that sort of thing, but we weren’t allowed to say
anything in case it upset a lot of the younger pupils .
This stuff upper lip attitude around the tragedy of a friend’s death might
be seen as part of a wider societal denial of the realities of impairment.
We know from previous research that disabled people are prevented from
discussing the complexities of impairment and disability because of others’
fears of their own mortality or the precariousness of lifeli. Moreover,
Michael’s experiences raise questions about the levels of bereavement
support for disabled young people in schools. We know that the death of
a disabled child is often treated differently from the death of non-disabled
childrenlii. Sadly, there is sometimes a presumption that for parents the
death of a disabled child offers a relief from the ‘burden’ of care. The
impact of the experience of death on young disabled people’s resilience is
unclear and is an area in which further research is neededliii.
Building new relationships at college, at work
or in the community is a significant change in
83
the lives of young people. Issues of sexuality
and the rights of disabled people to a “good
sex life” have often been given a low priority
within the disability politics and research
and yet they are a key issue for disabled young
people:liv
I’ve done some sort of on line dating, I don’t stick that I’m disabled
on my profile. Sometimes I’ve had times where people have wanted
to meet up with me for coffee and I’ve got to say “oh well, I use
crutches” but sometimes that is difficult for them to take on board. It
shouldn’t matter you know, and the best people you find aren’t
bothered, don’t care and just treat you as equal. But you’ve got to
risk things to get the reward of having the relationship…. (David,
young person)
While navigating new relationships with peers and parentslv are challenges
faced by many young people, some disabled young people also take on
new and complicated relationships as employers or commissioners of
services as David tells us:
The difficulty at university was that I got a lot of support but
sometimes I would have to phone up my Personal Assistant and say I
wasn’t going in – that meant they didn’t get paid. If someone relies
on you for their income, it’s very difficult. (David, young person)
84
Making new relationships is often dependent on having the opportunity to
participate in the community. Disabled young people told us that their
faith communities were important in providing them with a sense of
Asad is
community participation and cohesion. Asad, talked the sense of
seventeen. He
describes himself
community he had with people at the Mosque:
as being deaf.
I also get support form my community, I go to the mosque and
He is a sixth
I’ve got a couple of people there that have got a hearing aid and
form college
student. He lives
they can tell that they’ve learnt and they are going through their
with his parents
situation as well and you can learn from them.
and siblings.
Lucy’s friend from church supported her to use the city buses. However,
disabled young people talked about the barriers to participation they
experienced:
I have used the buses and things but not recently, I tend to use taxis
because that’s easier. I do use the train, I like the train but I used the
train last week, to go to [city] for the day and I was told by the man
at the ticket office thing “oh well you need to book disabled
assistance twenty four hours ago” and I said “well sometimes you
might want to be spontaneous!”. I was told by one man: “oh, you’re
holding the train up, because we have to come and get the ramps
down”. I said: “you know, that’s the wrong attitude to have. You can’t
say that I’m holding the train up when you were supposed to come
and get the ramps down”. (David, young person)
85
I hate travelling to university. It is a big barrier.
However, there are some great ways I get around
this using technology. In [the city] we can track
buses on mobile phones, so it brings up in real
time (using GPS) when my next bus is. I need a
smart phone, which costs me a bit of money, but
it means I can be a bit freer. I have all the bus
stops that I use bookmarked so I can navigate. It
enables me to sometimes do daft things so I can get home by
catching 2 buses instead of one or catching a bus that’s only every
half hour. The buses themselves are such a nightmare with being
reliable it really takes the unpredictability away from the journey. A
combination of my mental health and a bit of claustrophobia means I
can only sit on the single seats at the front, which is normally fine. I
live near the terminus so it’s not that busy. It’s just when the elderly
and people with pushchairs think they have more rights to the seat
than I do, and I have been attacked because of this, even by a bus
driver, even when I showed my disability bus pass. Not only does that
mean that going to uni becomes pointless, a stressful journey can
mean I have to turn around and come back home. (Lucy, young
person)
Problems with accessible transport were identified as a key barrier for all
disabled people throughout the live course:
More than anything it is the issue of accessible transport that does
my head in! A lack of transport holds you back. The tube isn’t
accessible and although I live near an over ground rail station, I have
to book assistance twenty-four hours in advance to get on a train –
nothing is spur of the moment, you always have to plan. And the
86
attitude of some of the staff is just rubbish. If you don’t book ahead,
you get grief from the staff and the fear of getting grief worries me if
I don’t book ahead. I feel like I should say something to them but
that I can’t because I rely on them.
There was one time when I
hadn’t booked assistance in advance and the local station told me
that there would be no staff to help me after 9 o’clock at night but at
10.30 the staff were still there. If there are no staff to assist you, you
sometimes have to catch a later and often a slower train, and so that
really adds to my journey time and, of course, means paying for extra
time for my Personal Assistant too. Transport is one of those daily
things that really wares down your resilience. (Rachael, disabled
person of working age)
Inaccessible environments continue to limit the lives of disabled young
people. For young people, like the group of AAC users we met, who use
large wheelchairs and need access to a ‘Changing Places’lvi toilet to go out
for the day, accessible environments are limited. Large shopping malls and
supermarkets are often the only accessible places.
Bodies and minds
Not surprisingly, disabled young people told us that bodies do matter.
David explained that he could no longer carry his heavy bags to college:
I had another strange experience when I was telling the tutor that my
bag was getting quite heavy and the tutor’s solution was for me to
empty the bag and not bring the books in, but I needed the books in
college! At university, the difference was they gave me my own
87
locker and all I had to bring was my pen and the books would be
there.
However, his story reveals how his body appears as a problem in one
environment and disappears in another when a locker is provided. David
was also clear that his body should not define his sense of identity:
The thing that I always say is the crutches and the disability shouldn’t
define me. I am a person with my own interests and it just so
happens I use crutches to get around.
Jim also refused to accept the way that his body is understood by others:
People say “I’m dyslexic and creative”- it doesn’t look like that to me.
I don’t go along with the idea that there are stereotypical things that
this person does because of their disability, because of their
impairment, it’s really just a part of who they are, a part of their
personality.
Abbey (disabled person of working age) told us that negotiating disabled
identities caused difficulties for disabled students, especially in relation to
accessing resources:
I think the biggest difficulty disabled students face is stigma, huge
stigma. If they would only come forward and disclose their disability
and then they would receive the support that they are entitled to,
everybody’s lives would be so much easier. I think I’m right in saying
that both on the staff and the students’ sides, we have roughly a
seven percent disclosure rate, but it should be closer to twenty.
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The bulk of the work that we do is actually students with learning
difficulties, it always used to be about sixty or seventy percent of our
client group were students with learning difficulties including dyslexia;
the next biggest group, are students with mental health difficulties,
and that’s where the stigma really starts to come in, but it’s actually
more of an issue than you might expect, with students with learning
difficulties as well. They really don’t want to admit to the fact that
they have learning difficulties, in a place of learning. So, we do have
the option for, on the personal learning plans, for us to keep the
disability detail bit confidential, so it will just say confidential. There’s
a surprising number of students where it’s actually mild dyslexia, but
they do not want their lecturers to know that that is their diagnosis.
(Abbey)
Identity
Michael also told us about the complexities of negotiating a disabled
identity:
I really wanted to socialise with ambulant people but the social
services people always put me with people in wheelchairs and my
friend [name] and other people like me don’t like my ambition to be
with ambulant people they find it like I’m staying away from my own
kind.
Another terrible thing is the constant association that we have mental
problems that we are stupid, and I get so angry at that I wish people
would separate mental illness from a physical disability, that is
terrible, I mean all you see on the bloody television is people with
mental illnesses, how physically disabled people get money or things
like that, I know it’s hard, but it’s terrible.
Disabled young people told us what resilience means to them:
89
I think resilience or lack of only comes from experience. And how
people interpret their experience. Its like what Liz Crow [the disabled
artist, activist and academic] said, it can be positive, negative or
neutral. I know that there are many points in my life where I could
have gone with the flow and I think most people would have done,
but I think when you make the choice not to, its when change
happens. I think sometimes disabled people have less choice about
what options they have, and they need to stop and change their
situation. So it’s resilience is forced on disabled people. We just have
to fight more for what we need. (Lucy, young person)
When I first thought about resilience, I thought of it as a very much a
medical thing – to do with physical resilience. But then I thought
about the social model and wondered if you could flip it on its head
– we [disabled people] are resilient to the world and the world is
resilient to us. (Jim, young person)
I think that resilience is just your ability to cope with everyday things
and not being too downbeat. I was with members of the family a few
months ago and there was this woman there who I haven’t seen since
about 1997 when I was at their son’s wedding, and I said “oh well I’ve
just done my degree” and she said, “oh well it’s going to be very
hard to get a job isn’t it?” I thought to myself “well it’s hard for
anyone to get a job”. You’ve just got to keep knocking on the right
doors, not taking no for answer. (David, young person)
The disabled young people in this study tell us that youth is a period of
marked change as they negotiate big transitions such from school to
college or work and into independent living. However, they also
90
encounter a host of smaller transitions in building new relationships with
parents and paid carers as well as their peers and local communities.
Disabled young people face considerable challenges to their material
resilience as they begin to navigate the world of work and the benefits
system and yet, when they experience social injustice they are often able
to take power and control back by resisting disabling attitudes and
practices. These acts of resistance are not without cost – for instance,
battling the transport system on a daily basis wares down resilience. David
told us that he had already learned to choose his battles, that he couldn’t
fight every one. Disabled young people are increasingly aware of how
their bodies are understood by others and yet they refuse to accept other
people’s readings of their bodies in ways that define their identities as
being in some way the ‘problem’ or ‘less than’ their non-disabled peers.
Disabled young people were already aware that they had been ‘forced’ to
be more resilient than other young people and that they would have to
persevere more than their non-disabled peers. However, disabled young
people were clear that the ‘problem’ lay in the attitudes of others rather
than in simply being the inevitable outcome of living with disability. And
while they focused on their personal qualities as being key to their
resilience, their stories of their relationships with family, friends,
practitioners and communities and their resistance to interpretations of
91
their bodies and lives as being ‘lacking’ reveal the networks and
interconnections which allow disabled young people to describe
themselves as resilient
(6) Resilient adults: social
justice, work and the
emergence of the
body/mind
Key points:
Strong relationships with families and communities
Disabled people making positive contribution to families and to
communities
Increased competition for work and jobs
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Fear of changes to work benefits, disability benefits and social care
Increased culture of disablism: reflected in hostile newspaper articles and
‘comedy’ programmes
I’ve worked for the local newspaper for years, and it is a long story,
but basically I was made redundant in the summer. It was a parttime job that doesn’t exist anymore, it wasn’t actually writing articles.
I’m doing so now on a freelance basis. The job I was doing was a
desk job, which was basically sub-editing and the next step up is
page design, which I wasn’t really able to do under pressure due to
coordination problems, so I was left in the position of not being able
to do very much, apart from writing articles - which was not actually
the job I was supposed to be doing. So I’m now doing that (writing
freelance articles) and I’m doing a bit of voluntary work at the
moment, and building up contacts. I’m also doing a PhD. (Jack, a
disabled person with a degenerative impairment)
I think for me as well one of the things that is important to me is to
be needed and at work. Those times when I feel like my work is
making a difference; it’s almost as if I viewed resilience like a fuel that
you put in your body; and it helps keep you going when times aren’t
so great. I can think back and say “I might be having a rubbish day at
work today, but remember how you felt when someone told you
Matilda this is really helpful its really helped me with my work today
and that.” Those kind of memories and thinking hard about that
when things are rough those kind of things are really important I
think (Matilda, disabled person)
I did voluntary work at a disability
charity during school and college.
I got four A levels but I decided not
to go to university and to look for
93
work instead. I went to the job
centre and they wanted me to do
a Level 1 IT qualification, but fortunately
a job came up as a trainee access
auditor and now I work as an
information officer at the charity.
The charity is a good employer – I got my Access to Work support
really quickly. ATW didn’t want to give me but my line manager
fought for it for me. AtW is reviewed every three years, I’m just
waiting for it to be confirmed again and I have to say I feel a little
vulnerable each time. But I need help from a PA with my personal
care, filing, printing information and other information tasks, my PA is
also my driver. Although the AtW PA can do personal care and
feeding, AtW don’t provide cover at lunch time because that is
considered to be the responsibility of social care. If my PA takes me
anywhere for work and has an hour’s down time they said they
wouldn’t pay – even though the PA wouldn’t have time to do any
other paid work in the hour. (Rachael, disabled person)
Material Resources
At a time of high unemployment, austerity measures, economic downtown
and a government agenda to move people off benefits and into work,
while at the same time reducing the amount of government money spent
on social carelvii, access to material resources is a key issue for disabled
people of working age. The material foundations from which it is possible
to bounce back are seriously under threat. It was suggested by
respondents that spoke to us that increased competition for jobs, the high
incidence of unemployed graduates and cultural anxiety about “benefit
94
scroungers”lviii made the reality of work ever more difficult for disabled
people.
As the stories above illustrate, for many disabled adults, work has a huge
impact not only on financial resources, but also on sense of identity as
someone who is valued and makes a contribution to the community. As
Brian and June told us about their daughter Gabby’s job:
It is not just about the money, really, it is about self-respect because
without a job that is lost.
Rachael’s story illustrates the importance of the Access to Work Schemelix
in supporting disabled people in employment. However, disabled people
also told us about the impact of a variety of types of support (or lack of
them) on their work life. Crucially, this included legislation:
I’d be a Community Service Volunteer but about six weeks after my
friends had gone to university, they told me that they couldn’t take
me because of my disability. This was pre-Disability Discrimination
Act, of course. (Abbey)
Abbey’s story is a timely reminder of the importance of protecting disabled
people’s right to work in law and the impact of legislation on the lives of
Abbey is in
disabled people. Despite legislation, disabled people of working age
her early
thirties. She
often face battles within the work place to ensure that ‘reasonable
has the label
adjustments’lx are put in place and maintained:
of spina bifida
A number of the things that she has raised are issues that I thought
had already been dealt with through reasonable adjustment like
and is a
wheelchair
user. She lives
time keeping for example. My recorded start time is 8:15, my hours
alone. She
are 8:15 to 4:15, but I have a reasonable adjustment so that I can
works as a
disabled
95 student
support
officer.
arrive up to 8:30 as long as I then work till 4:30. My manager was
questioning whether I actually stick around until 4:30 because her
own working arrangements mean that she’s not there between 4:00
and 4:30 to physically witness it and I got rather naffed off about it
so apparently there’s going to be another meeting so, I’m joining a
union! ((Abbey, disabled person)
When Abbey finds herself at risk in her work place and forced to engage
with issues of social justice, she takes power and control by joining a
union. Again, access to information is key at each stage of the life
course in order to building resilience in the lives of disabled people.
The impact of collective politicisation on disabled people has long
been recogisedlxi. Yet, this move towards political engagement in
2012 is a direct reflection of increased politicisation in a time of
Jenny is in her
mid forties. She
has a
degenerative
condition. She
lives alone.
Jenny is a
university
recession. Sadly, these politicised entanglements were not always available
lecturer.
as a support to disabled people in the study. Jenny had no support from
the union in her workplace and struggled to access social justice when
she invoked disability legislation:
When I tried to point out it was a disability related absence and there
had to be reasonable adjustments she said “oh well the adjustments
are only reasonable if we think they are and as soon as we think they
are unreasonable then we can dismiss you”. I gave her the leaflet
explaining what the symptoms were and she didn’t even look at it
she put it straight into a folder. (Jenny, disabled person with a
degenerative condition)
Chris told us that he felt he had earned the right to work flexibly in his
work place, because people knew that he
96
delivered and did his job well, but
that the flexibility his current job
offered also meant that he would
be hesitant about taking a risk and
applying for a different job. This
view was shared by Abbey, who
also worried that moving jobs
would mean re-negotiating
entitlement to support. In this sense the work communities that disabled
people feel they are able to participate in are limited by the commitment
and flexibility of otherslxii.
Disabled people in work experience high degrees of uncertainty as they
fear that some time in the future their impairment, or the failure of others
to accommodate their bodies or impairment, will mean that they may no
longer be able to worklxiii:
I know I’ve been ill in the past, so I’ve got to have that contingency
[savings] there. We are moving into a new building shortly and I’ve
got real worries about access issues. Technically because of my spina
bifida, I’m doubly incontinent but I manage it to the point where I
rarely have accidents but I need to be able to get to the toilet very
quickly. Fortunately both my managers are female so I’ve been able
to be quite open about it. I’ve been in this job eight years and
they’ve been aware of this. But now I face being in an office where I
have to get through about five heavy fire doors and travel about
thirty metres to the nearest toilet, which is going to be outside the
97
door to a lecture theatre that holds about two hundred and fifty
students, and it’s the only toilet accessible from our office. The
writing’s on the wall. I know that that toilet is going to be abused, I
know that that toilet is going to be full when I need to use it. Abbey
(disabled person)
Uncertainty is, perhaps, a double-edged sword, as it can lead to worry
about what the future may bring. However, for some people, uncertainty
is liberating; it allows people to move beyond what is expected and to
challenge norms. Uncertainty, then, both creates opportunities and
barriers to environments where resilience can emerge.
Despite the successes of the disabled people’s movements, and the impact
of legislation, Abbey’s story reveals that physical access continues to be a
key block to resilience in the lives of disabled people.
Jenny, who describes herself as having a degenerative condition, was
anticipating change and said that she was paying off her mortgage faster
than she might otherwise have done, just in case she couldn’t continue to
work in the future. Disabled people are faced with re-negotiating working
environments and practices and the accompanying potential for financial
insecurity this brings. Ellie showed us the numerous adaptations in her
work place including two chairs, a footrest and a book holder but in the
same workplace, another employee, Jenny, told us:
My division head has made great efforts for me – she got me my
Dragon software but the only way she did that was to buy it on her
98
own credit card and claim it back – that way it came in days instead
of months. I am still waiting for a footrest and monitor.
Access to resources, even within the same place of work, can vary and, as
Jenny’s story reveals, this often depends on good relationships with
individual colleagues.
Relationships with colleagues clearly had a big impact on how people
were supported in work:
It was very difficult getting back to work as well because people’s
understandings and perceptions are very tricky to deal with. It took
people a year to realise that there was a genuine problem…. I think
people find that hard to understand when they see that you suffer
from muscle aches or whatever they think:“ oh, just have a hot bath
and you will be alright”, but it doesn’t work like that. I think because
on the good days I can do loads, then they can’t understand there
might be another day when I can’t get anything done. (Jenny)
The absence of a ‘visibly different’ body caused difficulties for disabled
people who were not seen to conform to stereotypical norms of what their
colleagues felt a disabled person should look likelxiv:
I’ve often found which is not having a very visible disability is quite
interesting because on one level it can be advantageous but on many
levels it can be disadvantageous because of the way in which people
respond to you is different. For instance, sometimes I have people
saying things like “oh you know, you are a big strong guy, you can
do this” and that’s difficult because part of me wants to be that big
strong guy and move the chair and carry the thing over there. but on
the other hand I don’t want to go through a long explanation of why
it would be difficult for me.
I’m still struggling with some of those
elements of thinking and I want to be a very able person with a
99
disability and with that comes trying to do things that I probably
shouldn’t do but on the same token I kind of feel and I don’t expect
people to know. I don’t want to embarrass people by saying “oh,
actually I can’t do that” and then they feel really awkward and
uncomfortable. (Chris, disabled person)
There is just this overall perception that people with depression are
supposed to be some cowering wreck in the corner crying and that I
am not. Or they have this kind of stigma attached to a mental health
condition and they don’t see me as a lunatic, coming out of an
asylum or something. They have this vision of what should be a
person with clinical depression should be and I don’t fit it. So when I
tell them they say “really?!” (Jill, disabled person)
Abbey also explained the difficulties she faced in navigating the
expectations of others in terms of hidden disability:
Obviously, my colleagues know I am a wheelchair user!! And I have
told them about my mental health issues too... The irony is being a
wheelchair user causes the least problems. The hydrocephalus and
the depression account for ninety nine percent of my problems. I’m
either feeling down about something, or because of the
hydrocephalus I haven’t got the attention span or the concentration,
or the memory, so I run myself ragged on a regular basis, getting
very frustrated.
Bodies and Minds
For Jenny, being in (hidden) pain had a bit impact on her relationships
with her colleagues and on her well-being:
The pain is there all the time it’s very difficult to explain to people
what that does to you. I don’t think people realise how much it can
affect concentration. I could control it with stronger pain medication
but then I couldn’t function, I certainly couldn’t do this job anymore.
100
So I have to strike a balance with myself as to how much pain I can
put up with and still be able to do what I’m doing. And you know
that’s very tricky.
However, while living with pain clearly had a significant impact on the way
Jenny lives her life, she also talked about access to pain management and
support from her General Practitioner as a key material resource. Disabled
people’s experiences of work were varied and challenge assumptions about
what work might mean in the lives of disabled people. Just as parents of
disabled children found themselves ‘challenging the norms’ in relation to
their children’s developing bodies and minds, disabled people also
challenged normative notions of work as Neil’s story reveals:
Neil has the label of PMLD. His parents were told
that they should leave him in an institution
because he would ‘destroy their marriage’. His
mother who was six months pregnant at the
time was offered a termination so that she did
not bring another child ‘like that’ into the world.
Neil is 28, he lives in his own home with support
from carers and he has a job. For one hour each
day, he takes the post form a local business to
the post office. He has just learnt to carry the
parcels by himself.
101
It is also worth noting that as well as disabled people being in
employment, many disabled people are themselves employers, managing
their own personal budgets and supervising stafflxv.
For disabled people of working age and in receipt of benefits and for
those in receipt of social care, uncertainty is also a key issue, as the impact
of the current government changes to the benefit and care system begin
to unfoldlxvi:
I’m on DLA, a lifetime award apparently. Since 1992 I think it was, it
was really embarrassing, but I passed my driving test, I bought a car, I
crashed it, turned it upside down, and then my dad found about this
DLA and the Motability scheme and him and my mum pestered me
to apply for it. I told them that I didn’t want to be seen as disabled
and I wanted to keep out of the benefits system, so I don’t want
anything to do with it. However, they went on about it so much I
eventually applied just to shut them up and hoping I’d be turned
down. But they gave it to me for life.
After leaving work I went on job seekers allowance and the DLA
[Disability Living Allowance} basically told me I should go onto what
used to be incapacity benefit and I’ve applied for that, sent off the
form, and I haven’t heard back yet. I have to go through ATOS [work
capability assessment] testing for my ESA {Employment Support
Allowance], the disability employment adviser is convinced I can get
that but she is leaving her job and I don’t know what’s going to
happen. She says that I’m a straightforward case, whether they’ll
actually pay it or not remains to be seen, I’ll have to see what
happens in terms of the allowance, my chances of a job are pretty
slim at the moment. (Jim, disabled person with a degenerative
condition)
102
Power, control and communication
Jim’s story reveals a loss of power and control in his life as he awaits the
verdict of the ATOS assessor. Afia also describes the drain on her resilience
that claiming for benefits caused her:
I receive some benefits. It is quite depressing really, I had to fill in a
long form for as part of the assessment, it is quite a difficult process
physically and emotionally. The parts on social, physical and
communication difficulties were hard to fill in – I got depressed and
almost stopped filling it in. But if they do an assessment they are
going to get the information anyway so I carried on. My aim is to
get a job and to become self-sufficient.
Rachael told us that she was aware of the impact of changes to the care
system:
I have a PA at home to do social care – that package is reviewed
every year and I’ve just had a review and the care levels have stayed
the same. My local authority is trying to cut down on the social care
budget, so it helps that I work for a disability charity and that I sit
between the advocacy and self-directed support teams – I don’t think
they dare take any money off me. The benefits team have been
inundated with people contacting them about the new Work
Capabilities Assessment – in our local area, there is a 70-80% success
rate for appeals, so that shows that the assessment isn’t working.
103
While Brian and June (parents) were hopeful that their daughter would not
be affected by the changes in government policy, they worried for the
people they worked with at a charity, whom they feared were ‘at risk’ from
the proposed changes:
We think that [our daughter] will be OK even with all the changes,
but to be honest we are more worried about the people that have
had more of a socially deprived upbringing -
homelessness and
drugs, alcohol abuse and are unable to manage their own lives and
have gone down a number of wrong roads, a number of times. They
may have a degree of learning difficulty and they have a mental
health issue but these are the things that I don’t know whether the
assessors [ATOS] will be able to pick up on those kind of things.
That’s what worries me. To be honest it’s a case of the assessors have
set out to fail as many as possible. They [government] just haven’t
got a clue what they are doing to people. We have got people with
obvious mental health issues and the assessment is just another thing
for them to cope with. People are asking questions now, because
they know of the changes, and they don’t know what will happen.
They are asking ‘will we lose our home?’
Relationships
As well as working with assessors, disabled people have to manage
relationships with a variety of professionals in the context of their day-today care. Relationships with Personal Assistants, in particular, are often
complex:
104
I pay for my social care with direct payments. I love being in control
but it is quite daunting. I’ve been employing PAs for three years
now. It is quite difficult when you are managing a disciplinary
procedure for someone who wipes your bum and does intimate care
for you. It is very odd when your employee knows so much about
you. (Rachael, disabled person)
Geoff felt that the levels of training for personal assistants were
Geoff is in his early
low:
fifties. He has a
You need a professional care service working to minimum
physical impairment
standards. The proposal that everyone should have an NVQ
and is an amputee.
Level 2 qualification has gone by the board. A national
He lives with his
register of care workers has gone by the board. Until you
wife. Geoff works
decide that you want a professional service and treat people
with people with
with disabilities with the respect and dignity they require,
the label of learning
things will remain the same.
disability.
At the same time as disabled people are negotiating relationships, benefits
system and social care provision, disabled people often find themselves
fighting for medical resources:
Currently, I’m fighting for [drug] that I want to help with my walking.
There is current information on the MS website, they send me the
newsletter, and so now this is my battle. I made sure my GP was well
aware of the drug when it was available as of May last year but it is
licenced on condition that a neurologist or somebody specialised in
the field of MS assesses my ability to walk on this relevant scale. So I
said to the GP and the neurologist: “ok, get your finger out.” I know
exactly what the form is, this is the work that I did for six years in
clinical trial, it’s not complicated, just do it, and then I expected to be
assessed but you see the NHS didn’t want to get its act together. I
have been through specialists and different PCTs and I’m fed up. So
basically I got assessed privately by this neurologist, Dr [name], paid
105
Emma is in her mid-forties.
for it, because I had no choice and he said: “I’ll see
She has Multiple Sclerosis.
you on the NHS” and so and saw him and I said
She lives alone. Until recently,
“what about the drug, keep me in the picture, tell
Emma was a research
me where you’re up to?” (Emma, disabled person).
academic but currently she is
not in work.
The battle for a drug represents yet another struggle for material
resources, alongside the battle for social care and for support for
employment just as we saw for parents of disabled children, constant
battling is a key ‘at risk’ factor for resilience.
Identity
Navigating the health, social care and benefits system clearly has an
impact on identity:
I don’t claim disability benefits, I know I should do it but … the thing is,
claiming benefits is kind of an admission, I am still trying to fight shy
of saying “yes, I am definitely disabled it’s never going to get better”. I
have decided that I really should get my concessionary bus pass. It
would be useful not having to have the right change. So that’s kind of
the first step to admitting it really, that there is no going back (Jenny,
disabled person).
I am very conscious of my academic achievements and I refuse to let
go, and so add all those things together and, I’m not being a pain in
the arse exactly but I’m not going to shut up and be quiet (Emma,
disabled person).
Our findings suggest that a positive disabled identity is not necessarily
viewed as a precursor for developing a resilient identity. The question of a
106
“disabled” identity was troublesome for Jenny, whose condition is changing
over time. Abbey embraced her disabled identity as a political identity:
I’m Abbey. I’m thirty-two and I have spina bifida
and hydrocephalus – to get the medical model
definitions out of the way first. But where I’m
coming from it is a disability identity thing – us
against the world. (Abbey, disabled person)
Chris described disability as a politicised identity pointing to the
importance of the social model of disability in disabled people’s lives.
However, Chris described how identifying himself as a disabled person was,
in effect, taken out of his hands:
My professional body put it do me ‘do you feel that you are able to
practice as you are? And I felt at the time, I’d I had moved at that
stage into mental health and a lot of my work at that stage was more
psychotherapeutic work so that wasn’t really affected by it at all, but I
used to be a more hands on physical nurse on wards and I felt that
there was no way would I be able to do that any more. But the
move into advisory and therapeutic work was more of a development
of my role so I was able to make that move without thinking about
my disability. One of the things that I have an issue with, like the
[professional body] is I think that they take a little bit of a tick box
approach. They say “yes, we’re are inclusive, we do support disabled
members of staff.” But they don’t actually clearly guide you, you’re
expected in many ways to make a decision yourself, or that decision
being made by your manager, who then is in an uncomfortable
position around looking at your capability as a worker, are you fit to
practice? That is a big decision, it’s a big job and they need to be
able to find ways to support people. I think it’s left to the individual
a bit too much.
107
Yet, Chris explained how disability was often wrongly seen as the ‘master’
identity status of a person:
I think one of the things that health care services struggle with is the
idea that you can be a disabled person and a carer. I am a carer who
has a disability and I think that that happens much more often than is
recognized. When I was younger I was a carer for my grandma, but I
would of never identified as a carer. I would have identified as a
grandson who was at home and out of work at the time and my
grandma was unwell and I was caring for her.
Social Justice
As Ellie explained, defining oneself as ‘disabled’ can have important
consequences for access to resources and social justice:
I am also the [union] disabled members officer. I have got to call a
meeting every year to be voted in. I call a meeting and nobody turns
up because people don’t like to be seen as disabled - even though
sometimes I am asked to help people and they are disabled. But they
won’t let me make it known that they are disabled so it makes it
difficult - you can’t help anybody unless they freely admit “yes, I am
disabled”. (Ellie, disabled person)
Ellie’s story reveals the interconnections of resources that make up
resilience:
108
The point at which a person with a degenerative impairment identifiies as
a disabled person was also a key issue:
So you have gone from being a normal person and then you had this
diagnosis and at what point did you think I could join – I don’t know
– Join the disabled staff forum at what point did I make that
connection that Iam a disabled person? (Ellie, disabled person)
“Disclosure’ of disability is a fraught issue for some disabled people:
My job is about judgement and the minute people start to question
my judgement, I don’t think I’d be credible any more. I have worked
Ellie is in her
late fifties.
really hard to get my head round taking my medication [for
Ellie has a
depression]. I have got to work in this way. I have got to do things
degenerative
in my home life to keep myself on the straight and narrow, and I
neuromuscular
actually think I am quite good at my job. I think I make good
impairment.
judgments but if somebody questions that I am not sure where I
She lives with
would be in my career and I am not sure where I would be as a
her adult son.
person. I think I would be really hurt.
If I were to give advice to others, it’s a really, really difficult one,
because it very much depends on who you are working with and
what kind of environment you are working in. Part of me would want
to say “don’t say anything”. But I have also been a manager and I
have managed people with depression and actually it is amazing how
109
Ellie is a
chemist.
far a little bit of understanding goes. You know I had one of my
members of staff who she did go off with depression but just prior to
her going off she needed just moral support really. I was really glad
that I could do that for her and she actually did come back and say
that she felt very supported and I was glad that she had. So I feel a
bit of a hypocrite I feel like a hypocrite a lot of the time, because I
am in some ways because I will sit here and tell everybody else to
disclose but I wont [disclose my mental health issues]. Jill (disabled
person)
However, Emma believed that no matter whether or not a person is
disabled the most important thing was:
It’s a positive mental attitude that is where it’s at - let go of the
grievance and choose the miracles (Emma, disabled person)
Bodies and Minds
In her role as disabled student support advisor, Abbey was very aware of
the complex relationships people have with a ‘disabled identity’:
I think the biggest difficulty disabled students face is stigma, huge
stigma. If they would only come forward and disclose their disability
and then they would receive the support that they are entitled to,
everybody’s lives would be so much easier. I think I’m right in saying
that both on the staff and the students’ sides, we have roughly a
seven percent disclosure rate, but it should be closer to twenty. . I’m
aware that there was some research done in the days of the Disability
Rights Commission that said that about fifty percent of disabled
people didn’t actually realise they were disabled or could be
considered. So let’s not say the word disability, let’s actually be
explicit about it and say ‘health conditions’, ‘mental health difficulties’
and all the rest of itlxvii.
110
Jim told us:
Then in my early thirties I actually joined a disability organisation
which to me was part of coming to terms with being disabled. I’ve
actually got disabled friends now but they’re not friends because they
are disabled, they are my friends ‘cos they’re my friends.
And Matlida told us
You can dress disability up any way you like it but it boils down to
something in your body that doesn’t work the way that it is designed
to work. I don’t see it as something wrong with me but there is a lack
and I think that does affect your ability to bounce back.
For Matilda the presence of bodily difference was seen as a ‘lack’ that
impacted on her ability to be resilient. And Ellie refused to use a
wheelchair that she saw as a marker of disability:
I know I am going to get worse, I’ll have the cage put in which will
make me a bit less mobile than I am now, but I don’t want to end up
in a wheelchair – I will muddle through.
And yet for other disabled people it was the way that their bodies were
perceived by others, rather than how they experienced or described them
themselves, that seemed to impact on resilience:
I had a social work assessment three
or four years ago, the social worker
started it off but it was never
completed it because she went on
holiday and the woman that came
after her said ‘oh, you can stand up’
so I was left to my own devices
(Emma, disabled person with a degenerative condition)
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Young disabled people told us about their developing relationships with
partners and their changing relationships with informal and formal carers,
and disabled people of working age also talked about their personal
relationships. Geoff told us that his wife was his ‘mainstay and support’.
Mary is in
Mary also told us about support from a close friend:
We’ve always been friends and that just shows what a lovely person
he is because he’s always there when I need him. I’ve just had a
failed relationship, well, I’ve had several, because as I say, I’ve got a
heart and I can love and I can fall in love and I have done a couple
of times and I’ve made mistakes. But in the eleven years that I’ve
been here, he has always been there for me when I fall apart. He’s
the one who picks the pieces up and he’s actually taking me out
tonight, him and his carer, we’re going out for a meal. Tonight I will
do myself up to the nines and go out there and show the world that I
can cope with what’s going on! I’ll get by with a little help from my
friends, I’ve got a lot of friends, I’ve got a lot of things going for me.
I’m not one of those people who is going to sit there and go “I’m in
a wheelchair, the worlds against me, nobody cares, I’m lonely I’m
bored, I’m this I’m that”. I love life and I will live it to the absolute
maximum. (Mary, disabled person)
I wonder what connections there are between feeling resilient and
feeling like you’re not keeping up with your peer group because
that’s when I struggle with. I feel very left behind in terms of
relationships, having children or not having had a lot of relationships,
not having children, not feeling a proper grown up. And I will be very
interested to see when you talk to other disabled people what they
say. How much having a full participatory life makes a difference in
helping you be resilient? Matilda (disabled person)
112
her mid
forties. She
has the label
of cerebral
palsy. She
lives alone.
She is a
voluntary
worker.
There are times when I just totally lose my nerve. I think I’m always
self-conscious but sometimes I come across as unself-conscious. But
then sometimes I am overly self-conscious. If I meet somebody that I
fancy it’s horrifying. There was someone recently and I kept noticing
her, and every time she went past, I’d sort of really obviously stare at
her and she started giving me dirty looks back. In the end I plucked
up courage to speak to her to break the ice, so we say hello to each
other now. I was so obviously staring at her, I’m really pathetic like
that. I think being disabled it’s hard to actually break the ice like that
and start a conversation. I’ve no chance there whatsoever anyway. Jim
(disabled person)
It is also difficult to think about asking someone to share your life
with you in a more intimate and meaningful ways. There is just this
huge extra burden that comes along with who I am and then that
sort of hinders the imagination of what you want to do. Beatrice
(disabled person)
Relationships
When disabled people talked about finding a partner and building a
relationship the issue of disability was ever present, although the degree to
which the presence of impairment impacted on making relationships or
sustaining them was unclearlxviii. Mary had built relationships through her
membership of a disabled sports club and Afia had found her fiancé via
the internet, but Matilda felt that being a disabled person had been a
barrier to making intimate relationships and Jim also felt that his
impairment meant that it was hard to break the ice. Some disability
researchers have refer to this phenomenon as psychoemotional disablism:
113
where the difficulties of living in a disabling world may be felt
psychologically.lxix
The relationships between disabled people and their partners also faced
challenges that they described as being related to the effects of
impairments. Geoff’s wife was his mainstay, but Geoff described his upset
at having to watch his wife struggle with the shopping while he could not
help her. Chris and his wife Cate also had to negotiate disability in their
decision making about having a family:
The big worry for me was Cate at the time because we’d just get
together. I thought this is a genetic, we had to have genetic
counselling about children. But she just didn’t let it worry her at all.
At one point, I did think “should I have children?” But I think if you’ve
got the right mechanisms in place you can get over most things. I
must say I’ve change my thinking a lot after having Summer and even
more and having met children through Summer’s school. We had the
usual tests during pregnancy, screening for Down’s Syndrome. We
were talking the other day “what would we have done if it came back
positive?” It’s a difficult one and I don’t judge anybody about what
their decisions are, I can only judge myself. I just think you know you
take a risk with kids, they can be perfectly healthy and then it comes
six years down the line ten years down the line, I’ve known people
and their kids got leukaemia, so you don’t not have a kid because
you’re worried.
Chris
Power, control and communication
114
Beatrice told us that the effects of her impairments had had a massive
impact on her sense of self and power and control in making decisions
about her life:
In 2008, shortly after both of my strokes, I was on massive blood
thinners, they wanted to take me off the birth control pill because it
increases the likelihood of clotting especially over the age of thirty.
So I decided with my cardiologist to get a tubal ligation. And it was
very much a case of “let’s just do this”. The problem was that I was
on the blood thinners. I had a massive internal hemorrhage from
ovulating and I couldn’t be on the birth control pill once I was off the
blood thinners. So I decided and went ahead with the tubal ligation
and it was very bizarre for me. I had been saying for a long time I
can’t have children. It not ideal the condition of my heart, your
circulation increases forty percent, and just the strain and your heart,
it is just a mess to be pregnant. I really wasn’t prepared at all for the
psychological impact of actually getting the surgery done and it was
very intense. It is funny because I never wanted children of my
own…but what happened made me start thinking, I finally had admit
that there were certain things that I don’t get to decide for myself.
And that those decisions are made for me externally and that has
been incredibly difficult. It’s not even necessarily the exact decisions,
like not having children. It’s just that that wasn’t a decision I got to
make.
Beatrice also said that her impairment changed other aspects
of her identity, for example, the sense of being a young
woman:
Beatrice is in her early
thirties. She has a
congenital heart
condition and was given
There is that element being young that does not exist for
six months to live five
me. I mean every now and then I am like, screw it! I am
years ago. Originally
from the United States,
Beatrice lives alone and
115
is studying for a masters
qualification at university.
going out go with my friends, stay out until four in the morning. Then
I am ruined for five or six days, just completely wrecked
Resilience, to some extents, appears to reside in the varied ways in which
people engage with impairment effects; that is the experience of
impairments as they emerge in a social worldlxx.
For disabled people, and particularly those living alone, friendships were
often the greatest support to living resilient lives as Jenny told us:
I live on my own, I am divorced, but the neighbours are great. One of
my friends is nearby and has got a spare key. And a few of the
neighbours know my friend, so if they see the curtains drawn all day
they will say to him “is she okay?” and he will come, or his wife will
come, and they will check that I am OK. When it was snowing last
Christmas my neighbour came and cleaned the path for me. So the
neighbours are great that has been wonderful. I’m a member of a
fibromyalgia support group - there were about twelve of us. I just
have to pick up the phone and I can talk to them. So that’s really
good. But I don’t go out anymore in the evenings so once I get home
it’s very much on my own.
Jenny
Abbey also described the important role her friends played in her life:
I have very good friends. I have a colleague who is also disabled and
she’s very good, she’s almost old enough to be my mum and will sort
of step into that breach occasionally and will go; “right, you’re
coming home with me, I’m cooking your tea, and you can sit an
moan at me”. So I have an informal support network.
Family also continued to play very supportive roles:
116
For me personally, it has often been familial support or friend support
that’s kept me going. There are times when I feel that I haven’t been
particularly resilient and I have just given up.
Matilda
However, Matilda felt she needed to be careful not to rely too heavily on
her family:
Matilda is in her early
I will lean a lot on my family but I have to be careful not to
thirties. She has the
unload too much on them. As I have got older I’ve learnt to
label of
write things down or seek some professional help or talk to
hydrocephalus and
other friends.
I’ve learnt not to focus on one particular
person it’s important to kind of like have a range of people
and also to be kind of reciprocal in that you take help from
someone to offer it
Matilda
mental health issues.
She lives alone.
Matilda works for a
disability
organization.
The extent to which disability plays its part in shaping people’s
relationships was also a key issue for disabled people.
If you don’t expect to be included, you don’t push yourself to
become included. If you expect to be on the sidelines and you
expect to be the wallflower and therefore and you are a self-fulfilling
prophecy.
Matlida
I don’t think I’m particularly brave but you can’t rest on your laurels.
A lot of people see me as strong and stuff like that although I don’t
really see how. But life if you don’t try anything new gets boring.
When I started doing the PhD I thought I’m totally out of my depth
here but then I thought I was going to go for it anyway, you have to
do things that are risky whether you think they are brave or stupid, it
doesn’t matter whatsoever.
117
Jim
Community
We have already described the threats to resilience in the work place and
arising from interactions with the health, benefits and social care system,
however, disabled people also told us about direct threats to their
resilience as a result of their interaction and participation in their
communities. Sadly, threats to well-being were also evident in families:
My parents got a bit of a shock when I appeared nine months and
two weeks into their marriage. They’d had all the tests and I’d
escaped them all, because my mum’s been very clear that she
probably would have had a termination. She was a primary school
teacher and she’s not forgiven me because she had to give up work
when I was born. She would have gone back, and as the story goes,
she was in line for a deputy headship and so, ever since, I’ve been in
trouble, I think she’s possibly forgiven me now.
Abbey
However, it was in public places that disabled people experienced direct
forms of discrimination and harassment:
Other people, they don’t get it … I’ll give you an example. Last year I
went to my sister’s and my back had gone totally and I could hardy
move so she actually got a wheelchair for a tenner from this charity
shop, we went to this café in this little resort called [resort]. I was in
the wheelchair, all the staff were staring at us and she really noticed
this and kept saying: “They’re all staring at us.” I was replying: “So
what?” I’m used to it and she wasn’t. You have to get used to it. You
have a lot of resilience to actually cope with it.
Jim
118
I think some people are genuinely nice and some people like to make
a big show of it, like “Hey everyone I’m helping this disabled person,
look at me!” That really drives me mad, when people are being
completely, “Hey I’m helping!” That’s when I do lose my temper,
although I do try to give people chances. At Tesco up the road, the
Big Issue seller was like that. He’d actually say things to other
shoppers like: “I really like helping disabled people” - that was really
condescending for me. I doubt if he’d liked it if I’d bought one of his
magazines off him then started telling people going past that I really
like helping homeless people.
One of the most embarrassing things was, I was in a shop, in the
queue and there was somebody walked in who I was at school but I
don’t know particularly well. He handed me a fiver and walked out of
the shop. I’m not that much of a charity case but I could see
everyone in the queue wondering what was going on there. Another
occasion, I was in London I stopped someone to ask for directions,
and before I had the chance to actually say anything he went :“I’m
not giving you any fucking money.” I just thought, this jacket cost
more than your house pal, he thought I was a beggar or something.
Jim (disabled person)
There have been numerous occasions when I’ve been verbally
ridiculed by adult men, I’ve been pushed over. I am aware of it every
time I go out – people talk about the fear of going our and for
people who are less physically able they can’t withstand that kind of
abuse.
Geoff (disabled person)
These experiences of psychoemotional disablism – that is the dishonouring
of the identities of disabled people – can have huge potentially
disempowering effects upon disabled people. Too often these accounts of
everyday, mundane experiences of disablism are ignored by service
119
providers, researchers and policy makerslxxi. Such encounters risk making
disabled people view themselves in deficient and lacking wayslxxii.
Geoff felt that discrimination and harassment had ‘got worse
recently’lxxiiilxxiv. He saw the causes for this as both cultural and political:
People ask my partner ‘does he take sugar?’ People think it is folk
law but it happens to me. It is doing ordinary every-day activities,
but if you challenged it you would spend all day doing it. From Ricky
Gervais’ ridiculous and prejudiced remark [about the use of the word
mong] which he tried to justify. I’d like to see him tell that joke to
the person I know who was about to start work and went out for a
drink with his mates the weekend before to celebrate and was
attacked in town and called a ‘moron’ and told he should be taken
off to hospital. He ended up having a breakdown and nearly being
sectioned. He is now agraphobic. So is moron or mong alright for
Gervais to use? It is like when Little Britain was on and people would
wind down the car window and shout ‘want one!’ at me.
People assume you are sponging off the system. If I wear my
prosthetic leg and park in a disabled bay, you can see people looking
at you. If I go round ASDA in my scruffs, you can see people look at
me as if I have the life of riley. People are threatened in the climate
we are in at the moment. People are being encouraged to look on
minority groups less favourably – asylum seekers, social migrants,
single mothers, people on benefits are all being high lighted by
reforms in the social care and benefit system.
Just this week I saw a news item about a woman caught claiming DLA
and she was sliding down a slide on holiday. It reads as if people are
claiming when the don’t need it. If I saw my neighbour walking down
the shops, but they might spend the week in bed afterwards. You
can’t evidence the amount of effort a disabled person and the unpaid
120
network around them put in. Families and partners give emotional
support that can’t be quantified.
In the current political context, disabled people are regularly depicted as
benefit scroungers and stories of fraudulent disability claims make the
front pages of newspapers. Indeed, Inclusion London
lxxv
found that the
media coverage describing disabled people in positive terms had fallen,
whereas there was an increase in the number of articles focusing on
disability benefit fraud.
Beatrice warned that such stories are often more complex than they first
appear: ‘[y]ou don’t always know what’s going on with people’ simply by
looking at them. Beatrice was called the ‘lazy American’ for taking the life
by her student peers who were unaware of her heart condition.
She said:
I ask myself: ‘Okay why do I feel awkward talking about [my
condition]?” Or “what kind of guilt is associated with what is really
going on here?” And so I feel that in order to alleviate that kind of
shame attached with disability, it is a good idea to just be very open
about it. So I definitely have a conscious desire to raise awareness
about invisible disabilities because really from looking at me you
cannot tell at all. I’m like one-eighty pounds, know I am very healthy
looking and it’s like I am a picture of health you know. I mean there
are days when I am totally grey you know but nothing a little makeup
can’t fix!
121
Given disabled people’s experiences of exclusion and discrimination, it is
not surprising, perhaps, that this had an impact on them in terms of their
mental health:
One of the things I found quite difficult was that, quite naturally, I got
depressed.
But
in
the
end
the
GP
talked
me
into
taking
antidepressants. They have helped, I haven’t come off them but I
haven’t gone up a dose either. It’s just the lowest dose, but that really
helped. It was a bit of a struggle at first because I didn’t want to
admit that I needed them. Oh and with all the stuff about Garry
Speed recently as well with depression, it’s not something I want to
admit to people.
Jenny
I also have a diagnosis of depression. I was born with the other
diagnoses, but my depression is acquired although there is a link
between hydrocephalus and depression.
Abbey
There are times when I wish I was a little bit tougher - people will say
“well just cheer up”. Well I wish I could. I would love to. But the funny
thing is that my default personality is actually a very chirpy positive
one. The depressed me, even when I’m really down, there is a little bit
of me that is still a little chirpiness left and it never goes away
entirely. I just hide in bed and don’t talk to anybody when I’m not
working.
Matilda
There are times when it is all too much and you close down. You
phone in sick and close down for two days. I don’t have huge
periods of depression now but I’ve had them in the past. There are
times when you need to back off and stay in your own four walls
where it is safe.
Geoff
122
These experiences of discrimination clearly threaten to create internalised
oppression: where disabled people risk injuring themselves through
internalising the disabling views of wider societylxxvi. Mental health issues
are often directly linked to daily encounters with a disabling world than
can get, as Geoff puts it. ‘too much’, placing people ‘at risk’.
For Emma, her experience of depression was also linked to the difficult
question of the extent to which disabled people should have power and
control over decisions at end of life.
Keeping my sense of humour is dependent on my anti-depressants,
don’t overlook the anti-depressant because as much as I love
comedy, political satire, laughing at myself isn’t quite what I can do.
I’ve got to keep a bit more of a realistic outlook, so I said to my
neurologist: “do not resuscitate, I want it on my medical records”.
Yeah right, I’m not kidding, because that whole issue to be in control
when you’ve got your faculties is not an issue that they are
comfortable with,
Disabled people described anti-depressants as a positive choice in their
lives and yet the complexity of the possible causes for the high incidence
of disabled people in this study using anti-depressants is clear. To assume
that anti-depressants are the answer to living ‘at risk’ lives ignores the fact
that mental health issues are directly linked to living in a disabling society.
Once experience of one’s mental health emerged in the society in which
one lives. Hence, in this sense, our participants reminded us of the
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community, relational and social factors that impact on one’s mental
health.
Counselling was also considered to be a useful resource in disabled
people’s lives, to the point where Matilda told us she would not be here
without it.
I’ve had some counseling and without a doubt I wouldn’t be here
without that sitting and talking to you. (Matilda)
And others found it useful:
I’ve had counselling about three times in my life. It was useful to get
things off my chest, in terms of who I am, although I think my
personality was set at a fairly young age…. Counselling can help, it
probably has helped me a bit, counselling helped me realise some
things about myself but it didn’t change my entire personality. (Jack,
disabled person with a degenerative condition)
I had a wonderful therapist in [states] and she is great and I have
worked through some of this stuff with her. (Beatrice, disabled
person)
This echoes the experiences of parents of disabled children who also found
counselling to be a useful resource. It is important to put the value that
disabled people put on counselling in context. Disabled people seek
support in the context of a disabling society. A disabling society is one in
which ‘perfect bodies’lxxvii are considered to be desirable above all others;
difference and diversity are feared or denigrated in the media, in families
and on the streets; access to material resources are restricted; disabled
people internalise the oppressive attitudes and practices of others as they
124
are excluded from participating in their communities. Sadly, sometimes
when disabled people seek counselling support, this support takes the
form of simply reinforcing negative images of disabled bodies and minds,
rather than unravelling issues of discrimination, unfairness and
exclusionlxxviii
And yet, many disabled people continue to understand resilience as a
character trait and responsibility of the individual:
I suppose for me some of my personality is that I am a very stubborn
person and I don’t like being told I can’t do things so often just by
the nature of something being phrased to me as ‘this is difficult or
you might find this tricky’ is a good tactic for actually me digging in
my heals and saying “I am damn well going to show that even
though I have a disability I can do this just as well as anybody else”.
Matilda (disabled person)
I would say to other people ‘don’t believe what anybody else says,
believe in yourself, you can achieve.
Rachael (disabled person)
Don’t let the bastards get you down!
Abbey (disabled person)
So what’s made me resilient? Secrecy, secrecy and being bloody
minded! Jill (disabled person)
The difficulty inherent in conceptualising resilience in this way is that there
is then a tendency to fail to attend to the systematic, cultural and
environmental threats to disabled people’s well-being. Disabled people
125
may blame themselves for failing to be resilient and independent in a
context that is often hostile.
Networks and interdependence are important in people’s lives:
There is no way I could have done anything without my I have a huge
network system of support - just huge. (Beatrice, disabled person)
Disabled people’s stories illustrate that resilience is dependent on a variety
of interconnected resources including access to health, benefits and social
care as well as having the opportunity to participate in and contribute to
communities whether through work or care or friendships with others.
Disabled people are not simply passive members of a disabling society and
they told us about acts of resistance. While disabled adults narrated many
stories of disablism (psychoemotional or otherwise) they also told us of
many stories of challenging disabling society:
Jack (disabled person) told us:
Another occasion, I was in London I stopped someone to ask for
directions, and before I had the chance to actually say anything he
went :“I’m not giving you any fucking money.” I just thought, “this
jacket cost more than your fucking house pal!”
Geoff challenged environments that were suitable for ‘ABs’ (able bodied
people) but not for him and Abbey was fed up with the ‘bi-peds’ who
didn’t go in straight lines.
126
And yet, in a context where support services for disabled people are under
attack, the media represents negative images of disabled people and
disabled people are abused on the streets there was also a sense of
disabled people ‘hunkering down and battoning the hatches’ in the face of
threat to resilience.
(7) Older people: From
childhood exclusion to a
valued adulthood
Key Points:
Older disabled people have a positive sense of who they are. and value
support from their communities.
127
Accessible homes and technology are very important to disabled people.
Older disabled people told us that peer support, supporting people in
similar circumstances to themselves, was a very good thing.
Sadly, older disabled people told us that discrimination continues at this
stage of their lives.
Just like adults of working age, older disabled people worry about a
growing sense of hostility to disabled people.
It is important to listen to older disabled people themselves, not just their
families or people close to them.
Disabled people in the older age group, not surprisingly, shared many of
the same issues, concerns and experiences as disabled people in other
stages of the life course. Indeed, these older participants challenge the
perception that social care is about frail, elderly people, often involved in
selling assets to pay for care. Our participants live active lives which
challenges the usual equation that older age necessarily equals a life of
social care. Leading active lives leads to interesting issues of identity
formation. This included their reflections on issues of negotiating a
disabled identity:
I don’t associate myself with disabled people as a homogenous
grouping, but I was involved in a disabled staff network at the
university because people kicked up such a fuss about there being
128
support for students when there was nothing for staff. Two or three
of us started that up about six years ago… I can remember David
Blunkett saying he didn’t know he was blind until he was six. Well, I
had almost exactly the same feeling, except that I realised that I was
hopeless compared with other people at tying sandals and
shoelaces… I used to have really, really bright, auburn hair, very long,
you couldn’t miss me, but, it was up to me to make sure that people
accepted it, that freckles were okay. I just looked on [visual
impairment] as another difference, like the hair, not as disability.
Maybe that made me want to achieve, want to prove, but not prove
other people wrong, just to prove myself, trying to have some selfbelief. (Olivia, older person)
I’ve had some impairments all my life but I didn’t identify myself as a
disabled person until the late eighties and I got ME. It affected my
mobility, my memory, I was attacked and so then I identified as a
disabled person but I didn’t really understand the social model at all.
(Flora, older person)
When I was still trying to walk I’d feel that people were looking at
me, I’d hear comments: “Oh, I wonder whats wrong with him?”. And
then there was a time I remember in [local town], it was probably
Christmas time, and we were going out for Christmas drinks, and I
didn’t drink, but I came back to the car and sat in it, and there was a
knock on the window and it was a policeman who said: “excuse me,
sir, we saw you staggering a bit towards the car, have you been
drinking?” and I said “no, it’s a condition that I’ve got”, and they
accepted that, but it’s probably those moments when you realise that
you are different. I’ve never thought of myself as disabled, yes, I’m
different, but probably not disabled. (Simon, older person)
Identity
129
These accounts would suggest that disability need
not be the master identity for people and to some
extents one could argue that this might feed into
the development of a resourceful sense of selflxxix.
In contrast, For Luke and Flora, as for some of the
younger participants in the study, a positive
disability identity was closely tied to disability
politics:
I personally think that disabled people area an oppressed group in
society and that there is a sort of hierarchy of oppression which is
kind of pyramidical in shape and at the bottom layer are people with
disabilities, and their voices never get heard. (Luke, older person)
I got involved, almost by accident in [city] Disabled
People’s access group first as a volunteer and I just
got more and more involved. [The social model of
disability] just made sense to me, it is all about
access issues and it is really good to work on
something practical where you can see the before
and after, you can see the changes that have been
made as a result of the work that you are doing.
Our members have a range of impairments and
Flora is in her mid-sixties.
Flora has Multiple Sclerosis
and is a breast cancer
survivor. Flora lives alone
and has grown up children.
Flora works for a local
organization of disabled
people.
health problems as I have. I keep adding some every year now,
which is a bit annoying! But working as part of the organisation of
disabled people really did empower me. It gave me a totally different
view of what it was like to be a disabled person, and I was able to
think of it positively. I found it all very interesting. (Flora, older
disabled person)
130
Community
Flora’s engagement with disability politics gave her a sense of power and
control in her life as well as a strong sense of community participation
and community cohesion. A politicised disabled identity provides a ‘hot
abrasion of hope’ for some individuals.lxxx Flora believed that for people
who acquire an impairment later in life, understanding
the social model of disability was ‘really important’.
Simon also found a sense of community in an
impairment-based organisation:
Simon is in his early sixties.
Simon has a form of muscular
dystrophy. He lives alone.
Simon recently retired from
an office job
Very luckily, I found this place in a local town that
knew all about neuromuscular conditions and I started going there
for physiotherapy. It was there that I learned about Disability Living
Allowance, I’d never heard of that one before.
As Simon tells us, as well as giving support and advice about managing his
condition/body, the centre gave vital information about access to material
resources. We know from previous research that different kinds of
disability organisations can offer specific kinds of support and these range
131
from political campaigning, through support with services and benefits
through to specific medical and psychological helplxxxi.
Luke told us that it was important
for disabled people to come
together to take power and
control in their lives and to |
challenge stereotyping and
oppression:
And the other thing as well I suppose at the moment I am really busy
challenging the stigma and stereotyping of people living with
dementia. Because those images are not correct so in
challenging the stigma what we try to do at [charity] is
have adventures, we have plenty!
And also to challenge the practice in care homes where if
somebody exhibits, if somebody acts out … dramatises a
stressful because they can’t articulate it so I don’t have the
possibility to directly articulate how I feel and what I want
but I might make a noise or kick a table or I might
whatever. Now practitioners and carers in care homes who
Luke is in his early
sixties. He has a
physical impairment
and dementia. Luke is
a mature student and
lives in university halls
with the support of a
carer.
are paid the minimum wage and treated like shit often
interpret that as disruptive behaviour or abuse so
sometimes they try restraints, which just make things worse. And
more often than not they will use the liquid ... and ask the GP if they
will prescribe things like phenobarbitone sodium ... I am not sure
what it is called but one of those things just basically just shuts the
brain down and sedates. And then they are just warehoused in front
of the telly watching the soaps and what we do with dementia
adventure is we get people out of that environment and into nature.
132
And also to create the space for them to articulate how they are
feeling but through activities or to work off and act out frustrations
anger and whatever and to become peaceful. (Luke, older person)
Material Resources
As we saw in the section about disabled children, accessible homes are
clearly important in the lives of disabled peoplelxxxii and Simon also
reflected on this as a key material resource:
I live in a dormer bungalow and I moved in here in 1986 and right up
until 1999 I was still able to get up stairs. But then at that point I
realised that I wasn’t going to be able to manage for much longer, so
I started thinking about modifying this house or moving to a
bungalow. I looked at bungalows, and the thing about bungalows is
that you put most of the space in the rooms and not in the corridors
so turning a wheelchair round becomes very tricky, so then I looked
at modifying this house. In the end, I decided to knock down the
double garage and build a purpose built extension. It was the most
expensive option but I’ve still got the bedrooms and bathroom
upstairs, I’ve still got the lounge and this area, and I’ve now got an
ensuite with bedroom and bathroom downstairs. When I had the
extension built, I had the occuaptional therapist and social worker
round, and one of things they said was, we can’t give you any money
for sinks and baths, but we may be able to help you with a toilet
because toileting is considered to be a necessity whereas washing
isn’t. And so I’ve got a loo, because I can still stand, but it’s the
transfer from sitting to standing that’s the tricky bit, so I’ve got a loo
that’s got a rise and fall mechanism on it, and it also washes and
dries me, so I don’t use toilet paper. It’s a closomat.
For Simon, access technology was a key material resource enabling him
having a sense of independence and power and control in his life:
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My wheelchair is a top of the range one costing
eighteen thousand pounds, so for instance
when I play bridge and we have coffee in the
middles, we stand up and my chair raises me
up to six foot, my normal standing height, so
now I can hold a conversation, rather than it
going over the top of my head… Technology
makes a huge difference to me it has given me
my independence. I’ve got a profiling bed which
helps, which also does go up and down; I’ve got a loo riser and I’ve got a
sink unit which goes up and down. When I redesigned the kitchen, I’ve
got a little surface over there which is lower so that I can prepare food, I
could have it higher but then my feet aren’t on the ground and then you
need to brace yourself sometimes, and I’ve got the cooker at that height,
and I’ve got cutouts underneath so I can still do a bit of washing up. I can
drive my wheelchair into the back of my car and lock it in position in the
driving seat so I am able to go out independently. So you see, it’s design,
design, design, design!
Unfortunately, the cost of such technology can be prohibitive and yet
Simon suggested this situation need not be the case:
When you think what you could get for £18,000, you’re talking about
an Audi A4, and you think of the technology and the seats and
everything that’s in that, as opposed to a wheelchair, which is four
wheels, about six motors and some fairly basic electronics, and it’s a
ridiculous cost. I think everybody should be entitled to a good
powered wheelchair, because they’re reliable, they’re good, they are
solid, they do the job, and that’s what people need. This has been
very good, very reliable, hardly ever goes wrong. I don’t like the
localized wheelchair services, I think it should be a national wheelchair
service. I’ve written letters to government, articles about wheelchairs
and how I think the wheelchair industry in this country, is a bit like,
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the motorcycle industry in the 1950s and 60s; it was all cottage
industries, small producers, and what you need is a Ford and a Honda
and various other things and get some good competition going
between the some big companies. If you’ve got a national wheelchair
service, your buying power would be phenomenal, and you could
start saying to people: “no, that’s too expensive, they can do it for a
lot cheaper, bring it down, compete”. And another gripe is the
wheelchair design, I mean wheelchairs aren’t designed, they are
usually cobbled together from what’s available. Let’s start thinking
about a design of a wheelchair, what do people need, alright you’ve
got the basics like you need four wheels, but does it fit through
doors, and what about seating, well let’s have a base unit, well lets
have lots of different kinds of seating all of which can fit on.
It is worth pointing out however, that it is how the technology is used,
rather than the technology itself that is importantlxxxiii
One of the powerful aspects of life story research is that it allows
participants opportunities for critical reflection and reminscence on the
impact of earlier life experiences on their current position. Older people
often reflected on their experiences of school and education and their
stories resonate with the stories that children, young people and disabled
people of working age tell today. Luke told us about the lack of support
he had as a child in care:
As a child, I probably had learning difficulties because I left school
functionally illiterate, but part of that was moving around from
children’s home to children’s home and school-to-school.
I had a
very disruptive education and part of it was that children in care very
often get labelled “mad, sad and bad”. So there was discrimination at
school. I was dumped in the bottom set for everything because I was
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behind in everything and there was a lot of disruption in that stream
in almost every school. There is a sort of dustbin label were people
who are not progressing are sort of dumped in the warehouse from
nine to four every day. So I didn’t really get much of an education. I
left school without any qualifications.
Despite Luke describing his education more than forty years ago, we know
that outcomes for looked after children continue to be poorlxxxiv. Olivia
also had a difficult time at school:
So I went to this school that was really hell
on earth.
It was your normal, average, not
particularly stunning boarding school.
The
Olivia is in her early sixties. Olivia
has a visual impairment. Olivia lives
classes were small, the rooms were fairly light
with her husband and has two
but it was an old mansion, like you’d see in a
grown up children who have left
tv drama. I don’t remember there being any
home. Until recently, Olivia was a
university
she has just
central heating and the mattresses used to crinkle
as iflecturer,
they had
straw in them. I remember being cold all the retired.
time and the kitchen
going on strike to you ended up having jam sandwiches and a drink
of water for tea. It wasn’t anything to do with disability, it was just a
poor school. (Olivia, older person)
Olivia told us about her experience of mainstream and special
environments. She told us about one special school where expectations of
disabled children were particularly lowlxxxv:
The other children had really hardly been
educated at all. It was pitiful, it made
me really angry, because at the school
they’d be stuck in front of a giant
television watching very basic educational
programmes. There used to be something
called Television Club, which was a bit like
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Newsround but in a very simplified form. So the teacher used to put
his feet on the desk and we’d all watch television club. There was no
feedback, no discussion.
Olivia told us about the difficulties that young people had forming
relationships that she described as being linked to their visual impairment:
People used to come with small problems, often quite sad ones,
about either getting boyfriends, or girlfriends or establishing first
relationships. Often their parents didn’t know how to connect with
them because everyone uses visual cues and body language and a lot
of these kids wouldn’t have picked that up but they still had the same
thoughts and feeling and emotions as any other adolescent.
Olivia described her own relationship challenges when she went to the
“hop” with a boyfriend:
So I’d pop to the loo and then think when I came out: “was he
wearing a blue shirt, a pale blue shirt?” There were about four boys
with pale blue shirts on, all got the same trousers, so if I stand still
would he come back up to me? It was such a nightmare.
We saw in previous sections that challenges were often the catalysts for
positive change and older people also told us that set backs had spurred
them on. Olivia told us about her poor O-level results:
When I got that postcard [with O-level results on it], I made a vow
that I would not be defeated! I didn’t want to be materialistic or
anything like that I just did not want to be poor. I didn’t want to be
dependent on others.
Sadly for Olivia, the aspirations for her of those around her did not match
her own:
I’d never heard of speech language therapy, I found it in a careers
book. I went to see a careers advisor just before I left school and he
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said: “where did you get those ideas from?” I said “well I looked
through things and that’s how I decided I want to do something that
was allied to medical professionals, something in health that had
contact with people”, and he said, “I can safely say” he said, “that
your aspirations are totally unrealistic, and that really you should be
thinking more along full time employment in a workshop”. He was a
waste of space, and I walked away from that thinking, “I’m going to
prove you wrong”, it was just another thing that made me say to the
establishment “I’m going to show you”.
Social Justice
Older people also told us about their fights for social justice and the
discrimination during their lives. Olivia told us:
We [a boy and I] were going to go out and then my mum came in
one day and said “I’m afraid you won’t be going out “ I asked: “well,
what do you mean?” She replied “well, his mother’s just not very
happy with it”. It was only with hindsight that I thought, yeah, there’s
been a bit of discrimination here…
Sometimes, discrimination was more subtle, as Olivia told us about
becoming a mother:
I wasn’t discouraged from becoming pregnant
but I had a lot of attendance from the midwife.
Everyone can remember bringing their first
baby home and lying in the bath thinking
I’m not going to be able to cope with this.
I was having to learn a whole new frame of
reference, I was quite tidy so I could
remember where things were. The health visitor wanted to “do a
project” on me. In fairness, she did ask me if that would be alright.
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Flora was aware of the discrimination that disabled children, in particular,
continue to face:
Sadly there is still prejudice. I know people who have learning
assistants in school and there is resentment because there are
children who are not statemented but might need support just as
much. But it is important to start in primary school, mixing together
and understanding equality and diversity. Don’t they say give me a
child until he is seven and I will give you the man? So it is really
important those basic principles of inclusion are developed in primary
school.
Flora’s call for disability equality education echoes the hopes of the young
disabled people in this study who also felt this was important for building
resilience in disabled people’s liveslxxxvi.
Luke told us about his current battle for material resources and social
justice as an advocate for others:
We did an intervention recently here in [city]. The situation was that
there were some people who had incontinence products and this
government came in and said: “well, the bill for that is too high. It
needs to be cut by twenty percent so you are going to have to take
away pull up pants from this group of people and give them butterfly
pants, which are twenty percent cheaper”. Butterfly pants don’t
contain the soiling and the mess and the urine in the same way that
a pull up pant does, because they have got leg cuffs and waist cuffs,
which actually contain it. Some people had been prescribed with an
anal plug that they withdrew. These people were accessing the
specialist transport service to go to day centres and activities and
escorts and the specialist transport services said “well, now this
person now no longer has containment for their double incontinence
and I haven’t been trained in changing their butterfly pants so we
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can’t have them on the transport”. It meant they didn’t get there daycare activity, so it was a complete disaster for a group of four
hundred people across [local authority] were affected. We intervened
to act as advocates for a small group of that four hundred but we
said that if the authority didn’t change the decision that they made
and make an exception for this group of people then we would bring
a class action. And that’s what it took, we had to threaten them with
class action
Luke describes how lack of material resources and social justice can
prevent people from participating in their communities.
In the previous section about adults of working age, we touched upon the
sensitive issue of power and control at the end of life. Here, Flora
reminds us of the discrimination that is present at the end of life and the
dangers this brings to the lives of disabled people:
There is also discrimination in the system, for example, a friend of
ours had a terrible experience in the local hospital. We had to do a
lot of advocacy for him because the staff didn’t understand the
impairment related issues. There were problems with chairs and
toilets and he was given a DNR (Do Not Resuscitate) without any
consultation from friends and family because he had lost weight and
yet ever since he was a teenager, because of his impairment, he’d
always been slight. His wife brought photos in and said ‘look, he’s
always been like this’ but they had to get a lawyer to get the DNR
taken off.
Olivia’s experiences of discrimination fostered a strong sense of social
justice within her:
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I had gone back to doing speech therapy employed by a health
authority but working in then special ed context. I was determined
that other kids would not be beset by the disadvantages that I had
had. The whole drive for this was that but like a bit like a
combination of being a suffragette or a feminist… I still have that
desire to get rid of inequality. So I don’t do it in terms of myself but I
do it for others so I don’t do it because I see myself as disabled, I do
it because these people have not been as eventually lucky as I was.
Bodies and Minds
Interestingly, Flora also made links between the disability movement and
the women’s movement in terms of the fight for social justice:
A few years ago, I had breast cancer and had a mastectomy. There
was a lot of pressure on me to have a prosthetic breast put in and to
look “normal” again but I though that this is like the debates we had
in the women’s movement in the seventies about ‘what is normal?’.
We had discussions about our bodies and accepting who we were
and so there are overlaps between the women’s movement and
understanding the person as political and the way I understand the
disabled people’s movement. The person is the political. Our
experiences are fashioned by political decisions and that affects how
we experience the world and the world disables us because of their
attitudes.
Flora’s discussion of her body is closely connected to her understanding of
the politics of disability and her feminist stancelxxxvii. Despite recent
criticisms of the social modellxxxviii, Flora continued to see the social model
as a crucial tool in her fight for social justice, for power and control in
her life and, of course, for material resources:
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I accept that as disabled people a lot of us carry person health
problems that we have to deal with that people who don’t identify
themselves as disabled people don’t have. But I don’t think that
makes the social model any less acceptable or less worthwhile. We
still have a right to an equal status in society whether the pain is
there or not. I think that if people are asking us to put down the
social model that is a mistake because there is clear evidence that
when you remove the physical, attitudinal and financial barriers it
improves the participation of disabled people.
Power, Control and Communication
As we saw in the section on young people, the internet has provided a
space for people to find a sense of community and to take power and
control over their lives as well as to advocate for social justice for
disabled people, Flora, too, had benefitted from the internet:
One of the things I found was really helpful was to go online where I
found people who had similar experiences. You didn’t have to say
anything, you didn’t have to explain.
Disabled people of working age talked about the impact of work on their
sense of identity and their well-being. Flora worried that many younger
people might not have access to work as a resource:
I do particularly worry for young disabled people at the moment. So
many young people can’t get jobs and access to work and disabled
people have to face attitudinal barriers and there are issues like
confidence and self esteem. Work teaches you so many skills like
how to share information, how to consult, which you don’t really learn
in school. If you are not in work you have a very narrow view and
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narrow experience of the world and that affects the expectations you
have of yourself and how much you can achieve.
Flora suggested that disabled people’s organisations offer a source of
community participation and community cohesion for young disabled
people:
These organisations do such good work. I can think of one young
man who came to our group. He’d been to special school and
thought that he wouldn’t achieve anything, but he had a fantastic set
of skills and we worked with him over a few years and he got himself
a degree, but if he hadn’t had that support and encouragement from
other disabled people, I don’t think he would even have thought of
going to university.
For the young person Flora describes, it was the organisation of disabled
people, rather than his family or professionals, that encouraged him to
take power and control in his life. It may be that such organisations have
a significant role to play in the lives of disabled children and young people
who, for whatever reason, do not have strong and supportive networks
around them. This raises a key question of how these relationships might
be facilitated.
Sadly, Flora, like many other participants in the study, reported a growing
sense of hostility towards disabled people within their communities:
Disabled people face oppression and abuse, particularly people with
fluctuating impairments. I use a wheelchair if I’m going on holiday or
if I’m going down a long platform because I can’t walk very far and I
need to take it with me but quite a lot of the time I can actually walk,
it doesn’t mean I can walk in every situation. So many of us try to
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manage our impairments and our health conditions in the most
appropriate way and for people to attack you and say, “oh you don’t
look disabled”, it’s ridiculous… I think the disabled people are just as
cross and angry about people claiming benefits who are not entitled
to them as much as anybody else, but I think the press don’t realise
that by going on and on about it, it creates a culture where all
disabled people are under suspicion and the papers don’t explain
about fluctuating conditions and things like that.
‘Unruly’ and ‘unpredictable’ bodies fail to conform to stereotypes of what
contemporary media stories say a disabled body should be and, sadly,
perceived bodily difference can seem to act as a catalyst for abuse from
‘non-disabled’ peoplelxxxix.
Luke also commented on how media portrayals fail to reflect disabled
people’s lives:
Quite often the focus with any portrayal on the TV the radio or film
and even in plays the focus is quite often on the impact on families
and carers rather than trying to get an exposition of the thoughts and
feelings
of
the
mental
processes
that
disabled
people
have
themselves. For example, on Radio 4 in The Archers, they have got
somebody with dementia but the focus is only really on the carers
and family members.
Luke suggests that disabled people are side lined in the representations of
their lives. He argued that disabled people can take power and control
and to advocate for themselves with support from one another:
Last year, I went on a residential for a week and I want to arrange
another one to invite people from support groups all over the
country to come and what we have been doing is to develop
dementia activism activity. Because there is a dementia strategy but
144
this government don’t seem to be funding the services needed. We
need to have advocacy and activism.
Some of that might be
lobbying, especially with people in the House of Lords and that is
quite effective.
But they don’t really speak from our constituency,
they speak from a research point of view and I think the voice of
people living with dementia needs to be heard so that is the focus of
my activities. (Luke, older person)
For many people living with dementia, care homes are their communities.
Luke was critical of some of the care provided which denies people the
opportunity to communicate about their requirements:
And also to challenge the practice in care homes where if somebody
exhibits, if somebody acts out dramatises a stressful because they
can’t articulate it so I don’t have the possibility to directly articulate
how I feel and what I want but I might make a noise or kick a table
or I might whatever. Now practitioners and carers in care homes who
are paid the minimum wage and treated like shit often interpret that
as disruptive behaviour or abuse so sometimes they try restraints,
which just make things worse. And more often than not they will use
the liquid ... and ask the GP if they will prescribe things like
phenobarbitone sodium ... I am not sure what it is called but one of
those things just basically just shuts the brain down and sedates. And
then they are just warehoused in front of the telly watching the soaps
and what we do with dementia adventure is we get people out of
that environment and into nature. And also to create the space for
them to articulate how they are feeling but through activities or to
work off and act out frustrations anger and whatever and to become
peaceful.
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Olivia described the point at which she felt her ‘resilience begin to slide’.
She found herself caring for older parents while doing a demanding job:
We are very unusual family in that both my husband’s parents and
my parents were alive until very recently. They all have very, very
different problems. Balancing life and work became very difficult as
they became three or four very incredibly demanding disabled, elderly
people. At the start of the new academic year I just couldn’t cope.
People need to know that not everything in the garden is rosy that
sometimes the difficulties can come from unexpected quarters and
they are not necessarily disability related at all.
As Olivia reminds us, life is often fraught and complex whether or not
‘disability’ is present.
The shift in identity and participation in a work community was difficult
for Olivia:
Then the offer of voluntary severance came up. The decision was
excruciating. I felt that I was undoing all that I had set out to achieve
although I don’t think that now. I may go back and do some work,
there is more for me to do.
Older people told us about their hopes for the future and how they
planned to participate in the community and to enjoy life. For Luke, the
future was about education:
I have been writing short stories and poems for
years as a hobby and as a passion, short stories,
poems. I did an access course that involved
creative writing, psychology, sociology, politics,
English and Maths. So I registered in writing for
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performance., I could go on and do a degree
after this at another university. Possibly I might
find a university that will accept me for a master’s programme when I
have finished I don’t know. But I will probably be a student for the
rest of my life …. I have good days and bad days. No matter what I
do to arrest its progression or delay, cognitive decline is the
inevitable thing is that it is going to get worse over time. I am sort of
going downhill, I know that. So I have a sense of urgency that I want
to cram in as much learning as possible as much as I can (Luke, older
person)
Graham told us that he had always felt that life was ‘for living’ and at the
age of 82 he felt the same way:
When I broke my back [aged 19] I thought I would die. I couldn’t
move and I woke up and I could see a light. I thought this is it. And
then I saw a fly going around the light. I made some kind of a noise
and they realised that I had come to and they came across with one
of these things with a spout to give me a drink - they bloody
drowned me in orange juice! All over everywhere and then they got
to work on me then….But I wanted to live, life is for living and you
want to make the best of it, try to make the best of everything that is
all you can do.
Just as for other groups of disabled people across the life course, the
future of health and social care provision is a key concern. Graham
worried about losing his motability car that gives him power and control
in his life:
The motability for the car has been more important than anything. I
have a car of my choice and then I don’t worry about servicing and
tyres and things like that. And after three years, I give it back and get
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another one and I have done that for years now… it’s a wonderful
scheme it enables me to get my wife to take me wherever I want to
go.
Luke told us about his concerns for the future of the health and social care
system:
But unfortunately we seem to have a culture in our government in
our country which, is very short term and financially driven and short
term sticking plaster solutions that they select, it inevitably means
that this epidemic is going to get worse like a tsunami wave of
problems. Twenty years down the line because the population that
are affected by dementia by 2050 will have almost doubled. They
really need to sort out health and social care, it needs upgrading and
when you put financial incentives into health and social care and you
have a conflict of interest where the GPs who are commissioning are
also small businesses who achieve an income through their work they
do. Inevitably I think that conflict of interest will manifest in clinicians
not meeting the needs of patients and there will be certainly groups
of patients who are especially disadvantaged and anybody that cant
articulate their needs in that fifteen or ten minutes GPS slot that you
get in the surgery will probably not get their needs met at all.
Older people remind us of the importance of the relationships they have
with carers. Graham told us about the care he received from Mrs M:
I suppose social care will all be cut back on, I have a carer who comes
every morning. Mrs M who must be obeyed! Oh, she is wonderful!
The care people said is there any way we could improve your care? I
said “make Mrs M work seven days a week” and they said “I am
afraid she has to have time off, now and again”. “Well” I said “the
people who care who come for her are not a patch on her.” She is
lovely, she is a rough old diamond.
Luke told us about his personal assistant:
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I mean but [my PA] is really good he doesn’t mind a hug, he kind of
polishes me when I get because I lose it I throw my toys out of the
pram! I have got a human being who is being human with me it
makes a huge difference.
The importance of these paid, caring relationships cannot be
underestimated. Furthermore, the qualitative nature of these relationships
to offer subtle, emotional and careful support should not be underestimatedxc. Families too continue to offer important relationships, Graham
and Olivia talked about the importance of their relationships with their
children and grandchildren as well as with their spouses. For older people
with families close by, these relationships offered a huge resource for
creating resilience.
Luke told us how he thought about resilience:
Resilience can arise or be elicited by solving problems. It’s not really a
theory of how to get along in life but it seems to be anecdotal
evidence that whatever doesn’t kill you it will probably do you some
good. And resilience is something that is built and grown rather than
something that you are born with.
If I talk about my own experience of building resilience, it started out
as a case of having an urgent and particular need for me to be
resilient. I mobilised the support for myself, there were people who
helped me initially and before I became an advocate, there were
other people who helped me to advocate for myself.
And then whenever I lifted my head above the
parapet, if you look around you, you see people
who are in the same boat. You have to say “I will
walk with you, shoulder to shoulder as you go
through what I have just gone through, and I will
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share what I know with you until you are
successful”. And that was informal at first not
in any kind of organised way it was just something
that I felt that I had to do. And then I decided I joined an Advocacy
Network.
Luke describes how he created a network of resilience around himself and
how he supports others.
The interconnections between the resources we identified in the network
of resilience are clearly played out in the lives of older disabled people.
Older people’s life stories also reveal that there are many constant thread
across the life course as disabled people battle for resources and social
justice and are both supported and supporters in the relationships they
make with people around them.
(8) Conclusions
Key points:
Resilience is not something that a person simply has (or not). People feel
resilient when they have access to the resources they need to live well;
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Resilience is a process, not an end point. A person’s sense of resilience is
constantly being negotiated in our relationships with other people;
This understanding of resilience is different from ‘common sense’
understandings of resilience that focus on an individual’s ability to ‘bounce
back’ or to ‘do well’ in spite of difficult circumstances;
The key message from disabled people is that we (disabled and nondisabled people) are all dependent on each other to build resilience in our
lives.
Disabled people’s narratives across the life course demonstrate the
complex and interconnected nature of resilience. When asked directly
about what the term resilience means to them, we found that disabled
people often held ‘common sense’ understandings of resilience; they
talked about ‘not letting the bastards get you down’, ‘never giving up’,
‘proving other people wrong’. For many of our narrators they articulated a
sense of a coarse struggle against past injustices. Yet their life stories also
reveal their interactions with the resources we identified at the start of this
report: material resources, relationships, identity, bodies and minds,
power and control, community participation, social justice, community
cohesion, to which, we have argued, people need access in order to
describe themselves as resilient. Their stories reveal resilience as a process
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rather than an end point and a process that is under constant negotiation
in relationships with people and resources.
Material Resources
Material resources were clearly important at each stage of the life course.
For children, the focus was on accessible and comfortable homes, toys,
games, outings to accessible play spaces and enjoying school. Meanwhile
their parents/carers were often focused on fighting for resources for them
including benefits, education, health and social care and equipment.
Material resources in disabled children’s lives were often associated with
issues of social justice – in terms of their families fighting for the
resources a child needs. Paradoxically, while parents reported that such
battles had increased their ‘resilience’, mulltiple, conflicts with a range of
service providers, were also identified by parents as key drains on
resilience. Resources also determined the extent to which parents and
children could exert power and control over their lives. For example, lack
of accessible childcare removed power and control from parents/carers in
making choices about working outside the home. Material resources were
crucial in creating and sustaining resilient families.
For disabled young people in the study, access to material resources
became a key concern as they began to take control of their own financial
affairs, move towards independent living and as they continued in further
and higher education. Disabled young people were often required to take
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on considerable responsibilities at a young age and didn’t always feel
prepared to do so; they had to navigate the benefits, care, health and
education systems and sought support to access their entitlements. In
many ways they were plunged into what has normatively understood as
the typical conditions of resilience: forced into developing resources for
self-sufficiency that many other young people are not expected to develop.
Their battle for resources lead them to engage with issues of social justice
which in turn lead them towards political activism and identity politics and
to affirm their lives as disabled people. Family remained important in
creating resilience but friendships and, indeed, relationships with paid
carers emerge as key at this time of their lives.
For many disabled adults of working age, accessing benefits, health and
social care remains a priority and they too find themselves advocating for
their rights and for social justice in a context of shrinking resources. In
this phase of the life course, work emerged as a key material resource
access to which was dependent on a combination of legislation and
reasonable adjustments, accessible environments and the attitudes and
support (or lack of it) of colleagues/employers. Indeed, personal
relationships with supportive and flexible colleagues emerged as being
closely interconnected with having the resources that enable disabled
people to work. This is not surprising given our argument that resilience is
built in relationships with other people. Work also emerged as a key
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factor in enabling disabled people to participate in their communities and
to build relationships. It had an impact on disabled people’s sense of
identity as someone who makes a positive contribution and offered
opportunities to take power and control in their lives. Many disabled
adults indicated that the current climate of austerity, budget cuts and
reduced welfare states had the potential to impact hugely on their life
chances and those of their families. Indeed, anticipation or fear of future
cuts was a key drain on resilience.
For older people, the thread of anxiety about access to benefits and care
which has emerged across the life course remains; older people, too, fear
for the future of their care and support. It is important to note that access
to education remained an important resource at each stage of the life
course disabled people were continuing to engage with education and to
see this as an opportunity for community participation and to take power
and control over their lives. Lifelong learning has the potential to feed
resilience. Current governmental policies that re-emphasise, for example, a
two-tier system of university education may well impact negatively on
widening participation. Disabled people are always amongst the first to
experience growing inequities in education, exclusion from which denies
disabled people access to resources key to building and sustaining
resilience.
Relationships
154
Not surprisingly relationships were important to disabled people at every
stage of the life course. For disabled children living at home, key
relationships were with their parents/carers and siblings but also with
friends, teachers, child carer workers, short break workers, and other
members of their communities eg: friends at church. For their
parents/carers, other parents/carers of disabled children were identified as
key supportive relationships that sometimes compensated for the often
negative, or even hostile, attitudes of members of the extended family or
local community. We were reminded time and time again that
communities remain largely disablist. ‘Helpful’ professionals were also
identified as important people in their lives and many families had close
and positive relationships with them. Enabling professionals bring with
them facilitative relationships. However, relationships with professionals
could also be a source of stress and anxiety that drained parents’ sense of
resilience. Relationships with other disabled people and the value of peer
support was evident across the life course. Accessing benefits and services
is a constant source of pressure. This has been magnified by the
introduction of more strict eligibility criteria for demonstrating additional
needs.
Disabled young people continue to see their families as key allies but they
also make relationships with professionals, including personal assistants,
and advocacy organisations to support them in their search for access to
155
resources and social justice. The qualitative nature of enabling personal
assistance remains largely misunderstood in the research literature and
merits, we believe, further research. Young people also talked about
navigating personal relationships and the joys of dating, particularly online.
Narrators welcomed increased opportunities for accessing virtual and
actual communities. We were encouraged to explore the importance of
on-line relationships as key resources building on more traditional notions
of close friendships developing through physical presence and proximity
and offer opportunities for peer support and affirmation. Disabled people
of working age continue to negotiate relationships with family, partners,
friends and neighbours and personal assistants and, as we saw above, their
relationships with colleagues and friends have a huge impact on their
access to the world of work and to community participation. Older
people continue to rely on and to support family and friends as well as
receiving care from paid carers. However, as in other stages of the life
course, their opportunities to build relationships and participate in their
communities are often limited when access to material resources is
denied. Luke’s example of the withdrawal of continence aids in his local
authority area clearly demonstrates this point.
Identity
For disabled children, their identity was usually built on notions of family,
home, interests and activities although for some children there was a sense
156
of bodily difference. As children grew older they became aware of the
identities imposed on them by others and how these changed over time.
Jim told us that he was ‘the special needs kid’ at school, and the ‘good
student’ at university. Young people and adults of working age
questioned the extent to which they were defined by their disabled
identity or by their character traits or other factors such as gender. Across
the life course, some disabled people saw their identity as a disabled
person as a political identity that was linked to their fights for material
resources and access to social justice. For some participants their very
resilience was framed in terms of a proud disability activist identity. For
others, disability was not the master identity and they pointed to other
categories of difference associated with community membership, gender,
class and ethnicity. Previous research in disability studies has emphasised
the notion of double oppression associated, for example, with
disability/ethnicity or disability/class. While these markers of
marginalisation clearly exist, narrators demonstrated the ways in which
different identities intersect. Hence, a strong community, class or ethnic
identity may well challenge the conditions of disablism experienced when a
person has an impairment. We heard too from some narrators whose lives
maybe short. Their accounts reminded us of the importance of living short
but, nevertheless, valued lives.
Bodies and Minds
157
As we have noted, some disabled children were aware that their bodies
were considered to be ‘different’ from other children’s bodies, and yet
other children made no reference to their bodies at all in their life stories.
Disabled people looking back at their lives also described their emerging
sense of difference as a child. Parents/carers described the ways in which
encountering the views of others (including professionals, strangers and
family members) shaped their own understandings of their children’s
developing bodies. Some parents challenged understandings of ‘normal’
bodies and ‘normal’ development. And yet, parents/carers engaged also
with traditional medical diagnoses and labels that they saw as vital in
terms of accessing resources for their children. The perception among
parents remained that diagnosis, not the identification of need, was the
key passport to services.
Adults of working age spoke about their bodies and, not surprisingly, there
was evidence of some people having internalised the negative attitudes of
others; viewing their bodies being ‘lacking’ or ‘lesser’ than the bodies of
non-disabled people. Disabled people of working age described the
realities of living with impairment, such as living in pain or with fatigue,
and the limitations they felt that this brought to their daily lives. And yet,
while disabled people often talked about their bodies and minds in their
life stories, bodies and minds were always and only part of their stories,
necessarily interconnected to every other aspect of their lives. For
158
example, when Jenny spoke about pain, she immediately talked about the
support she had had from her GP and pain management clinic.
It is not surprising, perhaps, that adults of working age and older disabled
people seemed to talk more about their bodies than children and young
people. In a Western society focused on eternal youth, the issue of aging
bodies has become a concern for many disabled and non-disabled people.
As bodies change over time, people were negotiating new relationships
with their bodies and minds in environments that were often enhanced by
access to technological resources that gave disabled people independence
and power and control. We are very much aware of the tensions around
discussions of the body within the disabled people’s movement and
disability studies literature. Our narrators highlight the ways in which
bodies are never simply understood in terms of biology, deficit or medical
ideas. Instead, when narrators spoke of their impairments they did so in
the sense of coming to understand their bodies as they experience them in
the social world. How we feel or think of our bodies appears to take place
in a context where a multitude of ideas about the body or discourses help
shape our feelings and thoughts. In this sense, then, in similar ways to
identity formation, the body might be a key place from which resilience
and resistance is created.
Power, control and communication
159
Power, control and communication clearly emerge as being important for
disabled people in every area of their lives. Sadly, in the section about
disabled children, we saw evidence that children often do not have power
and control in their lives and that systemic and attitudinal barriers persist
to their communication, particularly in the education system, as Diane told
us. Their parents/carers also felt that they had little control over their lives
when they engaged with complex systems of service provision. Janice and
Cate vividly described the loss of power and control they felt in their
encounters with social services. Often lack of information was a key barrier
to disabled building resilience.
Disabled young people told us about how they were enabled to take
power and control at college and were consulted about the appointment
of staff and the new college building. Several young people found that
the internet gave them information and therefore an opportunity to take
power and control in their lives and to make their voices heard. Such
political engagement on-line also offered new forms of community
participation that were not always available in their local communities.
Virtual communities provide the potential for the sharing of information,
for new modes of communication and opportunities for exploring notions
of power and control. Many adults of working age, living with the threats
of loss of benefits and services as well as uncertainty about their changing
bodies, felt that power and control was being taken from them. Current
160
British society was understood as a harsh environment. The fear of financial
hardship meant that some disabled people were anticipating changed
circumstances and actively planning for them. For example, Abbey and
Jenny were both thinking about paying off their mortgages early,
anticipating a time when they might no longer be able to work. Disabled
adults also spoke about power and control at the end of life with Emma
advocating for disabled people’s right to euthanasia and Flora warning
about the consequences of this for the wider community of disabled
people. For Luke, as we saw above, having power and control in later life
came through access to education, and for Flora it was through voluntary
work. For Graham, having access to a motability vehicle gave him the
power and control to lead his life as he wanted to.
Community Cohesion
For disabled children in the study their sense of belonging came from
strong family support networks. However, their parents/carers reported
that their children were sometimes excluded within extended family
structures, in schools and communities and within health and social care
services. Cate, Molly and Janice reported the difficulties they faced in
finding accessible childcare in their communities. Several families talked
about being stared at when they went on outings and how difficult this
was in terms of feeling welcome in the local communities. This finding
resonates with recent research that has documented a rise in hate crime
161
against disabled people. This is a particular concern for many of the
narrators in the study. An exclusionary community can rapidly undo a
sense of personal resilience. For young disabled people, their sense of
belonging and collective well-being often came from on-line communities,
as we have already suggested. However, family and friends also continued
to be important as did faith communities – Lucy felt part of the church,
Asad talked to other deaf people at the mosque. We have already touched
on the sense of community cohesion that resulted from participation in
voluntary and paid work for disabled people of working age and older
disabled people.
Disabled people also reported the threats to community cohesion they
faced, including lack of accessible environments, particularly with reference
to transport. Current media trends which represent disabled people as
‘benefit scroungers’ or ‘comedy’ programmes which mock disabled people
also threatened disabled people’s feelings of being part of their
communities and, indeed, contributed to them no longer feeling safe in
their localiities as Geoff explained. It is crucial for policy makers,
researchers, service providers, practitioners and disabled people’s
organisations to consistently monitor and aim to address what appears to
be a socio-economic backlash against disabled people.
Social Justice
162
As we have seen already, for disabled people, the issue of social justice is
closely tied to access to and the distribution of resources at every stage of
the life course. Paradoxically, battling for social justice was identified by
people as both building resilience and draining resilience. Fighting for
social justice allowed people to build relationships, feel that they belonged
to a community, develop skills and embrace a politicised identity as a
campaigner, but at the same time the constant battling, challenging the
attitudinal and systemic barriers they faced on a daily basis, drained
resilience. Many of our participants articulated a clear sense of what social
justice meant to them and other disabled people. That many young
disabled people identified a number of virtual and actual political
campaigns and activists challenges a commonsensical notion that today’s
young people are apolitical. In contrast, disabled people and their families
are thrown into the political mix – whether or not they like it – because
building resilience is associated with creating conditions for social and
political change.
Community Participation
The extent to which disabled people are able to participate in and
contribute to their local communities is closely tied to their access to
material resources. Diane could not go to the secondary school her
classmates went to because the building was inaccessible, David’s
participation was limited by an inaccessible transport system. However,
163
families also felt unable to participate in their communities when they
encountered staring or insensitive or hostile comments form strangers.
Jenny and Abbey explained how pain and fatigue meant that they could
not participate in some of the activities their friends did – like going to the
theatre or the pub after work. The concept of participation encompasses
psychological, embodied and community experiences. Clearly community
participation is closely linked to the notion of community cohesion – it is
not possible to participate when you do not feel that you belong or to feel
that you belong where you are unable to participate, and yet participation
and cohesion represent slightly different aspects of a sense of community.
Disabled people’s life stories reveal that resilience is developed in relation
to access to a wide range of resources. A network of resilience implies
interconnections and interdependence in people’s lives. Crucially, disabled
people are not alone in being interdependent. ‘Non-disabled’ people also
require access to the resources we have identified in order to be able to
identify themselves as resilient. However, the difference is that nondisabled people are rarely required to reveal explicitly the resources upon
which they rely and the interdependent relationships they engage with in
the ways that disabled people arexci. Disabled people, on the other hand,
are often required to make their interdependencies explicit, particularly
when they are required to evidence their entitlements to accessing welfare
164
and support. In this sense, then, disabled people constitute a group of
experts on the workings of community participation.
Disabled people’s narratives reveal much about the complexity of the
nature of resilience as a network and as a process and the challenges this
brings in terms of setting out to support and develop resilience in the lives
of disabled people. Narrators’ accounts support the view we developed
through our literature review: the resilience is a relational, social,
community and networked phenomenon rather than an individual trait or
quality. Penny and William described how they constructed a network of
resilience with their son Neil at the centre. Luke described how he
mobilised a network around himself and went on to support other people
walking ‘shoulder to shoulder’ with them as an advocate. The challenge
for services, then, is to work in ways that both develop and support
resilience networks that respond sensitively to disabled people’s lives. It
appears that the concept of interdependence rather than independence
will prove more helpful in the long run in creating resilience in the lives of
disabled people.
165
i
This social constructionist approach to resilience draws on the work of Ungar, M.
(2004) A Constructionist Discourse on Resilience: Multiple Contexts, Multiple
Realities Among At-Risk Children and Youth, Youth & Society, 35(3): 341-365.
ii
For a more details of our approach to resilience read: Runswick-Cole, K.and
Goodley, D. (2012) Resilience in the lives of disabled people across the life course,
Available on-line at: http://disability-resilience.posterous.com/
See Runswick-Cole and Goodley for the full literature review also available at
iv
the project website: http://disability-resilience.posterous.com/.
See for examples Goodley (2001, 2004); Goodley and Runswick-Cole (2011),
v
Runswick-Cole (2007; 2008; 2010).
vi
A useful overview of these approaches is provided by Colin Barnes (1992).
vii
The work of Ungar (2004; 2007) was appropriated for our analysis and the
resilience resources adapted as we outline in the introduction to this analysis.
viii
In the process of reviewing the relationship between the data of life stories and
the analytical framework of the resilience resources, we were able to evaluate
each one of the eight resources in terms of their empirical adequacy (does the
data illuminate/exemplify the concept?); theoretical coherence (does the concept
work in terms of a coherent category?) and comprehensiveness (does the concept
work to capture the complexity of our participants’ lives?). This approach is in line
with an approach to ‘circuit of knowledge’ and the tests of theoretical concepts
developed by Goldblatt and colleagues (2004).
ix
We are indebted to the work of Priestley (2003), Shah (2005) and Shah and
Priestley (2011) who have developed a life course framework approach to the
study of disability.
x
See Priestley (2003)
166
xi
See Goodley (2011) and Wendell (1996)
xii
See Mallett and Runswick-Cole (2010) for a fuller discussion of how impairment
labels function.
See Larson, E. (1998). Reframing the Meaning of Disability to Families: The
xiii
Embrace of Paradox. Social Science & Medicine, 47(7), 865-875.
For rich insights into the stories of parenting and caring for disabled children
xiv
see the work of Murray; Murray, P. (2000). Disabled Children, Parents and
Professionals: Partnership on Whose Terms? Disability & Society, 15(4), 683-698;
Murray, P. (2003). Reflections on Living with Illness, Impairment and Death.
Disability & Society, 18(4), 523-526.
xv
The work of Shildrick has been very influential in thinking in more affirmative
ways about disabled bodies Shildrick, M. and Price, J. (2009b). Breaking the
boundaries of the broken body. IN J. Price and M. Shildrick (Eds). Feminist theory
and the body. (pp432-444). Edinburgh: Edinburgh University Press; Shildrick,
Margrit (2009). Dangerous discourses of disability, subjectivity and sexuality.
London: Palgrave Macmillan.
A fascinating paper by Gibson explores the ways in which wheelchair uses
xvi
relate to and with others through the use of their wheelchairs Gibson, B. (2006).
Disability, connectivity and transgressing the autonomous body. Journal of
Medical Humanities, 27, 187_196.
For an account of the spatial location and resistance of disabled bodies see
xvii
Freund, P. (2001). Bodies, Disability and Spaces: The Social Model and Disabling
Spatial Organisations. Disability & Society, 16(5), 689-706.
xviii
A wonderful account of the body-in-the-world – which is a phenomenological
account – is offered by Michalko: Michalko, R. (2002). The Difference That
Disability Makes. Philadelphia: Temple University Press.
xix
xx
See McLaughlin et al (2008)
The work of Beresford and Kittay is insightful here on the gifts of parenting a
disabled child, see for examples Beresford, B. (1994). Positively Parents: Caring for
167
a Severely Disabled Child. London: HMSO; Kittay, E. F. (1999a). Love's Labour:
Essays on Women, Equality and Dependency. New York, N.Y.: Routledge; Kittay, E.
F. (2002). When Caring is Just and Justice is Caring: Justice and Mental
Retardation. In Kittay, E. F. & Feder, E. K. (Eds.), The Subject of Care: Feminist
Perspectives on Dependency. Oxford: Rowan and Littlefield Publishers.
xxi
For an overview of social and cultural capital gains made through being a
parent of a disabled child see McKeever, P., & Miller, K. L. (2004). Mothering
Children Who Have Disabilities: A Bourdieusian Interpretation of Maternal
Practices. Social Science & Medicine, 59(6), 1177-1191.
xxii
A lovely account of the significance of the bedroom to children is provided by
Williams, S., Lowe, P. and Griffiths, F. (2007). Embodying and Embedding
Children's Sleep: Some Sociological Comments and Observations. Sociological
Research Online 12(5), http://www.socresonline.org.uk/12/5/6.html
xxiii
See DfE (2011 )Support and Aspiration: A new approach to special educational
needs and disability, Available online at:
http://www.education.gov.uk/childrenandyoungpeople/sen/a0075339/sengreenpap
er
xxiv
The influential work of Beresford is worth reviewing here Beresford, B., et al.
(2005). Integrating Services for Disabled Children, Young People and Their
Families: Consultation Project. York: Social Policy Research Unit, University of York;
Beresford, B., et al. (1996). What Works in Services for Families with a Disabled
Child. Ilford: Barnardo's.
xxv
DfES (2007) Aiming High for Disabled Children: Better Support for Families,
London: HMSO.
1.
xxvi
Goodley, D. and Runswick-Cole, K. (2010) ‘We murder to dissect’: the disablist impact of
claiming Disability Living Allowance for disabled children, Research Institute for Health and
Social Change Conference, 1st -2nd July, 2010, Manchester Metropolitan University,
Manchester, UK.
xxvii
Murray, P. (2010) A Fair Start for All, Birmingham: Birmingham University.
168
xxviii
Children’s Society (2011) Four in every 10 disabled children living in poverty,
Available on-line at: http://www.childrenssociety.org.uk/news-views/pressrelease/four-ten-disabled-children-are-living-poverty Accessed on 1st November,
2011.
Contact-a-Family (no date) Statistics Available on-line at:
xxix
http://www.cafamily.org.uk/professionals/research/statistics.html Accessed on 22nd
February, 2012.
xxx
A discussion of the work-life balance is provided by Kagan, C., et al. (1998).
Caring to Work: Accounts of Working Parents of Disabled Children. London:
Family Policy Studies Centre in collaboration with the Joseph Rowntree
Foundation.
xxxi
Runswick-Cole, K. and Goodley, D. (2011). Problematising policy: conceptions
of ‘child’, ‘disabled’ and ‘parents’ in social policy in England. International Journal
of Inclusive Education,15 (1), 71–85.
xxxii
The work of Beresford and Kittay is insightful here on the gifts of parenting a
disabled child, see for examples Beresford, B. (1994). Positively Parents: Caring for
a Severely Disabled Child. London: HMSO; Kittay, E. F. (1999a). Love's Labour:
Essays on Women, Equality and Dependency. New York, N.Y.: Routledge; Kittay, E.
F. (2002). When Caring is Just and Justice is Caring: Justice and Mental
Retardation. In Kittay, E. F. & Feder, E. K. (Eds.), The Subject of Care: Feminist
Perspectives on Dependency. Oxford: Rowan and Littlefield Publishers.
xxxiii
An insight into some of the tensions involved in accessing health care is given
by Place, B. (2000). Constructing the Bodies of Critically Ill Children: An
Ethnography of Intensive Care. In Prout, A. (Ed.), The Body, Childhood and Society.
Basingstoke: Palgrave.
xxxiv
Again the work of Murray (with Penman) is important here Murray, P., &
Penman, J. S. (Eds.) (1996). Let Our Children Be: A Collection of Stories. Sheffield:
Parents with Attitude.
169
Murray, P., & Penman, J. S. (Eds.) (2000). Telling Our Own Stories: Reflections on
Family Life in a Disabling World. Sheffield: Parents with Attitude.
xxxv
For a more detailed discussion of the meaning and content of community see
Goodley, D. and McLaughlin, J. (2008c). Community Practices. In McLaughlin, J.,
Goodley, D., Clavering, E. and Fisher, P. Families Raising Disabled Children:
Enabling Care and Social Justice. London: Palgrave.
xxxvi
An overview of the informal learning afforded through the experience of
parenting is provided by Llewellyn, G. (1997). Parents with Intellectual Disability
Learning to Parent: The Role of Informal Learning and Experience. International
Journal of Disability, Development and Education, 44(3), 243-261.
Lundeby, H., & Tøssebro, J. (2003). Struggle and Satisfaction: Parents’
xxxvii
Experiences with Services for Families with Disabled Children. Paper presented at
the 7th annual research conference for the Nordic network on Disability Research.
Jyväskylä, Finland.
xxxviii
For an account of the interdependent individual see Goodley, D. (2007).
Becoming Rhizomatic parents: Deleuze, Guattari and disabled babies. Disability &
Society, 22 (2), 145 – 160.
xxxix
Foundation for People with Learning Disabilities (no date) Circles of Support,
Available online at: http://www.learningdisabilities.org.uk/our-work/family-friendscommunity/circles-of-support/ Accessed on 22nd February, 2012
xl
LOL is used in ‘text speak’ as an abbreviation for ‘laugh out loud’
xli
Priestley, M. (2003) Disability: A life course approach, Cambridge: Polity Press.
xlii
Children’s Society (2011) Four in every 10 disabled children living in poverty,
Available on-line at: http://www.childrenssociety.org.uk/news-views/pressrelease/four-ten-disabled-children-are-living-poverty Accessed on 1st November,
2011.
xliii
For details of the discrimination in the health service experienced by people
with learning difficulties read Mencap (2007) Death by Indifference, Available
online at: http://www.mencap.org.uk/node/5863
170
Recent research has emphasised the resources provided by virtual communities
xliv
in supporting the lives of disabled activists (Brownlow and O’Dell, 2007) and
parents of disabled children (McLaughlin et al, 2008)
See Hardt and Negri (200, 2004) for a well known account of globalised
xlv
activism.
Goodley, D. and Runswick-Cole, K. (2011) Short Breaks in Derbyshire – what parents say
xlvi
Available online at: [Online at: www.rihsc.mmu.ac.uk/postblairproject/.]
See: Goldbart, J. and Marshall, J. (2004) “Pushes and Pulls” on the Parents of
xlvii
Children who use AAC, Augmentative and Alternative Communication, 20(4): 194208.
xlviii
See also: Goldbart, J. and Marshall, J. (2004) “Pushes and Pulls” on the Parents
of Children who use AAC, Augmentative and Alternative Communication, 20(4):
194-208.
See: How to decide if someone lacks the capacity to make decisions Available
xlix
online at:
http://www.direct.gov.uk/en/Governmentcitizensandrights/Mentalcapacityandthela
w/Makingdecisionsforsomeoneelse/DG_195206
l
See Ryan and Runswick Cole (2007) for a discussion of the shared disablist
challenges faced by disabled children, their parents and their family members.
li
See Marks (1999a, 1999b), Shakespeare (2000) and Wendell (1989) for
discussions on the problematic ways in which non-disabled people respond to
the realities of disability and impairment.
See Runswick-Cole (2010) for a discussion of these issues
lii
, Runswick-Cole, K. (2010) Living with Dying and Disabilism: death and disabled
liii
children, Disability and Society, 7 (1): 813 – 826.
Shakespeare, T., Gillespie-Sell, K. and Davies, D. (1994) The Sexual Politics of
liv
Disability, New York: Cassell.
lv
Visit http://vimeo.com/37258345 for Martyn Sibley’s relationship webinar.
lvi
Changing Places toilets provide hoists, adult-sized changing bench, and space
for disabled people and their carers. Visit: http://www.changing-places.org/
lvii
Wood, C. and Grant, E. (2010) Destination Unknown, London: Demos.
171
Visit: diaryofabenefitscrounger.blogspot.com/
lviii
For more information visit:
lix
http://research.dwp.gov.uk/asd/workingage/esa_wca/index.php?page=esa_wca_arc)
.
lx
See:
http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/YourEmployment
Rights/DG_4001071
lxi
see the seminal work of Barnes (1991) and Oliver (1990).
lxii
This feeling of being unable to take a risk in moving to a new job links to
Campell’s (2009) discussion of internalized oppression.
The collection from Barnes and Roultstone’s (2005) expands upon the barriers
lxiii
to work faced by disabled people.
See Bellini & Dalgin (2008) for an account of the stereoptyical perspectives of
lxiv
employers on hidden and visible impairments.
lxv
Indeed, ignorance around disabled employers has been addressed by The
Association of Disabled Professionals which offers, advice, support, resources and
general information for disabled professionals, entrepreneurs, students and
employers. See http://www.adp.org.uk/ for more details.
lxvi
See: http://www.dwp.gov.uk/docs/pip-draft-assessment-easy-read.pdf), See
also: Disability Alliance (2011) Incapacity Benefits Migration, Available on-line at:
http://www.disabilityalliance.org/ibmigrate.htm Accessed on 1st November, 2011.
lxvii
This point links with the findings of Watson (2002) whose work with disabled
children suggested that for many a disabled identity was neither desirable nor
important.
lxviii
Add Kirsty Lydiard’s PhD
172
Carol Thomas (2001, 2007) and Donna Reeve (2002, 2008) have developed a
lxix
body of disability studies work which focuses on the experiences of living with
impairment in a disabling society and the potential dilemmas this may cause for
disabled people, particularly as a consequence of the responses of non-disabled
disabled to disability.
lxx
Thomas’s (2007) work on impairment effects is significant here.
lxxi
As Wendall (1989: 247) argues: ‘Much of our experience goes underground,
because there is no socially acceptable way of expressing it and having our
physical and psychological experience acknowledged and shared’.
lxxii
For Malec (1993: 22) many ‘persons with disabilities are made into the ‘other’
by many, if not most, non-disabled people’ and continues:
It is seldom comfortable to know that one is on display, on stage, as it
were … In public places, whether alone or with friends, I’m constantly
aware of remarks made by others in my hearing … When I am alone, I
know that I am being watched as I walk down the sidewalk or through
buildings. I am told that people in cars will turn their heards as they pass
me in order to continue staring (Malec, 1993: 22).
lxxiii
Inclusion London (2011) Bad News for Disabled People: how newspapers are
reporting disability Available on-line at: http://www.inclusionlondon.co.uk
Accessed on 1st November, 2011.
lxxiv
Equalities and Human Rights Commission (2011) Hidden in Plain Sight,
Available on-line at: http://www.equalityhumanrights.com/legal-andpolicy/inquiries-and-assessments/inquiry-into-disability-relatedharassment/hidden-in-plain-sight-the-inquiry-final-report/ Accessed on 27th
March, 2012
lxxv
Inclusion London (2011) Bad News for Disabled People: how newspapers are
reporting disability Available on-line at: http://www.inclusionlondon.co.uk
Accessed on 1st November, 2011.
173
The potential for internalized oppression of disabled people has been widely
lxxvi
documented (Reiser and Mason, 1992, Crow, 1996; Marks, 1999a, 1999b)
lxxvii
For further discussion of this see Kumari Campbell (2009)
lxxviii
For an excellent discussion of counseling in the lives of disabled people see
Reeve (2002).
lxxix
See Watson (2002)
lxxx
This is a phrase taken from Ungar’s (2011) journal ‘The social worker’
lxxxi
Hughes (2009) provides an interesting distinction between social model
stalwart and biological citizen organisations.
lxxxii
The work of Hemingway (2011) is appropriate here.
lxxxiii
Millar, S. (1998) The Child, Education and Augmentative and
Alternative Communication in The Child, Education and AAC Available online at:
http://www.acipscotland.org.uk/Millar.pdf Accessed on 27th May, 2012
Gentleman, A. (2009) Children in care: how Britain is failing its most
lxxxiv
vulnerable, The Guardian, 20th April, 2009 Available on-line:
http://www.guardian.co.uk/society/2009/apr/20/care-system-failures Accessed on
12th March, 2012
lxxxv
There is a plethora of historical literature on the segregating and
dehumanizing effects of special education – see Armstrong for a useful overview.
lxxxvi
See the work of Shah and Priestley (2011).
lxxxvii
For a discussion of feminism and disability see Crow, 1996 and Thomas 1999.
lxxxviii
For a fuller discussion see Shakespeare 2006
174
lxxxix
see Goodley and Runswick Cole (2011, 2012) for discussions of these very
points.
xc
The recent work of Shakespeare (2000) and Liddiard (2012) expands up ethics
of care in relation to personal assistance.
xci
See Shildrick and Price, 2006, for a discussion of interconnectivity
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