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Parenting Chrissy
A TRANSFORMATIONAL JOURNEY THROUGH THE HAZARDS OF THE
DISABILITY SYSTEM
by Jane Gregory
Parenting Chrissy
A TRANSFORMATIONAL JOURNEY THROUGH
THE HAZARDS OF THE DISABILITY SYSTEM
by Jane Gregory
Published by the Centre for Welfare Reform
in assoication with
Publishing Information
Parenting Chrissy © Jane Gregory 2017
First published January 2017
Parenting Chrissy is published by the Centre for Welfare Reform
If you copy and reuse any part of the material in this report then you must always cite
both the author and the publisher and, wherever possible, provide a direct link to the
Centre for Welfare Reform's website.
www.centreforwelfarereform.org
Designed by Henry Iles: www.henryiles.com
41 pp
ISBN download: 978-1-907790-86-7
About the author:
Jane Gregory has been working as a freelance journalist, writing about learning disability and health
issues, among other things, for the past 18 years. She has had articles published in national magazines
and newspapers including the Daily Mail, Mail on Sunday (Health) and Community Care.
Jane has written a self-help book Bringing Up a Challenging Child at Home and a ‘parent’s perspective’
chapter in Genetics of Mental Retardation about her experiences with Chrissy, who has a rare genetic
disorder that was not diagnosed until she was 21.
As well as teaching basic skills to students with learning disabilities at an FE college, Jane has worked
as a Critical Reader on Mencap’s information leaflets for families. She has written and delivered
trainings and talks about rare chromosome disorders, learning disabilities, challenging behaviour and
communication to healthcare professionals, geneticists and other parents. Jane is very interested in
epilepsy, autism and challenging behaviour and shares her thoughts on her blog Sharing Stories.
More recently, Jane was working as an Expert by Experience with the CQC and was involved in
producing the CQC’s Expert by Experience newsletter. Last year, she gained a Distinction on MSc Applied
Psychology of Intellectual Disabilities at Portsmouth University.
Acknowledgements:
To my Project Supervisor, Karl Nunkoosing, for his encouragement and faith in my ability to succeed.
To my dear friend, Sue Cooper, and Course Tutor, Mark Haydon-Laurelut, for instilling confidence that
the MSc which includes this study was achievable for me. To my husband, Ian, and children, Alex and
Jamie, for their inspiration, love and unstinting belief in my abilities. Most of all - to Chrissy - one of my
greatest blessings, for making this study possible.
Contents
Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
The journey from asking ‘why?’ to knowing . . . . . . . . . . . . 17
Chasing new ‘fixes’ . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22
Liberating possibilities of policy changes . . . . . . . . . . . . . . . 26
Transformative validation . . . . . . . . . . . . . . . . . . . . . . . . . . 28
Bibliography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
5
A REPORT FROM THE CENTRE FOR WELFARE REFORM
Foreword
by Mark Haydon-Laurelut and Karl Nunkoosing, University of
Portsmouth
I (Mark) met Jane when she was considering signing up for the
MSc program . Jane had been a parent to Chrissy for decades,
navigating the health and social care systems and had written
a book about parenting her daughter . Jane briefly recounts our
meeting in her essay, wondering about whether against the
backdrop of this learning that not possessing ‘A levels’ may have
stood in the way of entering academia . It didn’t .
I am glad Jane chose auto-ethnography as her methodology. Auto
ethnographies attention to autobiographical accounts in the context
of cultural and structural factors enables a nuanced description of the
intertwining personal and political. It resists the idea that personal
experience (an authentic knowledge of a survivor’s experience) cannot
be a valid form of knowledge. Taking account of this kind of work will
be critical to any service provider who wishes to enact the values of
partnership, co-production and collaboration.
What are the hazards to Chrissy and Jane in this story? In no particular
order they include long periods of waiting (for services to decide
who is responsible for supporting Chrissy and her family, for a
diagnosis) marginalization and dehumanization; as the parents voice
and the needs of the person who should be at the centre become a
battleground over budgets and egos. We see these processes, akin to a
kind of carving up of a life, placing strain on the family.
‘When Chrissy was in hospital after developing seizures, I asked a
pediatrician: “Is she going to be mentally handicapped?” “There’s a
possibility she could be retarded, yes,” he replied briskly. Before I could
ask him to elaborate, he turned on his heel and left to continue with his
ward round.’
These kinds of critical episodes, where one imagines identities can be
made and remade and life courses set out anew, are powerful and one
hopes, but cannot assume, that contemporary medical professionals
would be better educated in communicating with patients and families.
In this ‘behind the scenes’ quote we really feel we get to know the
terrain faced by Jane and Chrissy. Here the GP notes:
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PARENTING CHRISSY | FoREWoRD
‘Mum says is miserable at home. Throughout this long consultation,
Christina was happy and playing in the room. Looks well. Further
reassurance.’
The account of the mother is framed as that which, a non-medical
professional says and is juxtaposed with what a medical professional
sees and knows
Accounts of disabled family life may appear are skewed towards a
particular bias of the authors, most often the tragic, on occasion the
joyous. In this paper we see growth, transformation and struggle:
‘Chrissy’s two siblings were forced to grow up more quickly than their
peers because I expected them to make allowances for her. Being
younger, they saw odd behaviours and extremes of emotions that they
could not understand. It scared them and, as they grew older, they
resented her, and were embarrassed and bewildered by her behaviour.’
This story of struggle includes the endeavor to receive an accurate
diagnosis for a daughter. The passages on this search for diagnosis are
particularly interesting, for example in their reflecting on diagnosis in
the context of time:
8
‘I wondered if I would have enjoyed Chrissy more when she was little
had I known that she had learning disabilities, autism and a rare
chromosome disorder.’
‘However, discovering the cause of Chrissy’s difficulties so late in her life
is not as important to me now as it would have been in the early years
when support was scarce and I had fought to get health professionals
to even acknowledge Chrissy had a learning disability.’
The autism industry (Runswick-Cole, Mallett & Timimi, 2016) harries
parents to seek new ‘treatments’ for their children; instilling the notion
that one can never be quite good enough a parent. There is always
something one hasn’t tried… The child has failed to attain the ableist
ideal (Campbell, 2009) of the narrowly defined economically productive
independent, enterprising, resilient and flexible neoliberal citizen and
so by association has the parent. The sheer desperation experienced
can lead to unproven treatments being tried as the paper notes:
‘A third of parents of autistic children have tried unproven alternative
treatments in their search for a cure and one in nine has used what
medical experts class as a potentially harmful approach.’
(Levy, Mandell, Merhar, Ittenbach & Pinto-Martin, 2003; Gregory, 2010)
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PARENTING CHRISSY | FoREWoRD
In sum
We do not have to wait for the large funded studies - the randominsed
control trials and proclamations of privileged institutions to create and
share new knowledge about disabled lives:
‘New psychological knowledge about people with learning disabilities
and their families emerged from this study, which contributes a more
contextual exploration of our taken for- granted assumptions about the
lives of parents of children with learning disabilities, and explores selfemancipating possibilities.’
However, in the journey from asking ‘why?’ to knowing, chasing after
‘fixes’ and then discovering the possibilities of policy changes the word
‘psychological’ somehow seems inadequate; too small a thing, too
individualizing, certainly too apolitical to encompass what the paper
describes. In this paper we are shown the complexities and struggles
of a real life. A real life example of how systems can nullify policy made
with good intentions, yet how policy terms such as ‘inclusive’, ‘person
centered’ and ‘personalised’ really do matter and can make a difference
to the lives of person with intellectual disabilities and their families.
The paper is a journey through the hazards of the health and social
care systems, the standoffs between agencies and egos, the hazards
of the psychiatric profession – its diagnostic categories in flux and
the medication handed out with such seeming ease and certainty - as
well as the profiteering providers of services such as Assessment and
Treatment Units and the autism industries parental prescriptions and
ever changing ‘cures’.
The journey described is both unique and reflects experiences and
structures that are not new to those of us who work in services. We
know of them. We know that change is required. We know that parents
and their disabled children are often struggling in confusing and bizarre
bureaucratic systems on the one hand and pressured by the disability
cure industry on the other. For those us working in these services this
paper walks us through this landscape giving us a deeper insight into
what kinds of experiences we are fostering.
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PARENTING CHRISSY | SUMMARy
Summary
This autoethnography explores my journey as a mother of a woman
with intellectual disabilities whose complex needs and behaviour has
presented significant challenges to services. My biographical accounts
include the experiences of receiving my daughter’s diagnoses of a rare
chromosome disorder and autism in her adulthood. The former allowed
a unique story which emerged from phenomena that is being swept
in by the tide of the technological revolution in the detection of gene
mutations and structural genomic variations causing learning disability.
Within the theoretical frameworks of critical disability studies, social
constructionism and family systems approaches, I weave 31 years
of autobiographical accounts with cultural and structural factors
that influence the experiences of parents of children with learning
disabilities.
Included in the investigations were the uncovering of new knowledge
about the culture of intellectual disability and an examination of
the events leading up to my daughter’s four-year incarceration in
an institution. Evidence of oppressive, dehumanising social policies
and practices intersect with new themes, including the journey from
asking ‘why?’ to knowing, and chasing new ‘fixes’ to the liberating
possibilities of policy changes and transformative validation.
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PARENTING CHRISSY | INTRoDUCTIoN
Introduction
The life history approach is being adopted by many researchers
to explore the socio-political circumstances and historical context
in which our professional life and work is located (Short, Turner
and Grant, 2013) . A researchers search for the generalisable and
the universal runs the risk of relegating the unique experiences
of families to the status of marginal knowledge . Individuals with
learning disabilities and their families should be considered
experts on their own lives and, as a qualitative research method
which is often used in disability studies and family studies,
autoethnography lends itself to reaping new knowledge from
their personal narratives . Moreover, autoethnographical
methodology confers validity to our experiences in terms of
their cultural situatedness and offers a challenge to mainstream
qualitative research practices, which can be characterised by
normative assumptions and oppressive institutional rules (Short
et al, 2013) .
Autoethnography gives my daughter and I voices within the disability research process
(Muncey, 2010) and allows someone who has frequently been bureaucratised by disability
services and experts into invisibility (Short et al, 2013) to be seen and embodied within
the theory and research. It has the potential to expand on and challenge existing themes
in learning disability studies, i.e., parental satisfaction with services (Law et al., 2003),
stress (Willingham-Storr, 2014), family adjustment (Goodley and Tregaskis, 2006; Helff
and Glidden, 1998), disappointment and fear of ‘letting go’ (Zibricky, 2014), pioneering
families (Mansell, 2010), grieving (Bristor, 1984; Greene, Neal, Newey, Wraith and
Vellodi, 1992) and coping (Kenny and McGilloway, 2007; Feldman et al., 2007; Zibricky,
2014), and to contribute towards freeing the thinking and practices of professionals
that work with people who have intellectual disabilities from the old binary of medicalsocial model. Autoethnography adds to the methodology of disability scholarship;
however detractors view it as self-indulgent, superficial and navel-gazing (Muncey, 2010).
Proponents suggest that autoethnography allows evocative and emotionally resonant
connections between the researched, researcher and readers to replace the privileging of
the distanced spectator and disinterested ‘objective’ instruction (Bochner, 2001; Short et
al., 2013) and cultivates learning and growth from reflexive storytelling (Berry and Patti,
2015).
Locating my narratives within theoretical frameworks of critical disability studies,
family systems and social constructionism opened up the possibility of questioning our
taken-for-granted assumptions about the lives of families like ours. Critical disability
studies (Goodley, 2013; Meekosha and Shuttleworth, 2009) allowed critiquing their
oppression and marginalisation, an examination that was enhanced by contextual
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PARENTING CHRISSY | INTRoDUCTIoN
14
exploration of the wider networks from which Chrissy and I hail by threading in family
systems theory (Haydon-Laurelut and Nunkoosing, 2010; Galvin, Dickson and Marrow,
2006; Yerby, 1995). The additional challenge to traditional psychological theories that
assume ‘facts’ can be collected through neutral objective observations (Rapley, 2004)
was offered by the alternative psychological research and theoretical approach of social
constructionism. However, viewing people with learning disabilities through the lens
of their family members may be restricted by our own social constructions. We each
get in the way when we develop hypotheses about why something is happening in a
person’s life; perhaps, thereby, as parents, we may protect ourselves from the pain of
really knowing what our loved one is experiencing. Davis’s (2000) paper addresses the
issue of ethnographic researchers in disability studies privileging their own knowledge
claims over that of disabled people and explores complementary ways in which additional
research strategies can contribute to the conditions within which self-emancipation
flourishes.
I am one of a growing number of parents who contribute to understanding of the lives,
experiences and support needs of families who have members with intellectual disabilities
by writing biographical accounts of their experiences for book publishers, i.e., Moore
(2012) and Daly (1992). “When it comes to human lives, storytelling is sense-making,”
succinctly describes the power of biographical accounts to family identity and meaning
making (McAdams, Josselson and Lieblich, 2006, p. 76). My stand-alone narratives
about challenges only faced by families that include someone with a disability have been
published during my writing career, which include a self-help for parents book (Gregory,
2000), a chapter in a medical journal (Knight, 2010), a blog and magazine/newspaper
articles (Gregory, 2013), and a campaign report (Mencap and the Challenging Behaviour
Foundation, 2012).
However, this study aims to move beyond personal experience in order to
comment first-hand on the larger social, cultural and structural factors that influence
the experiences of parents of children with learning disabilities. As such, this
autoethnography may play a role in promoting political enquiry (Short et al; Denzin,
2006; Ellingson, 2006; Ellis et al., 2007; Spry, 2001) and informing new ways to support
families of individuals with complex disabilities whose behaviour presents a challenge to
services, and put my experiences, as a parent, and Chrissy’s experience, as a daughter with
complex disabilities, at the centre of family and disability research.
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PARENTING CHRISSY | METHoD
Method
Here I outline some of the key elements that make up the
method applied to this research .
Ethics
There were no significant ethical issues in this study and I dealt with any routine ethical
issues in accordance with the British Psychological Society’s Ethical principles for
conducting research with human participants. In considering the ethics of involving
someone who lacks capacity to give or withhold consent, I concluded that, for someone
who will never be able to express herself in a way that others can understand, this study
was Chrissy's best chance at having a voice. This research was approved by Portsmouth
University’s Department of Psychology’s Ethics Committee.
Materials
The type of data collection included the use of relevant content from my book about
my experiences of bringing Chrissy up, my chapter in a medical journal, book reviews,
my blog (including my other daughter, Alex’s, blog post about life with her sibling),
health and social care records, correspondence from solicitors, MPs, learning disability
charities and professionals who have been involved in supporting Chrissy and I, emails
from other parents of children with disabilities, personal emails and journals, a transcript
of a personal interview with my Project Supervisor, Chrissy’s person-centred plan and
behaviour guidelines, and magazine/newspaper articles that I have written (Gregory,
2000; Knight, 2010; Gregory, 2012, Gregory, 2013, Gregory, 2014).
Design
Drawing on my other non-academic writing and examining it with a research gaze
produced a richer, more nuanced perspective from the one I was accustomed to in my
persona as a journalist. The research design and methodology allowed a detailed analysis
of my personal accounts and enabled the meaning I derived from them to be captured
as it was without attempts to influence outcomes from the emergence of experiential
themes that were explored. Furthermore, the interview by my Project Supervisor allowed
recursive and open-ended questions to enable expansion and clarification of information
that I had already provided and responses that revealed new, original topic areas which I
had overlooked or not considered.
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PARENTING CHRISSY | METHoD
Procedure
From the data collected, I compiled a chronology of narratives, stories and reflections
which I felt were most relevant to the aims of the study. To analyse the data I used
qualitative research methods of Thematic Analysis (Braun and Clarke, 2006) because it
is flexible and responsive to capture the meaning of, or simply to understand more about
research participants’ lived experiences. Braun and Clarke show how thematic analysis
can tell an interpretive story of the data collected and give examples of good research
policy principles. Thematic analysis allowed me to compare and contrast each narrative
in its own right. To keep an open mind and to minimise the risks of deriving data and
weak themes from pre-conceived theories, I wrote a reflexive journal and drew from the
literature on families and parents who had a member with an intellectual disability.
Findings and Discussion
16
New psychological knowledge about people with learning disabilities and their families
emerged from this study, which contributes a more contextual exploration of our takenfor-granted assumptions about the lives of parents of children with learning disabilities,
and explores self-emancipating possibilities. Due to word count limitations I will focus
on the themes that reap the most new knowledge from analysis of the personal narratives
included in this study: the journey from asking ‘why?’ to knowing, and chasing new ‘fixes’
to the liberating possibilities of policy changes and transformative validation.
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PARENTING CHRISSY | THE JoURNEy FRoM ASKING ‘WHy?’ To KNoWING
The journey from asking
‘why?’ to knowing
The theme of the long wait for a diagnosis and the difficulties
resulting from delays in a child receiving this diagnosis is
examined in this study and is reflected in Bourke, Snow, Herlihy,
Amor and Metcalfe’s (2014) qualitative exploration of parents’
experiences of having a child with a common genetic condition .
As a young, first-time mum, I fought to get medical professionals to take my concerns
about Chrissy’s general health and the possibility of her having learning disabilities
seriously. In infancy, she struggled to draw milk as her suck was weak, and she vomited
after feeds. Chrissy was labelled at her six-week baby clinic check as ‘failure to thrive.’
During her first year, I was also told that she had ‘head lag’ and ‘delayed development.’
These were three of many confusing terms that professionals used then. I had no idea
how significant these early signs were – just a gradual, chilling realisation that something
was wrong.
Over time, such jargon became part of my daily vocabulary; the more complex a
person’s needs, the more jargon attaches itself to that person, like excess baggage. Jargon
is discourse that tells us something about what (and how) these authorities think about
people who depend on their competencies. It relates to the deficit model of disability,
which conceptualises people with learning disabilities in terms of their associated
conditions (Goodley, 2007) and is reinforced by the different identities and labels that
they may acquire over time. Three decades ago the labels ‘mentally handicapped’ and
‘retarded’ were used to describe Chrissy. Since then she has acquired a host of others,
including ‘complex needs,’ ‘active but odd autism,’ ‘trunkal obesity,’ ‘moderate to severe
learning disabilities and ‘challenging behaviour.’ However, despite the stigmatising
implications of labels (Goffman, 1968), when Chrissy was a child I constructed that her
impairments could be amended with a diagnosis, which (I perceived) would also dispel
the ambiguity around her developmental potential.
When Chrissy was in hospital after developing seizures, I asked a paediatrician: “Is
she going to be mentally handicapped?” “There’s a possibility she could be retarded, yes,”
he replied briskly. Before I could ask him to elaborate, he turned on his heel and left to
continue with his ward round. My bewilderment extended to Chrissy’s seizures; it was
only when I scoured the library for information on epilepsy that I learned they are usually
self-limiting – no interventions were needed.
Furthermore, the associated non-physical features related to our child’s condition are
often not picked up (Bourke et al., 2014). When I saw our GP about Chrissy’s behavioural
outbursts that were so at odds with her ‘other’ charming, sweet-natured side, he wrote in
his notes: “Mum says is miserable at home. Throughout this long consultation, Christina
was happy and playing in the room. Looks well. Further reassurance” (Gregory, 2000, p.
14).
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18
My feelings of frustration at not being listened to and confusion over ambiguous
answers persisted throughout early communications with healthcare professionals. Now I
can understand their ‘wait and see’ approach. What if they got it wrong?
My search for answers kept hope alive but it contained disempowering elements for
Chrissy because it focused my gaze on her impairments instead of her qualities and
strengths. I constructed a ‘warrior mum’ identity (Daly, 2014), which may have been my
way of expressing grief over the loss of my “dreamed-of infant” (Bristor, 1984, p. 25). My
grief was not so much from having a child with a learning disability but the suffering and
difficulties that Chrissy experienced as a result of it.
I perceived that Chrissy’s lack of a medical label was unusual and that other mothers
I met knew what had caused their child or children’s disabilities. Furthermore, while I
recognised the wide disparity between abilities and characteristics of children whose
learning disabilities originated from an identifiable cause, I envied parents who could
join support groups specific to their child’s condition and constructed that they would
feel less isolated due to a sense of belonging and solidarity with other parents. Giving a
name to your child’s condition may also give an indication of how your child may develop
and help you to explain to others what is wrong (Gregory, 2000). I felt like an imposter.
I did not feel as if I fitted in with mums who had typically developing children either.
Although until Chrissy was around six years old, she did not ‘look’ disabled, only younger
than her years, all her developmental milestones were delayed, particularly her language
development.
Around 40 per cent of all disabled children have no diagnosis for their condition
(Smellie and Gregory, 2012). However, the diagnosis of a genetic condition has relevance
for the wider family and it is natural to want to know the cause of your child’s disability
(Menday, Partridge and Shelley, 1997). Grief starts from the moment of diagnosis
(Greene, Neal, Newey, Wraith and Vellodi, 1992) and, without a diagnosis, you can feel in
limbo, trying to come to terms with what is happening and unsure about what the future
holds for your child and the rest of the family. Parents often worry that their child will be
deprived of appropriate services because they have no medical label.
The identity deficiency construct that I attributed to the absence of a diagnosis resulted
in me feeling ‘blamed’ by others (professionals, family and other parents) for Chrissy’s
behavioural difficulties, which included unpredictable behavioural ‘meltdowns’ that could
last up to two hours at a time. Galvin, Bylund and Brommel (2004) describe a sibling’s
account of his brother’s school teachers attributing his genetically inherited hyperactive
behaviour to his parents’ discipline style. This highlights a limitation with systems theory,
which tends to overlook individual issues, such as the biological components of problem
behaviours, and attribute them instead to troubled family relationships (Broderick, 1993;
McCroskey and Meezan, 1997). However, theorists argue that systemic approaches can
be aided by individual approaches that recognise such underlying neurobiological traits
(Beatty, McCroskey, and Heisel, 1998). The power/knowledge promise that lies behind
the practice of medical classification confers identity and provides legitimacy for the
challenges that Chrissy’s behaviour presented with (Foucault, 1965; Gregory 2000). The
parents’ relief when a diagnosis confirms that their concerns were not unfounded is also a
finding in Bourke et al.’s (2014) study.
At one point during my journey I sank into depression. I was divorcing my children’s
father and my own father was diagnosed with premature Alzheimer’s disease at the age of
50; for a time, my extended family and I were too depleted by our own challenges to offer
each other much support.
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PARENTING CHRISSY | THE JoURNEy FRoM ASKING ‘WHy?’ To KNoWING
Families do not exist in a vacuum or as individual components; they are part of a wider
context of interconnections, or an ecosystem, that influences their life course (Galvin,
Dickson and Marrow, 2006; Yerby, 1995). When Chrissy was a child we experienced
failings in the older models of family support which only considered component parts
in isolation from the family system as a whole, for example, the need for respite care so
the rest of the family could have a break with no consideration given to offering positive
behavioural support to help with the challenging behaviour that had brought the family
to breaking point. From a systems perspective, “decontexted individuals do not exist”
(Minuchin, 1984, p. 2). In McGill, Papachristoforou and Cooper’s (2006) study, respite
services are rated as the most helpful forms of support for families with a member who
has behaviour that challenges services but, as Chrissy grew bigger and it proved more
difficult to cope (Kenny and McGilloway, 2007), her respite allocation shrank. The
number of hours I received to help me at home with Chrissy during school holidays
were halved when we moved to another county; the council said they did not have a big
enough purse. It was not my first experience of the postcode lottery of care (Watson,
Townsley and Abbott, 2002).
I strived to make everything look good on the outside but it got harder to take Chrissy
out in public as she grew, which took the spontaneity out of family life. Outings and
simple shopping trips often ended in chaos. People’s stares were the least of my worries
– I got used to it. Chrissy’s two siblings were forced to grow up more quickly than their
peers because I expected them to make allowances for her. Being younger, they saw odd
behaviours and extremes of emotions that they could not understand. It scared them
and, as they grew older, they resented her, and were embarrassed and bewildered by her
behaviour.
During my two subsequent pregnancies I had no concerns about having another baby
like Chrissy because there was no suggestion of a genetic cause to Chrissy’s disability. At
the time. I attributed Chrissy’s difficulties to my protracted labour, although the birth
itself was relatively uncomplicated.
Both children quickly caught up with Chrissy in terms of size and development. I was
in awe of what babies do naturally. When Chrissy was four and her brother, Jamie, was
two, they were frequently mistaken for twins. Many people were amazed when I said that
there were 19 months between them.
After Chrissy was diagnosed with a rare chromosome disorder when she was 22
years old, then with autism a year later, I felt guilty that I had responded to her difficult
behaviours similarly to those of her siblings - as naughtiness. The altering of parenting
strategies after a diagnosis – how they treat some behaviours differently because they
know it is not just their child being naughty is another story that emerged from Bourke
et al.’s (2014) study. I wondered if I would have enjoyed Chrissy more when she was
little had I known that she had learning disabilities, autism and a rare chromosome
disorder. “Individuals make sense of their experiences through reflecting on their
specific circumstances and in line with the expectations through prevailing cultural
norms” (Furedi, 2007, p. 237). If I had expected less perhaps I would not have pushed so
hard to influence the progression of Chrissy’s development to fit her into my idealised
constructions of family life.
I first explored the possibility of Chrissy having autism with her paediatrician when she
was eight years old. He said: “She doesn’t have autism - she’s verbal and autistic children
can’t speak.” Two years later, I queried it again and was informed that there was “no
evidence of autistic features in her social communication and interactions.”
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Chrissy received an autism diagnosis from a clinical psychologist in her Community
Learning Disability Team, which was confirmed by Lorna Wing at the National Autistic
Society. Her autism was categorised as ‘active but odd’ (Bonde, 2000). Three years later, a
consultant psychiatrist from the Maudsley Hospital used what he described as “the goldstandard test for the developmental features of autism spectrum disorder” and confirmed
that Chrissy had ‘childhood autism’ (Schopler, Van Bourgondien, Wellman and Love,
2010).
Chrissy is unable to describe her experience of autism first-hand but Hughes (2012), an
autoethnographer with Asperger’s Syndrome, allows us to gain an insight of what it is like
to live with its lifelong effects. His exploration of his ‘Asperger’s Self ’ includes examples of
his confusion around communication ‘rules’ in social situations and how he viewed the
syndrome as “an annoying person that never leaves you alone” (p. 96).
Views of the nature of autism have evolved and changed since Kanner (1943) published
his first description of a unique and specific autism spectrum syndrome that bears his
name (Wing, 1988). Over the past six years there has been a rise of an estimated 78 %
in the rates of autism diagnoses. Greater awareness (including the heightened influence
and availability of the internet) and improved screening and detection may partly explain
this finding. However, whether there has also been a true increase in the incidence of
autism is unknown (Baron-Cohen et al., 2009; Dawson, 2013; Pellicano, Dinsmore and
Charman, 2014; Lilienfeld, Marshall, Todd and Shane, 2014), not least due to limitations
of epidemiological research. For example, both Pellicano et al. (2014) and Baron-Cohen
et al. (2009) recognise that their methodologies made it difficult to generalise findings to
the wider community of people with autism. I attributed Chrissy’s late diagnosis of autism
to changes in the diagnostic criteria (Wing and Potter, 2002).
After years of searching, I had resigned myself to never discovering a cause for Chrissy’s
difficulties. Indeed, writing my book (Gregory, 2000) had helped me to value Chrissy’s
uniqueness and made her feel even more special to me. Her genetic diagnosis came via
a letter from the Genetics Unit of one of the world’s leading children’s hospitals, Great
Ormond Street in London, stating that they believed Chrissy’s problems were caused by a
de novo (not hereditary) microdeletion of chromosome sub-band 1q21.1. Findings from
a research project we had taken part in while she had been a patient there had belatedly
yielded results via new genetic testing technology. I was excited about the possibility of
finding answers and relieved that there was no change in the recurrence risks. However,
Chrissy’s microdeletion has such variable effects that no prenatal genetic tests could have
predicted the severity of her problems; they only became increasingly apparent as she
grew older.
A medical label conferred in adulthood would only have made a significant difference
in Chrissy’s life if it had indicated a predisposition to a serious health problem that could
be treated or prevented by early intervention. The research findings did lead to Chrissy
having ultrasound scans to check for heart and kidney abnormalities on the advice of
her geneticist; the results were normal. The findings made a difference to my life in terms
of getting in touch with other parents to share experiences. I have met other families
whose children have rare chromosome disorders through the support group, Unique
(www.rarechromo.org) (Gregory, 2012; Gregory 2013). Unique put me in touch with
other families worldwide whose children had the same genetic condition as Chrissy.
We share information and take part in research projects whose aims are to broaden
existing knowledge about this newly identified rare chromosome disorder, and I set up
the Facebook group, ‘1q21.1 microdeletions and microduplications.’ My story about our
genetic breakthrough ran in the Daily Mail newspaper on Boxing Day 2006. Furthermore,
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10 years after my book was published (Gregory, 2000), I was able to reflect on ways in
which my view of our experiences had changed. My ‘Parent’s Perspective’ was the opening
chapter in a medical journal (Knight, 2010) and I started blogging about life with Chrissy
http://jgregorysharingsstories.blogspot.co.uk/
Discovering the cause of Chrissy’s problems gave me closure after all the years of
wondering. It also helps me to tell people that she has a rare chromosome disorder
– and what that means for her; 1q21.1 microdeletion is linked to neuro-psychiatric
problems, which, added to her autism diagnosis, helps to explain why her behavioural
challenges remain so resistant to interventions. Now, we have a better idea of what we
are dealing with, it may ultimately help us to understand her complex needs better and
more information may emerge as research on 1q21.1 microdeletion progresses. However,
discovering the cause of Chrissy’s difficulties so late in her life is not as important to me
now as it would have been in the early years when support was scarce and I had fought to
get health professionals to even acknowledge Chrissy had a learning disability.
“Leave off that excessive desire of knowing; therein is found much distraction.
There are many things the knowledge of which is of little or no profit to the soul.”
(Thomas à Kempis, 1842, p. 5).
The findings that emerge from this theme demonstrate the importance of good quality
medical, psychological and social support that places the person with learning disabilities
and their family at the centre of decision-making. Moreover, increased detection of rare
genetic disorders improves the possibilities of diagnosing previously unexplained causes
of learning disability (Firth and Wright, 2011). These findings suggest the theme requires
further exploration and a more in-depth examination in studies with an appropriate
sample of parents.
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PARENTING CHRISSY | CHASING NEW ‘FIxES’
Chasing new ‘fixes’
The theme of chasing ‘fixes’ for Chrissy’s impairments emerges
from the previous theme of the ‘journey’ in terms of always
looking for new ways to help your child . A parent’s experience of
always looking out for something she could do to help her child
is another one that is referred to in Bourke et al .’s (2014) study .
22
Examples of new ‘fixes’ that drew my attention were the gluten-free and casein-free diet,
which held the promise of fixing my child ‘naturally’ without toxic drug treatments. I
also wasted time researching treatments including vitamin therapies, special diets and
environmental medicine in the hope that it might help her but, as Chrissy has a history of
adverse reactions to several mainstream medications, I feared alternative therapies could
cause more harm than good.
A third of parents of autistic children have tried unproven alternative treatments in
their search for a cure and one in nine has used what medical experts class as a potentially
harmful approach (Levy, Mandell, Merhar, Ittenbach and Pinto-Martin, 2003; Gregory,
2010), i.e., chelation therapy - injections intended to purge the blood of heavy metals,
a treatment which resulted in the death of a five-year old boy with autism, Abubakar
Nadama from Somerset in 2005 (Calman, 2008). It is easy to get sucked into the huge
autism industry that feeds on families like ours, and seductive fad autism treatments and
psueudoscience can give parents false hope (Lilienfeld et al., 2014).
I often felt guilty that I wasn't doing enough to help Chrissy, and badgered her doctors
to review her medication. A medication overhaul that Chrissy received in hospital when
she was 14 years old transformed her behaviour and her quality of life. However, a decade
later, life-threatening side-effects that affected Chrissy’s blood-platelet count prompted
further medication changes, which resulted in her psychiatrist prescribing antipsychotics.
The side-effects from antipsychotics included drooling stupors that stripped away
Chrissy’s personality, a worsening of her behaviour and epilepsy, and acute dystonia.
Her psychiatrist told me that the side-effects I listed were just ‘Chrissy.’ I disagreed
and reported that Chrissy had suffered from similar side-effects when antipsychotics
were prescribed during her early teens. Nevertheless, he defended the ‘newer,’ ‘safer’
antipsychotics Chrissy was taking.
For the next five years, Chrissy’s epilepsy and behavioural ‘meltdowns’ deteriorated to
such a point that her quality of life was non-existent and she was forced out of two group
homes within a year. She was denied the psychological support that her psychiatrist had
referred her for due to a complex five-year funding dispute involving National Health
Service (NHS) Continuing Healthcare and three local authorities – until I approached
the local press with the story. Not only was the ‘ordinary residence’ issue being disputed
(Gregory, 2012; Faulkner, 2011) but also whether Chrissy’s behaviour was of a ‘nature,
complexity, intensity and unpredictability’ that warranted a primary health need
(Gregory, 2013).
Atkin (2010) describes the complexities involved in reaching agreement on eligibility
criteria for continuing healthcare funding for people with learning disabilities. The NHS
continuing healthcare stakeholders vacillated between constructing ludicrous counter
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arguments (i.e., that Chrissy’s behaviour was predictably unpredictable) or simply
ignoring my communications. I never knew where I was with them. Behind the premise
of ‘not us!’ each party (who professed to be caring) constructed knowledge claims about
Chrissy based on their own self-serving agendas. Chrissy was discussed as a financial
burden that the Primary Care Trusts wanted to unload. A disabled person had become
a battle ground for their egos and vested interests; they each took opposing ‘taken for
granted’ positions; the NHS continuing healthcare fundholders polemicised ‘the problem’
from the social model (broken society) of disability (Oliver, 1986) and the local authority
polemicised it from the medical model (broken person) (Shildrick and Price, 1996). Both
these models have disempowering implications for practice because they seek to explain
disability universally in a way that excludes its complexity and the important dimensions
of disabled people’s lives (Corker and Shakespeare, 2002). Moreover they do not take
into account the needs of the individual, as described in Valuing People (Department of
Health, 2001 and 2009).
These events raised concerns about the extent to which our practices promote the
status quo rather than seeking to promote social justice (Nunkoosing, 2000). They fit
with the materialist world view that the professional is exonerated from responsibility if
an individual with learning disabilities fails to engage with, or live up to, professionally
determined strategies (Oliver, 1999) and that the professionals only view behaviour
positively if it fits with their perceptions of reality (Oliver and Barnes, 1993).
I was desperate for Chrissy to be safe and constructed that the life-transforming ‘fix’
from the two-week hospital stay during her teens could be replicated by her incarceration
in an assessment and treatment unit (ATU). To an extent it was - except it took four years
longer to achieve. ATUs may be run privately or by the National Health Service (NHS)
and provide interventions in a therapeutic environment for people who have a learning
disability and behaviours that are deemed too challenging to be assessed and treated
safely in community based settings.
Chrissy was eventually assessed as needing an emergency admission to hospital but,
in order to disentangle the bureaucratic web of different agencies and their respective
responsibilities, we had to find a suitable ATU ourselves and engage a solicitor to secure
her admission.
The ATU was happy to sell me a dream, just as Chrissy’s previous group homes had, but
then I was willingly seeking this dream - that professionals there would work together
to sort out her medication. However, like many other ‘fixes’ that I chased, it came with
its own set of problems. The ATU was neither person-centred nor family-centred (Law,
Hanna, King et al., 2003), nor did it facilitate inclusion (Department of Health, 2001 and
2009; Mencap, 2014). People with learning disabilities and challenging behaviour are
frequently treated out of area (Vaughan, Pullen and Kelly, 2000; Vaughan, 1999; Kearns,
2001; Reed, Russel, Kiriakos et al., 2004). Moreover, the ATU employed disempowering
practices typical of total institutions (Goffman, 1968), such as restrictive, undifferentiated
environments aimed at containing those who presented with the greatest risk. Individual
needs are not taken into consideration in ATUs. Chrissy was on a locked ward and had
to use plastic cutlery despite the fact that she was not sectioned, is not an ‘escaper’ and
uses metal cutlery safely. Some rituals, like eating, have to be ‘just so’ in Chrissy’s world,
and such general service-led issues intensified and triggered her challenging behaviours
(Gregory, 2011). Furthermore, Chrissy received unexplained bruising on her neck there,
which prompted a safeguarding investigation. As a result the ATU came under scrutiny.
However, Chrissy’s injuries were eventually attributed to self-injurious behaviour.
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PARENTING CHRISSY | CHASING NEW ‘FIxES’
A year after Chrissy left, the ATU came under fire in the press for failing all the
standards set by the Care Quality Commission, including the one to prevent abuse (Care
Quality Commission, 2012).
However, despite its problems, the ATU, paradoxically, empowered Chrissy by
removing the disempowering funding agendas and professional vested interests that had
been in place (Nunkoosing, 2000). The taken-for-granted knowledge that professionals
had constructed about Chrissy during the years preceding her incarceration had
maintained their professional dominance (Foucault, 1965) but now this was being
challenged by another group of professionals. The knowledge gained in an institution
enabled Chrissy by informing a discharge plan that provided indisputable evidence of her
complex support needs, unclouded by funding agendas.
Undercover filming in a BBC ‘Panorama’ television programme revealed a pattern of
abuse at an independent hospital called ‘Winterbourne View.:
“I watched the programme through my hands in some parts, and switched off in
tears when it panned in on a vulnerable young woman left shivering outside on
the ground after being repeatedly doused in cold water by her so-called ‘carers’”
(Mencap and the Challenging Behaviour Foundation, 2012, p. 19).
24
In his article about what went wrong at Winterbourne View, Oakes (2012) tells men
and women like Chrissy: “You are never to be beautiful and certainly must not become
powerful” (p. 2). So what are our assumptions about this sub-group of people with
intellectual disabilities that makes us want to contain them and pretend they do not
exist, who not only look different to us but who also display behaviour that we may find
repellent?
The answers may lie within wider studies about the appearance of disability in
contemporary Western culture as ‘trouble’ (Michalko, 2009). We have a sense of what
is a socially acceptable range of human variation, the process of ‘norming’ (Davis,
1995). Myers, Ager, Kerr and Myles (1998) question the notion of the ‘normative’ as a
“desirable goal and a measure of achievement” (p. 5). Amado (1988) cited by Chappell
(1992) states: “We try to fit people into existing structures, rather than evaluate what is
wrong with a social system that does not accept someone as he or she is” (p. 10). We have
expectations about what we, ourselves, and other human beings should look like and how
we should act. Society’s most disabled people, which includes people with profound and
multiple disabilities, as well as those with learning disabilities and behaviour described as
challenging, reflect extremes of that normative spectrum. I suggest that they are therefore
more ‘trouble’ for us than other people with learning disabilities that ‘play along,’ who,
Oakes says: “will always dance for the powerful ones.”
As Winterbourne’s legacy continued, Chrissy’s experiences in an ATU were validated
by media reports that uncovered the extent to which people with learning disabilities
and behaviour described as challenging were being detained in these units (Woolf,
2014). Those with the most complex needs who require the most specialised services
are at greater risk of experiencing crisis situations that result in admissions into ATUs
(Mansell, 2006). Furthermore, the government’s pledge to discharge people with learning
disabilities who remained inappropriately in secure hospitals by 1 June 2014 was not
honoured. The Winterbourne scandal shone a light on some of the practices that go on
behind the locked doors of ATUs. These units are run as total institutions, similar to
the long-stay hospitals that were closed during the 1980s, which was meant to herald
a new era of social inclusion for people labelled as learning disabled. The resulting gap
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in the market provided a lucrative business opportunity and a number of independent
hospitals financed by private equity companies were set up. A report commissioned by
NHS England (2014) calls to an end for the system where these independent hospitals
are financially incentivised to keep patients in for as long as possible. However, despite
levying charges of up to £3,000 a week per patient, basic standards of good practice
are proving remarkably difficult to maintain in many of these services (Oakes, 2012).
Another report commissioned by NHS England (2015) concerns the widespread
inappropriate use of antipsychotics and other drug treatments used to treat mental illness
that are prescribed so routinely for people with learning disabilities (Gregory, 2010).
This report validates my arguments against the one-size-fits-all use of antipsychotics for
individuals with learning disabilities.
The funding dispute continued while Chrissy was in the ATU, which made it difficult
to move forward as no one would take responsibility for discharge planning. We engaged
another solicitor - plundering the public purse to get Chrissy into an ATU as well as out
of one.
Mencap and the Challenging Behaviour Foundation included Chrissy’s story in their
Out of Sight report (2012). They were interested in why she was stuck in an ATU and the
claim by the Primary Care Trust, which was funding her incarceration ‘without prejudice,’
that there was no local provision which could meet her needs.
This theme reflects the personal tragedy approach to disabilities that had underpinned
much of social policy and practice up until the 60s and 70s (Oliver, 1986). However, the
‘fixes’ that we seek as parents also need to be considered in terms of attempts to relieve
our child’s suffering rather than ‘norming’ (Davis, 1995). Parents want to do whatever
they can to help their child. The ATU was Chrissy’s best chance and sometimes that
is all any of us have. The interventions and support Chrissy needed should have been
available in her local community but they were not. From a family systems perspective,
improvements resulting from the individual component ‘fixes’ I had chased were shortlived; wider networks of person-centred, interconnecting support offered something
more robust and enduring that liberated her and her family.
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PARENTING CHRISSY | LIBERATING PoSSIBILITIES oF PoLICy CHANGES
Liberating possibilities
of policy changes
The Government’s personalisation agenda offers people with
a learning disability and their families greater choice and
control over their lives, which include more opportunities for
community-based living . Chrissy had previously been denied
these citizenship-promoting policy changes as she had been
expected to fit in with the services that were available . However,
she faced considerable barriers in taking advantage of the new
policies . As well as the discharge planning delays, we were told
that there was insufficient funding to staff the supported living
service she needed and a lack of suitable housing .
26
I went to battle again, lobbying MPs and contacting learning disability charities. Due
to experiences in my early life, I had developed a ‘stand up for yourself or be crushed’
approach to challenges, which undoubtedly helped me to advocate for Chrissy. While
I am fortunate to have had so many opportunities to write about our experiences with
Chrissy, where my writing has been most prolific has been in my never-ending struggles
to find her good, safe, compassionate care. In 2010 Raising our sights (Department of
Health) Mansell states that only by the efforts of their pioneering families, who had to
overcome discrimination, prejudice, and low expectation, did we start to hear about
how people with more complex and severe disabilities manage to make the most of the
opportunities presented by the government’s personalisation agenda. Policy makers
and academics ignored people with more complex needs due to a lack of understanding
about what can be achieved and to assumptions that they could not make decisions
or live empowered lives (Mansell, 2010). Moreover, barriers that people with learning
disabilities in general encounter, such as prejudice and difficulties with communication,
are amplified in people with more complex needs.
Thanks to our campaigning efforts, stakeholders eventually shelved their funding
differences long enough to act in Chrissy’s best interests to plan her discharge. A personcentred plan (PCP), in all its rich, pictorial and anecdotal detail was developed to give
Chrissy a ‘voice’ (Department of Health, 2009; Gregory, 2011). The PCP also informed
decisions to be made in Chrissy’s best interests that, due to the inter-related complexities
of her mental and physical health, she needed to live on her own.
However, Chrissy’s local area proved too expensive to be viable for the home ownership
schemes that were left after Government cuts in benefits, grants and services, which
Duffy (2013) suggests cost people with severe disabilities 19 times dearer than most other
citizens. Government cuts have further reduced the already limited housing options of
people with intellectual disabilities. Social housing via the local council was Chrissy’s last
hope; they eventually agreed, after further campaigning, spearheaded by her family, that
someone who needed accessible housing to allow a discharge from hospital is counted as
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having an exceptional housing need. In March 2014, Chrissy moved into social housing
near her family, where she now lives alone with full-time support.
Moving into her own home has indeed allowed Chrissy more autonomy and selfdetermination. Furthermore, she receives important benefits from living alone in that,
for the first time in her life, her support is completely personalised. She can have all her
own things around her and any autism-related needs can be met, i.e., the need for her
own space. Crucially, given her history of residential placement breakdowns, she has the
long-term security of her own tenancy.
Our struggles to empower Chrissy to lead as settled a life as possible have been
worthwhile. She now receives pro-active, personalised, collaborative and strength-based
approaches that fit with the needs of her family (Gregory, 2014). My Jane-led, normalising
agenda that had boxed me into bringing Chrissy home for weekly overnight stays so she
could experience ‘family life’ changed after she moved into her own home. Instead of
‘meeting her needs,’ I take her out and enjoy her company for shorter spells, which each
of us can tolerate more easily. Chrissy is now a right-sized part of my life. When she gets
the right care and support, Chrissy can be a delight – funny, joyful and loving, with a
great sense of the ridiculous.
Nevertheless, these changes were hard-won and could not have been achieved without
the efforts of Chrissy’s family. I had been in danger of taking the generalisations and
normalising agenda (Redley, 2009) in Valuing People (Department of Health, 2001 and
2009) too literally. I felt they were politically-correct concepts (Jingree and Finlay, 2012),
to socially construct a form of ‘normalcy’ for all people with learning disabilities based
on universalist philosophies and that they minimise the brutal reality of having a learning
disability for some people. However, I now recognise the liberating effects of citizenshippromoting policy changes.
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PARENTING CHRISSY | TRANSFoRMATIvE vALIDATIoN
Transformative
validation
While the transformational outcomes of having Chrissy
represented ‘true’ deep and lasting changes (Scorgie and
Sobsey, 2000) in some areas of my life, I am not sure that I
would describe them all as positive or inherently negative
(Ferguson 2002; Goodley and Tregaskis 2006; Helff and Glidden
1998; Risdal and Singer 2004; Gregory, 2013) . Some parents
may ascribe greater benefits to having a disabled child as a
coping mechanism but I suggest that causes of parent-reported
benefits are not mutually exclusive; it is human nature to look
for meaning and hope in difficult times .
28
Focusing on our blessings brightens our outlook on life, thereby achieving real and lasting
positive outcomes. I believe that I have become a stronger and more compassionate
person (McConnell et al., 2014) as a result of having a disabled child but any benefits that
I perceive to have gained could equally be attributed to having a child without learning
disabilities, or be ascribed to other non-related challenges. However, as Folkman (2008)
suggests, in terms of stress-processing, it makes no difference if reported benefits are real
or imagined. With regard to the wider family, while I would recognise some benefits over
time, i.e., my youngest daughter, Alex’s, career path as a trainee Educational Psychologist
in autism education and acceptance on a doctorate course, Alex may have made equally
gratifying choices if Chrissy had not been disabled.
Moreover, I can only report the benefits of having Chrissy, not just ‘any’ disabled child.
There is a huge disparity between disabled children and generalising about positive or
negative impacts, even by using variables, is limited by the variables used and the study’s
focus (McConnell et al., 2015). Furthermore, most learning disability research focuses on
mothers.
Families are made up of interpersonal subsystems and each subsystem needs to be
considered if we are to understand the functioning of the whole. Chrissy’s step-father,
Ian, belongs to an even more neglected group in learning disability research than
biological fathers who live within the family home (Gavidia-Payne and Stoneman,
1997; Carpenter and Towers, 2008; Towers and Swift, 2006). Siblings are neglected by
researchers too, and their experiences tend to emerge via their parents (Grant, 2015;
Hames, 2008; Knott, Lewis and Williams, 2007). However, siblings were quoted in a
paper by Sykes (2010), one sibling blogged about her experiences (Gregory, 2012) and
Jones’s (2014) autoethnography is a sibling’s investigation of disability. The experiences
of grandparents are only now emerging in the research (Miller, Buys and Woodbridge,
2011). Furthermore, much research on families tends to focus on those who have younger
children; i.e., Willingham-Storr’s (2014) study about the life-transforming benefits of
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parenting a child with an intellectual disability only includes families who have a disabled
member aged under twenty years. Voices from families who have an older member with
an intellectual disability demonstrate that the need for professional support does not
diminish over time (Suelzle and Keenan, 1981) and McConnell et al. (2014) suggest that
new parent-carers would benefit from meeting and learning from experienced parentcarers about the positive impact their disabled child has had on their lives.
Notwithstanding the childcare challenges of Chrissy’s early years, later on in my life
having a disabled child opened up exciting career opportunities. As a journalist, I covered
a range of subjects but gravitated towards investigating the experiences of other mums
who had fought to get effective support for their child with learning disabilities, and
women’s struggles in life generally, particularly those who had been misunderstood or
defied convention in some way. My personal growth from young, disempowered mum
of a disabled child to acceptance into the world of academe can be tracked through
my public narratives about life with Chrissy. However, when I embarked on the MSc
course, I felt like an imposter again, as I had nearly three decades before around the other
mums who all seemed to have a legitimate reason for their child’s learning disabilities –
comparing myself on the inside with my own construct of how others appeared on the
outside? Most academics (and journalists), I believed, had entered higher education after
leaving school. My taken-for-granted assumptions about higher education were that it
was beyond my reach – especially as I reached my fifties. When I told a friend about this
MSc (The Applied Psychology of Intellectual Disabilities at Portsmouth University) she
encouraged me to apply based on my life experiences. “How can I?” I asked. “I don’t even
have A-levels.” When I was accepted on the course, I asked my soon-to-be tutor: “Don’t I
need to write an essay to prove I’m up to it?” “No,” he said. “You’ve written a book!”
Further education has validated my experiences with Chrissy and empowered me.
I now have a different voice than the one I had in my professional writing career. My
Project Supervisor replied to an email I sent as I worked on this study:
“Jane – I note with glee that you are acquiring the language of ethnography, e.g.
‘cultural situatedness.’ I love it!”
As a method for creating disability and family scholarship, autoethnography overcomes
obstacles, such as the tendency to generalise the experience of disability, which impede
other sociocultural explorations; the experiences of families who have a member with
an intellectual disability are influenced by multiple factors, such as the type of disability,
ethnicity, age and family structure. Furthermore, a wealth of narrative data can be drawn
from the letters that parents receive from professionals which document our child’s
deficits.
My advice to other novice autoethnographers is to explore the autoethnography
literature to see how each different researcher approaches it. Resist the urge to rant, name
and shame or indulge in any narcissistic gut-spilling (or do it for catharsis then edit
ruthlessly); consider instead the cultural situatedness of each story. Do not get distracted
into the story itself but do show off your own messy humanness if it produces a relevant
finding. In terms of transformative validation, the autographical process of exploring
and reframing past experiences can be painful but the learning and growth that ensues is
worth it. Allowing yourself to be interviewed will introduce another person’s perspective
into the research process, which expands on its possibilities.
The findings in this study demonstrate that people with learning disabilities can grow
and change, and that emancipating possibilities from Government policy changes do exist
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PARENTING CHRISSY | TRANSFoRMATIvE vALIDATIoN
and it is possible to overcome the barriers. Chrissy was constructed as ‘trouble’ (Michalko,
2009) because she had failed to adjust to prevailing disabling practices. However, she has
demonstrated that she can lead a settled life now that she is getting the right support,
which liberates me to move on with my own life with greater tranquillity. No more fears
about ‘what next?’ It is about getting the best out of how Chrissy is now. Moreover, many
of my fears common to parents of disabled children about ‘what happens when I’m gone?’
have now been allayed.
The autoethnographical approach has allowed a move beyond personal experience to
provide a contextual exploration of the wider factors that affect the experiences of parents
of children with intellectual disabilities. Therefore, the findings have the potential to add
to existing theoretical knowledge about the experiences of such parents and their families.
The themes that have emerged may be expanded on in future learning disability studies
and they put the experiences of families who have a member with learning disabilities,
including those with complex needs and behaviour that professionals label ‘challenging,’
at the heart of family and disability research.
30
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A REPORT FROM THE CENTRE FOR WELFARE REFORM
PARENTING CHRISSY |
Centre for Welfare Reform
The Centre for Welfare Reform is an independent research and development
network. Its aim is to transform the current welfare state so that it supports
citizenship, family and community. It works by developing and sharing social
innovations and influencing government and society to achieve necessary reforms.
To find out more go to www.centreforwelfarereform.org
We produce a monthly email newsletter, if you would like to subscribe to the list
please visit: bit.ly/CfWR-subscribe
you might like to follow us on twitter: @CforWR
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A REPORT FROM THE CENTRE FOR WELFARE REFORM
PARENTING CHRISSY |
Relevant Publications
38
PERSONALISED TRANSITION
GETTING THERE
Perhaps the most radical forms of
personalisation in the UK give families
control of social care, health and
education budgets. The impact is to
radically improve outcomes for young
people with disabilities.
http://bit.ly/personalised-transition
Too many young people with complex
disabilities end up in institutional
care. This is not necessary if support is
designed around the individual and the
voice of the person and their family is
respected.
http://bit.ly/getting-there
A MODERN HOSPITAL
Even as institutions were being closed
new institutions were being built. This
book highlights the experiences of the
staff working in an institution and their
views of desinstitutionalisation.
http://bit.ly/modern-hospital
A REPORT FROM THE CENTRE FOR WELFARE REFORM
NO GOING BACK
People with learning disabilities tell
their own stories about life inside one
of England's last institutions. They
explain in their own words why there
can be no going back.
http://bit.ly/nogoingback
PUBLISHED BY
THE CENTRE FOR WELFARE REFORM