Dislocation, Pain and Guilt: Popular Media Representation of Parental
Responsibility and Genetic ‘Risk’ in Ehlers-Danlos Syndrome
Melissa P. Martin, Department of Sociology, University of Warwick
Introduction
Scholars have noted the powerful
effects that the media exerts on
social behaviour and as reproduction
is a central aspect of social lives, it
seems probable that media
representations may influence
reproductive decision-making. This
includes whether an individual with a
disability, particularly of a genetic
nature, decides to reproduce and by
what means; genetic or otherwise.
One condition that has received
particularly extensive media
coverage in recent years is Ehlers-
Danlos Syndrome (EDS). This is a
group of rare inherited disorders of
the connective tissue, which
supports the skin, tendons, ligaments,
blood vessels, internal organs and
bones. Some people with the
condition only experience mild
symptoms but for others, EDS can
prove to be disabling and sometimes
life-threatening (NHS Choices 2019).
The focus of the following study is
how EDS is portrayed in popular
media representations and how this
may interpellate people with the
condition to make particular family
planning decisions.
Initial Exploration
Internet searches were conducted to
assess the landscape of media
representation of EDS and parenting
in the broadest possible sense.
This revealed that most
representation was in the form of
written media, especially blogs and
online newspapers; sometimes local
but generally large-scale tabloids,
particularly the Daily Mail. Blogs were
typically in a USA context, while the
newspapers included mostly results
from the UK, with some from the
USA or Australia.
It also exposed that there were
almost no media representations of
fathering with EDS readily available
online and that there has been a
considerable increase on media
representation of mothering with
EDS in the past 5 years.
Sample Selection
To allow for direct comparisons between the
representations, these were restricted to the UK
context only. This limited the selection to
newspaper articles only and the choice was made
to further exclude local newspaper articles and
focus on the large-scale tabloids only due to their
wider reach and easy availability.
While it would have been useful to explore some
representations of fathering with EDS, none were
available that fit this criteria, so the focus was
narrowed to mothering only. This lack of
representation is perhaps because of the lower
rates of EDS diagnosis in men (Ehlers-Danlos
Society 2018) but could also be the result of
women being presented with greater parenting
responsibilities, particularly within the context of
genetic reproduction.
According to this criteria, a total of 8 articles were
selected that were broadly representative of
representations of mothering with EDS, including
both cases where children had inherited the
condition and cases without. To account for
particularly extensive reporting on EDS by the
Daily Mail, half of the articles were sourced from
the tabloid.
Analysis
The articles selected were then analysed using
thematic analysis and some elements of discourse
analysis, firstly in terms of their portrayal of EDS
in itself and then more specifically their portrayal
of parenting with EDS.
i) Living with EDS
The articles generally constructed a narrative of
suffering, taking individuals living with EDS to be
afflicted with an immensely painful and disabling
condition that hugely limits their day-to-day
activities with no respite from their ails. Whilst
those in the articles may experience particularly
significant problems associated with their
condition, the articles contain no alternatives and
so, are centred on how people ‘suffer with EDS’ as
opposed to how they ‘live with EDS’.
Within this narrative, they focused on specific
‘symptoms’. While these included flexibility, joint
pain and neck problems; articles most commonly
referred to frequent dislocations, evident in
headlines such as ‘Mother who dislocates her
joints 20 times a week’, perhaps due to
dislocations’ dramatic and easily understandable
nature and subsequently, the perceived severity of
the condition.
ii) Parenting with EDS
Such negative representations of life
with EDS has momentous
implications for parenting with the
condition.
Firstly, given the portrayed
seriousness of the condition, this
places a greater emphasis on
perceived genetic risk and the
potential guilt parents may
experience if a genetic child does
inherit the condition. This was
discussed quite extensively in the
articles, especially in terms of its
emotional challenges.
Secondly, its focus on how EDS can
interfere with everyday tasks casts
those with the condition as being
incapable. This extends to being
incapable of fulfilling their parenting
responsibilities. For instance, some
articles discuss mothers not being
able to pick their children up and
one mentions a mother dislocating
her wrist while changing a nappy.
Conclusions
Media representations of parenting
with EDS on the whole are very
negative, both in terms of the genetic
‘risk’ involved and perceived inability
to meet parental responsibilities,.
This is at least in part due to how
the condition is constructed by the
media more generally in terms of a
narrative of suffering.
This could potentially have
substantial damaging consequences
for those with the condition who are
making family planning decisions,
either influencing their decision
directly or through fear of judgement
by others who may consider them to
have made the wrong decision.
Acknowledgements
I would like to thank Caroline
Wright for her invaluable support
and guidance throughout the
research process.
Ehlers-Danlos Society (2018) YES! Men Have Ehlers-Danlos: For
Men’s Health Month, The Ehlers-Danlos Society Raises Awareness for
Men with EDS/HSD [online]. Available at: https://www.ehlers-
danlos.com/menhaveeds/ (Accessed 4 October 2019).
NHS Choices (2019) Ehlers-Danlos Syndromes [online]. Available
at: https://www.nhs.uk/conditions/ehlers-danlos-syndromes/
(Accessed 4 October 2019).