HOMECULTURES25
HOME CULTURES
HOMECULTURES25
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VOLUME 4, ISSUE 1
PP 25–44
PATRICK LAVIOLETTE and
JULIENNE HANSON
HOME IS WHERE THE
HEART STOPPED:
PANOPTICISM,
CHRONIC
DISEASE, AND THE
DOMESTICATION
OF ASSISTIVE
TECHNOLOGY
ABSTRACT The notions of housing and
the home have shifted considerably over
the past decades given the significant
changes in technological developments,
demographics and the constitution of the
family nexus. One of the areas in which
architecture, design and planning have
been responding relates to the growing
needs of an ageing population with
increasing leisure time as well as exposure
to disability or chronic diseases.
PATRICK LAVIOLETTE IS SENIOR LECTURER
IN VISUAL AND MATERIAL CULTURE AT
MASSEY UNIVERSITY, WELLINGTON,
NEW ZEALAND. HE WAS FORMALLY
APPOINTED AS A JOINT FELLOW IN THE
DEPARTMENT OF ANTHROPOLOGY AND
IN ARCHITECTURE AT THE BARTLETT
SCHOOL OF GRADUATE STUDIES, UCL, UK,
WHERE HE UNDERTOOK THIS RESEARCH
AS PART OF AN EPSRC-FUNDED PROJECT
ENTITLED “SUPPORTING INDEPENDENCE:
NEW PRODUCTS, NEW PRACTICES, NEW
COMMUNITIES.”
JULIENNE HANSON IS PROFESSOR OF
HOUSE FORM AND CULTURE AT THE
BARTLETT SCHOOL OF GRADUATE
STUDIES, FACULTY OF THE BUILT
ENVIRONMENT, UCL, UK. SHE HAS
RECENTLY PROFILED THE UK’S HOUSING
STOCK WITH THE NEEDS OF OLDER
PEOPLE IN MIND, HAVING INVESTIGATED
THE LAYOUT AND DESIGN OF RESIDENTIAL
CARE HOMES IN RELATION TO QUALITY
OF LIFE ISSUES. SHE IS THE COAUTHOR
OF THE SOCIAL LOGIC OF SPACE (CUP,
1984) WITH PROFESSOR BILL HILLIER WITH
WHOM SHE HAS CO-FOUNDED THE SPACE
SYNTAX GROUP AT UCL.
HOMECULTURES26
PATRICK LAVIOLETTE AND JULIENNE HANSON
>
Regarding฀the฀treatment฀or฀rehabilitation฀from฀illness,฀sophisticated฀
medical฀technologies฀were฀once฀the฀exclusive฀domain฀of฀hospitals฀
and฀specialist฀practices฀but฀are฀becoming฀increasingly฀available฀
in฀the฀home.฀The฀idea฀behind฀their฀recent฀proliferation฀is฀to฀save฀
money฀and฀time฀for฀health฀services฀as฀well฀to฀allow฀outpatients฀a฀
greater฀participation฀in฀their฀own฀recovery฀by฀avoiding฀institutional฀
care.฀ Unfortunately,฀ however,฀ studies฀ into฀ the฀ development฀ of฀
assistive฀technology฀innovations฀have฀largely฀overlooked฀the฀user’s฀
changing฀ perceptions฀ about฀ their฀ own฀ needs฀ and฀ towards฀ the฀
ways฀in฀which฀the฀innovations฀in฀question฀become฀appropriated฀
into฀ their฀ everyday฀ lives.฀ Additionally,฀ little฀ is฀ known฀ about฀ how฀
they฀and฀their฀extended฀support฀network฀of฀carers,฀friends,฀kin฀
or฀partners฀actually฀perceive฀the฀impacts฀of฀illness฀on฀domestic฀
lifestyles.฀ This฀ paper฀ addresses฀ these฀ issues.฀ It฀ examines฀ the฀
mainstream฀implementation฀of฀telecare฀in฀relation฀to฀facilitating฀
the฀independence฀of฀older฀disabled฀people฀in฀their฀domestic฀space.฀
From฀ a฀ case฀ study฀ of฀ chronic฀ heart฀ failure฀ sufferers฀ over฀ sixty฀
living฀in฀the฀Barnsley฀area,฀we฀evaluate฀the฀expectations,฀benefits,฀
drawbacks฀ and฀ social฀ meanings฀ concerning฀ a฀ forthcoming฀ pilot฀
installation฀of฀such฀a฀home-based฀health฀monitoring฀scheme.
INTRODUCTION
What฀would฀you฀say,฀if฀by฀the฀gradual฀adoption฀and฀divers-
ified฀application฀of฀this฀single฀principle,฀you฀should฀see฀a฀
new฀scene฀of฀things฀spread฀itself฀over฀the฀face฀of฀civilized฀
society?—morals฀reformed,฀health฀preserved,฀industry฀invigo-
rated,฀instruction฀diffused,฀public฀burdens฀lightened,฀economy฀
seated฀as฀it฀were฀upon฀a฀rock,฀the฀Gordian฀knot฀of฀the฀poor-
laws฀not฀cut฀but฀untied—all฀by฀a฀simple฀idea฀in฀architecture?฀
(Jeremy฀Bentham฀1995[1787]).
Panopticon,฀ a฀ term฀ for฀ an฀ all-seeing฀ structure,฀ was฀
designed฀by฀Bentham฀in฀the฀late฀eighteenth฀century฀as฀
a฀twenty-four-hour฀surveillance฀edifice.฀Its฀architecture฀
ensured฀ that฀ those฀ in฀ residence฀ could฀ never฀ see฀ the฀ inspector฀
who฀ occupied฀ the฀ privileged฀ central฀ location฀ within฀ the฀ radial฀
configuration.฀ Those฀ observed฀ could฀ not฀ know฀ when฀ they฀ were฀
being฀seen฀(Fig.฀1).฀In฀and฀of฀itself฀this฀mental฀uncertainty฀is฀the฀
crucial฀instrument฀for฀the฀way฀that฀this฀physical฀design฀became฀a฀
conceptual฀construction฀which฀intended฀to฀instill฀a฀self฀imposed฀
means฀of฀regulating฀one’s฀own฀behavior—an฀internalized฀form฀of฀
self฀discipline.
Such฀a฀metaphor฀of฀panopticism฀has฀given฀rise฀to฀many฀vari-
ations฀in฀our฀own฀time.฀Surveillance฀is฀reduced฀to฀an฀idealized฀and฀
ideological฀form.฀Through฀a฀series฀of฀associations฀rather฀than฀a฀
Figure 1
Jeremy Bentham’s Panopticon
from his Panopticon Letters
(1995[1787]).
HOMECULTURES27
HOME IS WHERE THE HEART STOPPED
formal฀argument฀as฀such,฀this฀paper฀indicates฀the฀ways฀in฀which฀
the฀ telecare฀ system,฀ particularly฀ in฀ the฀ geographical฀ context฀ of฀
Barnsley,฀exemplifies฀a฀contemporary฀manifestation฀of฀panopticism฀
as฀problematized฀by฀Bentham฀(1995[1787]),฀Foucault฀(1963,฀1977)฀
and฀similar฀discourses฀in฀anthropology฀and฀architecture฀(Hanson฀
and฀Percival฀forthcoming;฀Samuelsen฀and฀Steffen฀2004).
So฀the฀idea฀here฀is฀to฀begin฀to฀bridge฀what฀has฀been฀seen฀in฀
surveillance฀studies฀as฀a฀chasm฀in฀the฀social฀sciences฀for฀dealing฀
with฀the฀issues฀related฀to฀caring฀surveillance฀(Lyon฀2001).฀In฀these฀
terms,฀we฀explore฀the฀notion฀that฀if฀domestic฀healthcare฀support฀
(in฀the฀form฀of฀telecare)฀is฀to฀be฀medically฀beneficial฀to฀the฀in-
creasing฀number฀of฀older฀citizens฀with฀chronic฀conditions฀and฀to฀
society฀more฀generally,฀then฀it฀must฀possess฀some฀of฀the฀intimate฀
and฀ emancipatory฀ characteristics฀ of฀ what฀ some฀ scholars฀ have฀
called฀the฀synoptical,฀which฀stands฀in฀opposition฀to฀the฀panoptical฀
(Haggerty฀and฀Ericson฀2000;฀Hier฀2003).฀Or฀what฀the฀performance฀
theorist฀Steve฀Mann฀(2004)฀calls฀sousveillance฀versus฀surveillance.฀
In฀other฀words,฀residential฀health฀monitoring฀technologies฀need฀
to฀demonstrate฀a฀significant฀potential฀for฀vernacular,฀grass฀roots฀
empowerment.฀ And฀ this฀ enabling฀ potential฀ would฀ then฀ have฀ to฀
outstrip฀the฀more฀sinister฀controlling฀and฀liberty฀removing฀effects฀
frequently฀entailed฀by฀many฀institutionally฀conceived฀forms฀of฀the฀
medical฀gaze.
BACKGROUND
This฀article฀is฀a฀preliminary฀summary฀of฀a฀period฀of฀fieldwork฀in฀
progress.฀It฀is฀part฀of฀a฀larger฀four-year฀research฀consortium฀proj-
ect฀that฀operates฀under฀the฀title฀“Supporting฀Independence;฀New฀
Products,฀ New฀ Practices,฀ New฀ Communities.”฀ Members฀ of฀ this฀
consortium฀ have฀ been฀ preparing฀ to฀ install฀ assistive฀ technology฀
devices฀ that฀ form฀ a฀ telecare฀ package฀ into฀ the฀ homes฀ of฀ older฀
people฀with฀chronic฀heart฀failure฀living฀in฀the฀Barnsley฀area฀of฀South฀
Yorkshire.฀Though฀monitoring฀equipment฀may฀be฀an฀appropriate฀
medical฀intervention,฀it฀may฀not฀be฀the฀most฀effective฀solution฀if฀the฀
home฀environment฀is฀inherently฀unsuitable฀for฀an฀older฀person฀to฀
live฀in฀(Lansley฀et฀al.฀2005).฀Our฀role฀on฀this฀project฀is฀to฀address฀the฀
relationship฀between฀people’s฀health,฀their฀housing฀and฀their฀ability฀
or฀otherwise฀to฀manage฀at฀home.฀Some฀of฀the฀themes฀that฀we฀are฀
exploring฀consist฀of฀the฀domestication฀of฀technological฀devices฀as฀
well฀as฀how฀technology฀alters฀the฀everyday฀representation฀of฀self฀
(Goffman฀1956),฀and฀how฀people฀make,฀or฀become฀susceptible฀
to฀suggestions฀to฀make,฀adaptations฀to฀their฀home฀as฀they฀get฀
older฀and฀as฀their฀health฀conditions฀change.฀Ultimately฀this฀means฀
we฀are฀curious฀about฀how฀the฀very฀notion฀of฀the฀home฀begins฀to฀
change฀in฀an฀ageing฀society.
Telecare฀is฀health฀care฀at฀a฀distance.฀It฀is฀achieved฀within฀the฀
person’s฀ own฀ home฀ through฀ the฀ assistance฀ of฀ information฀ and฀
HOMECULTURES28
PATRICK LAVIOLETTE AND JULIENNE HANSON
communication฀technologies.฀It฀is฀a฀way฀of฀delivering฀care฀not฀a฀
form฀of฀treatment.฀It฀operates฀when฀monitoring฀systems฀made฀up฀
of฀various฀types฀of฀sensors฀are฀used฀together฀to฀examine฀specific฀
physical฀conditions฀of฀wellbeing฀such฀as฀vital฀signs,฀detection฀of฀
environmental฀irregularities฀(floods,฀excess฀heat),฀regular฀culinary฀
activity,฀room฀occupation฀and฀movement.฀The฀information฀gathered฀
is฀communicated฀to฀a฀remote฀base฀or฀call฀centre฀which฀records฀
medical฀information฀for฀specialists฀or฀GPs฀and฀monitors฀for฀certain฀
alert฀signals.฀The฀breach฀of฀any฀such฀health฀warning฀triggers฀off฀
automated฀alarms฀or฀arranges฀for฀the฀user,฀family฀member,฀formal฀
carer฀or฀emergency฀services฀to฀be฀contacted,฀depending฀on฀the฀
nature฀of฀what฀is฀deemed฀to฀be฀occurring฀(Brownsell฀et฀al.฀2003;฀
Porteus฀1999).
Although฀the฀decreasing฀prevalence฀of฀lethal฀or฀disabling฀infec-
tious฀diseases฀marks฀the฀achievement฀of฀public฀health฀care฀over฀
the฀past฀century,฀contagious฀epidemics฀are฀being฀replaced฀by฀com-
plexes฀of฀longstanding฀chronic฀illness.฀These฀are฀associated฀with฀
extended฀longevity฀as฀well฀as฀rather฀high฀hygiene฀and฀affluence.฀They฀
fall฀into฀a฀tripartite฀division฀(systemic฀degeneration,฀biomechanical,฀
psychological).฀The฀first฀category,฀organic฀degeneration฀or฀systems฀
failure,฀includes฀most฀cardiovascular฀diseases฀such฀as฀Chronic฀
Heart฀Failure฀(CHF).฀Crucial฀symptoms฀of฀CHF฀include:฀night฀time฀
urination,฀swelling฀of฀ankles,฀palpitations,฀fatigue,฀breathlessness.฀
These฀rather฀clear฀indicators฀make฀it฀a฀relatively฀easy฀condition฀to฀
monitor฀and฀therefore฀to฀regulate฀through฀medication฀with฀sufficient฀
notification฀(Aldred฀et฀al.฀2005).
Caring฀for฀an฀increasingly฀elderly฀population฀is฀one฀of฀the฀big-
ger฀challenges฀facing฀local฀government฀and฀healthcare฀services฀
over฀the฀next฀decades.฀People฀over฀sixty-five฀occupy฀almost฀two-
thirds฀of฀general฀and฀acute฀hospital฀beds—in฀certain฀instances฀
unnecessarily.฀About฀forty฀percent฀of฀NHS฀(National฀Health฀Service)฀
expenditure฀goes฀on฀caring฀for฀the฀over฀sixty-fives,฀and฀although฀
currently฀a฀fifth฀of฀the฀UK’s฀population฀is฀over฀sixty,฀in฀five฀years’฀
time฀this฀proportion฀will฀have฀risen฀sharply.฀The฀UK฀presently฀has฀the฀
highest฀proportion฀of฀residents฀over฀the฀age฀of฀sixty-five฀in฀Europe฀
(18.7%).฀The฀cost฀to฀the฀taxpayer฀of฀supporting฀a฀chronically฀unwell฀
older฀person฀at฀home฀is฀estimated฀at฀half฀the฀cost฀of฀a฀residential฀
home,฀a฀quarter฀of฀the฀cost฀of฀care฀in฀a฀nursing฀home฀and฀an฀eighth฀
of฀providing฀care฀in฀a฀hospital฀(Fisk฀2003).฀Consequently,฀the฀UK฀
government฀plans฀to฀provide฀telecare฀to฀all฀who฀need฀it฀by฀2010.฀
To฀this฀effect,฀The฀Department฀of฀Health฀has฀invested฀£80฀million.฀
At฀present฀about฀1,700฀older฀and฀vulnerable฀people฀are฀supported฀
in฀their฀own฀homes฀with฀a฀package฀of฀telecare฀technology.฀Roughly฀
ten฀percent฀of฀these฀people฀have฀high฀levels฀of฀care฀or฀support฀
and฀would฀have฀been฀considered฀for฀a฀move฀to฀institutional฀care฀
in฀the฀absence฀of฀a฀cost-effective฀alternative.฀The฀idea฀of฀telecare฀
as฀a฀means฀of฀helping฀people฀stay฀at฀home฀within฀a฀risk-managed฀
HOMECULTURES29
HOME IS WHERE THE HEART STOPPED
environment฀is฀therefore฀highly฀driven฀by฀economics฀as฀well฀as฀
the฀practicalities฀that฀the฀NHS฀is฀increasingly฀facing฀regarding฀the฀
changing฀demographics฀of฀gerontology฀(Tang฀et฀al.฀2000).
The฀UK฀is฀thus฀at฀a฀healthcare฀crossroads.฀The฀form฀of฀the฀NHS’฀
modernization,฀particularly฀its฀use฀of฀IT,฀will฀be฀critical฀in฀determining฀
the฀health฀of฀the฀nation.฀Prioritizing฀continuous฀physiological฀tele-
monitoring฀is฀an฀interesting฀opportunity฀for฀the฀future฀NHS฀to฀place฀
equality฀of฀self-care฀in฀the฀hands฀of฀the฀public฀(Shaw฀1998).฀In฀
this฀sense,฀the฀transformations฀of฀the฀NHS฀could฀allow฀it฀to฀better฀
situate฀wellbeing฀and฀risk฀prevention฀at฀the฀core฀of฀healthcare,฀
reversing฀the฀trend฀of฀inequality฀of฀care฀and฀the฀increasing฀disease฀
consequences฀of฀the฀deteriorating฀lifestyle฀of฀the฀nation—particularly฀
those฀ associated฀ with฀ social฀ disadvantage.฀ The฀ national฀
service฀ frameworks฀ are฀ all฀ based฀ on฀ generic฀ health-promotion฀
standards฀that฀are฀unmet฀by฀the฀current฀system.฀Certain฀medical฀
innovation฀specialists฀therefore฀argue฀that฀such฀standards฀cannot฀
be฀easily฀delivered฀without฀recourse฀to฀substantial฀IT-supported฀
change฀in฀service฀provision฀(Barlow฀and฀Venables฀2004).
These฀are฀compelling฀reasons฀for฀providing฀long-term฀care฀for฀
older฀people฀in฀their฀homes,฀whenever฀possible.฀This฀is฀particularly฀
so฀since฀older฀people฀usually฀wish฀to฀avoid฀institutional฀care฀(Fig.฀2).฀
Indeed,฀few฀dispute฀that฀older฀people฀prefer฀to฀remain฀in฀their฀own฀
homes,฀living฀independently,฀for฀as฀long฀as฀they฀can฀(Marcoux฀2001).฀
While฀ telecare’s฀ potential฀ to฀ reduce฀ health฀ care฀ costs฀ appears฀
straightforward,฀ the฀ perceptions฀ of฀ patients’฀ regarding฀ this฀ new฀
technology฀have฀rarely฀been฀examined.฀A฀study฀in฀Scotland฀by฀Levy฀
et฀al.฀(2002)฀and฀a฀collaboration฀between฀Swedish฀and฀Californian฀
medical฀health฀experts฀(Agrell฀et฀al.฀2000)฀seem฀to฀be฀amongst฀the฀
few฀to฀elicit฀patients’฀perceptions฀regarding฀home฀telecare฀through฀
structured฀interviews฀in฀their฀own฀homes.฀The฀latter฀study฀delivered฀
a฀survey฀instrument฀of฀thirty-four฀items฀to฀a฀sample฀of฀patients฀who฀
were฀currently฀or฀had฀previously฀been฀enrolled฀in฀the฀Sonora฀Health฀
System฀or฀UC฀Davis฀home฀telecare฀pilot฀projects.฀Fifteen฀(56%)฀of฀
the฀twenty-seven฀past฀or฀present฀enrollees฀agreed฀to฀the฀interviews.฀
Figure 2
Barnsley Care Home for
the Elderly, 2005. Photo by
P. Laviolette.
HOMECULTURES30
PATRICK LAVIOLETTE AND JULIENNE HANSON
Most฀had฀neutral฀(9฀of฀15,฀60%)฀or฀positive฀(5฀of฀15,฀33%)฀feelings฀
about฀home฀telecare฀before฀their฀participation.฀Subsequently฀all฀
were฀either฀considerably฀satisfied฀(10฀of฀15,฀67%)฀or฀fairly฀satisfied฀
(5฀of฀15,฀33%)฀with฀the฀services฀provided.฀Fourteen฀of฀fifteen฀(93%)฀
agreed฀to฀receiving฀future฀home฀telecare฀services฀and฀all฀fifteen฀
would฀recommend฀the฀system฀to฀family฀or฀friends.
Even฀though฀they฀were฀informed฀to฀the฀contrary,฀patients฀imag-
ined฀that฀the฀presence฀of฀telecare฀equipment฀in฀the฀home฀implied฀
round฀the฀clock฀access฀to฀care฀or฀a฀nurse.฀The฀disclosure฀of฀in-
timate฀information฀during฀tele-visits฀was฀obviously฀a฀source฀of฀con-
cern฀for฀many฀while฀others฀lamented฀the฀reduced฀amount฀of฀time฀
nurses฀spent฀“socializing”฀as฀compared฀to฀in-person฀visits.฀Despite฀
anxieties฀regarding฀its฀confidentiality฀and฀ability฀to฀approximate฀the฀
social฀stimulation฀of฀in-person฀nursing฀visits,฀patients฀in฀these฀pilot฀
trials฀seemed฀satisfied฀with฀home฀telecare฀and฀appeared฀ready฀
to฀accept฀its฀widespread฀use.฀The฀outcomes฀of฀such฀studies฀to฀
date฀suggest฀that฀reductions฀in฀hospital฀delayed฀discharges฀would฀
possibly฀occur฀and฀quality฀of฀life฀for฀service฀users฀should฀improve฀
(Sinha฀2000).
METHODOLOGY
Participants฀for฀our฀study฀are฀being฀chosen฀at฀random฀from฀a฀list฀of฀
several฀hundred฀cardiac฀patients฀at฀the฀Barnsley฀District฀Hospital฀
by฀our฀research฀partners฀there.฀For฀their฀purposes฀of฀providing฀a฀
quantitative฀study฀of฀the฀telecare฀package,฀they฀are฀attempting฀to฀
gather฀at฀least฀fifty-five฀people฀who฀fall฀into฀a฀telecare฀intervention฀
group฀ and฀ a฀ non-telecare฀ control฀ group.฀ We฀ have฀ recruited฀ a฀
sub-set฀of฀about฀thirty-two฀participants฀from฀them,฀mostly฀from฀
the฀intervention฀group.฀The฀basis฀for฀our฀selection฀is฀the฀type฀of฀
housing฀in฀which฀they฀live—e.g.฀Victorian฀terraced฀house,฀council฀
house/flat,฀ purpose-built฀ or฀ converted฀ dwelling,฀ detached฀ or฀
semi-detached฀bungalow.฀This฀means฀that฀we฀have฀at฀least฀five฀
participants฀for฀five฀different฀housing฀types,฀a฀number฀of฀types฀that฀
is฀roughly฀representative฀for฀the฀average฀socioeconomic฀conditions฀
expected฀in฀this฀area฀of฀South฀Yorkshire.
Of฀the฀thirty-two฀interviews,฀twenty-eight฀have฀been฀men฀and฀four฀
have฀been฀women,฀with฀five฀from฀the฀control฀group.฀The฀gender฀
bias฀is฀indicative฀of฀this฀medical฀condition,฀which฀disproportionately฀
afflicts฀men.฀The฀interviews฀have฀occurred฀in฀three฀batches฀over฀
the฀course฀of฀October/November฀2005฀and฀early฀March฀2006.฀The฀
research฀nurse฀who฀solicits฀their฀participation฀has฀been฀leaving฀
a฀brochure฀with฀them฀that฀explains฀the฀desire฀to฀recruit฀certain฀
people฀concerning฀how฀they฀feel฀about฀the฀system.฀These฀people฀
are฀being฀invited฀to฀participate฀in฀a฀housing฀audit฀coupled฀to฀an฀
in-depth,฀qualitative฀interview฀about฀the฀relationship฀between฀their฀
housing,฀health,฀and฀activities฀of฀daily฀living.฀We฀are฀then฀given฀a฀
list฀of฀names฀from฀those฀that฀express฀an฀interest฀and฀left฀with฀the฀
HOMECULTURES31
HOME IS WHERE THE HEART STOPPED
stipulation฀that฀the฀interviews฀need฀to฀be฀completed฀within฀about฀a฀
week฀so฀that฀the฀telecare฀kit฀can฀be฀installed฀quickly.
Seventeen฀participants฀have฀accepted฀the฀Lifestyle฀Monitoring฀
sensors฀which฀means฀that฀their฀homes฀will฀be฀kitted฀out฀with฀various฀
types฀of฀sensors฀for฀movement,฀occupancy฀(chair,฀bed)฀and฀utility฀
(kettle,฀fridge,฀microwave,฀cupboards).฀Except฀for฀the฀five฀controls,฀
all฀will฀have฀the฀Docobot฀health฀monitoring฀computer.฀Nearly฀half,฀
however,฀have฀refused฀the฀sensors฀and฀are฀simply฀accepting฀to฀
use฀the฀computer.฀Follow฀up฀interviews฀will฀involve฀questions฀about฀
living฀with฀the฀system.฀Also฀tours฀of฀the฀home,฀a฀furniture฀inventory,฀
photos฀and฀amendments฀to฀map฀plans฀consisting฀of฀locating฀the฀
sensors฀(if฀installed)฀will฀be฀requested฀at฀this฀stage.
The฀first฀semi-structured฀interviews฀have฀been฀rather฀informal.฀
Most฀lasted฀about฀an฀hour฀and฀a฀quarter.฀A฀couple฀took฀over฀three฀
hours.฀They฀have฀taken฀place฀before฀the฀installation฀of฀the฀telecare฀
in฀order฀to฀get฀a฀preliminary฀sense฀of฀what฀the฀tenants฀expect฀of฀
the฀project,฀their฀views฀of฀modern฀technology฀(particularly฀health฀
technology)฀and฀the฀reasons฀they฀have฀volunteered฀to฀participate.฀
The฀idea฀is฀to฀get฀a฀before฀and฀after฀picture฀by฀visiting฀them฀again฀
after฀nine฀months฀of฀living฀with฀the฀telecare฀system.฀After฀a฀series฀of฀
questions฀about฀their฀homes,฀and฀their฀perceptions฀of฀the฀benefits฀
and฀drawbacks฀of฀telecare,฀we฀have฀been฀getting฀the฀informants฀to฀
talk฀us฀through฀their฀daily฀routines฀and฀the฀uses฀they฀make฀of฀the฀
various฀places฀in฀their฀homes฀and฀beyond฀(Highmore฀2002).฀Not฀
only฀is฀this฀to฀assist฀in฀the฀understanding฀of฀everyday฀lifestyles฀
but฀also฀to฀correlate฀with฀whether฀the฀sensor฀data฀gathered฀by฀our฀
Dundee฀consortium฀partners฀will฀bear฀any฀resemblance฀to฀what฀
people฀say฀they฀are฀doing.
The฀interviews฀finished฀up฀with฀making฀a฀sketch฀plan฀of฀the฀room฀
in฀which฀the฀encounter฀took฀place฀and฀an฀approximate฀plan฀of฀the฀
entire฀home,฀more฀detailed฀if฀the฀participants฀offered฀to฀provide฀a฀
tour.฀The฀idea฀here฀was฀to฀get฀them฀to฀speak฀about฀where฀they฀had฀
been฀told฀or฀imagined฀the฀sensors฀would฀be฀installed.฀Only฀three฀
people฀offered฀a฀tour฀of฀their฀flat฀or฀house฀and฀the฀success฀rate฀in฀
obtaining฀a฀cup฀of฀tea฀was฀only฀fifty฀percent.฀Finally,฀a฀few฀people฀
have฀offered฀to฀sketch฀the฀place฀out฀themselves,฀which฀is฀of฀course฀
ideal฀ethnographically.
MATERIALIZING MEDICAL DISCOURSES
In฀our฀sample฀over฀half฀the฀participants฀have฀had฀a฀triple฀heart฀
bypass.฀A฀few฀have฀pace฀makers.฀Many฀spoke฀about฀having฀had฀
one฀or฀several฀heart฀attacks฀in฀their฀home.฀But฀they฀nearly฀all฀still฀
want฀to฀live฀where฀they฀are,฀the฀exceptions฀related฀to฀their฀growing฀
difficulty฀with฀negotiating฀stairs.฀So฀overall,฀there฀is฀a฀strong฀positive฀
potential฀for฀developing฀remote฀medical฀technologies฀that฀allow฀
people฀to฀stay฀at฀home.฀And฀at฀the฀surface,฀many฀of฀our฀participant฀
responses฀have฀been฀related฀to฀encouraging฀such฀development.฀
HOMECULTURES32
PATRICK LAVIOLETTE AND JULIENNE HANSON
Most฀of฀them฀are฀proud฀of฀the฀family฀support฀networks฀that฀they฀
have฀and฀feel฀that฀the฀telecare฀is฀either฀going฀to฀be฀an฀interesting฀
backup฀system฀for฀them,฀or฀there฀to฀alleviate฀some฀of฀the฀strain฀
upon฀this฀support฀network.฀Indeed,฀they฀hope฀it฀will฀be฀a฀good฀safe-
guard฀mechanism฀or฀something฀that฀is฀around฀to฀double฀check฀
their฀health.฀But฀they฀are฀generally฀ambivalent฀about฀telecare฀if฀it฀
were฀to฀begin฀replacing฀the฀full฀professional฀nurse฀care.฀Perhaps฀
surprisingly,฀however,฀hardly฀any฀mentioned,฀without฀some฀prompting,฀
that฀they฀were฀concerned฀about฀alienation฀or฀possible฀reduction฀in฀
human฀care฀contact.
Many฀felt฀the฀most฀useful฀thing฀to฀come฀out฀of฀any฀telecare฀
treatment฀was฀that฀it฀would฀save฀travel฀time฀for฀them฀and฀NHS฀staff.฀
They฀supported฀strongly฀the฀idea฀that฀if฀it฀helped฀make฀the฀NHS฀more฀
efficient฀and฀save฀time฀and฀money฀for฀health฀care฀professionals฀
it฀would฀be฀a฀good฀thing.฀Amusingly,฀a฀couple฀of฀people฀felt฀that฀
they฀themselves฀were฀the฀equivalent฀to฀community฀alarms฀for฀their฀
neighbors฀who฀relied฀on฀them฀for฀help.฀Several฀thought฀the฀sensors฀
for฀detecting฀movement฀would฀be฀rather฀useless฀but฀were฀happy฀
“to฀give฀it฀a฀go.”฀A฀couple฀of฀others฀added฀that฀this฀was฀going฀too฀
far฀and฀did฀not฀feel฀comfortable฀with฀them฀so฀they฀have฀declined฀to฀
have฀them.฀A฀few฀people฀even฀felt฀that฀the฀telecare฀would฀help฀with฀
learning฀about฀their฀own฀condition฀(below฀we฀describe฀the฀example฀
of฀one฀of฀them฀in฀relation฀to฀weight฀monitoring).
But฀there฀was฀some฀dissent.฀One฀chap,฀Mr฀Green฀(aged฀sixty-
eight),฀who฀withdrew฀from฀the฀project฀the฀day฀after฀his฀preliminary฀
interview,฀said฀as฀soon฀as฀he฀was฀approached฀that฀he฀was฀not฀
keen.฀He฀greeted฀the฀interviewer฀from฀the฀top฀of฀the฀stairs฀with฀the฀
music฀blaring฀from฀the฀lounge฀downstairs฀after฀he฀had฀been฀rung฀
on฀the฀phone฀because฀it฀was฀apparent฀that฀he฀could฀not฀hear฀the฀
doorbell.฀While฀climbing฀down฀the฀stairs฀hesitantly,฀he฀indicated฀
to฀go฀into฀the฀lounge.฀He฀sat฀down฀in฀his฀favorite฀chair฀without฀
turning฀the฀music฀down฀and฀proceeded฀to฀say฀that฀he฀was฀already฀
housebound฀and฀did฀not฀want฀this฀“tele฀thing”฀to฀make฀matters฀
worse.฀ When฀ arranging฀ the฀ first฀ interview,฀ he฀ agreed฀ only฀ once฀
it฀was฀clarified฀that฀he฀need฀not฀displace฀himself฀and฀would฀be฀
visited฀at฀home.฀He฀was฀obviously฀not฀prepared฀to฀go฀out฀of฀his฀
way.฀His฀first฀comments฀were฀to฀say฀that฀after฀sixteen฀years฀of฀
having฀it,฀he฀canceled฀his฀subscription฀to฀Sky฀last฀month.฀He฀went฀
on฀to฀explain฀that฀he฀recently฀got฀rid฀of฀his฀blood฀pressure฀gauge฀
because฀it฀was฀too฀complicated฀and฀would฀soon฀be฀ridding฀himself฀
of฀his฀mobile฀phone฀which฀he฀felt฀was฀only฀for฀show฀offs,฀perhaps฀
a฀subtle฀reference฀to฀the฀fact฀that฀he฀had฀just฀been฀called฀from฀a฀
mobile฀to฀answer฀the฀door.฀He฀then฀complained฀at฀length฀about฀the฀
number฀of฀tablets฀he฀has฀to฀take,฀saying฀he฀could฀keep฀a฀chemist฀
in฀business.฀Interestingly฀on฀this฀point,฀the฀location฀for฀storing฀
medication฀was฀usually฀haphazard฀by฀most฀informants.฀People฀kept฀
their฀tablets฀in฀bags฀by฀the฀TV฀in฀the฀lounge.฀The฀kitchen฀was฀also฀
HOMECULTURES33
HOME IS WHERE THE HEART STOPPED
a฀main฀place฀for฀keeping฀them฀and฀sometimes฀the฀bathroom฀and฀
bedroom.
It฀came฀out฀that฀Mr฀Green฀had฀only฀agreed฀to฀participate฀in฀the฀
project฀to฀get฀his฀money’s฀worth฀from฀the฀NHS—that฀he฀had฀paid฀
his฀taxes฀all฀his฀life฀and฀that฀the฀government฀would฀not฀get฀anything฀
further฀off฀him.฀Rather฀he฀wanted฀whatever฀benefits฀he฀was฀entitled฀
to฀as฀long฀as฀it฀implied฀minimal฀input฀on฀his฀part.฀The฀inference฀
here฀is฀that฀the฀telecare฀project฀was฀beginning฀to฀be฀more฀trouble฀
than฀it฀was฀worth.
Most฀people฀stated฀that฀they฀were฀not฀sure฀what฀to฀expect฀from฀
the฀project฀or฀how฀it฀could฀help฀them.฀They฀were฀nonetheless฀keen฀
to฀participate฀because฀the฀information฀collected฀might฀help฀others฀
in฀the฀future.฀Willing฀“Guinea฀Pigs”฀was฀a฀recurring฀term.฀A฀typical฀
reason฀was฀because฀they฀felt฀they฀owed฀the฀NHS฀their฀lives;฀that฀
each฀time฀they฀had฀been฀hospitalized,฀the฀staff฀had฀been฀brilliant฀
so฀they฀were฀willing฀to฀play฀their฀part.฀One฀person฀even฀claimed,฀“if฀
I฀could฀dedicate฀an฀hour฀a฀week฀to฀helping฀the฀NHS฀I฀would฀with฀no฀
quibbles.”
On฀the฀whole฀most฀respondents฀have฀been฀exceptionally฀sup-
portive฀of฀the฀care฀they฀have฀got฀from฀Barnsley฀Hospital,฀hence฀
their฀main฀desire฀to฀participate฀in฀the฀research.฀A฀few,฀however,฀
were฀quite฀unfavorable฀about฀this฀hospital฀in฀particular.฀What฀is฀
interesting฀is฀that฀they฀believe฀most฀others฀feel฀the฀same฀way.฀Here฀
is฀one฀example฀by฀one฀of฀the฀younger฀gentlemen฀(aged฀sixty-two)฀
who฀was฀in฀the฀minority฀in฀not฀having฀his฀wife฀present฀during฀the฀
interview฀even฀though฀she฀was฀in฀the฀house:
We฀used฀to฀hear฀stories฀about฀the฀family฀doctor฀visit.฀I’ve฀
only฀had฀one฀doctor฀in฀my฀life฀who฀on฀his฀own฀bat฀came฀to฀
visit฀me฀when฀I฀were฀in฀hospital฀many,฀many฀years฀ago.฀The฀
only฀one฀who฀showed฀any฀interest฀and฀I฀don’t฀think฀they฀do฀
today,฀oh฀no.฀I฀think฀most฀people฀will฀talk฀that฀way,฀they’re฀all฀
disappointed.฀We’ve฀got฀to฀go฀to฀Rotherham฀at฀the฀weekend฀
because฀she฀can’t฀go฀to฀Barnsley,฀she’s฀got฀an฀eye฀problem,฀
especially฀because฀she฀gets฀iritis฀for฀many฀years฀and฀now฀
you’ve฀got฀to฀go฀to฀Rotherham,฀if฀it’s฀Friday฀or฀Saturday,฀you’ve฀
got฀to฀go฀twenty฀miles,฀it’s฀rubbish.
Another฀example฀of฀grievances฀comes฀from฀Mr฀and฀Mrs฀Lister฀who฀
actually฀live฀in฀a฀caravan฀by฀the฀coast฀for฀nearly฀half฀the฀year฀and฀
whose฀actual฀potential฀to฀contribute฀meaningfully฀to฀the฀telecare฀
project฀is฀therefore฀questionable.฀They฀described฀how฀the฀Barnsley฀
doctors฀ sent฀ Mrs฀ Lister฀ home฀ to฀ die฀ in฀ 1968฀ when฀ she฀ was฀
deemed฀terminally฀ill฀(she฀is฀not฀the฀CHF฀sufferer).฀“I฀remember฀
telling฀the฀doctors฀at฀the฀time,฀I’m฀not฀coming฀back฀to฀Barnsley฀
Hospital฀because฀you฀bury฀mistakes฀here.”฀They฀go฀on฀to฀explain฀
that฀Barnsley฀used฀to฀have฀a฀lot฀of฀power฀cuts฀so฀living฀near฀the฀
HOMECULTURES34
PATRICK LAVIOLETTE AND JULIENNE HANSON
old฀hospital฀was฀convenient฀to฀avoid฀that.฀“But฀when฀they฀moved฀
up฀Pogmoor,฀new฀hospital฀got฀a฀bad฀name฀early฀on.฀They฀seem฀to฀
spend฀more฀time฀and฀money฀developing฀waiting฀areas.฀And฀referrals฀
seem฀to฀be฀something฀they’re฀good฀at.฀Must฀get฀paid฀by฀number฀
of฀visits฀and฀referrals.฀They฀like฀you฀to฀come฀back.”฀Another฀point฀
that฀they฀raised฀is฀that฀patients฀are฀seen฀by฀junior฀people฀and฀the฀
“top฀dog”฀sits฀and฀observes฀but฀does฀not฀give฀any฀contact฀time.฀
They฀suggest฀that฀this฀is฀necessary฀for฀training฀“but฀the฀more฀and฀
bigger฀hospitals฀get,฀the฀more฀people฀fall฀through฀the฀cracks฀and฀
you฀end฀up฀with฀many฀incompetent฀specialists฀.฀.฀.฀these฀days฀you฀
don’t฀actually฀get฀cured.”฀Their฀grievance฀is฀effectively฀about฀how฀
people฀are฀kept฀in฀a฀self-perpetuating฀system฀of฀nurturance฀where฀
they฀are฀shuffled฀around—where฀one฀is฀never฀seriously฀ill฀but฀never฀
altogether฀not฀ill฀either.
This฀view฀is฀supported฀by฀Mr฀Littlewood฀(aged฀sixty-seven)฀who฀
says฀“hospitals฀would฀make฀you฀into฀an฀invalid฀if฀they฀could.”฀He฀is฀
very฀active฀and฀wants฀to฀die฀in฀a฀manner฀that฀is฀quick฀and฀dignified฀
“like฀that฀Yorkshire฀gardener฀Percy฀Thrower.฀Y’know,฀second฀heart฀
attack,฀bam!฀Gone.”฀In฀other฀words,฀Mr฀Littlewood฀is฀not฀keen฀in฀a฀
protracted,฀drawn฀out฀death.฀He฀also฀comments฀antagonistically฀
about฀how฀some฀people฀“live฀in฀their฀illness฀.฀.฀.฀they฀won’t฀stop฀
talking฀about฀it฀to฀the฀point฀where฀you’d฀think฀it฀was฀something฀
that฀they฀cherished,฀y’know฀that฀was฀valuable฀in฀their฀life.”฀The฀idea฀
of฀living฀in฀illness฀not฀as฀a฀hypochondriac฀but฀as฀someone฀with฀
genuine฀problems฀which฀they฀nurture฀is฀interesting.฀Mr฀Littlewood฀
was฀speaking฀of฀someone฀like฀Mr฀Churn฀(aged฀seventy-five)฀who฀
was฀particularly฀concerned฀about฀why฀he฀was฀chosen฀for฀the฀study.฀
Most฀probably,฀he฀was฀anxious฀that฀it฀was฀a฀poor฀health฀criterion฀and฀
that฀we฀were฀interested฀in฀him฀while฀he฀was฀still฀around฀because฀
we฀must฀know฀something฀about฀his฀condition.฀Several฀times฀during฀
the฀conversation฀he฀commented฀quite฀mournfully฀about฀the฀few฀
things฀he฀still฀had฀left,฀like฀his฀family฀and฀home.
Few฀participants฀felt฀they฀would฀be฀competent฀enough฀to฀use฀the฀
technology฀involved฀adequately.฀They฀expressed฀that฀they฀needed฀
the฀system฀to฀be฀“idiot฀proof”฀because฀they฀were฀useless฀with฀
new฀technological฀innovations.฀They฀added฀of฀course฀that฀they฀were฀
not฀of฀the฀right฀generation฀to฀understand฀many฀modern฀gadgets.฀
“There’s฀ only฀ one฀ concern฀ I’ve฀ got.฀ I’m฀ as฀ thick฀ as฀ two฀ planks฀
normally.฀I’m฀not฀sure฀I’ll฀be฀able฀to฀follow฀if฀it’s฀too฀complicated.฀
She’ll฀[the฀district฀nurse]฀have฀to฀leave฀me฀a฀clear฀and฀simple฀list฀of฀
what฀to฀do฀step฀by฀step,฀otherwise฀it’ll฀be฀no฀use฀y’know.”
DOMESTICATING HEALTH CARE
The฀telescreen฀received฀and฀transmitted฀simultaneously.฀Any฀
sound฀that฀Winston฀made,฀above฀the฀level฀of฀a฀very฀low฀whisper,฀
would฀be฀picked฀up฀by฀it;฀moreover,฀so฀long฀as฀he฀remained฀
HOMECULTURES35
HOME IS WHERE THE HEART STOPPED
within฀the฀field฀of฀vision฀which฀the฀metal฀plaque฀commanded,฀
he฀could฀be฀seen฀as฀well฀as฀heard.฀There฀was฀of฀course฀no฀
way฀of฀knowing฀whether฀you฀were฀being฀watched฀at฀any฀given฀
moment.฀How฀often,฀or฀on฀what฀system,฀the฀Thought฀Police฀
plugged฀in฀on฀any฀individual฀wire฀was฀guesswork.฀It฀was฀even฀
conceivable฀that฀they฀watched฀everybody฀all฀the฀time.฀But฀at฀
any฀rate฀they฀could฀plug฀in฀your฀wire฀whenever฀they฀wanted฀to.฀
You฀had฀to฀live฀-฀did฀live,฀from฀habit฀that฀became฀instinct฀-฀in฀
the฀assumption฀that฀every฀sound฀you฀made฀was฀overheard,฀
and฀except฀in฀darkness,฀every฀movement฀scrutinized฀(Orwell฀
1949:฀4–5).
We฀have฀taken฀longer฀than฀the฀social฀critic฀George฀Orwell฀thought฀
to฀get฀to฀the฀stage฀of฀a฀Nineteen฀Eighty-Four฀scenario,฀but฀elements฀
of฀it฀are฀on฀their฀way.฀Before฀embarking฀on฀the฀telecare฀installation฀
in฀ Barnsley,฀ focus฀ group฀ work฀ was฀ undertaken฀ there฀ with฀ older฀
members฀of฀the฀general฀public,฀their฀informal฀carers,฀and฀local฀
health฀care฀professionals,฀to฀introduce฀the฀possible฀uses฀of฀telecare฀
through฀ discussion฀ of฀ specially฀ designed฀ case฀ scenarios฀ that฀
explored฀whether฀telecare฀could฀be฀a฀potentially฀valuable฀service.฀
All฀our฀focus฀group฀discussions฀with฀older฀people,฀professionals,฀
and฀carers฀spontaneously฀mentioned฀the฀phrase฀Big฀Brother฀at฀
some฀point.
According฀to฀many฀of฀these฀participants,฀we฀live฀within฀a฀culture฀
of฀creeping฀surveillance฀(Fig.฀3).฀Surveillance฀is฀already฀an฀issue฀
for฀some฀older฀people฀living฀in฀supported฀housing฀settings฀and฀a฀
number฀ of฀ participants฀ commented฀ on฀ how฀ existing฀ community฀
alarm฀systems฀can฀feel฀intrusive.฀One฀carer฀recalled฀how฀a฀friend,฀
living฀in฀sheltered฀housing,฀routinely฀whispers฀when฀communicating฀
with฀visitors,฀thinking฀that฀the฀presence฀of฀the฀piper฀alarm฀enables฀
people฀to฀overhear฀general฀conversations.฀Professionals฀mentioned฀
tenants฀ who฀ have฀ a฀ “sense฀ of฀ being฀ watched”฀ and฀ resist฀ this฀
perceived฀passive฀surveillance฀by฀refusing฀to฀have฀monitoring฀calls฀
from฀wardens฀and฀insisting฀that฀they฀will฀“pull฀the฀cord”฀if฀they฀
Figure 3
Barnsley District Hospital from
New Lodge, 2005. Photo by
P. Laviolette.
HOMECULTURES36
PATRICK LAVIOLETTE AND JULIENNE HANSON
want฀help.฀Participants฀questioned฀the฀use฀of฀lifestyle฀monitoring฀
devices,฀where฀private฀routines฀are฀open฀to฀public฀scrutiny฀without฀
good฀reason,฀summed฀up฀by฀the฀comment฀“I฀don’t฀want฀anyone฀to฀
know฀how฀many฀times฀I฀pull฀the฀bloody฀flush,฀it’s฀personal.”
Such฀fears฀emerge฀in฀other฀research.฀Magnusson฀and฀Hanson฀
(2003)฀describe฀how฀a฀number฀of฀frail฀older฀people฀and฀their฀carers฀
felt฀worried฀that฀ICT฀equipment฀could฀enable฀other฀people฀to฀see฀
into฀their฀home.฀Brownsell฀et฀al.฀(2003)฀found฀that฀respondents฀
needed฀reassurance฀that฀their฀warden฀could฀not฀see฀them฀via฀the฀
lifestyle฀monitoring฀systems.฀Fisk฀(2003)฀makes฀a฀fundamental฀
point฀in฀regard฀to฀this฀ethical฀aspect฀of฀telecare฀when฀he฀says฀that฀
if฀there฀is฀to฀be฀surveillance฀that฀gathers฀personal฀information฀
about฀domestic฀routines,฀the฀consent฀of฀the฀service฀user฀is฀vital.฀
Such฀consent฀appears฀not฀to฀have฀been฀requested฀in฀the฀study฀
evaluated฀by฀Bowes฀and฀McColgan฀(2003:฀16),฀with฀staff฀objecting฀
to฀the฀use฀of฀video฀“to฀view฀a฀person฀in฀their฀house฀without฀their฀
knowledge.”
Older฀people฀who฀are฀becoming฀frail฀but฀want฀to฀remain฀in฀their฀
own฀home฀may฀have฀strong฀reasons฀why฀they฀wish฀to฀keep฀their฀
daily฀routines฀and฀behavior฀private.฀Of฀particular฀importance฀is฀the฀
reluctance฀to฀publicize฀difficulties,฀or฀as฀one฀professional฀put฀it,฀
“this฀whole฀issue฀of฀who฀finds฀out฀about฀your฀deteriorated฀state.”฀
Relevant฀studies฀have฀noted฀that฀older฀people฀do฀not฀always฀want฀
falls฀within฀the฀home฀to฀be฀known฀or฀responded฀to,฀for฀fear฀of฀
negative฀consequences฀such฀as฀pressure฀to฀relinquish฀the฀home฀
and฀move฀into฀institutional฀care฀(Brownsell฀and฀Hawley฀2004).฀It฀is฀
also฀important฀to฀note฀in฀the฀context฀of฀falls฀that฀an฀older฀person’s฀
psychological฀priorities฀may฀differ฀from฀those฀of฀carers฀or฀service฀
providers.
For฀example,฀in฀their฀empirical฀study฀of฀the฀ways฀in฀which฀risk฀
of฀falls฀was฀“constructed”฀by฀older฀people,฀Ballinger฀and฀Payne฀
(2002:฀305)฀argue฀that฀while฀service฀providers฀are฀“oriented฀to฀the฀
management฀of฀physical฀risk,”฀older฀people฀themselves฀are฀more฀
concerned฀with฀the฀risk฀to฀their฀“personal฀and฀social฀identities”฀as฀
well฀as฀to฀the฀challenges฀posed฀to฀their฀“self-image.”฀This฀emphasis฀
on฀the฀self-perception฀of฀the฀older฀person฀is฀crucial.฀Some฀authors฀
even฀consider฀self-esteem฀as฀“one฀of฀the฀most฀valuable฀indicators฀
of฀adjustment฀in฀old฀age”฀(Jensen฀et฀al.฀1998:฀255).฀Self-esteem฀
is฀ also฀ a฀ hallmark฀ of฀ older฀ people’s฀ sense฀ of฀ independence,฀
alongside฀“continuity฀of฀the฀self”฀(Secker฀et฀al.฀2003:฀375).฀Many฀
participants฀echoed฀this฀point฀in฀our฀discussion฀groups,฀which฀one฀
person฀summed฀up฀with฀the฀reflection,฀“I’m฀a฀nuisance,฀so฀they’ll฀
take฀me฀out.”
One฀of฀the฀more฀interesting฀things฀to฀arise฀from฀the฀interviews฀
is฀the฀exceptional฀longevity฀of฀residence฀of฀the฀participants.฀They฀
simply฀have฀not฀moved฀much฀in฀their฀lifetime฀and฀do฀not฀plan฀to.฀
Twenty-five฀ of฀ thirty-two฀ have฀ been฀ in฀ the฀ same฀ house฀ for฀ over฀
HOMECULTURES37
HOME IS WHERE THE HEART STOPPED
thirty-five฀years.฀Of฀the฀four฀that฀have฀moved฀more฀recently,฀three฀
had฀remained฀local฀so฀that฀only฀one฀of฀them฀was฀from฀outside฀
South฀Yorkshire.฀This฀is฀potentially฀a฀trait฀of฀the฀region.฀As฀a฀bor-
ough,฀Barnsley฀seems฀to฀have฀a฀reputation฀for฀resident฀stability.฀
An฀internet฀reference฀to฀a฀study฀in฀2003฀reveals฀that฀over฀the฀past฀
several฀years฀the฀average฀number฀of฀people฀moving฀out฀of฀the฀area฀
was฀115฀per฀year฀for฀a฀population฀of฀over฀225,000฀(www.reference.
com/browse/wiki/Barnsley).฀The฀website฀suggests฀therefore฀that฀
this฀is฀related฀to฀a฀high฀satisfaction฀with฀Barnsley฀as฀a฀residence฀
and฀hence฀that฀it฀could฀be฀seen฀as฀one฀of฀the฀best฀places฀to฀live฀
in฀Britain—a฀direct฀opposition฀to฀the฀way฀it฀is฀often฀represented฀in฀
the฀media.฀To฀this฀effect,฀Ken฀Loach’s฀film฀Kes฀(1969)฀and฀Mark฀
Herman’s฀Brassed฀Off฀(1996)฀are฀particularly฀telling฀in฀exposing฀the฀
working-class,฀coal฀mining฀heritage฀of฀the฀region.
An฀interesting฀paradox฀therefore฀exists฀between฀independence฀
and฀mobility,฀or฀the฀lack฀of฀it.฀The฀people฀in฀this฀region฀are฀not฀
geographically฀mobile฀as฀a฀society฀nor฀are฀the฀tenants฀in฀question฀
particularly฀mobile฀as฀a฀group.฀The฀idea฀of฀telecare฀at฀home฀for฀
their฀increased฀independence฀means฀remaining฀in฀place฀is฀what฀
is฀encouraged฀by฀the฀service.฀Independence฀means฀the฀ability฀to฀
remain฀static,฀which฀seems฀to฀be฀what฀they฀want.฀This฀is฀far฀from฀
objectionable฀but฀the฀idea฀of฀independence฀here฀should฀not฀be฀
conflated฀with฀greater฀mobility฀as฀far฀as฀moving฀house฀is฀concerned.฀
Such฀an฀emphasis฀is฀crucial฀in฀the฀way฀that฀it฀is฀in฀conceptual฀
contrast฀to฀the฀idea฀of฀being฀At฀Home฀in฀the฀World฀(Jackson฀1995)฀
or฀how฀migration฀becomes฀a฀form฀of฀identity฀creation฀(Rapport฀and฀
Dawson฀1998).
Mr฀and฀Mrs฀Skate฀(aged฀seventy-three฀and฀sixty-five)฀are฀amongst฀
the฀ slim฀ minority฀ of฀ “middle-class”฀ informants฀ recruited฀ so฀ far.฀
They฀ live฀ in฀ a฀ large฀ four-bedroom฀ house฀ which฀ they฀ purchased฀
themselves฀privately฀(twenty-seven฀of฀the฀thirty-two฀participants฀
have฀obtained฀their฀houses฀or฀flats฀through฀the฀council).฀Further,฀
they฀ have฀ recently฀ moved฀ into฀ Barnsley,฀ although฀ Mrs฀ Skate฀ is฀
from฀the฀area฀originally.฀The฀interview฀with฀them฀lasted฀for฀several฀
hours.฀They฀explained฀that฀they฀refused฀the฀installation฀of฀sensors฀
in฀ the฀ kitchen฀ because฀ they฀ felt฀ that฀ their฀ alternative฀ lifestyle฀
was฀of฀a฀particularly฀sub-hygienic฀standard,฀particularly฀because฀
of฀their฀dogs.฀They฀did฀not฀hesitate,฀however,฀in฀offering฀a฀guided฀
tour฀of฀their฀house,฀something฀again฀that฀many฀participants฀did฀
not฀volunteer.฀Upon฀entering฀the฀kitchen/dining฀area฀it฀became฀
apparent฀that฀it฀was฀not฀just฀the฀dogs฀but฀the฀pets฀more฀generally฀
that฀could฀have฀been฀referred฀to.฀Several฀fish฀bowls฀were฀present฀
in฀this฀area฀of฀their฀home.฀A฀smallish฀one฀was฀completely฀greened฀
over฀in฀a฀cover฀of฀algae.฀Floating฀at฀the฀top฀of฀another฀much฀larger฀
tank฀is฀a฀rather฀big฀(four-inch)฀goldfish.฀The฀flesh฀was฀noticeably฀
decomposing฀around฀its฀blackening฀body.฀It฀had฀been฀dead฀for฀at฀
least฀a฀couple฀of฀weeks.฀
HOMECULTURES38
PATRICK LAVIOLETTE AND JULIENNE HANSON
What฀is฀interesting฀in฀this฀case฀is฀that฀the฀sensors฀in฀question฀
would฀have฀no฀way฀of฀picking฀up฀this฀kind฀of฀eccentric฀behavior฀
about฀ hygiene฀ or฀ lifestyle฀ and฀ this฀ couple฀ is฀ perfectly฀ aware฀ of฀
that.฀And฀yet฀they฀were฀the฀ones฀who฀suggested฀a฀tour฀around฀
their฀house฀where฀such฀things฀could฀be฀observed.฀To฀an฀extent฀
then,฀their฀rationale฀must฀be฀related฀to฀the฀difference฀between฀
human฀versus฀mechanical฀monitoring.฀It฀is฀the฀technology฀here,฀
no฀ matter฀ how฀ intimately฀ related฀ to฀ healthcare,฀ that฀ cannot฀ be฀
allowed฀to฀see฀the฀human฀flaws฀of฀“everyday฀lifestyles,”฀to฀use฀a฀
term฀that฀Henri฀Lefebvre฀was฀partial฀to฀(1991).฀This฀technology฀is฀
thus฀rearticulating฀boundaries฀between฀private฀and฀public฀spaces,฀
distance฀and฀proximity฀(Weber฀1964).฀No฀longer฀can฀we฀assume฀
that฀privacy฀is฀either฀spatially฀or฀temporally฀stable.฀Objects฀are฀less฀
permeable฀than฀subjects,฀conjuring฀not฀an฀embodied฀virtuality฀or฀a฀
virtual฀embodiment,฀but฀simply฀a฀reality฀that฀exists฀in฀opposition฀to฀
the฀technological฀(Arnold฀2003).
The฀questions฀remain,฀however,฀how฀does฀telecare’s฀panoptic฀
structure฀become฀democratic?฀How฀is฀it฀supervised฀by฀society฀as฀a฀
whole?฀The฀answer฀is฀obvious,฀the฀NHS.฀Barnsley฀District฀General฀
Hospital฀was฀founded฀in฀the฀1970s฀by฀joining฀St฀Helen’s฀Hospital฀
and฀the฀Barnsley฀Beckett฀Hospital.฀It฀was฀built฀on฀the฀top฀of฀the฀
hill฀at฀the฀site฀of฀St฀Helen’s,฀which฀was฀mainly฀a฀large฀Victorian฀
maternity฀ward.฀The฀Beckett฀Hospital,฀situated฀further฀down฀the฀
hill฀in฀the฀city฀center฀opposite฀where฀the฀Technical฀College฀is฀now฀
found,฀ was฀ the฀ home฀ so฀ to฀ speak,฀ of฀ the฀ maimed฀ and฀ injured฀
workers฀of฀the฀dangerous฀South฀Yorkshire฀occupation฀of฀mining.฀
The฀amalgamation฀became฀possible฀with฀the฀assistance฀of฀the฀
foundation฀of฀the฀NHS’s฀Hospital฀Trust฀scheme.
The฀panoptical฀aspects฀of฀this฀newer฀Barnsley฀General฀District฀
Hospital฀are฀numerous.฀The฀most฀obvious฀is฀its฀geographical฀posi-
tioning฀as฀a฀central฀reference฀point฀on฀the฀top฀of฀a฀hill฀around฀which฀
the฀city฀extends฀(Fig.฀4).฀It฀can฀be฀seen฀for฀miles฀around฀from฀nearly฀
all฀directions฀and฀has฀an฀ominous฀presence฀in฀daily฀life.฀It฀is฀also฀
one฀of฀the฀main฀employers฀in฀the฀regions฀and฀the฀NHS฀Foundation฀
Trust฀for฀Barnsley฀Hospital฀has฀12,500฀members.฀Nearly฀everyone฀
knows฀ about฀ it฀ and฀ it฀ is฀ next฀ to฀ impossible฀ to฀ ignore฀ because฀
there฀is฀little฀else฀of฀contemporary฀socioeconomic฀significance.฀
Furthermore,฀ there฀ seems฀ to฀ be฀ a฀ disproportionate฀ number฀ of฀
ambulances฀and฀mobility฀scooters฀that฀roam฀the฀streets.
This฀ geographical฀ setting฀ parallels฀ the฀ idea฀ of฀ telecare฀ as฀ a฀
classic฀case฀of฀medical฀surveillance฀technology฀where฀the฀hospital฀
practices฀themselves฀reach฀into฀the฀home.฀For฀Foucault฀(1977),฀
panopticism฀ is฀ a฀ disciplinary฀ mechanism฀ that฀ improves฀ the฀
exercise฀of฀power฀by฀making฀it฀lighter,฀faster,฀and฀more฀effective.฀
It฀is฀a฀design฀of฀subtle฀internalized฀coercion฀for฀a฀future฀society.฀It฀
de-individualizes฀power฀and฀surveillance฀so฀that฀it฀becomes฀difficult฀
to฀ determine฀ who฀ exercises฀ them.฀ Most฀ proponents฀ argue฀ that฀
HOMECULTURES39
HOME IS WHERE THE HEART STOPPED
telecare฀applications฀act฀as฀the฀democratization฀of฀this฀ubiquitous฀
power฀so฀that฀it฀comes฀into฀the฀grasp฀of฀the฀outpatient/tenant฀(Mair฀
and฀Whitten฀2000).฀It฀is฀thus฀empowering฀since฀he฀or฀she฀becomes฀
aware฀of฀and฀responsible฀for฀their฀own฀condition.฀For฀instance,฀
Chalfen฀(2002)฀shows฀how฀video฀intervention฀assessment฀(VIA)฀
can฀sometimes฀allow฀patients฀to฀use฀video฀in฀representing฀their฀
own฀illnesses฀to฀professionals,฀thus฀becoming฀more฀empowered฀
along฀the฀way.฀Additionally,฀it฀is฀argued฀that฀telecare฀clients฀are฀
surveyed฀anonymously฀through฀machines฀rather฀than฀by฀individual฀
nurses฀or฀carers,฀hence฀it฀is฀potentially฀less฀invasive฀rather฀than฀
more฀(Norris฀2001;฀Porteus฀and฀Brownsell฀2000).
So฀Foucault’s฀model฀is฀valid฀in฀its฀assertion฀that฀the฀panopticon฀
produces฀homogeneous฀effects฀of฀power,฀which฀is฀indeed฀turned฀in฀
on฀those฀who฀are฀aware฀of฀its฀presence.฀We฀become฀the฀principle฀
of฀our฀own฀subjection.฀There฀is฀equally฀an฀economic฀geometry฀of฀
efficiency฀ here,฀ what฀ Bentham฀ called฀ the฀ “House฀ of฀ Certainty”฀
(1995[1787]).฀Thus฀we฀can฀talk฀of฀an฀“Internalised฀Insight”—a฀
pure฀architectural฀and฀optical฀system฀of฀political฀technology฀that฀
exists฀in฀everyday฀life฀(de฀Certeau฀et฀al.฀1998).
The฀centrally฀controlled฀database฀of฀telecare฀is฀again฀a฀parallel.฀
Panopticism฀makes฀it฀possible฀to฀classify,฀provide฀typologies,฀draw฀
up฀ differences฀ and฀ similarities฀ amongst฀ patients.฀ So฀ much฀ for฀
observation,฀but฀what฀about฀the฀potentiality฀of฀panopticism฀as฀a฀
laboratory,฀an฀arena฀to฀alter฀behavior?฀An฀perfect฀example฀here฀is฀
Mr฀Hannoy฀(aged฀sixty-three)฀who฀lives฀with฀his฀wife฀some฀miles฀
from฀Barnsley฀in฀a฀little฀country฀village.฀He฀mentions฀in฀relation฀to฀
his฀awareness฀of฀his฀weight฀problem฀that฀the฀telecare฀system฀will฀
hopefully฀allow฀him฀to฀become฀more฀diligent฀about฀his฀diet.฀“Knowing฀
that฀someone฀on฀the฀other฀end฀is฀keeping฀an฀eye฀on฀my฀weight฀
might฀provide฀enough฀of฀an฀outside฀incentive฀to฀help฀me฀regulate฀
what฀and฀how฀I฀eat,฀kinda฀like฀peer฀pressure฀or฀something.”
CONCLUSIONS
This฀article฀has฀implicitly฀raised฀the฀question฀as฀to฀what฀extent฀
older฀ people฀ feel฀ included฀ in฀ modern฀ society฀ in฀ the฀ first฀ place฀
(Porter฀2004).฀During฀a฀conversation฀on฀gerontology฀and฀the฀shift-
ing฀demographics฀of฀many฀European฀countries,฀an฀anthropologist฀
Figure 4
Barnsley District Hospital from
Monk Bretton, 2005. Photo by
P. Laviolette.
HOMECULTURES40
PATRICK LAVIOLETTE AND JULIENNE HANSON
colleague฀ recently฀ commented฀ “older฀ people฀ are฀ becoming฀ the฀
new฀‘Other’฀in฀contemporary฀western฀societies.”฀If฀there฀is฀some฀
truth฀in฀this฀claim,฀then฀the฀notion฀about฀the฀sensitivity฀towards฀
the฀exploitation฀of฀the฀Other฀must฀be฀taken฀seriously.฀This฀leads฀
us฀to฀question฀how฀biomedicine฀is฀embodied฀in฀local฀contexts฀and฀
therefore฀to฀situate฀the฀importance฀of฀cross-cultural฀as฀well฀as฀
interdisciplinary฀ethnographic฀approaches฀in฀studying฀the฀cultures฀
of฀the฀home฀(Duncan฀1988).฀Care฀of฀the฀poor฀is฀often฀given฀by฀
low-cost฀solutions,฀most฀often฀with฀disastrous฀consequences.฀The฀
relevant฀point฀here฀is฀to฀consider฀the฀NHS’s฀high฀investment฀in฀
poor฀areas฀for฀understanding฀whether฀telecare฀is฀financially฀viable฀
as฀the฀lowest฀cost฀solution.฀As฀the฀medical฀anthropologist฀Veena฀
Das฀(1999)฀reminds฀us,฀illness฀is฀indeed฀a฀testing฀ground฀of฀social฀
relations.฀In฀a฀similar฀way,฀so฀too฀would฀it฀be฀the฀case฀for฀ageing฀or฀
financial฀hardship—and฀incrementally฀so฀when฀the฀three฀meet.
And฀ so฀ like฀ Bentham,฀ the฀ NHS’s฀ rhetoric฀ for฀ implementing฀
telecare฀on฀a฀wide฀scale฀is฀a฀utilitarian฀one฀concerned฀with฀the฀
greater฀good.฀It฀offers฀telecare฀as฀a฀potentially฀light,฀cheap,฀and฀
efficient฀means฀of฀supporting฀the฀independence฀of฀older฀people.฀
A฀system฀that฀allows฀them฀to฀become฀more฀aware฀of฀their฀health฀
and฀participate฀in฀their฀own฀treatment.฀On฀principle,฀few฀can฀object฀
to฀such฀ideals.฀Nevertheless,฀one฀does฀need฀to฀point฀out฀the฀more฀
cynical฀Foucauldian฀perspective฀about฀pervasive฀surveillance฀and฀
power฀dynamics฀when฀it฀comes฀to฀medical฀research฀(1963).฀As฀an฀
aside,฀however,฀even฀Foucault’s฀position฀on฀all฀this฀is฀not฀all฀that฀
cynical.฀He฀acknowledged฀the฀benefits฀of฀the฀panoptical฀system฀
as฀a฀metaphor฀for฀a฀disciplined฀self-regulating฀society.฀Indeed,฀he฀
supported฀Bentham’s฀desire฀to฀remove฀God฀from฀the฀surveillance฀
equation.
But฀his฀deliberations฀are฀important฀in฀revealing฀that฀the฀idea฀of฀
the฀greater฀good฀is฀riddled฀with฀the฀complexities฀of฀sacrifice.฀This฀
is฀where฀it฀is฀crucial฀to฀analyze฀at฀whose฀expense฀the฀greater฀good฀
is฀being฀sought.฀In฀this฀case,฀it฀is฀important฀to฀ask฀why฀it฀is฀that฀
these฀people฀in฀particular฀are฀being฀used฀in฀the฀trial฀runs.฀We฀must฀
highlight฀that฀the฀people฀on฀whom฀this฀technology฀is฀being฀tested฀
are฀potentially฀at฀risk฀in฀certain฀respects.฀Not฀only฀are฀they฀an฀ageing฀
population฀that฀suffer฀from฀a฀chronic฀disease฀but฀they฀are฀also฀from฀
regions฀that฀suffer฀from฀significant฀socioeconomic฀hardship.฀Is฀it฀no฀
coincidence฀that฀Doncaster,฀Barnsley,฀Plymouth,฀and฀West฀Lothian฀
are฀principal฀UK฀sites฀for฀telecare฀research?฀With฀the฀exception฀of฀
West฀Lothian฀perhaps,฀these฀are฀generally฀quite฀impoverished฀areas฀
with฀a฀substantial฀working-class,฀ageing฀population.฀Being฀cynical฀
of฀the฀utilitarian฀perspective฀is฀healthy฀here฀since฀it฀indicates฀that฀
the฀greater฀good฀might฀directly฀be฀tapping฀into฀docile฀populations฀
that฀are฀meant฀to฀be฀supported฀by฀the฀health฀service฀industry.฀That฀
is,฀that฀these฀test฀runs฀are฀taking฀as฀their฀guinea฀pigs฀or฀lab฀rats฀
the฀most฀easily฀coerced฀segments฀of฀society.
HOMECULTURES41
HOME IS WHERE THE HEART STOPPED
So฀in฀Gaston฀Bachelard’s฀(1957)฀terms฀of฀spatial฀intimacy,฀this฀
article฀has฀itself฀explored฀the฀ideas฀implicated฀within฀both฀intimate฀
and฀intimidating฀home-based฀technologies.฀It฀has฀further฀suggested฀
that฀it฀also฀becomes฀pertinent฀to฀question฀the฀reasons฀why,฀on฀a฀
relatively฀national฀scale,฀overtly฀panoptical฀models฀of฀technological฀
health฀surveillance฀are฀being฀tried฀and฀tested฀in฀the฀places฀that฀
they฀are฀being฀at฀present.฀This฀is฀at฀the฀heart฀of฀an฀issue฀that฀will฀
increasingly฀affect฀the฀homes฀of฀all฀ageing฀populations.
ACKNOWLEDGMENTS
An฀earlier฀draft฀of฀this฀article฀was฀presented฀at฀the฀symposium฀
“Interior฀Insight:฀Design,฀Ethnography฀and฀the฀Home,”฀Royal฀College฀
of฀ Art,฀ November฀ 24–25฀ 2005.฀ Thanks฀ to฀ the฀ organizers฀ Inge฀
Daniels฀and฀Alison฀Clark฀for฀the฀invitation฀to฀contribute฀as฀well฀as฀
the฀participants฀and฀discussants฀for฀their฀intellectual฀generosity฀in฀
offering฀many฀constructive฀suggestions.฀The฀telecare฀consortium฀
“Supporting฀Independence:฀New฀Product,฀New฀Practices;฀New฀Com-
munities”฀comprises฀Barnsley฀District฀Hospital,฀Dundee฀University,฀
Imperial฀College,฀The฀Pocklington฀Trust,฀Tunstall฀Group฀Limited,฀and฀
University฀College฀London.฀In฀particular,฀the฀authors฀wish฀to฀thank฀
Hazel฀Aldred,฀Simon฀Brownsell,฀and฀Mark฀Hawley฀of฀Barnsley฀District฀
Hospital.฀The฀consortium฀gratefully฀acknowledges฀the฀assistance฀
of฀the฀Engineering฀and฀Physical฀Sciences฀Research฀Council฀and฀
the฀EQUAL฀European฀Social฀Fund฀Community฀Initiative฀for฀providing฀
funding.
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