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Living  together:  discourses  on  home  and   competence  in  an  inclusive  community  in  Kent       Caroline  Bennett                   Submitted  in  partial  fulfillment  for  the  degree  of     Master  of  Arts  in  Visual  Anthropology     School  of  Anthropology  and  Conservation,   University  of  Kent     2011  


Living together:  discourses  on  home  and   competence  in  an  inclusive  community  in  Kent       Caroline  Bennett           15,297  words  

   

Submitted in  partial  fulfillment  for  the  degree  of     Master  of  Arts  in  Visual  Anthropology     School  of  Anthropology  and  Conservation,   University  of  Kent     2011  

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Abstract

Freedom   of   choice   in   how   to   live   your   life   does   not   sound   revolutionary.     However,   in   the   lives   of   many   people   with   learning   disabilities,   other   people   often  make  these  choices  for  them.    L’Arche  Kent  is  a  community  in  which  both   people  with  and  without  learning  disabilities  ‘choose  to  live  and  make  a  home   together’   (L’Arche   Kent   2011:   emphasis   added).     Undertaking   fieldwork   in   this   community,   this   project   explores   concepts   of   home   and   community,   and   examines   wider   discourses   associated   with   choice   in   this   matter   -­‐   concepts   of   competence  affecting  notions  of  human  status  and  personhood.    This  research   shows   that   it   is   through   living   together   in   a   community   that   recognises   and   accepts  difference  that  L’Arche  Kent  is  able  to  support  people  with  and  without   disabilities   to   become   integral   parts   of   that   community,   and   it   is   through   this   participation   that   people   are   recognized   as   competent   adults,   capable   not   only   of   making   choices   and   decisions,   but   also   of   directing   their   lives   and   the   relationships   within   it.     The   production   of   an   integral   ethnographic   film   enables   a   collaborative   ‘shared   anthropology’,   which   attempts   to   dispel   some   of   the   stereotypes   surrounding   people   with   learning   disabilities   as   people   requiring   pity   and   care,   people   to   be   admired   (Shwartz   et   al.   2010),   or   people   who   are   ‘less  than  human’  (Jenkins  1993:  17).  

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Acknowledgements

This  project  would  not  have  been  possible  without  the  help  and  support  of  so   many   people   who   are   too   numerous   to   name   but   who   were   integral.     If   your   name  is  not  mentioned  here,  please  read  it  between  the  lines.  

I am,   of   course,   indebted   to   the   community   of   L’Arche   Kent.     Thank   you   for   opening   your   doors   and   making   me   welcome.     I   am   especially   grateful   to   everyone   at   Cana   House   for   never   allowing   me   to   feel   anything   other   than   at   home.  

Thank you   to   the   anthropology   department   at   the   University   of   Kent,   in   particular   to   Glenn   Bowman   for   his   invaluable   input   and   support   throughout   the   year,   to   Mike   Poltorak   for   his   continued   encouragement,   and   to   Matt   Hodges  for  forcing  me  to  question  everything  and  accept  nothing.        

And of  course  to  my  family  and  friends  who  never  stop  listening.    

In the  words  of  Disraeli:     I  feel  a  very  unusual  sensation  -­‐  if  it  is  not  indigestion,     I  think  it  must  be  gratitude.  

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Contents  

Abstract

3

Acknowledgements  

4

Introduction  

6

A note  on  language    

10

                         12  

Research aims  and  questions  

13

Methodology  

14

Informants

14

A note  on  consent  

16

Visual methodology    

17

Analysis and  feedback  

18

Limitations

Background and  methodology  

19

Introducing L’Arche    

21

L’Arche Kent    

22

The houses  of  L’Arche  Kent    

23

Household routines    

24

The people  of  L’Arche  Kent    

27

29

A ‘family-­‐like’  environment    

30

Home comforts  

34

Challenges to  creating  home  

36

Home and  community  

38

The benefits  of  community    

43

The risks  of  community  

45

On competence,  equality  and  normality    

49

Eternal innocence  

50

Everyday living  

52

What is  normality?  

53

Interdependence

56

Can there  be  equality?  

57 62  

On home  and  community      

Conclusions  

References  

                         66  

Appendix one    

   

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Introduction   In  September  2010  I  visited  a  photographic  exhibition  held  by  a  community  of   artesans  living  and  working  in  Canterbury.    Nothing  unusual  in  that.    Except  that   this  community  was  L’Arche  Kent:  a  community  where  people  with  and  without   learning   disabilities   ‘choose   to   belong   and   create   a  home   together’   (L’Arche   Kent  2011).    Having  worked  in  supported  housing  in  the  past,  I  recognised  the   uniqueness   of   a   community   where   people   with   learning   disabilities   choose   their   home   and   their   companions   in   the   same   way   as   do   non-­‐disabled   people,   and   where   non-­‐disabled   people   choose   to   have   their   home   with   disabled   people   rather  than  being  only  employed  carers  and  companions.  

Despite social   and   legislative   drives   in   the   UK   towards   ‘independent’   living,   advocacy  of  equal  opportunities,  and  the  widespread  adoption  of  the  argument   that   disability   (both   physical   and   intellectual)   is   a   social   production   not   a   medical  fact  (Feldmeier  White  2002;  Ward  &  Flynn  1994),  people  with  learning   disabilities  remain  disempowered,  often  still  being  viewed  as  ‘less  than  human   …   [as   people   with]   perpetual   childhood   and   innocence’   (Jenkins   1993:   17);   people   whose   competence   does   not   afford   them   full   adult   human   status   and   the  rights  associated  with  this.    

Independent living   for   many   people   in   the   UK   with   learning   disabilities   involves   living  in  Supported  Housing,  choice  of  which  is  usually  made  by  guardians  (Clear   &  Horsfall  1997).    Non-­‐disabled  people  in  these  communities  are  primarily  paid   personnel,   and   relationships   between   staff   and   residents   are   therefore   6


controlled and   constrained   by   professional   boundaries.     L’Arche   however,   values  friendships  and  relationships  within  the  community,  and  believes  that  ‘it   is  people  that  matter;  to  love  and  care  for  the  people  that  are  there,  just  as  they   are.’  (Vanier  1979:  20:  emphasis  added).    The  community  is  constructed  on  the   ethos  that  every  individual  is  a  valued  contributing  member  of  the  community,   and  difference  is  to  be  acknowledged  and  accepted.  

As Jenkins  (1993:  20)  states:  

Wherever they  live…  people  with  learning  difficulties  will  continue  to  have   to   contend   …   with   beliefs   and   practices   which   undermine   or   deny   their   dignity   and   value   as   persons.     These   illuminate   deep-­‐rooted   cultural   concerns  about  the  definition  of  humanity….  

L’Arche Kent   offers   a   unique   opportunity   to   explore   a   portion   of   the   UK   population   where   perhaps   this   is   not   the   case:   where   people   with   learning   disabilities  are  ostensibly  afforded  equal  status  with  non-­‐disabled  people.    This   presents   the   opportunity   to   explore   concepts   surrounding   the   attribution   of   human  status  to  individuals,  of  personhood,  competence  and  choice  for  people   with   learning   disabilities;   if   and   how   these   are   constructed,   reconstructed,   reinforced  and  maintained  through  living  in  the  community  of  L’Arche.  

Disability and   the   place   of   disabled   and   other   excluded   people   within   society   has  long  been  a  personal  interest.    This  research  builds  on  that  conducted  for   my   undergraduate   degree   (Bennett   2000)   and   on   other   previous   research   undertaken  on  disability  and  inclusion  (Bennett  2004).      

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Little research   has   been   conducted   previously   research   on   living   choices   for   disabled   people;   although   Rodman   &   Cooper   (1995)   examined   the   affect   of   accessibility  discourses  on  the  identity  of  disabled  people  living  in  co-­‐operatives   in   Canada,   Morris   (1994)   explored   independent   living   for   people   with   physical   disabilities,   and   Davies   &   Jenkins   (1993)   looked   at   discourses   within   families   when  people  with  learning  disabilities  leave  home,  there  is  a  need  for  research   examining   the   choices   surrounding   home   for   people   with   learning   disabilities,   and  what  this  can  tell  us  more  generally  about  attributes  of  humanness  in  the   UK,   because   it   is   in   the   study   of   the   particular   that   wider   comments   can   be   made  (Abu  Lughod  1991).    This  study  aims  to  fill  part  of  this  gap  along  with  an   identified  gap  in  learning  disability  research:  that  of  participatory  multi-­‐method   research   examining   life   experiences   of   people   with   learning   disabilities   rather   than  simply  investigating  professional  practice  (Connor  et  al.  2011).  

This dissertation   consists   of   two   parts:   this   written   thesis,   and   a   short   film   about   the   L’Arche   Kent   community1.     These   can   be   viewed   as   stand   alone   entities   but   also   as   complementary   formats   of   dissertation   presentation.     The   film   was   produced   collaboratively   with   the   community:   in   particular   with   one   disabled   member.     Submitting   a   collaboratively   produced   film   as   part   of   this   dissertation  fulfils  four  aims  of  this  research:  to  provide  an  alternative  form  of   knowledge   transmission   and   understanding;   to   produce   an   accessible   form   of   the   thesis   to   give   back   to   the   research   community;   to   enable   the   community   of   L’Arche  Kent  to  direct  and  control  the  knowledge  being  exported  about  them;  

1 The  film  Living  Together  is  included  with  this  dissertation.  

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but most   importantly,   to   enable   the   voice   of   a   perhaps   otherwise   excluded   minority  to  be  heard  and  thereby  to  discuss  competence  in  an  alternative  form   through   shared   production.     The   written   thesis   meanwhile   offers   a   more   theoretical  discussion  and  is  aimed  at  a  more  academic  audience.    

This written  thesis  is  separated  into  five  main  sections.    After  a  brief  outline  of   research   methodologies,   I   will   introduce   L’Arche   Kent:   the   international   community   of   which   it   is   part,   the   institutional   set-­‐up,   daily   routines,   and   the   people   who   call   it   home.     Following   this   I   will   examine   concepts   of   home   and   community   within   L’Arche   Kent,   before   exploring   notions   of   competence,   equality   and   normality.     Findings   will   be   discussed   within   each   section,   before   drawing  conclusions  to  the  research.  

As this   study   will   show,   it   is   within   the   community   that   identity   can   be   expressed,   and   where   people   are   recognized   for   their   individual   attributions   rather   than   by   their   disabilities.     The   community   is   therefore   central   to   the   acknowledgment   of   competence   and   personhood   of   people   with   learning   disabilities.    How  it  achieves  this  is  explored  in  both  the  film  and  written  thesis.      

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A note  on  language  

Language is   difficult.     As   Jackson   (1995:   5)   comments   ‘life   cannot   be   pressed   into   the   service   of   language’.     And   yet   it   is   our   main   form   of   expression   in   academia  and  so  must  be  used.      

Definition and  labelling  of  people  is  unavoidably  discriminatory,  done  as  it  is  by   one  group  of  another  (ibid:  14).    An  adequate  term  to  describe  the  plethora  of   disorders   and   impairments   that   constitute   learning   disabilities   does   not   exist:   acceptable   terms   are   debated   throughout   the   world   and   even   within   populations   definitions   are   inconsistent   (Davies   &   Jenkins   1997).     The   term   learning  disability  is  itself  problematic.    Disability  implies  negative  capacities:  a   problem:   a   difficulty.     Learning   meanwhile   suggests   that   the   impairment   is   with   the   ability   to   take   on   new   information.     In   many   cases   this   is   true,   however,   there  are  also  cases  where  people  learn  very  well.    The  term  was  introduced  in   the  UK  to  replace  ‘mental  handicap’,  although  other  terms  are  also  commonly   used:   People   First,   an   advocacy   group   for   people   in   the   UK   uses   the   term   ‘learning  difficulties’,  whilst  professional  agencies  in  the  UK  argue  that  ‘learning   difficulties’   and   ‘learning   disabilities’   are   different   (BILD   2010).     In   academic   literature   the   term   ‘intellectual   disability’   is   becoming   more   common,   and   internationally  the  term  ‘mental  disability’  or  even  ‘mental  handicap’  can  still  be   heard2.      

2

For a   more   in-­‐depth   debate   on   the   term   learning   disability   readers   are   directed   to   Sleeter   (2010  [1987])  and  Connor  and  Ferri    (2010).  

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Within L’Arche   the   language   used   is   very   deliberately   chosen   to   prevent   segregation   and   hierarchy:   people   with   learning   disabilities   are   ‘core   members’,   whilst  non-­‐disabled  people  are  ‘assistants’.    For  the  purpose  of  this  thesis  I  will   use   the   terms   ‘core   member’   and   ‘assistant’   when   referring   to   people   within   the   L’Arche   community,   and   ‘people   with   learning   disabilities’   for   more   general   points,   where   a   learning   disability   is   defined   according   to   the   World   Health   Organisation’s  definition  (2001):    

a state   of   arrested   or   incomplete   development   of   mind…   significant   impairment   of   intellectual   functioning   [and]   significant   impairment   of   adaptive/social  functioning.  

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Background and  methodology  

Until   recently,   the   anthropological   literature   on   learning   disability   remained   sparse.     Much   of   the   literature   that   exists   explores   discourses   on   identity   (for   example  Brueggemann  et  al.  2001,  Feldmeier  White  2002,  Jenkins  1993,  Moser   2006,  Woodill  1994).    Transitions  into  adulthood  are  another  favoured  topic,  as   this   indicates   the   moment   of   individuation   in   the   eyes   of   many   non-­‐disabled   people.     In   their   study   of   young   adults   with   learning   disabilities,   Davies   and   Jenkins   (1997)   showed   how   self-­‐identity   is   primarily   formed   via   embodied   experience,   whilst   external   discourses   had   no   great   effect.     This   is   in   direct   contrast   to   people   with   mental   health   issues   (Desjarlais   2000),   or   physical   disabilities  (Abberley  1994),  who  are  not  only  aware  of  the  external  discourses   surrounding  their  identity,  but  actively  engage  or  disengage  in  these.    However,   there   is   very   little   existing   that   examines   the   life   experiences   of   people   with   learning   disabilities.     Even   within   the   field   of   disability   studies,   virtually   no   literature   exists   on   this   subject,   and   in   an   examination   of   research   within   learning   disabilities   studies   (for   which   at   least   four   specific   academic   journals   exist),   Connor   et   al.   (2011)   found   that   in   2008,   91%   of   articles   used   solely   quantitative  research  methods,  primarily  to  examine  professional  practice  and   special  educational  theory,  and  only  two  articles  involved  people  with  learning   disabilities  in  the  research.  

This project   has   the   potential   to   help   fill   those   gaps.     In   a   community   of   both   disabled  and  non-­‐disabled  people,  both  were  given  equal  attention  and  access   12


to the   research,   but   more   significantly,   the   filmed   thesis   was   produced   in   collaboration  with  someone  with  learning  disabilities.  

Research aims  and  questions  

This project  aims  to  explore  concepts  of  home  and  community  and  how  these   relate   to   notions   of   competence   and   the   attribution   of   human   status   to   individuals   within   L’Arche   Kent.     Exploring   experiences   of   both   disabled   and   non-­‐disabled  people,  the  following  questions  were  asked:  

How do   people   live   their   lives   in   L’Arche   Kent?     How   does   this   reflect  ideas  of  ‘home’  and  ‘community’?  

How is   competence   constructed,   reinforced   and   experienced   in   L’Arche?      

Does living   in   L’Arche   Kent   tell   us   anything   more   widely   about   ideas  of  competence,  independence  and  human  status  for  people   with  learning  disabilities?    

The research   explores   whether   ideas   of   individual   competence   relate   to   the   value  and  status  of  people  with  learning  disabilities  as  autonomous  individuals.     This   enables   a   wider   discussion   of   the   concept   of   personhood;   the   factors   necessary   for   its   attribution   to   other   people,   and   differences   in   attribution   between   disabled   people   and   non-­‐disabled   people.     These   facilitate   a   broad   examination   of   the   idea   of   equality   of   disabled   people,   which   is   so   often   advocated,  but  rarely  achieved.    

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Methods

Based on   fieldwork   conducted   between   April   and   July   2011,   multi-­‐variant   research   methods   were   used   to   provide   a   holistic   study   that   is   of   use   to   the   collaborating  community  as  well  as  the  author,  and  provides  equal  access  and   opportunity   to   both   disabled   and   non-­‐disabled   people   to   participate   in   and   direct   the   research   conducted.     The   research   took   place   in   four   stages:   initial   participant   observation   and   informal   conversations;   filmed   observation   and   semi-­‐structured   interviews;   data   analysis,   and   film   editing,   write   up   and   feedback.      

Informants  

The L’Arche   Kent   community   consists   of   102   people   across   the   county.     I   was   keen   to   involve   a   wide   proportion   of   this   community   within   my   research   for   two  reasons:  because  the  community  is  the  central  defining  feature  of  L’Arche   Kent,  and  because  despite  a  shared  ethos,  each  of  the  separate  houses  works   very  differently,  and  individuals  within  the  houses  even  more  so.      

Unlike some  (Sixsmith  et  al.  2003),  I  had  no  issues  accessing  the  community.    I   was   fortunate   that   Cana   House,   a   house   of   12   people   in   Eythorne,   Kent,   welcomed  me  from  the  beginning  and  provided  me  links  within  the  community.     I  was  immediately  given  the  role  of  assistant,  companion,  escort  and  friend.    It   is   from   this   house   that   the   majority   of   my   observations   derived   and   my   key   informants   were   identified;   three   people   here   became   key   collaborators:   two  

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assistants and   one   core   member.     I   also   visited   other   houses,   community   gatherings,  and  was  fortunate  in  being  able  to  attend  a  gathering  of  L’Arche  UK   in  Manchester  in  July.    

Because the   wider   imagined   community   of   L’Arche   is   so   integral   to   this   research,   I   was   keen   to   reflect   this   and   the   ethos   of   welcome   within   L’Arche   by   involving   whoever   wished   to   participate.     I   sent   invitations   for   interviewees   out   across  the  community  and  was  contacted  by  several  people.    In  addition  to  my   key  informants  I  interviewed  13  other  people,  two  of  whom  are  core  members.     All  these  interviews  were  filmed.    Names  were  kept  on  the  film  but  have  been   changed  throughout  this  written  thesis.    The  interviews  consisted  of  a  mixture   of  individual  and  group  discussions:  several  people  wanted  to  be  involved  but   did   not   want   to   be   individually   interviewed   and   so   took   part   in   group   discussions.    This  reflects  two  aspects  of  the  research:  the  presence  of  a  camera   made   some   people   uncomfortable   and   they   felt   more   secure   within   a   group,   but   more   significantly,   people   within   the   L’Arche   community   lead   busy   lives   often   surrounded   by   noise   and   chaos,   and   group   interviews   enabled   the   research   to   be   conducted   without   taking   too   much   time   out   of   rest   and   private   time.    

I found   group   interviews   to   be   a   useful   technique   in   encouraging   people   to   think   through   their   own   thoughts   in   the   short   timescale   required   by   this   research.     Whilst   I   was   unable   to   interview   many   people   more   than   once,   interviewing   in   a   group   enabled   people   to   bounce   ideas   off   one   another   and   question  each  other’s  answers.    It  also  enabled  me  to  avoid  ‘directing’  answers,   15


although of   course   it   did   not   prevent   other   participants   from   doing   this.     Group   discussions   enable   an   insight   into   people’s   shared   understandings,   although   there   can   be   a   risk   that   people   will   not   provide   negative   information,   especially   if  the  interviews  occur  with  supervisors  or  leaders  (Bernard  1995:  226;  227).    To   help   negate   this   I   ensured   that   where   possible   group   interviews   took   place   between  contemporaries  of  equal  working  status.      

A note  on  consent  

Informed consent   was   a   concern   during   my   research.     I   was   often   questioned   on  this  issue  from  people  outside  the  community:  Whom  had  I  sought  it  from?     How   did   I   ensure   I   was   not   exploitative?     How   did   I   ensure   consent   was   maintained  throughout  the  process?  

These inquiries  are  telling   about   wider   attitudes  towards  people  with  learning   disabilities.     No-­‐one   seemed   to   doubt   that   for   non-­‐disabled   people   decisions   would   be   individually   decided   and   respected.     However,   there   was   a   wider   assumption   that   core   members   would   not   be   able   to   understand   what   I   was   doing   and   why,   would   not   be   competent   in   making   decisions   of   participation,   nor  would  they  remain  competent  in  this  decision-­‐making.  

I approached  consent  in  the  same  way  for  everyone  whether  they  are  disabled   or  not:  if  I  was  filming  I  asked  permission  of  each  individual,  assumed  each  was   capable  of  making  this  decision,  and  respected  the  decisions  made  by  not  then   checking   them   with   anyone   else.     In   fact   consent   was   one   of   the   first   areas  

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where the   attribution   of   full   competence   of   people   with   learning   disabilities   was   apparent   within   L’Arche:   I   was   never   once   directed   to   managers   or   assistants  for  consent,  but  to  each  individual  separately.    To  me  this  formed  an   important   part   of   my   own   work:   I   was   committed   to   providing   a   platform   for   people   with   learning   disabilities   to   be   involved   in   their   own   research,   and   this   was  only  possible  if  I  respected  their  competence  in  this  matter.  

Visual methodology  

The use  of  visual  research  methods  was  particularly  important  for  this  project.     Some   of   the   members   of   L’Arche   Kent   are   non-­‐verbal   and   non-­‐literate,   consequently   a   method   was   required   which   enabled   collaboration   in   a   non-­‐ textual   /   verbal   format.     Film   allowed   this,   and   encouraged   a   more   equal   contribution  from  people  who  speak  and  those  who  do  not.    Film  has  also  been   shown  to  be  an  effective  method  of  dispelling  stereotypes  of  disabled  people   (Schwartz   et   al   2010),   as   well   as   offering   a   means   of   representing   the   visual   acquisition   of   knowledge   that   occurs   in   non-­‐verbal   people   (Pink   2003).     The   production  of  a  collaboratively  produced  film  therefore  enabled  the  community   to   voice   their   own   opinions,   and   also   to   effect,   control   and   consciously   direct   the   knowledge   being   exported   elsewhere   (Pink   2007).     This   helps   balance   the   ethnographer-­‐informant   relationship,   as   well   as   the   view   of   people   with   learning   disabilities   as   ‘less-­‐than   human’   (Jenkins   1993:   17).     Filming   therefore   allowed   people   to   engage   in   the   research   in   a   way   that   a   text-­‐based   project   would  not,  especially  in  the  case  of  non-­‐verbal  and  non-­‐literate  people.  

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It was   important   to   me   that   the   filming   was   a   collaborative   affair   and   did   not   intrude   too   much   on   people’s   lives.     I   spent   several   weeks   within   the   community  before  I  started  filming  and  I  was  lucky  that  many  people  were  keen   to  be  involved.    In  addition  to  my  filming,  two  core  members  borrowed  cameras   to   film   their   own   lives,   and   many   other   people   took   part   in   the   filming   on   an   ad   hoc   basis.     The   resulting   footage   is   not   only   used   in   the   filmed   thesis,   but   will   also  form  several  short  films  to  be  used  on  the  L’Arche  Kent  website.  

In addition  to  the  filmed  material  I  kept  a  fieldwork  diary  and  regular  notes  on   my   findings.     Analysis   of   all   the   material   was   important   for   elucidating   the   findings  of  this  research.          

Analysis and  feedback  

All interviews  were  transcribed  for  analysis.    The  footage  filmed  by  the  two  core   members   was   particularly   important:   it   provided   insight   into   what   each   individual  views  as  important,  and  offers  a  view  of  how  each  sees  the  world  and   the  community  within  which  they  live.  

Feedback was   an   essential   part   of   the   research   process   for   this   project.     Because  the  filmed  research  was  collaboratively  produced,  it  was  important  to   me   that   the   edited   film   was   screened   to   the   community   for   feedback   before   submission.     This   ensured   two   things:   that   the   community   was   comfortable   with  the  information  about  them  being  portrayed  to  others,  and  that  they  could   identity  any  gaps  that  as  an  outsider  I  may  have  missed.    

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Limitations

Working with   a   mixed   community   of   disabled   and   non-­‐disabled   people   presented   a   challenge   in   ensuring   that   all   people   were   given   equal   access.     This   was   particularly   important   for   non-­‐verbal   members   of   the   community.     This   difficulty  was  overcome  through  the  amount  of  time  I  spent  in  the  company  of   core   members   within   the   community:   from   the   beginning   I   was   assigned   the   role  of  companion,  in  particular  to  Chris:  an  82-­‐year-­‐old  member  of  Cana  House.     Spending  time  with  him  and  seeing  how  he  lived  his  life  became  an  important   part   of   my   research   on   how   home   and   community   are   constructed   within   L’Arche,   and   how   competence   is   assigned   and   respected.     In   addition,   one   of   the   core   members,   Sarah3,   who   borrowed   a   camera   is   essentially   non-­‐verbal;   analysing  her  footage  provided  important  insights  into  how  she  views  her  home   and  the  community.    Because  of  this  her  filming  became  an  integral  part  of  the   filmed  thesis.    

The short  period  of  fieldwork  limited  the  depth  of  research  possible,  however,   the  advantages  conferred  by  being  a  ‘native  anthropologist’  helped  negate  this.     Although   critiqued   by   some,   native   anthropology   confers   certain   beneficial   advantages:  it  can  enable  rapport  to  be  built  quickly  and  rapid  assimilation  to  a   group   due   to   shared   understanding   of   language   and   underlying   rules   of   the   community   (Jacobs-­‐Huey   2002).     It   can   also   encourage   greater   participation   from  informants  who  may  feel  an  ownership  of  a  project  in  and  for  their  own  

3 Because  Sarah  is  so  prominent  in  the  filmed  thesis,  her  name  has  not  been  changed  in  the  

written thesis  when  discussing  aspects  of  filming.  

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community (Kuwayama   2003).     With   fieldwork   of   only   10   weeks,   rapid   understanding   and   assimilation   was   necessary   for   this   research:   working   as   a   ‘native’   anthropologist   went   some   way   towards   negating   the   difficulties   inherent  in  this  limited  fieldwork  time.    These  limitations  were  also  reduced  by   making  myself  useful  in  the  community:  at  the  beginning  of  my  time  in  Cana  I   made   no   attempt   at   structured   research,   instead   I   helped   out   in   the   house   where   extra   support   was   needed   due   to   a   shortage   of   assistants.     This,   along   with   the   mixture   of   research   methodologies   used,   meant   that   not   only   were   people  willing  to  take  part  in  my  research,  but  they  somewhat  unknowingly  did,   by  allowing  me  to  be  part  of  the  community  from  the  beginning.    

The fact  that  the  community  were  happy  and  in  many  cases  keen  to  be  involved   in   this   research   negated   many   of   the   limitations   of   this   project,   and   the   continued   process   of   involvement   and   feedback   allowed   the   community   not   only  to  feel  involved,  but  also  to  direct  the  research  where  deemed  necessary.     This   provided   ownership   to   the   project   from   the   community   itself,   and   it   was   this,  more  than  anything  else,  that  enable  this  project  to  proceed  successfully.      

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Introducing L’Arche  

L'Arche seeks   to   reveal   the   particular   gifts   of   people   with  learning  

disabilities who   belong   at   the   very   heart   of   their  communities   and   who  

call others  to  share  their  lives.    (L’Arche  Charter:  L’Arche  Kent    2011)  

L’Arche Kent  is  an  intentional  community:  a  community  ‘formed  with  a  specific   purpose   in   mind’   (Love   Brown   2001:   3),   belonging   to   the   much   larger   community   of   L’Arche   International.     It   is   constructed   on   the   idea   that   all   people,  regardless  of  ability,  issues  or  problems,  are  valuable  human  beings  and   that   the   best   way   of   encouraging   this   recognition   is   through   building   relationships  with  marginalized  and  excluded  people  (Vanier  1979;  1992;  1999).     This   originates   from   a   Christian   ethos   of   acceptance,   and   ‘walking   with   the   wounded’  (Vanier  1992:  16).    Although  established  and  based  on  Christian  roots,   L’Arche  opens  its  doors  to  ‘people  of  all  faiths  and  none’  (L’Arche  UK  2011),  and   whilst  spirituality  is  still  an  important  principle  of  the  community,  this  spirituality   is  now  more  about  acceptance  of  all  people  than  it  is  specifically  Christian.  

Originally conceived   at   a   time   when   institutionalization   of   disabled   and   mentally-­‐ill  people  was  losing  favour,  and  care  in  the  community  was  emerging   as   a   favoured   social   care   setting,   L’Arche   has   grown   from   one   house   of   three   people  in  1964,  to  an  international  community  of  over  5,000  people  living  in  137   communities  across  40  countries  (L’Arche  International  2011).    Its  founder  Jean   Vanier  remains  living  in  the  original  community  at  Trosly-­‐Breuil,  and  although  he   recently   stated   that   in   contemporary   society   he   would   be   as   likely   to   start   a  

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community for  elderly  people  or  the  mentally  ill  (Jean  Vanier  2011),  the  fact  that   L’Arche   currently   provides   a   home   for   over   5,000   people   indicates   a   continuing   need.     L’Arche   is   based   on   the   idea   that   living   in   community   not   only   provides   a   safe   and   rewarding   environment   for   people   with   learning   disabilities   to   live   -­‐   somewhere   they   can   be   valued   and   given   dignity   as   human   beings   -­‐   but   also   that   it   is   through   ‘simple   shared   lives’   lived   ‘in   communion’   with   vulnerable   people  that  others  can  grow,  express  themselves,  and  live  a  virtuous  life  (Vanier   1979;   1992;   1998).     These   concepts   are   central   to   why   people   come   to   the   community,   why   people   stay,   and   how   people   view   the   homes   within   which   they  live.  

L’Arche Kent  

L’Arche Kent  was  the  first  L’Arche  community  in  the  UK.    It  was  established  in   1974   by   Thérèse   Vanier,   sister   of   the   original   founder   Jean   Vanier.     Of   the   founding   members   of   L’Arche   Kent,   three   (including   Thérèse   Vanier)   remain   within  the  L’Arche  community.    Consisting  of  five  shared  houses  (Cana  House  in   Eythorne,   Rainbow,   Faith   House,   and   The   Harbour   in   Canterbury,   and   Little   Ewell   in   Barfrestone)   two   workshops   (St   Radigunds   in   Canterbury   and   the   Wellspring  in  Barfrestone),  and  three  people  living  in  flats  (sometimes  classified   as  a  sixth  house),  the  community  is  home  to  approximately  82  people:  22  core   members  and  60  assistants.    It  also  counts  a  further  20  volunteers  and  friends   as   part   of   its   larger   community.     Assistants   come   from   all   over   the   world   to   live   and   work   in   L’Arche   Kent:   at   present   there   are   people   from   Canada,   Estonia,   Ethiopia,   Germany,   Hungary,   India,   Kenya,   Mauritius,   Morocco,   Nepal,   the   22


Philippines, Poland,  Romania,  South  Korea,  the  UK  and  the  US.    Over  two-­‐thirds   of  the  community  are  female,  more  than  three-­‐quarters  are  over  30-­‐years-­‐old,   and  just  under  half  of  the  assistants  have  been  in  the  community  for  three  years   or  longer.    When  first  established  the  community  consisted  of  a  mixture  of  core   members,   assistants   who   lived   and   worked   in   the   community,   and   members   who   lived   in   the   community   but   worked   elsewhere.     However,   in   present   times   all   members   of   the   community   live   and   work   within   L’Arche   Kent.     The   community   is   physically   linked   via   a   minibus   and   carpool   service,   allowing   people  to  travel  between  the  different  projects  both  for  work  and  recreation.     Primarily   statutory   grant   funding   in   the   form   of   supported   living   income   for   core  members  finances  the  community,  although  a  small  portion  of  its  income   (approximately  four  percent)  is  from  charitable  donations.  

The houses  of  L’Arche  Kent  

The shared   houses   within   L’Arche   vary   in   layout   but   all   essentially   follow   the   same   pattern.     Individuals   within   the   house   have   their   own   private   bedroom   (with  the  odd  ensuite  where  necessary),  but  everything  else  within  the  house  is   shared4.     The   downstairs   of   the   houses   have   the   kitchen,   dining   room   and   at   least   one   lounge   (although   Rainbow,   Cana   and   Little   Ewell   have   two   lounge   areas),  a  small  office  and  at  least  one  accessible  fully  fitted  bathroom.    In  Cana   House  four  people  also  have  bedrooms  on  the  ground  floor.    Upstairs  are  the   bedrooms,   bathrooms   and   additional   toilets:   numbers   depend   on   the   house.     4  This  was  not  always  the  case:  in  the  initial  days  of  L’Arche  Kent  some  assistants  and  core  

members shared  rooms.    Contemporary  care  standards  and  changing  expectations  do  not  however   allow  this  today.  

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Although the   ideal   of   L’Arche   is   for   everyone   to   live   under   the   same   roof,   practicalities   mean   that   this   is   not   always   possible:   although   four   of   the   properties  are  owned  exclusively  by  the  community  (Rainbow,  Little  Ewell,  The   Harbour  and  St  Radigunds  workshop),  the  remaining  properties  are  leased  from   Sanctuary   Housing   Association   and   hold   with   them   the   related   constraints   of   leasehold.     Cana   House   for   example,   has   room   for   eight   people   within   the   main   building;  however,  twelve  people  call  Cana  home,  so  four  live  in  a  nearby  house.     Likewise  at  Faith  House.    In  addition  to  these  standard  layouts,  Little  Ewell  has  a   chapel  on  the  ground  floor.    This  may  reflect  the  history  of  L’Arche  Kent:  Little   Ewell   was   the   original   house   for   the   community   when   it   was   more   strongly   based   in   its   Christian   roots.     Rainbow   too   had   its   own   dedicated   chapel,   however,   its   use   was   recently   re-­‐assigned   when   changing   support   needs   meant   that  a  member  of  the  house  required  a  downstairs  ensuite  room.    Each  house   also   has   a   garden,   usually   no   more   than   a   mixture   of   grass,   flowerbeds   and   vegetable  patches.    Residents  are  free  to  come  and  go  as  they  please,  although   those  core  members  with  particular  support  needs  will  always  be  accompanied.  

Household routines  

As with  any  household  or  establishment,  each  of  the  houses  in  L’Arche  Kent  has   daily,  weekly  and  annual  routines,  which  help  provide  stability  and  structure  to   the   lives   of   the   people   within   the   community.     The   following   routine   is   from   Cana   House   where   I   was   based   for   my   research;   however,   the   other   houses   follow  a  similar  pattern.      

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During the   week   ‘Rise   and   Shine’   occurs   at   around   7am:   one   assistant   wakes   core   members   and   helps   them   get   ready   for   the   day,   whilst   another   prepares   breakfast.     Breakfast   is   eaten   together   and   consists   of   the   usual   selection   of   cereals   and   breakfast   foods.     At   around   9am   the   community   minibus   or   car   arrives   to   take   people   to   work   or   drop   them   off   at   other   houses.     In   Cana   all   core   members   work   except   Chris,   who   at   82-­‐years-­‐old   has   long   since   retired.     During  the  day  houses  are  cleaned,  gardens  tidied,  and  meetings  take  place.    At   around   4pm   the   minibus   returns   to   drop   people   back   home.     A   pot   of   tea   is   prepared   and   everyone   comes   together   to   talk   about   their   day   and   look   through   their   record   books5.     In   the   evening   people   relax   as   they   choose   or   undertake   their   necessary   chores:   laundry,   tidying   and   so   on.     Assistants   take   turns  preparing  dinner,  often  with  help  from  other  members  of  the  house  (core   members   and   assistants).     Dinner   is   eaten   together,   usually   around   6pm:   at   the   beginning  and  the  end  of  the  meal  grace  is  said.    Whilst  dinner  is  being  prepared   other   assistants   spend   time   with   those   core   members   requiring   high   levels   of   support,   whilst   others   in   the   house   relax   as   they   choose.     People   go   to   bed   anytime  after  9pm,  although  one  assistant  stays  awake  in  case  of  any  support   needs.    The  weekend  is  a  relaxed  affair  with  only  rough  meal  times  structuring   the  leisure  time.      

The daily   routine   is   organised   by   rota,   on   which   both   assistants   and   core   5  As  a  residential  care  home  L’Arche  Kent  has  certain  statutory  obligations  that  it  must  undertake.    

One of  these  is  the  daily  recording  of  activities,  moods  and  general  status  of  each  core  member.     These  records  are  split  into  four  sections:  morning,  daytime,  evening  and  night.    In  order  to  keep   core  members  involved  in  their  own  care,  L’Arche  Kent  provides  each  with  a  book  for  these   recordings.    They  help  assistants  fill  in  each  section,  and  also  show  it  to  other  assistants.    Reading   the  books  has  become  an  integral  part  of  the  daily  routine  and  is  an  important  aspect  of   competence  attribution  as  will  be  discussed  later  in  the  dissertation.  

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members are   included.     The   rota   is   displayed   visually   in   one   of   the   communal   areas;   photographs   are   used   to   illustrate   those   responsible   for   each   job.     This   allows  non-­‐literate  members  of  the  community  to  keep  track  of  who  is  around   in   the   same   way   as   literate   members.     In   Cana   one   of   the   core   members,   Steven,   is   responsible   for   updating   the   weekly   rota;   he   also   keeps   a   watchful   eye  on  it  throughout  the  week  to  keep  people  on  track.      

In order  to  keep  everyone  involved  in  house  and  community  plans  each  house   has  a  weekly  meeting  that  everyone  attends.    This  usually  occurs  one  evening   after  dinner.    At  this  meeting  people  discuss  upcoming  plans,  issues  arising,  and   the   diarised   appointments   for   the   next   week   are   shared,   keeping   everyone   updated.  

There are   also   annual   events,   although   these   are   more   flexible   than   the   daily   and  weekly  routines:  holiday  celebrations,  a  pilgrimage  and  summer  holidays.  

These elements  of  routine  and  inclusion  help  to  provide  stability  and  support  to   all  members  of  the  community.    They  are  also  an  important  way  that  inclusion   and   competence   are   supported   within   L’Arche   Kent,   as   discussed   later   in   this   dissertation.     Hallrup   (2010)   argues   that   although   routines   within   institutional   care   settings   provide   structure,   they   also   restrict   behaviour   and   autonomy   because  of  the  rules  they  necessarily  entail.    This  may  be  true  where  there  are   strict  boundaries  of  power  between  residents  and  staff  as  occurs  in  many  care   homes.    However,  in  L’Arche  all  members  of  the  house  are  involved  in  setting   the   routine,   and   it   therefore   becomes   like   the   rules   and   routines   of   any  

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household, rather  than  a  strict  structure  set  by  one  group  for  others  to  conform   to.    In  L’Arche  Kent  having  this  routine  appeared  to  make  people  comfortable   and  feel  at  home;  knowing  what  to  expect  at  any  part  of  the  day  gave  them  the   opportunity  to  relax  without  worrying  about  what  might  happen  next6.  

The people  of  L’Arche  Kent  

People come  to  L’Arche  for  many  reasons,  something  that  will  be  discussed   later  in  the  dissertation.    Some  come  only  for  a  few  months;  some  have  been   there  since  it  started  in  1974.    Some  came  following  recommendations  from   family  or  friends,  others  because  they  were  seeking  a  different  way  of  living  –   one  where  people  are  valued  for  who  they  are  rather  than  what  they  can  do.     Some  core  members  come  to  live  in  the  community  on  placement  by  Social   Services,  others  fight  to  come  to  live  somewhere  that  they  view  gives   independence  in  a  supportive  ‘family-­‐like’  environment.    There  is  no  set  pattern   to  who  comes  and  who  stays  (although  there  are  theories  –  one  assistant  told   me  there  is  a  common  perception  that  if  you  come  over  the  age  of  30  years  and   then  stay  for  more  than  five  years  you  must  be  running  away  from  something),   however,  throughout  my  time  I  found  similarities  amongst  many  of  the  long-­‐ term  members  of  the  community:  I  was  told  on  several  occasions  that  people   felt  ‘out  of  place’  in  the  wider  world  and  in  L’Arche  they  find  a  community  that   accepts  people  for  who  they  are,  accepting  differences  as  part  of  the  norm,  and   acknowledging  the  support  that  every  human  being  is  thought  to  need.    This   6  Several  of  the  people  in  L’Arche  Kent  are  autistic  or  have  anxiety-­‐related  disorders.    For  many  

people therefore  a  lack  of  routine  and  unexpected  occurrences  has  the  potential  to  cause  a   great  deal  of  stress  and  upset,  whilst  routines  provide  security  and  stability.    

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applies as  much  to  assistants  as  to  core  members  of  the  community.      

There are  many  individual  stories  that  gave  substance  to  my  research  in  L’Arche   Kent,  but  which  are  however,  too  personal  to  publish  here.    However,  this   introduction  to  the  community  should  help  provide  some  background  for  the   theoretical  discussion  that  follows  in  the  next  chapters.  

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On home  and  community  

On   the   outset   of   this   research   I   aimed   to   explore   how   people,   both   disabled   and   non-­‐disabled   came   to   choose   to   live   in   L’Arche,   and   what   this   illustrated   about  the  construction  of  competence  within  the  community.    However,  it  soon   became   clear   that   these   were   the   wrong   questions:   the   choices   within   L’Arche,   especially  for  core  members,  come  not  necessarily  from  choosing  to  live  there   in   the   first   place7   but   in   how   they   choose   to   live   their   lives   once   in   the   community.     This   choice   and   understanding   of   home   is   inextricably   bound   up   in   the   community   of   L’Arche   Kent   and   its   construction   in   the   wider   ‘imagined’   community  of  L’Arche  International.  

The idea  of  ‘home’  is  a  socially  and  culturally  constructed  category,  multifaceted   and   continually   reinvented   (Lemelle   &   Kelly   1994),   an   ‘imagined   community’   (Anderson   1991)   involving   aspiration   as   well   as   well   as   actuality;   a   source   of   identity   and   social   acceptance   (Rodman   &   Cooper   1995).     L’Arche   Kent   promotes   itself   as   ‘a   body   of   people   –   people   with   and   without   a   learning   disability   –  who   choose   to   belong   and   create   a  home   together’   (L’Arche   Kent   7

Although  people  coming  to  L’Arche  Kent  now  are  supported  to  make  this  decision   themselves,  many  of  the  core  members  within  the  community  did  not  necessarily  choose   by  themselves  –  some  were  placed  by  Social  Services  when  local  institutions  closed,   others  had  L’Arche  chosen  for  them  by  their  families  and  guardians,  whilst  others  came   there  serendipitously.    I  was  told  this  story  about  how  one  of  the  residents  came  to   L’Arche  many  years  ago:  on  establishment,  the  founders  of  L’Arche  Kent  went  to  local   institutions  to  tell  them  about  the  community  and  see  if  there  was  anyone  who  would   benefit  from  moving  there.    One  of  the  founders,  Thérèse  Vanier,  had  previously  been  in   the  habit  of  visiting  people  in  one  particular  institution,  and  on  arriving  there  again  she   was  recognized  by  one  of  the  residents,  Charlotte.    Charlotte  was  so  excited  and  happy  to   see  Thérèse  that  it  was  decided  she  should  go  home  with  her.    And  so  Charlotte  came  to   L’Arche  Kent.    

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2011).   This   concept   of   creating   a   home   together   is   a   central   defining   characteristic  of  L’Arche,  but  home  is  an  elusive  idea  that  is  hard  to  explain  for   many   people,   and   the   extent   to   which   it   is   achieved   varies   between   individuals.     For   some   people   L’Arche   Kent   is   a   temporary   home;   for   others   it   is   viewed   as   a   home   for   life.     Home   can   be   the   house   in   which   they   live,   or   the   wider   community  of  L’Arche  as  a  whole.    Some  assistants  view  the  community  and  the   individual  houses  within  it  as  home  for  the  disabled  members  of  the  community   but  not  for  the  assistants,  whilst  others  told  me  that  whilst  it  is  their  home,  ‘it  is   home   for   [core   members]   first’   (AA:   18-­‐04-­‐2011).     And   some   people,   despite   having  lived  in  L’Arche  Kent  for  many  years,  feel  rootless  and  disconnected,  not   yet  at  home:  

When I  came  to  the  community,  after  a  few  weeks  I  knew  that  I  won’t  be   coming   back   to   my   family   home.     And   like   probably   after   a   couple   of   years   I   stopped   referring   to   my   mum’s   home   as   my   home.     So,   now   I   would   rather   refer   to   myself   that   either   I   have   a   home   here   or   I’m   homeless.     Because   I   don’t   have   a   home;   this   is   the   only   home   which   I   have.    (BB:  06-­‐07-­‐2011)  

However, despite   these   variances,   there   were   many   repeated   themes   that   arose   in   discourse   and   that   I   noted   when   watching   people   in   their   construction   of  home  within  the  community.      

A ‘family-­‐like’  environment   The  idea  of  family  life  and  building  a  family  was  one  repeated  theme:    

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Home is   a   place   where,   well   for   us   it   is   happened   that   we   found   an   apartment   and   get   married   or   buy   a   house   and   we   have   our   own   children.    And  we  see  different  parents  from  one  side  and  the  other  side.      So  it  is  building  this  family?      Yes   it   is   building   a   family….   when   I   came   here   from   Poland   I   didn't   know    anybody,  so  I  found  the  family  here....  so  firstly  because  I  was  lonely,  by   myself,   that   was   I   think   myself,   the   family   wasn’t   here,   so   they   became   my  family  because  everyone  needs  closeness,  relationships….  (JJ:  28-­‐06-­‐ 2011)  

This idea   was   put   forward   by   both   core   members   and   assistants,   and   was   given   as  the  reason  for  some  core  members  coming  to  live  in  the  community  in  the   first  place:      

Why did  you  come  to  L’Arche  Kent?  

I wanted   to   see   what   it   would   be   like,   what   a   family-­‐like   atmosphere  

would be   like   and   whether   it   would   be   best   for   my   future.     (CC:   27-­‐06-­‐

2011)

One of   the   aspects   of   living   within   a   family   is   that   for   the   majority   it   is   a   protected  environment,  where  people  feel  free  to  express  themselves  without   being  judged.    For  people  with  learning  disabilities  the  family  has  been  a  central   support   unit   throughout   history   and   until   recently   the   family   was   viewed   as   the   ‘natural’   place   for   someone   with   learning   disabilities   to   live   (Digby   1996).     In   their   research   on   reaching   adulthood,   Davies   &   Jenkins   (1993)   noted   that   the   family   environment   was   one   of   the   few   places   that   people   with   learning   disabilities   are   afforded   competence,   personhood   and   individual   identity.    

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Ablon (2002)   makes   a   similar   observation.     Having   grown   up   together,   the   family  can  see  past  the  outer  markers  of  difference  that  many  outsiders  react   to.    

The non-­‐disabled   members   of   L’Arche   Kent   are   essentially   care   workers   in   another  form:  they  are  expected  to  support  the  disabled  members  in  all  aspects   of   personal   care   and   support   needed.     However,   the   family-­‐like   atmosphere   created   extends   to   this   care:   I   was   told   by   many   people   that   the   care   is   the   same  as  you  would  provide  ‘for  a  family  member’  who  needed  help:  

You   care   for   them   because   you   know   them,   and   because   they   are,   you   know,  a  good  person  with  their  own  individual  qualities,  and  not  because   they’re  your  client,  or  because  the  government  is  paying  you  and  you’re   sanctioned  to  do  that  sort  of  work.    (AA:  18-­‐04-­‐2011)  

During my   time   at   L’Arche   Kent   there   were   many   occasions   when   I   was   reminded  of  my  own  family,  in  particular  of  the  relationships  between  me  and   my   siblings:   that   love-­‐hate-­‐irritation   that   only   someone   with   whom   you   have   lived   for   many   years   and   are   totally   comfortable   with   can   provoke   and   provide.     The  core  members  of  Cana  House  have  lived  together  for  many  years,  and  this   is  obvious  in  their  relationships  and  the  rhythm  of  the  house.      

This idea  of  home  and  family  has  been  noted  in  other  research  on  people  within   care  settings,  for  example  in  her  study  of  institutional  care  workers  in  Sweden,   Hallrup   (2003:   23)   noted   that   care   workers   felt   connected   to   the   residents   ‘as   though  they  were  all  members  of  the  same  family’.      

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There are  positive  and  negative  aspects  of  creating  a  ‘family-­‐like’  environment.     One   assistant   I   interviewed   commented   on   the   similarity   between   the   role   of   assistant  and  that  of  parent:    

I guess  it’s  where  does  responsibility  begin  and  end?    Where  does  it  start   with   the   person   with   disabilities?     You   have   to   step   in   and   it’s   sort   of   almost  like  a  parenting  thing.    (DD:  03-­‐07-­‐2011)  

This effectively  extends  the  view  of  disabled  people  as  non-­‐competent  adults,   albeit   with   the   best   possible   intentions.     However,   for   the   majority   of   people   within   L’Arche   Kent,   the   family-­‐like   environment   extends   across   the   whole   community,  not  only  towards  core  members,  providing  security  in  the  form  of  a   home   and   a   safe   environment   in   a   country   often   far   away   from   home   and   all   things  familiar.  

Another aspect  of  creating  ‘home’  that  was  both  reported  and  observable  was   the   ordinary   life   that   every   person   within   the   community   takes   part   in.     It   is   taking  part  in  these  everyday  activities,  usually  together  with  other  members  of   the   community   that   makes   people   feel   like   they   are   at   home,   and   that   their   home  consists  of  all  the  members  of  that  house:  

For me  it’s  the  little  things…I  like  evenings  after  supper.    When  we  finish   all   things,   like   we   finish   cleaning,   washing   up   and   we   can   just   sit   down   and   rest   for   a   little   bit.     I   like   the   things   like   when   you   are   watching   some   programmes  or  some  sport  even,  with  everybody,  like  Simone,  Margaret,   Chris,   Steven.     And   it’s   like   really   nice   when   Chris   is   telling   something.     After   that   Margaret   is   responding,   Simone,   Steven.     And   no   one   even   agrees!    (EE:  06-­‐07-­‐2011)  

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Me and  Graham  used  to  do  a  house  shop  …  we’d  go  around,  have  a  huge   long  list  of  stuff  to  buy  and    …  do  the  shopping  and  you’d  come  out  with   your  bags  and  load  up  the  car.    JJ  taught  me  to  buy  something  nice  to  have   for  the  car  when  you  finish.    And  Graham  works  very  hard  and  he  sort  of   gets  a  real  sweat  and  stuff  and  you  come  out  and  you  sit  by  the  car,  you   load  up  the  car;  it’s  all  done  and  we  sit  there  and  we  have  your  can  of  coke   or   a   bottle   of   coke….     And   it   was   just   a   really   nice   moment   of   silence   between  the  two  of  us  …  sort  of  a  brotherly  kind  of  moment    (FF:  29-­‐06-­‐ 2011)  

It is   these   shared   activities   of   everyday   life   that   extend   the   family-­‐like   feeling   within   the   community   and   also   allow   competence   attribution   to   individuals   within  the  community,  something  that  will  be  explored  in  the  next  chapter.  

Home comforts  

In his   study   on   Israeli   and   Japanese   immigrants   to   Canada,   Magat   (1999:   120)   argues   that   the   construction   of   ‘home’   is   ‘the   ultimate   manifestation   of   …   independence’.     However,   what   constitutes   home   is   difficult   to   elucidate   individually  let  alone  within  a  group  of  disparate  individuals  as  often  resides  in   L’Arche.    The  idea  of  home  is  ‘made  and  remade  on  an  everyday  basis  …  [in  the]   social   realm   of   security,   familiarity,   community   and   …   a   ‘sense   of   possibility’   (Jansen  &  Löfving  2007:  10).    It  is  an  ‘ideal’,  and  Hage  (1997:  103)  argues  that  in   reality   people   live   within   its   ‘approximation’.     How   then   do   people   approach   this  approximation  of  ‘home’?  

Within L’Arche   Kent   it   was   immediately   noticeable   that   people   made   themselves   feel   at   home   by   surrounding   themselves   with   identifying  

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possessions: things   that   reminded   them   of   who   they   are,   where   they   come   from,  what  they  like,  who  is  important  to  them:  

My first  year  didn’t  feel  like  home,  but  when  I  went  back  to  Morocco  and  

then I   came   back,   I   brought   some   spices   with   me.     So,   I   thought,   well  

that would  make     the   house   feel   like   home.     And   it   did.     So,   yes:   some  

cumin, some  Moroccan    pepper,  a  teapot,  a  tagine.  

So, those  kinds  of  familiar  things  that  remind  you  of…?   Yes,  familiar  things,  it  felt  like  home.    (GG:  06-­‐07-­‐2011)  

This is  no  different  for  assistants  or  core  members.    For  Chris  in  Cana  House,  the   walls   in   his   room   are   covered   in   posters   of   things   he   likes:   John   Wayne;   military   aircraft;  his  family.    When  he  showed  me  his  room  he  picked  up  and  showed  me   those   things   that   are   important   to   him:   a   model   aircraft   by   his   bed;   a   beefeater   teddy   bear;   a   torch   in   the   shape   of   an   owl.     Another   core   member   took   me   around  her  room  showing  me  the  things  of  particular  importance  to  her:      

What’s really  important  to  me  is  my  photos:  my  family  photos.    Like  when   my  sister  got  married  and  I  was  a  bridesmaid.    My  nephews.    Me  and  my   sister   and   me   when   I   was   younger   and   my   nephews.     My   DVDs,   my   stereo.     My  cards,  my  lights.    My  pictures  of  my  friends.    (CC:  27-­‐06-­‐2011)  

However, whilst   possessions   are   an   important   part   of   making   people   feel   at   home,   the   community   members   were   a   more   important   aspect   for   many   people.     Filming   with   Sarah   and   analysis   of   her   filming   showed   that   her   home   is   built  of  herself  and  the  other  people  within  in  it.    Initial  attempts  to  get  Sarah  to   show  me  her  room  proved  futile:  after  spending  some  time  together  I  realized  

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this was  because  for  Sarah  her  room  is  primarily  a  place  to  sleep  and  store  her   things;   her   preferred   aspects   of   home   are   the   companionship   to   be   found   in   other   people.     Part   of   this   is   the   fact   that   people   feel   comfortable   to   be   themselves   within   the   community   and   accepted   where   they   might   not   otherwise  have  been.    It  was  recognised  by  most  people  that  this  is  due  to  the   people  within  the  community  so  these  aspects  combine  to  provide  a  feeling  of   home.     Jackson   (1995:   47)   too   noted   this   in   his   explorations   of   home,   writing   that   ‘home   is   where   you   feel   free   to   be   yourself   without   apology   or   doubt’.     Part   of   this   is   being   able   to   spend   your   time   at   home   in   whichever   way   you   please.    In  L’Arche  people  do  exactly  this:  Chris  sometimes  spends  all  day  in  his   pyjamas8,  people  sit  in  different  rooms  because  they  want  to  watch  different  TV   programmes,   people   laze   in   the   sun   together,   go   out   to   local   shops   or   the   pub,   and  generally  spend  their  time  in  any  way  that  you  would  expect  of  people  at   home   and   comfortable.     If   you   compare   this   to   the   usual   model   of   supported   living,   where   this   level   of   relaxation   rarely   happens   communally,   you   start   noticing  how  it  is  that  L’Arche  creates  home.    

Challenges to  creating  home  

The houses  within  L’Arche  Kent  are  legally  classified  as  ‘Care  Homes’.    Used  in   this  context  the  word  home  has  very  different  connotations  than  when  talking   about   an   individual   home.     The   term   ‘Care   Home’   often   has   a   negative  

8 In  fact  Chris  spending  all  day  in  pyjamas  has  caused  issues  in  the  past:  on  more  than  one  occasion  

well-­‐meaning neighbours,  not  realising  that  he  had  chosen  to  stay  in  pyjamas  and  that  this  choice   was  respected  within  L’Arche,  rang  Social  Services  reporting  that  core  members  were  being   neglected.  

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association as  a  place  of  helplessness,  despair  and  incompetence.    The  idea  of   being   ‘put   in   a   home’   is   filled   with   dread   for   many   people,   and   with   recent   negative   publicity   about   care   homes   for   people   with   learning   disabilities   (for   example  the  case  of  Winterbourne  View9)  this  label  holds  all  sorts  of  negative   connotations.    This,  along  with  the  statutory  requirements  attached  to  being  a   care  home  mean  that  for  some  assistants  it  is  hard  to  feel  ‘at  home’:  

It’s  a  bit  challenging  to  create  home  in  a  context  where  it  is  a  CARE  home   …  to  be  a  care  home  is  a,  it  sort  of  has  a  deeper  meaning  than  might  be   normally  associated,  but  no:  I  do  find  it  very  challenging  to  create  HOME   in  a  place  where,  you  know,  we  have  to  record  everything…  it’s  difficult   like,  to  say  ok  we’re  a  family,  and  it’s  home,  when  it’s  so  clear  that  it’s  not   so  strictly  that.    (AA:  18-­‐04-­‐2011)  

However, L’Arche   attempts   to   overcome   this   by   involving   core   members   as   much   as   possible   in   their   own   care,   and   making   the   recording   and   reporting   that  is  part  and  parcel  of  running  a  care  home  just  another  part  of  everyday  life,   alongside  cooking  and  cleaning.  

People in  L’Arche  Kent  come  from  all  over  the  world,  and  although  many  stay   for   some   years,   a   larger   number   of   assistants   come   for   only   a   year   or   two.     This   provides  its  own  challenges  when  trying  to  promote  a  comfortable  home  and   family-­‐like  environment;  not  only  is  it  unsettling  to  have  members  of  the  house  

9 Earlier  this  year  a  reporter  for  BBC  Panorama  spent  five  weeks  filming  undercover  at  

Winterbourne View,  a  privately  run  residential  care  home  for  people  with  learning  disabilities.     As  a  result  of  the  abuse  caught  on  film  (aired  as  Panorama:  Undercover  Care:  The  Abuse  Exposed   (Chapman  2011),  a  Government  enquiry  was  launched,  and  four  members  of  staff  from  the   home  were  arrested.    

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changing frequently,   but   it   also   produces   its   own   challenges   in   meeting   the   expectations  of  all  members  of  the  household:  

It makes  us  a  really  strange  home  actually  if  you  look  at  us  in  the  close  up.     Because  we  were  like  ten  or  12  people  from…  at  some  point  we  were  like   five   continents.     And   trying   to   bring   all   these   cultures   and   expectations   which   you   have,   how   home   should   look   like.     It’s   just   the   numbers   and   juggling   it   between   ourselves   and   trying   to   compromise   and   find   the   one   way,  because  we  had  just  one  table  as  well.    (BB:  06-­‐07-­‐2011)  

Rather than   trying   to   meet   the   many   different   expectations,   L’Arche   instead   attempts   to   mould   the   expectations   of   new   community   members   into   ones   that   meet   both   the   community   ethos,   and   also   the   particular   style   of   each   house.     Of   course   this   does   not   always   work   and   although   there   is   a   certain   level   of   flexibility   within   the   community   to   move   between   different   houses   and   workshops,   the   expectations   of   some   people   are   incompatible   with   the   community.    These  people  usually  stay  for  only  a  short  time;  despite  asking  for  a   one-­‐year  commitment  from  assistants,  some  people  find  this  impossible10.      

Home and  community  

The idea  of  home  and  creating  a  home  within  L’Arche  Kent  is  intimately  woven   within  the  concept  of  the  community  of  L’Arche:  not  only  in  Kent  but  also  as  a   global   organization.     For   many   assistants   in   L’Arche   Kent   the   choice   of   home   came   not   from   a   particular   house   or   location,   but   from   a   desire   to   be   part   of   this  particular  community.       10  During  my  time  at  L’Arche  at  least  three  people  cut  short  their  stay:  one  to  three  months,  

one to  four  and  one  to  six  months.  

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Although small  (102  people),  L’Arche  Kent  is  spread  across  the  county  of  Kent,   and   it   is   widely   regarded   to   consist   not   only   of   those   people   living   and   working   in   the   community,   but   also   the   large   number   of   people   who   dip   in   and   out   at   different   times.     In   addition   L’Arche   Kent   is   part   of   the   wider   community   of   L’Arche   UK   and   a   member   of   the   federation   of   L’Arche   International,   a   global   community   of   over   5,000   people   (L’Arche   International   2011).     This   global   connection  is  central,  not  only  to  the  construction  of  the  community  itself,  but   also   to   the   sense   of   identity   and   belonging   felt   by   its   individual   members:   it   conforms   to   Anderson’s   (1991)   definitions   of   an   ‘imagined   community’   where   shared   interest   and   identity   form   the   community   rather   than   any   territorial   aspect.     In   L’Arche,   the   shared   ethos   is   that   of   ‘building   communities   with   people  with  learning  disabilities’  (L’Arche  UK  2011)  where  personal  relationships   within   the   community   are   central.     One   of   the   founding   principles   of   L’Arche   was   to   provide   a   ‘place   of   belonging   where   people   are   earthed   and   find   their   identity’  (Vanier  1979:  13).    Although  this  was  originally  conceived  specifically  for   community  members  with  learning  disabilities,  who,  it  was  felt,  were  prevented   from   establishing   individual   identities   due   to   the   de-­‐humanising   effect   of   isolation  and  institutionalization  (Vanier  1999),  this  concept  holds  true  for  many   members  of  the  community  today.    A  repeated  theme  that  arose  in  discourses   on   the   community   was   one   of   belonging:   to   the   group   and   to   each   other.     Indeed,   whilst   attending   a   gathering   of   L’Arche   UK,   a   repeated   mantra   was   ‘I   belong   to   you,   and   you   to   me’.     This   was   also   expressed   in   many   of   the   interviews  I  conducted:  

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I came   to   L’Arche   because   I   wanted   to   live   in   community….     It’s   about   belonging  -­‐  the  idea  of  belonging  to  a  group  of  people.    (HH:  05-­‐07-­‐2011)    

It’s not   even   a   matter   of   space,   because   I’ve   moved   like   ten   times   in   the   community.     I   think   it’s   more   about   belonging   and   feeling   that   here   are   people  who  are  part  of  your  home.    I  can  put  my  boxes  anywhere.    (BB:  06-­‐ 07-­‐2011)  

A great   deal   of   time   and   energy   goes   into   the   maintenance   of   a   community   identity  and  connection  in  L’Arche.    There  are  monthly  community  gatherings  at   which   readings   are   given   on   the   importance   of   community   and   working   together,   weekly   newsletters,   activities   organized   in   the   different   houses   and   whenever   something   special   is   happening   invitations   are   sent   out   across   the   whole  community.    Gatherings  of  the  communities  within  L’Arche  UK  are  held   every   few   years,   and   there   are   bi-­‐annual   meetings   of   L’Arche   International.     Within  each  house  and  at  the  workshops  there  is  a  photo  book  showing  all  the   members  of  the  community,  and  these  books  are  easily  available  and  regularly   flicked   through   by   people   in   idle   moments.     There   also   exists   an   international   ‘L’Arche   Prayer’   (see   Appendix   one).     Written   in   1974,   this   prayer   has   been   adapted   for   each   of   the   communities   of   L’Arche,   and   is   recited   at   most   communal   gatherings.     Anderson   (1991)   argues   that   the   recitation   of   poetry,   songs  and  other  anthems,  including  prayers,  provide  an  aspect  of  ‘unisonance’   to  the  community,  providing  ‘occasions  for  unisonality,  for  the  echoed  physical   realization  of  the  imagined  community’  (ibid.:  145).    The  ‘L’Arche  Prayer’  serves   this   purpose   within   L’Arche:   reminding   people   that   they   are   part   of   an   international  ecumenical  community  of  welcome.  

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The notion   of   community   is   undoubtedly   constructed   and   reinforced   in   this   case,  but  it  can  also  argued  to  be  constructing  (Magat  1999:  125).    Many  of  the   people  I  spoke  to  within  L’Arche  Kent  identify  very  strongly  with  the  concept  of   L’Arche  (where  people  with  learning  disabilities  live  on  equal  status  with  people   without  disabilities  in  a  family-­‐like  environment)  without  necessarily  identifying   it   as   their   home.     When   a   person   first   comes   to   live   in   the   community   they   undergo   a   three   month   long   induction   programme,   the   main   aim   of   which   is   to   mould   the   person’s   behaviour   and   ideologies   into   one   that   matches   those   of   L’Arche.    This,  along  with  the  actions  mentioned  above,  serves  to  reinforce  the   importance  of  the  community  and  the  necessity  to  maintain  it  to  those  within  it.     As   a   result   many   of   the   people   I   spoke   to   within   L’Arche   Kent   perceive   an   importance   in   the   maintenance   and   development   of   the   community,   and   in   the   rapid  assimilation  of  outsiders  into  this:      

We don’t   have   many   big   things   happen.     Like   normally   in   life   big   things   are   happening   around   you.     Most   of   the   time   we   have   little   things.     So,   this  that  we  make  a  point  to  celebrate  the  little  things  helps  us  to  build   communities.    Because  we  don’t  have  this  natural  time  which  you  would   have   in   normal   life   ….     People   come   and   before   you   get   to   know   them   well  they  are  gone.    So,  all  these  things  which  we  do  somehow  helps  to   make  community  quicker.    (BB:  06-­‐07-­‐2011)  

However, despite  these  very  deliberate  and  consistent  efforts,  some  assistants   within   L’Arche   Kent   feel   disconnected,   and   although   they   connect   to   the   wider   L’Arche   ethos,   the   actualities   of   creating   a   community   across   a   whole   county   is   quite   different.     This   was   especially   true   for   assistants   who   had   come   from   other  smaller  L’Arche  communities:   41


Everything is   so   separated   so   it’s   difficult   to   all   get   together.     I   think   that’s  just  a  natural  thing  that  happens  when  things  aren’t  close.    Where  I   was  -­‐  the  community  I  was  in  [before  coming  to  L’Arche  Kent],  there  was   just   one   house,   so,   you   know   we   could   have   an   entire   community   meeting  in  our  living  room,  and  it  would  be  like  13  people,  and  you  know,   it’s  just  very  different  to…  Yea,  I  think  it’s  just  easier  to  make  something   feel  like  community  when  there’s  so  few  people  and  you  see  each  other   on  a  daily  basis.    (AA:  18-­‐04-­‐2011)  

However, there   is   a   definite   connection   within   the   international   L’Arche   community.    People  from  other  communities  are  viewed  to  be  ‘like  ourselves’,   as   people   to   be   connected   to   and   with   whom   time   can   be   spent.     There   is   an   understanding   within   the   L’Arche   Federation   that   people   belong   to   a   large,   international  ‘family’,  and  as  such,  people  from  one  community  are  welcomed   in   another:   something   many   people   take   advantage   of   on   their   holidays   by   staying  in  other  communities:  

There is  something  that  if  each  one  of  us  would  like  to  go  and  sleep  in  the   other  community,  we  would  turn  up  there.    They  would  do  their  best  to   find  a  place  for  us.    So,  there  is  this  sort  of  security  that  they  –  there  are   people,   we   somehow   belong   to   the   same   community.     It’s   like   having   relatives  all  over  the  world.    (BB:  06-­‐07-­‐2011)  

One thing   that’s   special   for   me   about   L’Arche   is   that   it’s   kind   of   a   worldwide   family   really.     I   helped   on   a   retreat   for   L’Arche   assistants   in   Europe  last  week.    And  I  met  people  who  knew  people  that  I’d  been  with   here   over   20   years   ago.…     I   met   a   Polish   person   who   knew   a   Polish   person   who   I’d   known   23   years   ago   and   it   was   really   special   …   it’s   amazing:  it’s  an  incredible  family  really.    (II:  29-­‐06-­‐2011)  

This idea   of   a   world-­‐wide   family   is   part   of   the   maintenance   of   the   L’Arche  

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identity across   the   globe,   and   thereby   the   wider   international   community.     Maintaining   this   connection   serves   two   purposes:   by   reminding   people   that   they   are   part   of   a   larger   movement   it   convinces   people   of   the   worth   of   their   endeavour,   and   therefore   encourages   them   to   stay   and   contribute   to   the   community,   and   it   extends   the   supportive   and   protective   environment   of   L’Arche   for   vulnerable   people   through   enlarging   the   ‘family’   within   which   people  are  better  able  to  cope  with  their  vulnerabilities  (Ablon  2002).  

The benefits  of  community  

It seems   that   ultimately   people   come   to   L’Arche   Kent   because   they   are   attracted  by  the  idea  of  community.    A  number  of  people  I  spoke  to  referred  not   to   living   in   ‘the   community’   but   to   living   ‘in   community’.     Omitting   the   determiner   ‘the’   results   in   a   stronger   emphasis   being   placed   on   the   word   community,   highlighting   that   the   important   aspect   is   not   necessarily   living   in   L’Arche   Kent,   but   the   fact   of   living   in   community   at   all.     This   parallels   the   writings   of   Jean   Vanier,   founder   of   L’Arche,   who   often   writes   of   living   in   ‘communion’   rather   than   ‘community’   (Vanier   1979;   1992;   1999).     Communion   denotes  a  profound  relationship  between  two  entities:  in  this  case  a  person  with   learning  disabilities  and  a  person  without.    

The positive   aspects   of   community   living   were   repeatedly   illustrated   for   me.     In   particular,   community   is   viewed   as   somewhere   to   find   protection,   comfort,   friendship   and   recognition   from   other   people   regardless   of   whether   you   are   disabled   or   not.     Assistants   discussed   the   advantages   of   community   living   in  

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reference to  themselves,  but  in  particular  as  a  safe  and  protected  environment   for  core  members  to  live  in:  

I’m getting   more   from   community   than   I’m   giving,   and   the   idea   of   supported   living   or   living   by   yourself:   totally   not   resonates   with   me.     Because   I   could   live   by   myself,   but   I   don’t   want   to   live   by   myself.     It’s   lonely   to   live   by   yourself.   It’s   lonely   even   when   you   have   friends….     So   thinking   about   core   members   who   have   usually   less   social   contact   than   other   people   because   they   don’t   go   out   as   often,   because   of   their   limitations  -­‐   they  don’t  have  so  many  opportunities  to  meet  new  people:   there  is  such  huge  risk  of  being  isolated  and  lonely.    (BB:  06-­‐07-­‐2011)  

I think   when   you   are   not   well   and   something   bad   happens   being   in   the   community  it  makes  you  better  much  faster  than  when  you  are  on  your   own.    That  is  also  on  my  side.    But  for  core  members  it  is  better  because   society  is  not  very  accepting  of  people  with  disabilities  and  even  though   they  are  not  really...  I  know  we  are  sort  of  like  sheltered  from  the  world   but   I   think   in   a   way   they   are   able   to   experience   this   positive   relationships   in  the  smaller  world…  the  positive  sides  are  that  yes  they  are  accepted.   (JJ:  28-­‐06-­‐2011)  

Amongst the   core   members   whom   I   interviewed   the   community   was   described   as  being  a  safe  environment  in  which  to  live,  and  most  people  spoke  about  the   friends   they   had   within   L’Arche   who   helped   provide   this   atmosphere.     This   aspect   of   recognition,   acceptance,   and   being   one   large   family   was   notable   in   my  observations  at  L’Arche:  not  only  within  L’Arche  Kent,  but  within  the  wider   L’Arche   UK   community   as   well.     For   one   weekend   in   July   there   was   a   gathering   of   the   ten   communities   that   constitute   L’Arche   UK11.     Throughout   the   weekend  

11

L’Arche  UK  consists  of  communities  from  Brecon,  Bognor  Regis,  Edinburgh,  Inverness,  Ipswich,   Kent,  Lambeth,  Liverpool,  Manchester  and  Preston.  

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people wandered  between  different  groups:  core  members  who  wandered  to  a   group   outside   their   community   were   immediately   accepted   in   the   new   group   because  they  belong  to  part  of  the  wider  ‘family’.  

The risks  of  community  

Evidently, the   community   of   L’Arche   Kent   is   a   constructed,   intentional   community   of   people   with   similar   ideologies   and   a   shared   desire   to   live   both   ‘in   community’   and   ‘in   community   with   people   with   learning   disabilities’.     However,  it  exists  as  a  protected  bubble  within  the  wider  population  of  Kent,   something   that   now   threatens   the   community.     Very   few   people   outside   the   community   know   of   its   existence   -­‐   even   within   Social   Services   and   support   systems   for   people   with   learning   disabilities   few   people   are   aware   of   its   existence12.    This  has  led  to  a  funding  crisis  because  the  community  relies  almost   entirely  on  Social  Service  funded  living  places  for  core  members.    This  threat  is   recognized   within   the   community,   and   was   debated   throughout   my   time   there.     For   some   this   isolation   from   the   wider   community   is   negative   due   to   funding   pressures,   for   others   it   is   positive   because   it   provides   a   safe   environment   for   core   members   to   live,   and   until   recently   the   size   of   the   community   and   connection   to   the   wider   L’Arche   International   community   meant   that   people   were  not  isolated  within  one  small  house  or  group  of  people.    Some  assistants   focused   on   the   impact   on   their   own   social   networks,   and   not   withstanding  

12  Over  the  past  couple  of  years  several  core  members  have  sadly  passed  away.    The  

community has  found  it  difficult  to  fill  these  spaces  due  to  a  lack  of  knowledge  in  support   services  of  their  existence.  

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funding issues,  this  was  the  major  negative  point  expressed  to  me  by  most  of   the  people  I  interviewed:  the  danger  of  being  consumed  by  the  community:  

A social  life  can  be  completely  within  L’Arche,  easily,  yeah.    It’s  also  the   international  system,  I  mean  the  fact  you’ve  got  retreats  and  gatherings   …   they   fit   into   the   nice   community   where   there’s   lots   of   great   people   there.     There’s   not   a   lot   of   need   or   ability   to   go   outside   the   community   anyway.     And   [assistants]   will   carry   the   core   members   with   them   wherever  they  go.    (FF:  29-­‐06-­‐2011)  

However, the   funding   crisis   caused   by   this   isolation   now   threatens   the   fabric   of   L’Arche   Kent:   in   the   last   two   months   one   of   the   workshops   has   temporarily   closed   and   the   minibus   service   has   been   reduced.     As   a   result   movement   is   restricted  and  core  members  now  have  to  remain  at  home  for  five  days  a  week.     Although   limited   activities   are   offered   in   the   houses,   this   change   threatens   to   turn  L’Arche  into  a  more  traditional  residential  home,  where  people  spend  the   day   confined   with   little   stimulation.     This   potentially   undermines   not   only   the   vibrancy   of   the   community,   but   also   the   equality   and   personhood   afforded   to   people   with   learning   disabilities:   there   is   a   risk   of   people   becoming   inert   and   disinterested   through   boredom   and   inactivity   and   therefore   seemingly   less   able.    It  also  threatens  relations  within  the  house13  and  therefore  the  very  ethos   of   L’Arche:   that   it   is   within   the   personal   relationships   built   in   community   that   happiness,  worth  and  humanity  are  bestowed  and  maintained.    

13

Whilst people  within  each  house  mostly  get  along  well,  being  contained  within  one  building   with   the   same   people   for   over   70%   of   time   is   bound   to   cause   stresses   and   feuds.     This   is   especially  likely  where  relationships  are  already  strained  and  being  managed  by  others  around   them,  as  sometimes  occurs  in  any  household  or  community.  

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It appears   that   despite   its   best   intentions   of   providing   a   community   where   people   with   learning   disabilities   are   included   and   supported   as   valid   human   beings,  L’Arche  Kent  has  in  fact  separated  itself  from  the  wider  community  of   Kent,  and  thus  unconsciously  continued  the  practice  of  excluding  or  secluding   people  with  learning  disabilities.    Many  of  the  people  I  spoke  to  told  me  of  the   difficulty  in  building  community  relations:    

We are  quite  isolated  actually  as  a  community  because  people  don’t  want   to  somehow…  We  have  few  friends  who  are  somehow  coming  to  see  us,   usually  ex-­‐assistants.    But  it’s  very  difficult  to  build  relationships  with  the   neighbours  or  with  people  who  don’t  have  some  immediate  reason  to  be   in  touch  with  us.    (BB:  06-­‐07-­‐2011)    

As argued   above,   this   segregation   not   only   has   potentially   negative   impacts   for   core  members,  but  also  for  the  community  as  a  whole.    At  such  a  time  of  crisis   the   imagined   community   of   L’Arche   becomes   integral   in   the   preservation   of   L’Arche  Kent:  a  community  under  threat  requires  a  strong  belief  in  its  existence   in  order  to  keep  people  within  it  and  working  for  it  (Bauman  2001).    

The reasons   that   people   come   and   remain   in   the   L’Arche   community   are   manifold.    For  most  people,  both  disabled  and  non-­‐disabled  it  often  centres  on   the   security   and   companionship   offered   by   living   together   with   other   people.     For   assistants,   it   may   also   centre   on   the   concept   of   living   and   building   communities   with   people   with   learning   disabilities.     It   is   this   shared   aim   that   unites   people   from   around   the   world,   of   different   religions,   ages,   sexes   and   interests,   and   it   is   ultimately   this   that   consolidates   the   central   identity   within  

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L’Arche Kent.     However,   there   is   something   more   than   just   this:   people   also   recognise  in  this  acceptance  of  people  with  learning  disabilities  an  acceptance   of   difference,   and   L’Arche   thereby   appeals   to   some   non-­‐disabled   people   who   feel  like  they  do  not  quite  fit  into  the  wider  society,  as  a  place  where  they  too   can  find  acceptance  and  recognition  for  their  own  worth:  

There’s a  spirit  of  welcome  in  L’Arche,  which  applies  not  just  with  people   with  learning  disabilities  but  to  the  assistants  as  well,  so  each  person  can   find  their  place  here,  can  feel  valued.    Each  person  has  something  to  give   and   something   to   receive.     We   all   learn   from   one   another.     We’re   all   different   and   yet   somehow   we   form   one   body   where   each   part   of   the   body  is  important,  and,  as  I  say,  there’s  something  to  give  and  something   to  receive  from  the  others.    (II:  29-­‐06-­‐2011)  

It is   in   this   spirit   of   acceptance   and   identity   consolidation   that   competence   is   created   and   attributed,   and   where   equality   resides   within   the   community,   as   will  be  examined  in  the  next  chapter.  

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On competence,  equality  and  normality    

In   the   UK,   full   adult   human   status   and   the   rights   attached   to   these   (such   as   voting,   control   of   bank   accounts,   owning   property)   is   attributed   according   to   competence,   measured   on   intellectual   capacity,   along   with   the   ability   to   learn   social   rules   and   norms   (Jenkins   1993).     Given   that   someone   with   learning   disabilities  is  defined  as  having  ‘a  state  of  arrested  or  incomplete  development   of   mind…   significant   impairment   of   intellectual   functioning   [and]   significant   impairment   of   adaptive/social   functioning’     (WHO   2001)   it   is   plain   to   see   that   they  will  struggle  to  fulfil  these  expectations.    

Developing from   the   theory   of   ‘normalisation’   in   the   1980s,   there   exists   an   advocacy   that   people   with   learning   disabilities   deserve   the   same   rights   as   ‘normal’   people.     This   involves   the   rights   to   make   decisions   about   their   own   lives,   and   to   be   offered   the   opportunities   other   people   within   the   community   receive   (Emerson   1992),   something   which   includes   the   choice   over   where   and   how  to  live  their  lives.    

However, the   concept   of   equality   derives   from   concepts   and   standards   of   ‘normality’,   based   on   forensic   and   popular   definitions   of   milestone   achievement,   where   normality   describes   the   ‘average’   or   ‘typical’   person   (Moser   2006).     In   this   scenario,   people   with   learning   disabilities   ‘are   neither   average  nor  normal’  (Jenkins  1993:  17).    This  idea  of  abnormality  still  pervades   much   of   the   UK   (Abberley   1994),   and   leads   to   the   conception   of   people   with  

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learning disabilities   as   intellectually   and   socially   incapable;   incompetent   and   therefore   unable   to   live   complete   lives.     As   a   result,   despite   an   ethos   of   ‘independent   living’,   many   people   with   learning   disabilities   remain   living   at   home,   or   live   in   supported   housing   with   paid   personnel   to   provide   both   care   and  friendship  (Clear  &  Horsfall  1997:  129).      

Eternal innocence  

This has   many   effects.     People   with   learning   disabilities   remain   isolated   from   much   of   mainstream   society,   and   people   within   mainstream   society   often   regard   people   with   learning   disabilities   as   ‘eternal   children’   (Hollowitz   2008:   92),   with   a   widespread   belief   that   most   are   not   able   to   make   competent   decisions,   and   their   opinions   are   not   therefore   valid   (Jenkins   1993).     This   is   something  that  was  noted  by  many  of  the  assistants  within  L’Arche:  I  was  told   that  encounters  with  people  from  outside  the  community  are  often  infuriating   because   of   this,   and   it   could   be   argued   that   this   is   one   of   the   reasons   that   L’Arche  keeps  itself  enclosed:  to  protect  its  members  (both  disabled  and  non-­‐ disabled)  from  these  negative  encounters:    

You notice  when  you  are  going  out  into  the  community  with  people,  like   for  example  going  to  a  doctor’s  appointment,  they  don’t  –  doctor’s  don’t   speak   to   the   person   with   the   disability,   they   speak   around   them,   and   in   a   way  that  even  if  they  wanted  to  understand  they  couldn’t  ….    People  are   looked   at   as,   I   mean,   they’re   certainly   welcomed   and   accepted,   but   they’re  not  still,  there’s  still  that  idea  of  …,  more  like  children  you  know.     Like,  they’re  welcome  but  we  need  to  make  sure  that  they’re  behaving.     (AA:  18-­‐04-­‐2011)  

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The description   and   treatment   of   people   with   learning   disabilities   as   innocent   and   child-­‐like   has   been   recorded   as   far   back   as   the   seventeenth   century   in   Britain.    In  his  examination  of  social  welfare  provision  for  people  with  learning   disabilities,  Andrews  (1996:  70)  notes  that  the  1701  Bishopsgate  parish  records   describe   an   adult   with   learning   disabilities   as   ‘childish’,   whilst   Rushton   (1996:   53)  shows  how  the  description  as  ‘innocent’  was  used  in  Poor  Law  applications   as  a  means  of  gaining  relief  payments  for  poverty  stricken  families14.    This  idea   of  a  prolonged  childhood  ‘innocence’  has  perpetuated  to  date,  and  it  could  be   reduced   to   a   capitalist   argument   where   to   be   a   valid   and   valued   member   of   society,   one   should   contribute   productively   in   society.     Those   not   engaging   in   productive   activities   are   viewed   either   as   ‘non-­‐persons’   and   therefore   not   worth   consideration   (Cahill   &   Eggleton   1995)   or   as   a   burden   on   the   rest   of   society   unless   there   is   a   valid   reason   for   their   lack   of   production.     In   the   case   of   people  with  learning  disabilities  the  explanation  comes  down  to  their  purported   intellectual   and   social   immaturity.     It   is   still   common   to   hear   someone’s   disability  being  described  in  comparison  to  children:  ‘he/she  has  a  mental  age  of   a  4-­‐year-­‐old’  for  example.    This  continued  discourse  within  professional  circles   reinforces  and  perpetuates  the  myth  of  the  ‘eternal  child’,  which  does  nothing   to  improve  integration.      

14 Modern  day  social  welfare  systems  in  the  UK  have  their  roots  in  English  legislation  first  

passed during  the  reign  of  Elizabeth  I.    Based  in  earlier  legislation  such  as  the  Vagabonds  and   Beggars  Act  of  1495,  the  first  ‘Poor  Law’  was  passed  in  1536  (Slack  1995).    The  initial  law  gave   the  ‘impotent  poor’  (those  too  infirm  through  age,  sickness,  or  disability  to  work)  license  to   beg,  but  this  was  followed  in  1597  by  the  Act  for  the  Relief  of  the  Poor  and  the  1601  Elizabethan   Poor  Law  which  provided  a  system  of  relief  in  the  form  of  food  or  money  for  these  ‘impotent   poor’  (ibid.).    The  relief  was  administered  locally  and  depended  on  the  assessment  by  jury  of   individual  petitions  and  although  petitions  based  on  learning  disability  were  rare,  they  did  exist   (Rushton  1996).    

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Everyday living  

Ablon (2002)  has  noted  that  one  of  the  few  places  within  which  disabled  people   avoid  stigmatization  is  the  family  unit.    With  L’Arche  shaping  itself  on  this  family   unit,   people   with   learning   disabilities   achieve   recognition   that   they   might   not   elsewhere.     It   could   be   argued   that   it   is   the   everyday   living   experiences   that   enable   people   a   deeper   understanding   of   one   another,   and   this   was   a   repeated   theory   provided   in   L’Arche:   that   it   is   living   together   and   undergoing   everyday   tasks  that  enables  recognition  of  individual  competence  and  adult  status  to  all   members   of   the   community.     Although   some   people   have   roles   as   assistants   and   some   as   core   members,   observation   showed,   and   interviews   confirmed,   that   everybody   has   a   role   within   the   community,   albeit   a   role   that   fits   their   abilities:  

Everyone kind  of  has  their  own  specific  role,  like  Margaret  will  often  set   the   table   and   do   the   drying   the   dishes,   and   she   likes   to   do   the   laundry.     Simone   will   just   sort   of   -­‐   it   depends   on   her   mood   -­‐   will   do   all   kinds   of   different   things:   she   loves   cooking   and   she   often   will   help   prepare   desserts   and   things.     Steven   has   various   specific   jobs   that   he   does,   and   it’s   important   for   him   that   he   does.     Like,   we   have   the   board:  Steven   sets   that  up  every  week.    Every  Sunday  after  dinner  he  puts  all  the  faces  on  -­‐   he  gets  that  all  sorted  and  he  also  takes  out  all  the  garbage,  and  so  he’s   got   a   lot   of   jobs.     Everybody   does,   sort   of   what   they   want   and   what   they   can,  but  the  idea  is  not  to  be  like:  ‘some  of  us  are  here  to  be  served  and   some  of  us  are  here  to  serve’.    It’s  that  we  all  try  to  live  and  as  much  as   we  can  we  do  what  we  need  to  run  a  house  and  live  together….    (AA:  18-­‐ 04-­‐2011)  

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In contrast   to   many   other   supported   living   arrangements,   people   in   L’Arche   Kent   live   and   work   within   the   same   community,   and   it   is   this   that   was   repeatedly  suggested  as  the  feature  allowing  core  members  to  be  recognised   for   who   they   are,   rather   than   merely   as   someone   with   disabilities.     This   was   something   I   found   within   myself   from   being   in   L’Arche:   I   initially   overcompensated   on   my   support   of   people,   but   soon   learned   that   even   the   most   seemingly   disabled   person   was   capable   of   some   input,   and   they   are   expected   to   take   part.     It   is   here   that   adult   status   appears:   not   only   in   the   recognition   of   a   person   as   an   individual   valid   human   being,   but   also   in   the   expectation  of  their  participation  in  the  community:    

In some   normal   institutes   maybe   they   are   again   differences   between   staff   and   core   members.     Sometime   people   not   eating   together,   makes   a   difference.    Stops  to  be  everybody  equal,  the  same.   Do  you  think  that  eating  together  is  an  important  part?   Yes,   I   think   all   things   that   we   do   together   in   terms   of   living   together.     When  you  don’t  eat  together  it  creates  this  prison-­‐like  environment.    You   have  people  who  eat  and  people  who  inspect  the  other  ones  eating.    At   home  you  eat  together.    (BB:  06-­‐07-­‐2011)  

What is  normality?  

Beginning in   the   1970s   in   Scandinavia,   Normalisation   Theory   became   increasingly   popular   in   the   UK,   and   was   particularly   influential   in   social   policy   formation  in  the  1980s.    It  argued  that  disabled  people  should  be  encouraged   and   supported   to   live   ‘normal’   lives.       Although   aimed   at   enabling   society   to  

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adjust and   support   people   of   differing   needs,   and   advocating   for   inclusion   and   integration   of   disabled   people,   some   have   argued   that   the   wider   effect   of   normalisation   is   to   advocate   for   ‘normal’   behaviour   and   therefore   to   make   adjustments  to  people  deemed  ‘abnormal’  (Campbell  2009;  Connor  et  al.  2011).     Although   it   is   common   in   everyday   discourse   to   hear   the   sentences   ‘what   is   normal?’   or   ‘who   wants   to   be   normal?’   there   exists   an   expectation   within   society:   of   appearance,   ability   and   appropriate   behaviour,   that   leaves   people   outside   this   range   labelled   ‘abnormal’   and   thereby   subconsciously   (and   sometimes   consciously)   discredited   and   distrusted   by   many   of   those   who   interact  with  them  (Goffman  1963).    In  L’Arche  however,  there  is  an  advocacy   and   internalisation   of   the   idea   that   everyone   is   different,   and   that   instead   of   trying  to  mould  people’s  behaviour  to  one  that  is  ‘acceptable’,  provided  people   participate  in  some  way  in  the  community,  differences  should  be  accepted  and   acknowledged.     For   some   people   participation   merely   extends   to   eating   meals   as   a   group;   for   others   it   entails   undertaking   housework   or   helping   organise   community   events.     But   through   all   this   there   remains   a   conscious   discourse   that  normality  does  not  exist  and  that  difference  is  acceptable:    

I find  it  so  ...  relieving  is  not  the  word…  I  think  it’s  very  freeing  in  a  way,   living  in  a  community  where  no-­‐one  is  normal.    Because  very  often  when   you’re   in   a   community   gathering   you   cannot   recognise   who   is   core   member   and   who   is   assistant.     And   this   to   me   is   more   normal   than   this   what  we  are  trying  to  achieve  in  the  mainstream  society  when  we  are  all   theoretically  ‘normal’  and  inside  there  is  madness  going  on  in  everyone.     (BB:  06-­‐07-­‐2011)  

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This discourse   on   normality   is   emphasised   through   everyday   encounters,   and   through  the  shared  ethos  and  teachings  of  L’Arche,  where  it  is  recognised  that   every  person  has  something  to  give  to  the  community  (Vanier  1979;  1999).    In   addition,   there   exists   a   notion   that   the   idea   of   normality   is   threatening,   because  it  will  lead  to  exclusions:  

The issue  of  normality  is  quite  a  dangerous  subject  really  because  if  you   look  at  history,  if  you  look  back  and  you  see  what  happened…  so  who’s   there   to   determine   what   normality   is?     I   mean   obviously   there   are   differences  in  intelligence  or  in  capacity,  but  if  one  sense  is  norm  then  the   people   who   don’t   fit   into   that   category   are   going   to   get   isolated   by   society.   What  effect  does  that  have?   It   has   the   effect   that   people   who   don’t   fit   into   this   category   won’t   be   able   to   lead   fulfilling   lives   because   they’re   being   discriminated   against….     (HH:  05-­‐07-­‐2011)  

These exclusions   are   not   necessarily   aimed   solely   at   the   core   members   of   L’Arche.     Many   of   the   assistants   within   L’Arche   came   because   they   themselves   felt   out   of   place   in   the   wider   world.     Community   and   support   exists   where   people  recognise  shared  aims  and  interests:  in  the  case  of  L’Arche  it  could  be   argued  that  this  shared  interest  is  not  only  in  living  with  people  with  learning   disabilities,  but  also  in  living  in  a  place  where  no-­‐one  is  judged:      

Some   of   the   assistants   we   have,   do   come,   they   themselves   are   vulnerable  or  do  have  problems,  do  have  relationship  problems  and  they   come  into  us  because  they  think  that  in  this  community  they  might  sort   themselves  out,  and  lots  of  them  do.    (FF:  29-­‐06-­‐2011)  

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Interdependence

In addition,   L’Arche   fosters   a   model   of   interdependence   amongst   the   community:   on   each   other   and   on   the   community   itself.     Assistants   within   L’Arche   Kent   consistently   emphasised   the   fact   that   not   only  are  core  members   reliant   on   help   from   others,   but   that   they   themselves   need   and   appreciate   support  from  others,  albeit  in  different  ways:      

CARE to   me   is   like   such   a   big   word,   you   know   there’s   like   a   lot   of   care   that   goes   on   that   say,   the   Social   Services   and   such   wouldn’t   be   aware   of,   like  Simone  for  example  –  her  and  I  are  really  close  and  she  provides  care   for  me  that  would  never  be  recognised  you  know  in  a,  in  a  professional   kind  of  a  sense  …  

Can you  elaborate  on  that?  

Like she   kind   of   does   the   same   for   me   that   I   would   do   for   John   or   whatever:   she’ll   bring   me   a   cup   of   tea   and   she’ll,   like   she’s   always   just   kind  of  thinking  about  what  I  might  need….    She  provides  it  in  a  way  that   only   Simone   would   –   she   sees   my   shoes   somewhere   and,   you   know   –   I   meant  to  leave  them  there,  but  she’ll  say  ‘Oh  those  are  [my]  shoes’  and   she’ll   pick   them   up   and   come   and   find   them,   and   bring   them   to   me   because  she  sees  that  I’m  without  my  shoes.    You  know,  she’s  just,  very   aware;  looks  after  me  more  than  anyone  in  my  life  ever  has  ever.    (AA:  18-­‐ 04-­‐2011)    

This fostering  of  mutual  dependence  has  two  main  effects:  it  prevents  people   from   viewing   disabled   people   as   needy   and   therefore   lesser   human-­‐beings   (because  everyone  needs  help),  and  it  keeps  people  reliant  on  the  community   as   being   the   place   where   these   needs,   support,   and   interdependence   are   recognised  and  met.    In  a  community  that  relies  on  good  will  of  assistants  to   56


stay15, fostering   this   shared   identity   and   need   plays   a   vital   role   in   the   maintenance   of   the   community,   especially   in   the   face   of   social   pressure   towards   independent   and   away   from   group   living.     This   also   links   to   the   way   in   which  identity  is  constructed  and  reformed  through  and  within  the  community,   both   consciously   by   the   community   and   individually   through   contact   and   interaction  with  other  people  and  by  fostering  a  shared  identity  within  which   people   can   access   and   provide   support   (Rapp   et   al.   2001).     In   addition,   it   provides  a  persuasive  means  of  community  maintenance  at  a  time  of  crisis  (as   discussed   in   the   previous   chapter),   a   time   at   which   an   absolute   belief   in   the   community  becomes  necessary  to  prevent  disintegration  (Bauman  2001).  

Can there  be  equality?  

However, a   contradiction   exists   in   some   people’s   discourses   on   equality.     Despite   a   concerted   effort   of   the   community   to   accept   and   appreciate   the   differences  between  people,  a  subconscious  inequality  remains  between  many   of   the   disabled   and   the   non-­‐disabled   members   of   the   community   which   is   notable  in  the  language  used  by  some  assistants  to  talk  about  core  members.     In   one   interview   an   assistant   commented   that   a   core   member   was   ‘like   a   normal   person’   and   then   expounded   that   ‘maybe   it’s   wrong   that   I   want   to   see   her  like  a  normal  person’.    In  another,  an  assistant  spoke  about  ‘parenting’  core   members.     However,   these   kinds   of   statements   usually   came   from   people   whom   had   only   been   in   the   community   for   a   relatively   brief   amount   of   time:   in  

15 Assistants  come  as  volunteers  to  L’Arche  Kent:  they  receive  boarding  and  food  for  free  and  a  

monthly allowance  of  £200.  

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the case   of   long-­‐term   assistants   within   the   community   (over   five   years)   the   language  was  much  more  inclusive  and  little  or  no  distinction  was  made  unless   I  asked  specific  questions:  

Either   people   treat   us   without   respect   and   without   giving   us   enough   attention  or  people  treat  us  with  pity  and  like  going  over  the  top  where   you   think   well,   I’m   actually   normal.   This   is   how   I   am.   It’s   like   you   don’t   need  to  make  so  much  fuss  about  it.    (BB:  06-­‐07-­‐2011:  emphasis  added)  

This reflects   part   of   the   teachings   of   L’Arche:   that   there   should   be   no   distinction   in   status   between   different   members   of   the   community   (Vanier   1979;   1992).     Of   course   this   is   difficult   to   achieve   in   a   care   environment   with   legislative   reporting   obligations,   but   as   far   as   possible   this   lack   of   distinction   is   encouraged  and  maintained.    Another  aspect  of  this  is  in  the  inclusion  of  core   members   in   the   everyday   management   of   their   care   and   the   statutory   requirements   related   to   this.     In   every   house   there   is   a   photo-­‐rota   that   informs   both   assistants   and   core   members   who   is   responsible   for   each   of   the   weekly   tasks.     This   includes   core   members.     A   further   example   is   in   the   daily   recording   in  books.    It  is  a  statutory  requirement  that  each  residential  care  home  keeps  a   record  of  daily  activities,  issues  arising  and  so  forth.    In  most  supported  living   arrangements   this   recording   is   carried   out   by   staff   and   kept   in   files   that   residents   never   see   and   do   not   have   access   to.     In   L’Arche   however,   this   has   been   integrated   into   part   of   the   daily   routine   of   people’s   lives,   and   into   something   that   core   members   appreciate   and   enjoy.     Each   core   member   has   their   own   book   in   which   these   things   are   recorded,   and   they   participate   in   filling  in  the  records.    Most  core  members  are  proud  of  the  book:  at  different   58


parts of   the   day   people   will   show   others   their   book   and   many   like   to   have   it   read   and   appreciated.     It   is   these   small   elements   of   inclusion   that   help   implement   competence   of   people   with   learning   disabilities   in   L’Arche:   including  people  in  their  own  care  is  a  basic  aspect  of  independence  that  has   long  been  denied  in  supported  housing.  

The extension   and   construction   of   competence   within   the   community   is   fostered   between   core   members,   assistants,   between   assistants   and   management,   and   between   core   members   and   assistants.     Whilst   layers   of   management  exist,  L’Arche  attempts  to  run  a  non-­‐hierarchical  structure.    This   is  maintained  through  the  continued  and  repeated  discourse  that  every  person   within   the   community   has   their   role,   and   whether   that   role   is   one   of   managing   the   finances   or   of   simply   being   a   member   of   one   household,   it   is   viewed   as   equally  valid.    However,  despite  these  measures  many  assistants  believe  there   is   not   true   equality,   either   between   themselves   and   management,   but   more   importantly,  between  core  members  and  assistants:    

Just the   daily   living   with   people   and   working   alongside   people,   sharing   normal  life,  ordinary  life…  gives  more  of  a  sense  of  equality.    I  don’t  think   people   are   equal   but   much   closer   to   being   equal   than   they   would   be   elsewhere.    (KK:  29-­‐06-­‐2011)  

Do any  of  us  have  total  choice?    I  know  I  don’t.…    But  I  think  what’s  more   important  is  that  people  are  given  the  opportunity  to  express  what  they   want   and   then   they’re   helped   to   get   that   within   what   means   are   available.…   I   mean   I   guess   there’s   never   total   equality   perhaps   but   it   really  tries.    (DD:  03-­‐07-­‐2011)  

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However, people  repeatedly  told  me  that  the  community  tries  its  hardest,  and  I   observed   much   behaviour   attempting   to   deconstruct   these   hierarchies,   for   example,   meals   are   eaten   together   by   large   numbers   of   the   community   however,   should   someone   need   some   distance,   be   they   assistant   or   core   member,   that   wish   is   respected   and   people   are   given   space.     In   spare   time   I   observed   behaviours   that   you   would   see   in   almost   any   home:   assistants   and   core  members  hanging  out  in  pyjamas;  sleeping  in  the  sun;  smoking  together.     And  this  is  where  the  real  movement  towards  equality  occurs  within  L’Arche:   these   shared   behaviours   are   those   of   people   who   feel   comfortable   and   companionable   together,   not   those   of   professionally   controlled   client-­‐carer   relationships.     Unlike   many   supported   living   arrangements,   L’Arche   fosters   friendships   between   people,   and   in   particular   between   core   members   and   assistants.     Whilst   there   necessarily   exist   responsibilities   for   assistants   within   the  community,  including  a  duty  of  care  towards  the  disabled  members  of  the   community,   there   also   exists   an   ethos   that   professional   boundaries   of   client-­‐ carer  must  be  crossed  and  broken  down  to  provide  an  inclusive  and  accepting   environment  for  people  with  learning  disabilities:  

In   a   lot   of   ways   we   aren’t,   you   know,   anything   special   or   different   than   a   lot   of   places   doing   the   same   things,   but   one   thing   that   sort   of   sets   us   apart   is   that   we   are   Facebook   friends   with   core   members   and   we   drink   beer  with  them.    It’s  like  these  two  things  that,  that  sort  of  pinpoints  how   the   relationships   can   be   a   bit   different,   because   in   normal   supported   living   it   should   be   more   professional,   and   you   shouldn’t,   sort   of   cross   these  lines,  but  in  L’Arche  we  kind  of  have  to.    It’s  good  to  do.    (AA:  18-­‐04-­‐ 2011)  

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This reflects  the  reality  of  relationships  in  most  cases  of  inter-­‐personal  care  and   support:   supporting   someone   in   such   an   intimate   way   produces   complex   interactions   of   personality   and   identity   of   both   the   carer   and   the   cared   for   (Fritsch   2010).     L’Arche   differs   from   other   organisations   in   recognising   this   boundary   crossing.     This   in   turn   enables   people   living   within   the   community   to   feel   more   comfortable   with   one   another   and   helps   enable   the   ‘family-­‐like’   environment   for   which   L’Arche   strives.     And   it   is   within   this   family-­‐like   environment,   where   people   share   their   everyday   lives   with   one   another,   that   individual   identity,   ability   and   competence   can   be   realised   for   people   with   learning   disabilities.     This   in   turn   is   only   possible   because   people   choose   to   live   within  this  community.      

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Conclusions

Throughout  my  time  at  L’Arche  Kent  people  repeatedly  commented  that  I  must   find  their  lives  incredibly  boring.    Quite  the  opposite.    As  Klevan  (2000)  notes,  it   was  through  the  observation  of  everyday  life  and  its  seemingly  unimportant   moments  that  I  began  to  notice  the  ways  in  which  L’Arche  allows  people  to  be   people  regardless  of  ability  and  difference.    There  are  of  course  issues  within   the  community;  not  least  it’s  self-­‐seclusion  within  the  wider  population,   something  that  could  potentially  threaten  its  very  existence.    But  what  I  saw   and  heard  throughout  my  time  there  was  filled  with  hope:  that  people  with   learning  disabilities  can  find  a  home  where  they  will  be  accepted  for  exactly   who  they  are,  and  that  this  could  spread.    The  current  UK  government  favours   ‘independent  living’  for  people  with  learning  disabilities.    From  my  own   experience  of  supported  housing  I  know  that  in  many  cases  this  consists  of  a   scheme  where  staff  members  sit  in  an  office  whilst  disabled  people  stay  in  their   rooms,  and  neither  party  is  encouraged  to  mix  with  the  other  beyond   professional  duty  or  personal  need,  something  that  has  been  noted  in  other   research  on  care  settings  (Antonsson  et  al.  2008;  Hallrup  2010).    L’Arche  Kent   runs  a  very  different  model  to  this.    Sadly  it  is  not  a  model  that  is  favoured  by   much  of  Social  Services:  the  houses  are  viewed  by  some  as  ‘institution-­‐like’  and   a  ‘family-­‐like’  environment  is  not  encouraged.    As  L’Arche’s  founder  notes:  

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To walk  with  the  [vulnerable]  is  to  go  against  the  current  of  society.    To  

work for  them  -­‐   even  to  fight  for  their  rights  and  to  raise  them  into  the  

normality of   society   -­‐   can   be   part   of   a   culture.     But   simply   to   live   with  

them, to   share   their   lives   or   to   create   community   with   them   is   not!    

(Jean Vanier  2011)  

People with   learning   disabilities   are   still   widely   viewed   in   the   UK  as   ‘less-­‐than’   people:  as  incapable;  as  people  who  need  pitying  and  looking  after,  or,  if  living   in   the   same   way   as   non-­‐disabled   people,   as   people   to   be   admired   for   their   special   efforts   (Shwartz   et   al.   2010).     Examining   how   people   living   in   L’Arche   Kent  construct  their  home  and  community,  this  research  examined  discourses   on   these   wider   concepts   of   humanness,   personhood   and   the   value   and   competence   attributed   to   people   with   learning   disabilities.     Further   participatory  research  is  needed  involving  people  with  learning  disabilities:  it  is   only   through   this   inclusion   that   we   can   enable   ‘another   other’   (Kudlick   2003)   and  stop  viewing  people  with  learning  disabilities  as  largely  incompetent.  

The community   of   L’Arche   Kent   constructs   itself   on   the   idea   of   home:   of   building   a   shared   home   for   people   of   different   abilities   and   interests   from   around  the  world:  a  home  where  everyone’s  needs  are  supported  and  everyone   within   it   is   valued.     This   is   only   possible   because   of   the   community   ethos   of   living  and  sharing  lives  together.    Spending  time  in  the  community  allowed  me   to   start   exploring   how   both   disabled   and   non-­‐disabled   people   live   their   lives   within  L’Arche  Kent.    Using  collaborative  filming  I  was  able  not  only  to  explore   these   issues   myself,   but   to   include   the   community   within   the   research,   and   in  

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particular to  enable  equal  access  to  disabled  and  non-­‐disabled  and  to  verbal  and   non-­‐verbal  members  of  the  community.      

L’Arche Kent   enables   an   environment   where   people   with   learning   disabilities   are   not   only   free   to   be   themselves,   but   where   their   differences   to   others   are   acknowledged   and   accepted.     In   acknowledging   that   people   are   different,   L’Arche   not   only   enables   personhood   and   competence   to   be   attributed   to   be   people   with   learning   disabilities,   but   it   also   offers   a   place   for   non-­‐disabled   people  who  find  it  difficult  to  fit  in  elsewhere  in  society.    It  is  one  of  the  primary   teachings   of   L’Arche   that   community   is   not   about   forcing   people   to   conform,   but  about  uniting  people  with  a  common  interest  (Vanier  1979:  43).    In  L’Arche   there   are   two   primary   shared   interests:   the   concept   of   living   in   a   community   of   welcome,   and   the   idea   of   building   communities   with   people   with   learning   disabilities.    It  is  by  constructing  and  maintaining  a  community  where  difference   is   accepted   and   appreciated   that   L’Arche   Kent   is   able   to   support   people   with   and   without   disabilities   to   become   integral   parts   of   that   community,   and   it   is   through   this   participation   that   people   are   recognized   as   competent   adults,   capable   not   only   of   making   choices   and   decisions,   but   also   of   directing   their   lives  and  the  relationships  within  it.    

It is   often   assumed   by   people   outside   care   communities   that   people   working   within   them   must   be   doing   so   because   it   is   ‘rewarding’   and   because   they   ‘want   to   help   people’.     Whilst   working   in   supported   housing   I   remember   getting   repeatedly   irritated   by   people   who’s   response   when   finding   out   my   job   was   ‘good   for   you!’     Statements   like   these   are   incredibly   revealing   about   others’   64


attitudes towards   different   groups   of   people,   and   it   was   this   subconscious   discrimination   that   irked   me   so   much.     Undoubtedly   some   assistants   within   L’Arche  come  there  to  help  people.    However,  many  more  come  because  they   are   attracted   to   living   in   community   and   some   for   entirely   different   reasons.     Within   the   community   of   L’Arche   people   recognise   something   of   themselves   within   others   and   it   is   this   recognition   of   shared   interests,   aims   and   personalities   that   keeps   people   in   the   community.     However,   despite   a   discourse   of   equality   within   L’Arche   Kent,   there   remain   distinctions   between   core  members  and  assistants.    Of  course  there  always  must:  assistants  have  a   statutory  duty  of  care  towards  core  members  that  core  members  do  not  have   towards   them.     Nevertheless,   most   assistants   within   L’Arche   Kent   try   their   hardest   to   produce   an   environment   in   which   people   with   learning   disabilities   are   not   only   safe   and   healthy,   but   are   also   valued   individual   members   of   the   community.    And  as  one  assistant  said  to  me:  

So long  as  someone’s  trying,  …  what  else  can  you  do?      

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Appendix one  

The L’Arche  Prayer  

Father, through  Jesus  our  Lord  and  our  brother,  we  ask  you  to  bless  us.   Grant  that  L'Arche  be  a  true  home,  where  everyone  may  find  life,  where  those   of  us  who  suffer  may  find  hope.   Keep  in  your  loving  care  all  those  who  come.   Spirit  of  God,  give  us  greatness  of  heart  that  we  may  welcome  all  those  you   send.   Make  us  compassionate  that  we  may  heal  and  bring  peace.   Help  us  to  see,  to  serve  and  to  love.   O  Lord,  through  the  hands  of  each  other,  bless  us;  through  the  eyes  of  each   other,  smile  on  us.   O   Lord,   grant   freedom,   fellowship   and   unity   to   all   your   people   and   welcome   everyone  into  your  kingdom.     Amen.  

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Profile for Caroline Bennett

Living together: discourses on home and competence in an inclusive community in Kent  

MA thesis exploring the concepts of home and community within L'Arche Kent: a community of people with and without learning disabilities who...

Living together: discourses on home and competence in an inclusive community in Kent  

MA thesis exploring the concepts of home and community within L'Arche Kent: a community of people with and without learning disabilities who...

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