Ethical issues 92

Although,   the   research   has   not   been   through   formal   ethics   review,   significant  efforts  were  made  in  order  to  ensure  ethical  principles  were   respected   throughout   the   empirical   data   collection   and   during   processing  of  the  data  that  has  been  gathered.    

First   of   all,   participation   in   the   empirical   data   collection   of   the   research   always   happened   on   a   voluntary   basis.   Participants   received   written  information  about  the  research  project  and  the  aim  of  the  field   trip.   This   allowed   them   to   make   an   informed   decision   whether   to   participate   or   not   in   the   research   project.   The   researcher   always   expressed   gratitude   towards   the   participants   of   the   research   for   their  

time   to   share   their   valuable   knowledge.   The   meetings   always   tried   to   conform  to  the  availability  and  schedule  of  the  interviewees.    

Anonymity  of  participants  has  been  protected  rigorously,  and  the   data  is  handled  with  high  confidentiality.  By  anonymity  we  mean  that   the  information  received  has  been  processed  and  used  separately  from   any   of   the   personal   information   that   would   allow   participants   to   be   identified.   All   the   manuscripts   have   a   special   code   that   indicates   only   the  field  trip  where  the  interview  was  conducted  and  does  not  refer  to   the   interviewee.   At   the   same   time,   there   are   some   participants   who   understand  that  it  is  not  possible  to  guarantee  anonymity  as  a  result  of   their   particular   position   in   a   participating   organisation. 213  _The   organisation  (DPO,  human  rights  institution  or  government)  where  the   respondent   works   needs   to   be   mentioned   in   the   Findings   and   Discussion   sections   in   order   to   give   context   to   the   interviews.   These   respondents   were   informed   of   this   during   the   qualitative   interviews   and  agreed  to  participate  even  so.  

Despite   the   commitment   to   carry   out   the   entire   research   in   the   spirit   of   collaborative   research,   such   methodology   requires   more   resources  than  were  available.  It  is  also  important  to  note  that  in  order   to   achieve   stronger   collaboration   and   engagement   with   local   representatives,  a  form  of  remuneration  should  be  provided  to  research   participants.  A  few  respondents  or  potential  interviewees  made  a  valid   point  on  the  necessity  of  compensation  or  honorarium.  The  project  had   nothing   to   offer   in   return   for   the   time   and   commitment   of   the   participants   except   the   promise   to   share   the   research   results   that   would   hopefully   be   useful   for   the   disability   movement   and   all   other   stakeholders.  Especially  in  times  of  economic  crisis  and  recession,  civil   society   representatives   have   to   prioritise   how   they   use   their   limited   resources,  and  this  should  be  respected  by  a  research  project.  We  know   that   no   research   should   exploit   participants   in   the   interest   of   the   researcher.  This  research  aims  to  have  a  positive  impact  on  establishing                                                                                                                  

sustainable   processes   that   involve   persons   with   disabilities   in   policy   processes.    

The  findings  of  the  research  have  been  presented  at  a  number  of   international   conferences   and   summer   schools.214  _{The   results   of   the}   questionnaires   with   members   of   the   European   Disability   Forum   were   already  presented  in  May  2014,  at  the  Annual  General  Assembly  of  EDF   during   the   European   Conference   in   Zagreb,   Croatia.215  _Preliminary   results  of  the  Zambian  field  trip  had  been  shared  in  New  Zealand216  _and   Australia217_{.   The   complete   research   results   shared   directly   with   the}   participants  of  the  research  after  publication.    

In   the   following   section,   we   will   indicate   the   main   ethical   considerations  at  different  phases  of  the  research  and  what  was  done  to   ensure   compliance   with   basic   principles   of   ethical   research,   with   special   regard   to   confidentiality,   anonymity,   informed   consent,   or   management  of  data.    

(a)  Phase  1  –  Preliminary  interviews  

In  Phase  1,  the  researcher  had  to  respect  the  very  tight  time  schedule   that   the   people   who   agreed   to   give   an   interview   had.   Interviewees   attended  a  business  meeting  in  Copenhagen  and  the  interview  meant  an                                                                                                                  

214 _{E.g. at the CDLP NUIG 5th and 6}th _{International Disability Summer School, Galway}

(Title: ‘Article 33 - Innovation from around the world’) (2013-2014); Presentation at the Nordic Network on Disability Research conference, Turku, Finland (Title: ‘Nothing about CRPD monitoring without us! – case study on the involvement of the disability movement in policy-making in Zambia’) (May 2013); Presentation at the Pacific Rim International Conference on Disability and Diversity, Hawai'i (Title: ’Nothing about CRPD monitoring without us! – case study on the involvement of the disability movement in policy-making in Zambia’) (April 2013).

215 _{Presentation at the European Disability Forum’s European Conference in Zagreb,}

Croatia (Title: ‘Good practices and challenges in implementing Article 4(3) and 33 of the UN CRPD’) (May 2014).

216  _{Public  lecture  at:  New  Zealand  Centre  for  Human  Rights  Law,  Policy  and  Practice,}  

Auckland,  title:  ’Challenges  and  key  factors  of  effective  participation  of  the  disability   movement’  (April  2013).  

217  _{Lunchtime  seminar  at:  Australian  Human  Rights  Centre,  Sydney  (Title:  'Nothing}  

about  CRPD  monitoring  without  us!  -­‐  case  study  on  Article  33  CRPD  implementation   in  Zambia’)  (March  2013).  

unexpected   additional   item   on   their   agenda.   It   was   promised   to   the   interviewees  that  their  anonymity  is  protected  throughout  the  research.   The   interviews   took   place   in   a   quiet   room   or   corner   of   the   corridor,   chosen   by   the   interviewees.   The   interviewees   were   informed   that   the   main  role  of  these  interviews  is  to  give  an  idea  to  the  researcher  about   important  issues  vis-­‐à-­‐vis  the  participation  of  the  disability  movement   in  policy  processes  and  monitoring  the  CRPD.  They  were  also  informed   about  their  role  in  verifying  the  draft  questionnaire  and  the  proposed   research   terminology.   They   were   ensured   that   the   detailed   notes   of   what  they  tell  the  researcher  will  be  treated  with  high  confidentiality.          

(b)  Phase  2  -­‐  questionnaires  

In   Phase   2,   the   questionnaires   included   a   short   summary   about   the   purpose   of   the   study   and   an   explanation   on   how   respondents   contribute   to   the   research   project   by   filling   out   the   questionnaire.   Anonymity   was   not   promised   to   the   respondents   and   their   name   and   contact  detail  was  asked  for  further  potential  contact.  All  respondents   agreed   to   provide   this   data   on   the   questionnaires.   However,   the   information   they   provided   in   the   questionnaire   is   still   treated   in   a   confidential   manner,   so   it   will   not   be   published,   but   only   used   in   the   policy   assessment   part   of   the   present   thesis.   The   data   was   managed   with  high  confidentiality  and  not  shown  to  anyone.    

(c)  Phase  3  –  country  visits  

In   Phase   3,   during   organising   the   country   visits,   a   number   of   ethical   challenges   had   occurred.   First   of   all,  the   research   aimed   to   have   a   big   sample   to   provide   better   analysis   of   the   situation   on   the   ground.   Contact   persons   were   asked   to   arrange   interviews   with   as   many   relevant  actors  as  possible,  with  special  regard  to  representatives  of  the  

disability  movement.  This  meant  that  the  contact  person  had  to  spend   longer   time   with   finding   potential   respondents,   arranging   interviews   with   them   and   organise   the   meeting   and   their   logistics   for   the   researcher.  From  the  ethical  point  of  view,  this  took  significant  time  off   for  the  contact  persons  and  the  interviewees  from  their  advocacy  work.   While   the   researcher   is   fully   aware   that   a   research   should   not   be   too   demanding   of     participants,   we   believed   that   the   central   research   questions  –  that  are  crucial  in  ensuring  the  effective  implementation  of   the  CRPD  –  could  only  be  answered  by  reaching  out  a  great  number  of   stakeholders.  This  research  was  implemented  on  a  basis  of  awareness   and  recognition  of  the  valuable  time  and  resources  that  contact  persons   and  interviewees  invested  in  participating  in  the  research.  

  In   the   beginning   of   the   interviews,   all   respondents   were   informed  about  the  basic  ethical  principles  of  the  research,  namely  that   anonymity  is  guaranteed  them  throughout  the  research  project  and  that   the   voice   recordings,   interview   transcripts   and   detailed   notes   will   be   confidentially  treated.    

IV.  Legal  and  policy  context  

6. Legal  context:  Set-­‐up  of  the  UN  CRPD  

In  2001,  Mexico  put  forward  a  proposal  to  the  UN  General  Assembly  to   start   elaborating   a   ‘comprehensive   and   integral   international   convention   to   promote   and   protect   the   rights   and   dignity   of   persons   with   disabilities’.218  _{The   exact   reasons   behind   Mexico’s   proposal   are}   still  somewhat  unclear:  presumably  a  combination  of  several  fortuitous   factors,  including  the  willingness  to  achieve  diplomatic  success.    

The  General  Assembly  called  for  the  establishment  of  an  Ad  Hoc   Committee   (AHC)   open   to   the   participation   of   all   Member   States   and   observers   of   the   UN.   The   Resolution   also   invited   other   stakeholders,   such   as   intergovernmental   and   non-­‐governmental   organisations,   relevant   human   rights   treaty   bodies,   and   the   Special   Rapporteur   on   Disability,  to  make  contributions  to  the  work  of  the  Ad  Hoc  Committee.   The   AHC   met   twice   a   year   until   August   2006.   The   final   text   of   the   Convention   was   adopted   on   13   December   2006   by   the   General   Assembly,   along   with   the   Optional   Protocol   that   enables   individual   complaints  to  the  Committee  to  be  set  up  under  the  Convention.  On  30   March   2007,   the   UN   CRPD   and   its   Optional   Protocol   were   opened   for   signatures  at  the  UN  Headquarters  in  New  York,  with  the  participation   of  about  800  NGO  representatives  in  the  room.    

As  de  Beco  points  out,  considering  the  sensitivity  and  complexity   of   some   of   the   issues,   the   negotiation   and   adoption   of   the   CRPD   in   a   little   more   than   two   years   was   an   exceptional   achievement   in   UN   history.219  _{The   fact   that   the   CRPD,   right   after   entering   into   force,}   received  more  signatures  than  any  other  human  rights  treaty  shows  the   States’   clear   commitment   to   acknowledging   the   importance   of                                                                                                                  

218  _{GA  Resolution  56/168,  19  December  2001,  A/56/583/Add.2.}  

219  _{He  argues  that  it  was  driven  at  least  partially  by  the  ambition  of  the  Chair  of  the  Ad}  

Hoc  Committee,  Ambassador  Don  McKay,  to  adopt  the  treaty  by  the  60th  _anniversary  

of  the  UN.  See:  De  Beco,  G.  (ed.)  (2013)  Article  33  of  the  UN  Convention  on  the  Rights   of  Persons  with  Disabilities:  National  Structures  for  the  Implementation  and