catalyzing self advocacy- an experiment in india

8/12/2019 Catalyzing Self Advocacy- An Experiment in India

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CATALYZING SELF ADVOCACY

An Experiment in India

GABOR GOMBOS AMITA DHANDA

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Contents

re!a"e

1 Introduction: The Silenced Other Voice

1#1 arti"$%aritie& '! p&(")'&'"ia% di&a*i%it(

1#+ Se%e"ti,e %i&tenin- t' t)e $&er.&$r,i,'r ,'i"e

2 How to Design a Six Month Self Ad ocac! "ro#otion "rogra#$

+#1 Stren-t)& and /ea0ne&&e& '! t)e M$%ti dimen&i'n %an

% "re&aring the 'round for Self Ad ocac!

2#1 r',i&i'n '! eer S$pp'rt3 A"ti,itie& 4it) $&er&.&$r,i,'r&

2#1#1 5&er&.&$r,i,'r& at Bap$ Tr$&t

2#+#1 Ham&a(e)

2#1#2 6Se%! Ad,'"a"(3 T)e Art '! Ne-'tiatin-7 T)e '%iti"& '! Di-nit(8

( Ca&acit! )uilding of Self Ad ocates and Cross Disa*ilit! Ad ocac!

9#1 B$i%din- Leader&)ip am'n- e'p%e Li,in- 4it) Menta% I%%ne&&3 T)e Nati'na% 5&er

/'r0&)'p

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9#1#1 C'n"ept$a% preparati'n

9#1#+ T)e !ir&t da(

9#1#2 Da( + and 2

9#+ A&&i&tin- Se%! Ad,'"a"( in er&'n& 4it) Inte%%e"t$a% Di&a*i%itie&

9#2 Brain&t'rmin- 4it) t)e ZTRT mem*er&

9#9 Vid(a&a-ar C)ennai

+ ,nowledge )uilding and Awareness -aising

:#1 /it) t)e Bap$ C'mm$nit(

:#+ Nati'na% Menta% Hea%t) Care Gi,er&; /'r0&)'p

:#2 T)e Nati'na% Tr$&t


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11 2 2 "itfalls to Self Ad ocac!

11#+#2 Re&'$r"e& !'r Se%! Ad,'"a"(

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/)i%e &'me '! t)e *arrier& t' &'"ia% parti"ipati'n !a"ed *( per&'n& 4it) di&a*i%itie& are

"'mm'n a"r'&& di&a*i%itie&7 t)ere are 't)er *arrier& 4)i") are $ni $e t' a parti"$%ar

di&a*i%it(# C'n&e $ent%(> &e%! ad,'"a"( p%an& re $ire t)at *'t) t)e "'mm'n and t)e

$ni $e '*&ta"%e& are &$rm'$nted# An e!!'rt t' "ata%( e &e%! ad,'"a"( !'r per&'n& 4it)

p&(")'&'"ia% di&a*i%itie& in India 4a& initiated *( Bap$ Tr$&t> $ne# T' )e%p in t)at

pr'"e&&> an in,itati'n 4a& extended t' Ga*'r G'm*'& an internati'na%%( ren'4ned &e%!

ad,'"ate t' ,i&it India !'r a peri'd '! &ix m'nt) T)i& rep'rt re"'$nt& t)e p%annin->

exe"$ti'n and %earnin- !r'm t)i& pr' e"t#

T)e rep'rt )a& *een 'int%( 4ritten *( Ga*'r G'm*'& and Amita D)anda# T)i& rep'rt

4ritin- exer"i&e 4a& &tarted 4it) t)e p$rp'&e '! de%i*eratin- 'n &e%! ad,'"a"( in t)e %i-)t

'! '$r &e%! ad,'"a"( initiati,e& and t)e tra,ai%& 4e en"'$ntered in t)e "a$&e# It 4a& a%&'

pre&$med t)at &in"e t)e rep'rt 4a& 'n &e%! ad,'"a"( it &)'$%d re,'%,e ar'$nd t)e per&'na

'! Ga*'r G'm*' S'me4)ere in t)e midd%e '! t)i& exer"i&e> 4e rea%i ed t)at &in"e t)e

rep'rt 4a& *ein- 4ritten *( t4' per&'n& it needed t' pr',ide &pa"e !'r *'t) '! t)em# S'

i! Ga*'r 4a& a &e%! ad,'"ate 'n i&&$e& '! p&(")'&'"ia% Amita )ad *een ad,'"atin- !'r t)e

"a$&e '! per&'n& %i,in- 4it) p&(")'&'"ia% di&a*i%it(# I! Ga*'r )ad ,ie4& 'n re"ei,in-

&$pp'rt> Amita )ad an 'pini'n 'n pr',idin- &$pp'rt# And *'t) )ad re&p'n&e& 'n ea")

't)er;& per&pe"ti,e# A& 'int a$t)'r& '! t)i& rep'rt> '$r ,ie4& *'t) "'n,er-ed and

di,er-ed 'n &e,era% $e&ti'n&> t)i& inter &e d(nami" a%tered t)e !'rmat '! t)e rep'rt !r'm

m'n'%'-$e t' dia%'-$e# T)$&> 4)i%&t t)ere are &e,era% p'int& in t)e rep'rt 4)ere t)e

a$t)'r& &pea0 in 'ne ,'i"e> t)ere are an e $a% n$m*er '! p%a"e& 4)ere t)eir 'pini'n&

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di!!er# T)i& m$%tip%e ,'i"e !'rmat "reated &t(%i&ti" and "'mm$ni"ati'n ")a%%en-e T)e

a$t)'r& neit)er 4i&)ed t' m$!!%e t)e m$%tip%i"it( '! t)eir ,'i"e& n'r did t)e( 4ant t'

in!%i"t in"')eren"e 'n t)e reader7 "'n&e $ent%(> it 4a& de"ided t)at !ir&t per&'n p%$ra%

&)a%% *e $&ed !'r t)'&e &e-ment& '! t)e rep'rt 4)i") t)e( )a,e 4ritten t'-et)er 'r 4)ere

t)e( 4i&) t' &tre&& $p'n t)e "'n,er-en"e '! t)eir ,ie4 And !ir&t per&'n &in-$%ar 4it)

t)e name '! t)e parti"$%ar a$t)'r in *ra"0et !'r t)'&e p'rti'n& '! t)e rep'rt 4)i") 4a&

ex"%$&i,e%( 4ritten *( an( 'ne '! t)em 'r 4)en t)e( 4i&) t' pre&ent t)eir di&tin"t ,ie4

T)i& pr'"ed$re )a& *een ad'pted t' pr',ide &pa"e !'r di!!eren"e and di,er&it( and n't t'

a&&ert a$t)'ria% p'&&e&&i,ene&

A m'n'-rap) 'n &e%! ad,'"a"( i& ne"e&&ari%( &en&iti,e 'n identit( and termin'%'-(#

C'n&e $ent%(> a &)'rt exp%anati'n 'n &'me '! t)e "'mm'n term& $&ed in t)e d'"$ment

)a& *een pr',ided#

Ad ocac! 3 An( e!!'rt t' a%ter exi&tin- attit$de&> pra"ti"e&> 'r *e)a,i'$r t)r'$-)

di&"'$r&e> p'%i"( 'r %a4#

Self


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3sers=sur i ors of "s!chiatr! 3 de&"ri*e& pe'p%e 4)' 4ere 'r )a,e *een at t)e

re"ei,in- end '! &er,i"e&> 'r 4)' experien"ed ma 'r menta% di&tre& 5&er& !ind

t)e di&"ip%ine '! p&(")iatr( )e%p!$% in addre&&in- t)eir pr'*%em&> 4)i%&t &$r,i,'r&

'*tained ne-ati,e impre&&i'n& '! p&(")iatri" &er,i"e& and )en"e "'n&ider

t)em&e%,e& a& &$r,i,'r& '! t)e in)$mane treatment and )$man ri-)t& ,i'%ati'n& in

t)e &(&tem and *( t)e &(&tem# B't) $&er& and &$r,i,'r& ad,'"ate !'r m're per&'n

tai%'red and )$mane pra"ti"e

"ersons with &s!cho 6per&'n& 4it) p&(")'&'"ia% di&a*i%it( de&"ri*e& t)e &ame -r'$p in

t)e &'"ia% m'de% '! di&a*i%it(#

"ersons li ing with #ental illness 3 Menta% i%%ne&& i& t)e m'&t "'mm'n%(

$nder&t''d de&"ripti'n '! p&(")'&'"ia% di&a*i%it( in t)e n'n di&a*%ed "'mm$nit(#

F$rt)er a n$m*er '! per&'n& 4)' )a,e *een dia-n'&ed 4it) a menta% i%%ne&& a""ept

t)e medi"a% exp%anati'n> and !ind it $&e!$%> e,en a& t)e i%%ne&& exp%anati'n )a& *een

&$* e"ted t' ri-'r'$& interr'-ati'n *( *'t) p&(")iatri&t& and patient H'4e,er>

&in"e per&'n)''d and %i!e pre,ai% ',er dia-n'&i&> 4e )a,e> t' !a"i%itate


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"'mm$ni"ati'n 4it) $n"'n,erted a$dien"e&> $&ed t)e term per&'n& %i,in- 4it)

menta% i%%ne&& in "'ntradi&tin"ti'n t' menta%%( i%% per&'n#

1 Introduction: The Silenced Other Voice

Y'$ "ann't p%an !'r emp'4erment 4it)'$t $nder&tandin- 'ppre&&i'n# Iri& Mari'n

Y'$n- 1 i& '! t)e 'pini'n t)at di&pr'p'rti'nate attenti'n )a& *een de,'ted t' ine $it'$&

di&tri*$ti'n '! re&'$r"e& t' $nder&tand t)e pr'*%em '! ex"%$&i'n and di&emp'4erment>

e,en 4)en -r'$p a!!i%iati'n& p%a( an e $a%%( &i-na% r'%e# In 'rder t' dem'n&trate t)e r'%e

t)at identit( p'%iti"& p%a(& in t)e ex"%$&i'n '! "ertain -r'$p& &)e "'n&tr$"t& 4)at &)e

term& t)e !i,e !a"e& '! 'ppre&&i'n# C$%t$ra% Imperia%i&m> 'ne '! t)e !a"e& '! 'ppre&&i'n

1 Iri& Mari'n Y'$n-> Justice and the Politics of Difference > rin"et'n 5ni,er&it( re&&> rin"et'n 1

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4)i") Iri& Y'$n- in"%$de& in )er &t$d( i& '! &pe"ia% re%e,an"e t' t)i& rep'rt# T'

experien"e "$%t$ra% imperia%i&m Y'$n- &a(&> i& t' 6experien"e )'4 t)e d'minant

meanin-& '! a &'"iet( render t)e parti"$%ar per&pe"ti,e& '! 'ne;& '4n -r'$p in,i&i*%e> at

t)e &ame time a& t)e( &tere't(pe 'ne;& -r'$p and mar0 it '$t a& t)e 't)er +#

T)i& imperia%i&m i& &tren-t)ened *( t)e !a"t t)at t)e d'minant -r'$p '!ten )a& ex"%$&i,e

'r primar( a""e&& t' *'t) mean& '! interpretati'n and "'mm$ni"ati'n in a &'"iet( 2#

C'n&e $ent%(> 6t)e d'minant "$%t$ra% pr'd$"t& '! t)e &'"iet( t)at i& t)'&e m'&t 4ide%(

di&&eminated> expre&& t)e experien"e> ,a%$e&> -'a%&> and a")ie,ement& '! t)e&e -r'$p

O!ten 4it)'$t n'ti"in- t)e( d' &'> t)e d'minant -r'$p& pr' e"t t)eir '4n experien"e a&

repre&entati,e '! )$manit( a& &$") 9#

er&'n& 4it) di&a*i%itie& are am'n-&t t)e de!ined 't)er& 4)' experien"e t)i& ex"%$&i'n# In

'rder t' ',ert)r'4 t)e &$* $-ati'n '! t)e imperia%i in- -r'$p> t)e ex"%$ded "'mm$nit(

need& t' '*tain ,'i"e !'r it& '4n per&pe"ti,e and experien"e# T)e a&&erti'n '! t)i&

per&pe"ti,e )'4e,er re $ire& per&'n& 4it) di&a*i%itie& t' a&&ert t)eir di&a*%ed identit(# A

pr'"e&& 4)i") tri--er& t)e d'$*%e "'n&"i'$&ne&& re!erred t' *( D$ B'i& 4)ere*( 4)i%e

t)e ex"%$ded per&'n& &ee0 re"'-niti'n !'r t)eir )$manne&&> t)eir )'pe&> a&pirati'n& and

"apa*i%itie&7 t)e d'minant "'mm$nit( 'n%( &ee0& t' rein!'r"e t)eir di!!eren"e> de,ian"e

+ Y'$n- at pp :@ :2 Nan"( Fra&er J$&ti"e Interruptus: Critical Reflections on the Postsocialist Condition R'$t%ed-e and

Ne4 Y'r0> L'nd'n 1 ?9 Y'$n- at pp :

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and in!eri'rit(# T)i& pr'"e&& '! rein!'r"ement i& !$rt)er &tren-t)ened *( t)e

ina""e&&i*i%it( '! t)e p)(&i"a% and t)e n'rmati,e en,ir'nment#

S'"ia% ex"%$&i'n i& a determinin- %i,ed experien"e '! a%% per&'n& 4it) di&a*i%ite&>

irre&pe"ti,e '! t)e nat$re and t(pe '! t)e di&a*i%itie&> 'r t)e "$%t$re and traditi'n& '! t)e

"'$ntr(# C'n&e $ent%( t)e -'a% '! *ein- part '! t)e &'"iet( 'n an e $a% *a&i& 4it) 't)er&

i& a &)ared and $ni!(in- a&pirati'n '! pe'p%e 4it) di&a*i%itie

1 1 "articularities of "s!chosocial Disa*ilit!

T)i& pr'"e&& '! a&&ertin- t)eir '4n ,'i"e i& di!!i"$%t !'r a%% per&'n& %i,in- 4it) di&a*i%itie&

*$t i& e&pe"ia%%( di!!i"$%t !'r per&'n& %i,in- 4it) inte%%e"t$a% and p&(")'&'"ia% di&a*i%itie

T)i& i& *e"a$&e t)e d'minant per&pe"ti,e 'n per&'n& 4it) inte%%e"t$a% and p&(")'&'"ia%

di&a*i%it( pre&$me& t)em t' *e *'t) in"'mpetent and dan-er'$ T)i& pre&$mpti'n

"'n&tant%( exp'&e& per&'n& %i,in- 4it) inte%%e"t$a% and p&(")'&'"ia% di&a*i%itie& t' t)e

t)reat '! pre,enti,e detenti'n and in,'%$ntar( treatment 4)i") aim& t' a%ter t)eir

t)'$-)t&> !ee%in-& and ,'%iti'n#

T' ")a%%en-e t)i& per&pe"ti,e> it i& imp'rtant t)at per&'n& 4it) inte%%e"t$a% and

p&(")'&'"ia% di&a*i%it( &)'4 t)e !a%&e)''d '! t)e *e%ie!# H'4e,er &$") a dem'n&trati'n

i& &e,ere%( impeded *( t)e &'"ia% &ti-ma t)at a""'mpanie& inte%%e"t$a% and p&(")'&'"ia%

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di&a*i%it(> t)i& &ti-ma i& rein!'r"ed *( %e-a% di& $a%i!i"ati'n& t)at de)$mani e and

en"'$ra-e &e%e"ti,e %i&tenin- t' t)e &e%! ad,'"ate# /)en )e 'r &)e &a(& 4)at t)e

d'minant per&pe"ti,e 4ant& t' )ear> )e 'r &)e i& )eard7 't)er4i&e t)e &e%! ad,'"ate;&

,ie4& are i-n'red a& in"'mpetent# er&'n& %i,in- 4it) p&(")'&'"ia% di&a*i%itie& are t)$&

!a"ed 4it) a %'&e %'&e &it$ati'n 4)ere i! t)e( d'n;t &pea0 t)e( a%%'4 t)e &'"ia% &tere't(pe

'n per&'n& 4it) di&a*i%itie& t' "'ntin$e $n")a%%en-ed and i! t)e( d' &pea0> t)e( exp'&e

t)em&e%,e& t' %e-a% pr'"eedin- Sin"e a n$m*er '! per&'n& 4it) p&(")'&'"ia% di&a*i%itie&

retain t)eir "i,i% &tat$& *( maintainin- &i%en"e 'n t)eir di&a*%ed identit(> t)e( are nat$ra%%(

a,er&e t' t)e p$*%i" a&&erti'n '! t)eir di&a*%ed identit(> 4)en &$") a&&erti'n "'$%d

a"ti,ate t)e di& $a%i!i"ati'n& and re&$%t in t)e %'&& '! "i,i% &tat$&: # T)i& !ear '! %e-a%

pr'"eedin-& -et& man( per&'n& 4it) di&a*i%itie& t' %i,e t)eir %i,e& in denia% '! t)eir

di&a*i%it(# In&'!ar a& t)eir di&a*i%it( i& an inte-ra% part '! t)eir identit(> &$") denia% "a$&e&

per&'n& 4it) di&a*i%itie& t' %ead a !a%&e and in"'mp%ete %i!e=#

er&'n& 4it) di&a*i%itie& !a"e ex"%$&i'n !r'm parti"ipati'n in *'t) p$*%i" and pri,ate %i!e#

F'r m'&t di&a*%ed -r'$p& t)i& ex"%$&i'n )appen& indire"t%(> t)r'$-) t)e %a"0 '!

a""e&&i*i%it( and t)e denia% '! rea&'na*%e a""'mm'dati'n# F'r per&'n& 4it) p&(")'&'"ia%

di&a*i%itie& %a4 'in& in t)e p'4er!$% ar&ena% '! !'r"e& '! ex"%$&i'n# er"ei,ed in"apa"it(

: One '! t)e attri*$te& '! per&'n)''d i& t)e re"'-niti'n '! t)e )$man per&'n a& a per&'n *e!'re t)e %a4# T)i&re"'-niti'n a%%'4& t)e indi,id$a% per&'n t' 'r-ani e )i& 'r )er %i!e a""'rdin- t' )i& 'r )er pre!eren"e and $d-ement

pr',ided t)i& ")'i"e 'r *e)a,i'$r d'e& n't )arm an( 't)er# T)i& pre&$mpti'n )a& n't *een $ni,er&a%%( extended t'a%% )$man *ein- Di!!erent )$man -r'$p& )a,e *een denied re"'-niti'n *e!'re t)e %a4 and t)e "apa"it( t' 'r-ani et)eir '4n a!!air& at di!!erent p'int& '! )$man )i&t'r(# T)e&e di& $a%i!i"ati'n& )ad t' *e 4eeded '$t '! t)e %a4 a!terre"'-niti'n 4a& a""'rded t' t)e parti"$%ar ex"%$ded -r'$p# T)i& %'&& '! "i,i% &tat$& and t)e&e di& $a%i!i"ati'n& &ti%%"'ntin$e !'r per&'n& 4it) inte%%e"t$a% and p&(")'&'"ia% di&a*i%itie= It i& imp'rtant t' n'te t)at t)i& %i!e i& "'er"i,e%( rendered in"'mp%ete *'t) in pri,ate and p$*%i" area& '! )$manexi&ten"e#

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!ind& an&4er in %e-a% in"apa"itati'n# e'p%e ma( %''&e t)e 'pp'rt$nit( t' exer"i&e t)eir

%e-a% ri-)t& t' ma0e ")'i"e& in a%% pri,ate and p$*%i" area&> in"%$din- 4)ere and 4it)

4)'m t' %i,e> t)e ri-)t t' marr(> t)e ri-)t t' *e emp%'(ed> t)e ri-)t t' ,'te> t)e ri-)t t'

ma0e !ree and in!'rmed treatment de"i&i'n T)e pre $di"e t)at pe'p%e 4it) p&(")'&'"ia%

di&a*i%itie& are dan-er'$& !'r t)em&e%,e& 'r 't)er&> "an a%4a(& %ean 'n menta% )ea%t) %a4&

pr',idin- !'r "i,i% "'mmitment t' p&(")iatri" !a"i%itie& and !'r"ed treatment#

e'p%e 4it) p&(")'&'"ia% di&a*i%itie& t)$& )a,e -''d rea&'n t' *e "a$ti'$& *e!'re

p$*%i"%( &pea0in- $p a& &e%! ad,'"ate Be&ide& t)e &'"ia% &ti-ma '! di&a*i%it(> %e-a%

in"apa"itati'n> in"ar"erati'n t' %'"0ed $nit& and !'r"ed treatment 4it) mind a%terin-

treatment met)'d& are a%% rea%i&ti" t)reat& !'r per&'n& 4it) p&(")'&'"ia% di&a*i%itie

E,en i! t)e %e-a% re-ime '! di& $a%i!i"ati'n i& di&re-arded t)e !'r"e& '! "$%t$ra%

imperia%i&m 'peratin- in t)e !ie%d '! menta% )ea%t) "reate a &it$ati'n 4)ere t)e -enera%

p$*%i" i& m$") m're %i0e%( t' *e%ie,e in t)e 'pini'n '! t)e p&(")iatri&t& and di&mi&& t)e

$&er &$r,i,'r;& ,ie4 a& de%$&i'na% and $n%in0ed t' rea%it(#

1 2 Selecti e 0istening to the 3ser=Sur i or Voice

T)ere i& n' 't)er di&a*i%it( 4)i") i& &' ',er4)e%min-%( d'minated *( 'ne parti"$%ar

pr'!e&&i'n t)an t)e !ie%d '! menta% )ea%t) 4)i") i& "'ntr'%%ed *( p&(")iatr(# T)ere i& a

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%'n- )i&t'r( '! paterna%i&m in t)e !ie%d '! *i'medi"ine and in t)e "a&e '! p&(")iatr( t)i& i&

!$rt)er &tren-t)ened *( %e-a% mea&$re& '! depri,ati'n '! %i*ert( and in,'%$ntar(

treatment> a%% in t)e ;*e&t intere&t '! t)e patient;#

On t)e %e,e% '! t)e indi,id$a% $&er.&$r,i,'r> "'n"ern& 'n menta% in"'mpeten"e are $&$a%%(

rai&ed 4)en t)e per&'n d'e& n't "'mp%( 4it) t)e treatment# T)e pre&en"e '! "'mpeten"e

i& t(pi"a%%( n't $e&ti'ned 4)en t)e per&'n "'mp%ie& 4it) t)e treatment> e,en i! t)e

p$r&$ed t)erap( "a$&e& irre,er&i*%e &ide e!!e"t

T)i& &e%e"ti,e and *ia&ed $d-ement '! "'mpeten"e a%&' mani!e&t& it&e%! in dia%'-$e&

*et4een t)e menta% )ea%t) pr'!e&&i'n and t)e $&er.&$r,i,'r "'mm$nit(# T)e&e dia%'-$e&

pr'"eed *( &e%e"ti,e%( %i&tenin- t' t)e $&er.&$r,i,'r ,'i"e#

T)i& &e%e"ti,e %i&tenin- "an *e i%%$&trated 4it) a !e4 examp%e& !r'm Ga*'r;& 4'r0 in

H$n-ar(# Year& a-' t)e H$n-arian -',ernment in exe"$ti'n '! it& p%an t' rati'na%i e

)ea%t) in&$ran"e 4i&)ed t' red$"e &tate &$*&id( t' p&(")'tr'pi" dr$- T)e H$n-arian

Menta% Hea%t) Intere&t F'r$m HMIF re"ei,ed a %ar-e n$m*er '! "'mp%aint& !r'm $&er&

and $r-ed t)e F'r$m t' inter,ene# HMIF i&&$ed a &tatement rai&in- &'"ia% $&ti"e

"'n"ern&> emp)a&i&in- t)at $&er;& ")'i"e need& t' *e re&pe"ted and pr'm'ted# T)e

p%anned mea&$re& endan-ered a""e&& t' m're expen&i,e medi"ati'n *( t)e p''rer $&er&>

!$rt)er %imitin- t)eir ")'i"e& ',er t)eir treatment# T)e p&(")iatri" "'mm$nitie& a& 4e%% a&

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t)e p)arma"e$ti"a% ind$&tr( app%a$ded t)i& &tatement a& it a%&' &er,ed t)eir intere&t&>

t)'$-) t)e HMIF &tatement &pran- !r'm a di!!erent rea&'nin-#

A "'$nterexamp%e 'n )'4 t)e d'minant p'4er rea"ted ar'&e 4)en HMIF rai&ed "'n"ern&

and ran a "ampai-n a-ain&t $net)i"a% "%ini"a% dr$- tria%& 4it) p&(")iatri" patient& 4it)'$t

!ree and in!'rmed "'n&ent# T)e /a&)in-t'n '&t and BBC C)anne% F'$r "'nd$"ted

re&ear")e& and p$*%i&)ed t)eir !indin-& a& part '! t)e HMIF "ampai-n# T)e re&p'n&e *(

%eadin- p&(")iatri&t&> )'%din- %eadin- p'&iti'n& in t)e menta% )ea%t) "'mm$nit( 4a& %i0e

t)i&3 T)e media &)'$%d n't )a,e %i&tened t' t)e $&er& a& t)e( are paran'id and d' n't

0n'4 4)at t)e( are ta%0in-# T)i& re&p'n&e 4a& made de&pite t)e !a"t t)at t)e $&er ,'i"e

'*tained &pa"e in )i-) pre&ti-e and rep$ta*%e main&tream internati'na% media> an

'""$rren"e 4)i") i& m're t)e ex"epti'n t)an t)e r$%e# '&&i*%(> t)e p&(")iatri"

e&ta*%i&)ment 4a& "'n&trained t' i&&$e t)e p$*%i" &tatement *e"a$&e 't)er t)an ma0in-

&$") p$*%i" &tatement&> t)e p&(")iatri" e&ta*%i&)ment )ad n' 't)er me")ani&m t'

in,a%idate t)e ,'i"e '! $&er.&$r,i,'r /)ere t)e( p'&&e&&ed 't)er p'4er t)e( $&ed it#

T)$& t)e p&(")iatri" "'mm$nit( initiated di&"ip%inar( mea&$re& a-ain&t t)eir "'%%ea-$e> a

p&(")iatri&t 4)' )ad "'%%a*'rated 4it) HMIF#

T)e HMIF experien"e i& n't $ni $e# T)e Centre !'r Ad,'"a"( in Menta% Hea%t) $ne

CAMH )ad a%&' t' "'ntin$a%%( a&0 )'4 t' *rea0 '$t '! t)i& imp'&ed i&'%ati'n H'4 t'

pr',ide &a!e &pa"e !'r per&'n& 4it) inte%%e"t$a% and p&(")'&'"ia% di&a*i%it( t' a&&ert t)eir

identit( 4it)'$t !ear 'r &)ame H'4 t' en"'$ra-e pe'p%e 4it) di&a*i%itie& t' a&&$me

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%eader&)ip r'%e& and (et pr',ide &$!!i"ient &$pp'rt t' *ear t)e *$rden& '! %eader&)ip

H'4 t' ma0e &e%! ad,'"a"( )appen !'r per&'n& 4it) p&(")'&'"ia% di&a*i%itie& in India

T)e Centre !'r Ad,'"a"( '! Menta% Hea%t) )ereina!ter CAMH )a& $nderta0en &e,era%

initiati,e& t' t)i& end# T)'&e initiati,e& are n't t)e &$* e"t '! t)i& m'n'-rap)> 4)i") i&

de%i*eratin- 'n t)e &trate-( '! importing expertise to catalyze self advocacy # /e )a,e

a%read( '$t%ined t)e "'n&traint& t)at per&'n& 4it) p&(")'&'"ia% di&a*i%itie& !a"e t'

$nderta0e &e%! ad,'"a"(# T)e $e&ti'n i& "an &'me '! t)e&e "'n&traint& *e red$"ed i! &$")

ad,'"a"( i& $nderta0en in a "'$ntr( 't)er t)an 'ne t' 4)i") t)e &e%! ad,'"ate *e%'n-&

Can t)e &p)ere '! in!%$en"e *e expanded i! t)e &e%! ad,'"ate i& n't 'n%( pre&ented a& a

$&er.&$r,i,'r *$t 't)er !a"et& '! )i& per&'na are a%&' !'re-r'$nded

Ga*'r G'm*'& ,i&it t' India "an *e &een a& a pr'-ram 4)i") pr',ide& a pi%'tin-

'pp'rt$nit( t' &t$d( )'4 externa% experti&e "an *e $&ed t' tri--er interna% %earnin-&3 H'4

-%'*a%i ati'n pr',ide& a $ni $e 'pp'rt$nit( t' *$i%d a pe'p%e;& m',ement# T)e ,ari'$&

a"ti,itie& "arried '$t $nder t)e pr'-ram ma( 'n%( *e '! intere&t t' $&7 *$t t)e '* e"ti,e&

4it) 4)i") t)e a"ti,itie& 4ere "arried '$t a& a%&' t)e %earnin-& !r'm t)e entire pr'-ram

&)'$%d *e '! intere&t t' t)e di&a*i%it( ri-)t& m',ement> )$man ri-)t& ad,'"ate& and %ar-er

"i,i% &'"iet(# C'n&e $ent%( t)i& narrati'n primari%( re!%e"t& 'n 4)( &e%! ad,'"a"( i&

re $ired H'4 &)'$%d &$") an enterpri&e *e 'r-ani ed and 4)at &)'$%d *e t)e "'ntent '!

t)e pr'-ram In ma0in- t)i& re!%exi,e narrati'n 4e '$t%ine t)e &tren-t)& and 4ea0ne&&e&>

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'pp'rt$nitie& and t)reat& '! t)i& &e%! ad,'"a"( enterpri&e *'t) t' a&&i&t &e%! %earnin- and t'

&)are '$r experien"e 4it) t)e ad)erent& and t)e 'pp'nent& '! &e%! ad,'"a"(#

2 How to Design a Six Month Self Ad ocac! "ro#otion "rogra#$

T)e de&i-nin- '! t)e &ix m'nt) pr'-ram t)re4 $p &e,era% "riti"a% $e&ti'n /e detai%

t)'&e $e&ti'n& and '$r an&4er& in t)i& part '! t)e rep'rt#

/)' &)'$%d *e t)e "'n&tit$en"( '! t)e pr'-ramme

t)e $&er &$r,i,'r "'mm$nit(

t)e $&er &$r,i,'r and t)e di&a*i%it( "'mm$nit(

t)e 4ider "i,i% &'"iet(

a"ademi" in&tit$ti'n&

/)i%&t 4e re"'-ni ed t)at %eader&)ip !'r &e%! ad,'"a"( )a& t' emer-e !r'm t)e $&er

&$r,i,'r "'mm$nit( and )en"e t)i& "'mm$nit( )ad &pe"ia% intere&t in t)e pr'-ramme#

/e a%&' !e%t t)at "'n!inin- '$r attenti'n 'n%( t' t)i& "'mm$nit( ma( *e &e%! %imitin-> and

t' train &e%! ad,'"ate& 4it)'$t preparin- t)e arena 4)ere t)e &e%! ad,'"ate& 4i%% 'perate"'$%d "a$&e !$t$re !r$&trati'n# C'n&e $ent%(> t)e m'&t am*iti'$& p%an 4a& ")'&en# It 4a&

de"ided t)at Ga*'r &)a%% en-a-e 4it) t)e $&er &$r,i,'r "'mm$nit(> t)e 4ider di&a*i%it(

"'mm$nit(> a"ademi" in&tit$ti'n& and "i,i% &'"iet(# T)i& appr'a") 4a& a%&' di"tated *(

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t)e m$%ti !a"eted per&'na%it( '! Ga*'r G'm*'& 4)' i& a $&er &$r,i,'r> a )$man ri-)t&

de!ender and a !'rmer t)e'reti"a% p)(&i"i&t# T)e&e ,er( man( !a"et& '! )i& per&'na%it(

meant t)at )e )ad t)e "redentia%& t' )a,e di!!erent d''r& 'pen !'r )im# And e,en 4)en

t)e d''r 'pened !'r t)e !'rmer t)e'reti"a% p)(&i"i&t 'r t)e )$man ri-)t& de!ender> t)e

$&er &$r,i,'r a%&' '*tained entr(# T)e ad'pti'n '! t)i& p%an 4a& a%&' en"'$ra-ed *( t)e

"redentia%& '! t)e t4' !a"i%itat'r& '! t)e pr'-ram3 V B)ar-a,i a p)i%'&'p)er *( trainin->

t)e Exe"$ti,e Dire"t'r '! CAMH and t)e mana-intr$&tee '! Bap$ Tr$&t> $ne> 4)' )ad

in a de"ade '! -ra&& r''t 4'r0 "reated "%'&e "'nta"t& 4it) $&er.&$r,i,'r&> "are-i,er&> t)e

4ider di&a*i%it( "'mm$nit( and t)e )$man ri-)t& 'r-ani ati'n& and Amita D)anda a

r'!e&&'r '! La4 at a %eadin- %a4 &")''% 4)' )ad *een re&ear")in- and 4ritin- in t)e

!ie%d '! di&a*i%it( ri-)t& )en"e &tradd%ed t)e 4'r%d '! a"ademi"& and a"ti,i&m#

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Schedule of the Six Month Visit to India > in *ox?

J$ne +? +@3 ational Care 'i ers @or sho& Training 4it) B)ar-a,i V Da,ar> $ne

J$ne 2 3 Self ari,aar> H(dera*ad

J$%( ?3 Open H'$&e at Bap$ Tr$&t3 ;orce in Mental Health > $ne

J$%( 1+3 5&er and eer S$pp'rt Meet3 La$n") '! Ham&a(e) eer S$pp'rt Gr'$p>

$ne

J$%( +: +=3 Le"t$re 4it) Amita D)anda BChild -ights and Social Duties: A Multi

Sectoral International Consultation at NALSAR> H(dera*ad

J$%( 2 3 Le"t$re 'n t)e ,uhnian theor! of &aradig# shifts and it& app%i"ati'n t'

$ri&pr$den"e> NALSAR> H(dera*ad

J$%( 213 6Changing "aradig#s and Co#&eting Influences in "h!sics and

"s!chiatr! at t)e Department '! )i%'&'p)(> Centra% 5ni,er&it(>

H(dera*ad

A$- +3 ational Trust Southern Consultation > Ban-a%'re

A$-$&t 93 6S&ea ing Truth to "ower: The Institution of Hu#an -ights

Defenders at NALSAR 5ni,er&it( '! La4> H(dera*ad

A$-$&t :3 BChanging "aradig#s in Science and 0aw at NALSAR 5ni,er&it( '!

La4> H(dera*ad

A$-$&t 3 Le"t$re 'n Alternati es to Mental Health Care at t)e 4'men;&

'r-ani ati'n ANVESHI> H(dera*ad

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A$-$&t 193 S&ea ing truth to &ower > Le"t$re at ILS $ne> $ne

A$-$&t 1=3 ane% 'n 60aw Mental health E Marriage at t)e Indian &(")iatri"

S'"iet(> Nati'na% Mid Term CME + @

A$-$&t +23 orth G$4a)ati

Septem*er 113 6 The "ro#ise of C-"D > Le"t$re 4it) Amita D)anda at t)e Nati'na%

Tr$&t


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23/131

T)e 'r-ani ati'n %earned a %'t !r'm experien"e& '! 't)er $&er&.&$r,i,'r& and t)eir

-r'$p&> m'&t%( !r'm E$r'pe and N'rt) Ameri"a# Ga*'r 4'r0ed a& "'n&$%tant !'r

a n$m*er '! internati'na% NGO& Ham%et Tr$&t> Menta% Di&a*i%it( Ri-)t&

Internati'na%> Gene,a Initiati,e 'n &(")iatr( t' "ata%( e t)e emer-in-

$&er.&$r,i,'r m',ement in Ea&t E$r'pe# D$rin- Ga*'r;& ")airper&'n&)ip and

*'ard mem*er&)ip t)e E$r'pean Net4'r0 '! ex 5&er& and S$r,i,'r& '!

&(")iatr(> Ea&t E$r'pe> *e"ame 'ne '! t)e m'&t a"ti,e re-i'n& in t)e E$r'pean

$&er.&$r,i,'r m',ement#

Hu#an -ights Defender: > In )ox?

Ga*'r "amapai-ned a-ain&t t)e $&e '! "a-e *ed& in p&(")iatri" !a"i%itie& in

H$n-ar( and 't)er Ea&t E$r'pean "'$ntrie T)e "ampai-n it&e%! 4a& m$%ti!a"eted3

it ran-ed !r'm r'$nd ta*%e&> t)r'$-) ex)i*iti'n&> dia%'-$e& 4it) a$t)'ritie& t'

"'%%a*'ratin- 4it) re-i'na% 'r-ani&ati'n& &$") a& t)e E$r'pean C'mmittee !'r t)e

re,enti'n '! T'rt$re# A-ain Ga*'r and )i& peer& 4'r0ed in "'a%iti'n& 4it)

)$man ri-)t& NGO&> )$man ri-)t& in&tit$ti'n& and 't)er NGO& 4'r0in- !'r

re!'rm& in t)e menta% )ea%t) &e"t'r# A!ter a%m'&t 1 (ear& '! "ampai-nin- t)e

-',ernment '! H$n-ar( in,ited Ga*'r t' parti"ipate in a &ma%% dra!tin- -r'$p t'

dra!t t)e pr')i*iti'n '! t)e $&e '! "a-e *ed& 4)i") entered int' !'r"e in + 9#

Ci,i% "'mmitment a& a ,i'%ati'n '! t)e ri-)t t' %i*ert( 4a& an't)er "'n"ern !'r

Ga*'r a& a )$man ri-)t& de!ender# A!ter ex)a$&tin- a%% t)e d'me&ti" remedie&> t)e

Menta% Hea%t) Intere&t F'r$m and t)e Menta% Di&a*i%it( Ad,'"a"( Center 'int%(

+2


24/131


25/131


26/131

"apa"it(# T)e e!!i"a"( '! t)i& &trate-( 4a& dem'n&trated *( t)e re&p'n&e '! &e,era%

per&'n& in t)e main&tream 4)' 4i&)ed t' ta0e $p t)e i&&$e& &$rr'$ndin- t)e ri-)t& '!

per&'n& 4it) di&a*i%itie& a!ter %i&tenin- t' Ga*'r# F'r examp%e> S)anta Sin)a>

C)airper&'n> C)i%d Ri-)t& C'mmi&&i'n 4anted t)e C'mmi&&i'n t' ta0e $p t)e i&&$e '!

")i%dren 4it) di&a*i%itie& a!ter %i&tenin- t' a pre&entati'n 'n ")i%dren 4it) di&a*i%itie& *(

Ga*'r ? and Mr#At$% ra&ad> J'int Se"retar(> Nati'na% Tr$&t 4anted t' 'r-ani e an

'rientati'n pr'-ram !'r &eni'r "i,i% &er,ant& 'n %e-a% "apa"it( and &$pp'rt net4'r0& a!ter

%i&tenin- t' Ga*'r G'm*'& and Amita D)anda 'n t)e t'pi" @#

T)e 4ea0ne&& '! t)i& ")'i"e 4a& t)at it &pread t)e *ene!it& '! t)e pr'-ramme &' 4ide t)at

it 4a& di!!i"$%t t' $anti!( t)e -ain# A%&' *e"a$&e &' man( a"ti,itie& 4ere )appenin-

a"r'&& 't)er4i&e $n%in0ed &e"t'r&> it 4a& '!ten )ard t' $nderta0e !'%%'4 $p and p$r&$e

t)e ad,anta-e initia%%( '*tained#

A m$%ti !a"eted &e%! ad,'"ate -enerate& 'pp'rt$nit( t' &im$%tane'$&%( addre&& t)e

"'n"ern& '! $&er.&$r,i,'r& t' m$%tip%e "'n&tit$en"ie T)e e!!i"a"( '! t)i& &trate-( i& *e&t

dem'n&trated 4)en t)e $&er.&$r,i,'r d'e& n't '*tain entr( in t)e p$*%i" arena a&

$&er.&$r,i,'r> rat)er 't)er !a"et& '! t)e per&'na%it( are )i-)%i-)ted#

T)e emp%'(ment '! t)e m$%ti &e"t'ra% &trate-( a%%'4& per&'n& 4it) di&a*i%it( t' en-a-e

4it) &e,era% "'mm$nitie& 4)' )a,e &tere't(pi"a% $nder&tandin- '! di&a*i%it( i&&$e& and

? DO N' 12.NC R.+ @ @.Di&a*i%itie& +@ In per&'na% "'n,er&ati'n#

+=


27/131

%itt%e 0n'4%ed-e '! ri-)t& '! per&'n& 4it) di&a*i%itie H'4e,er &$") en-a-ement& "an *e

em'ti'na%%( tra$mati in- !'r per&'n& 4it) di&a*i%itie& and &pe"ia% &trate-ie& t' '!!&et t)i&

t)reat are re $ired#

% "re&aring the 'round for Self Ad ocac!

A& a%read( menti'ned in t)e pre,i'$& &e-ment> *( rea&'n '! t)e "apa*i%itie& '! t)e &e%!

ad,'"ate and t)e !a"i%itat'r&> it 4a& de"ided t' $nderta0e t)i& pi%'t 'n &e%! ad,'"a"( *(

en-a-in- 4it) &e,era% "'mm$nitie& ran-in- !r'm t)e $&er.&$r,i,'r t' t)e 4ider "i,i%

&'"iet(# I! t)e&e ,ari'$& "'mm$nitie& are "ir"$%ar%( ima-ined> t)en t)e $&er.&$r,i,'r

&tand& p%a"ed at t)e "entre and t)e 4ider "i,i% &'"iet( at t)e perip)er(> 4it) t)e 't)er

"'mm$nitie& &it$ated at di!!erent p'int& *et4een t)e "entre and t)e perip)er(# In t)i&

pr'-ram> t)e "'nne"ti'n !r'm t)e innerm'&t t' t)e '$term'&t "ir"%e 4a& !'r-ed *( t)e

&ame per&'n# H'4e,er in a di!!erent de&i-n> t)e "'nne"ti'n& "'$%d *e !'r-ed *( a team>

in&tead '! a &in-%e indi,id$a%#

T)e ,ari'$& a"ti,itie& Ga*'r $ndert''0 a"r'&& &pa"e& *r'$-)t t' t)e !'re t)e 0ind '! ta&0&

4)i") 4'$%d need t' *e per!'rmed a"r'&& &e"t'r& and "'n&tit$en"ie& t' prepare t)e

-r'$nd !'r &e%! ad,'"a"(#

T)e ,ari'$& a"ti,itie& $nderta0en in t)e pr'-ram !$%!i%%ed t)e !'%%'4in- !$n"ti'n&3

+?


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r',i&i'n '! peer &$pp'rt

Capa"it( *$i%din- '! &e%! ad,'"ate&

Bap$ Tr$&t

+@


29/131

)ad n't *een a $&er.&$r,i,'r "'ntr'%%ed 'r-ani&ati'n a& t)'&e indi,id$a%& )ad *een d'in-

t)eir 4'r0 4it) t)eir 't)er identitie&3 *ein- expert& in &'"ia% &"ien"e&> &'"ia% $&ti"e

a"ti,i&t& et"# It )ad *een a de%i*erate ")'i"e at t)e in"epti'n t' e&ta*%i&) a n'n medi"a%

pr'!e&&i'na% 'r-ani&ati'n 4it) a &'"ia% $&ti"e !'"$& t' "ata%( e di&"'$r&e> "'nd$"t

e,iden"e *a&ed ad,'"a"( in t)e !ie%d '! menta% )ea%t)# T)e &tren-t) '! Bap$ Tr$&t 4ere

intimate%( inter%in0ed 4it) t)i& identit(#

/it) time an in"rea&in- n$m*er '! $&er&.&$r,i,'r& 'ined in a& &ta!! 'r a& $&er& '! t)e

Tr$&t;& &er,i"e& &$") a& t)e %i*rar(> t)e n'n medi"a% "'$n&e%%in- &er,i"e SEHER> t)e

'ra% ar")i,e& 'r $&t t' en '( t)e &a!e p%a"e '! t)e 'r-ani&ati'n# ara%%e% 4it) t)at and

a%&' in "'n $n"ti'n 4it) Bap$;& internati'na% a"ti,itie&> &$") a& t)e parti"ipati'n in t)e

ne-'tiati'n& '! t)e t)en dra!ted C'n,enti'n 'n t)e Ri-)t& '! er&'n& 4it) Di&a*i%itie&> t)e

need t' *e"'me "'n&"i'$& a*'$t t)e $&er.&$r,i,'r impa"t 'n Bap$ Tr$&t )ad *een

irre&i&ti*%( rai&ed# Bap$ Tr$&t 'ined t)e /'r%d Net4'r0 '! 5&er& and S$r,i,'r& '!

&(")iatr(> %eadin- !i-$re& at Bap$ &tarted t' p$*%i"%( identi!( t)em&e%,e& a& &$r,i,'r&

and t)e i&&$e '! $&er.&$r,i,'r "'ntr'% *e"ame part '! t)e interna% 'r-ani&ati'na%

di&"'$r&e#

T)e need t' "'n&"i'$&%( 4'r0 t' pr'm'te $&er.&$r,i,'r "'ntr'% re&$%ted in a n$m*er '!

emer-in- initiati,e& at t)e time I Ga*'r 'ined Bap$ Tr$&t a& ,i&itin- A&)'0a Fe%%'4#

T)e mere idea '! )a,in- an internati'na% $&er.&$r,i,'r &e%! ad,'"ate a%&' &temmed !r'm

t)at need# A $&er !e%%'4&)ip pr'-ramme 4a& de&i-ned t' in"%$de indi,id$a%& 4it) a &e%!

+


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imp'&ed $&er.&$r,i,'r identit( int' t)e 4'r0 '! t)e 'r-ani&ati'n# T)e need t' pr',ide a

&a!e and &ti%% 'pen &pa"e t' a%%'4 peer& t' &$pp'rt ea") 't)er 4a& a%&' &een a& time%(#

M( pre&en"e at Bap$ &peeded $p &'me '! t)'&e pr'"e&&e E,en 4it)'$t an( &pe"ia%

p$rp'&i,ene&& I Ga*'r intera"ted 4it) $&er&.&$r,i,'r& in and ar'$nd Bap$# Man( time&>

e&pe"ia%%( in t)e *e-innin-> I 4a& $na4are i! t)e per&'n I 4a& in!'rma%%( ")attin->

&)arin- m( experien"e& in t)e $&er.&$r,i,'r m',ement> ta%0in- a*'$t !'r"e in t)e menta%

)ea%t) "are &e"t'r 4a& a $&er.&$r,i,'r 'r n't# T)i& intera"ti'n *et4een me> 4)' 4a& &een

a& a 4'r%d ren'4ned &e%! ad,'"ate and t)e $&er.&$r,i,'r mem*er& '! t)e Bap$

"'mm$nit(> )appened in t)e "'mp%ex 'r-ani ati'na% en,ir'nment 4)i") dre4 it& &tren-t)

!r'm t)e &'"ia% $&ti"e m',ement and t)e &'"ia% &"ien"e di&"ip%ine # T)i& "'mp%exit( '!

intera"ti'n& *et4een peer&> *et4een peer& and pr'!e&&i'na%& > &'me '! 4)'m 4ere

primari%( &een a& pr'!e&&i'na%& 4)i%e 't)er& a& &e%! ad,'"ate&> re&$%ted *'t) in !r$it!$%

"r'&& !erti%i ati'n and in ri&0 "reati'n> a p)en'men'n '! 4)i") neit)er I n'r m(

"'%%ea-$e& at Bap$ 4ere a4are#

3. .% &amsayeh 3 T)ere )ad *een inn$mera*%e di&"$&&i'n at Bap$ *e!'re m( arri,a% 'n

t)e need t' "ata%( e peer &$pp'rt eit)er in Bap$ 'r '$t&ide# I 'ined in t)at di&"'$r&e and

!e%t t)at m$") m're di&"$&&i'n "'$%d di&emp'4er pe'p%e and de%a( t)e &tart# Ham&a(e)

a& a &a!e p%a"e !'r peer &$pp'rt 4a& %a$n")ed> m'&t '! t)'&e 4)' attended t)e

ina$-$rati'n and %ater t)e &e&&i'n&> )ad a%read( )ad "'nta"t& 4it) Bap$> eit)er *ein- &ta!!

t)ere 'r $&in- &'me '! t)e Bap$ &er,i"e&> 'r at %ea&t parti"ipatin- in &'me '! Bap$;&

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4'r0&)'p I )ad t)e pri,i%e-e '! parti"ipatin- in t)e %a$n") and attendin- t)e &e&&i'n&

4)ene,er m( *$&( tra,e% &")ed$%e a%%'4ed !'r it#

Fr'm t)e ,er( *e-innin-> I 4a& "'n&"i'$& '! t)e m'ra% p'4er 4)i") emanated !r'm m(

internati'na% a"ti,i&m and %'n- )i&t'r( in t)e !ie%d# A p'4er t)at "'$%d ea&i%( p$t me in

t)e "enter '! t)e -r'$p> pre,entin- t)e )ea%t)( -r'4t) '! re%ati'n&)ip& *a&ed 'n e $a%

p'4er> needed in an( peer &$pp'rt# Expre&&in- t)i& ri&0 in t)e -r'$p> I "a&t m(&e%! in a

re%ati,e%( pa&&i,e r'%e> a per&'na 4)i")> man( a time 4a& di!!i"$%t t' maintain# T)ere

4ere di&"$&&i'n& 'n 4)at 4a& meant *( t)e &tatement t)at Ham&a(e) 4a& an

independent initiati,e and n't a Bap$ pr'-ram C'$%d Bap$ pr',ide t)e &pa"e !'r t)e

Ham&a(e) meetin-& 4it)'$t "'mpr'mi&in- t)e independen"e '! t)e initiati,e C'$%d

t)e Dire"t'r '! Bap$ *e part '! t)e -r'$p /it) time> t)e &)arpne&& '! t)e&e $e&ti'n&

&m''t)ened '$t and a& pe'p%e %earned m're !r'm 'ne an't)er> m're time 4a& &pent 'n

a"t$a%%( &$pp'rtin- 'ne an't)er#

Ham&a(e) )a& *een t)e m'&t &e%! re!%e"ti,e peer &$pp'rt -r'$p I )a,e e,er met# A re-$%ar

diar( '! t)e &pirit$a% and intera"ti'na% e,'%$ti'n '! t)e -r'$p 4a& p$*%i&)ed a& a

-ra&&r''t& initiati,e# M$") time 4a& &pent at e,er( &e&&i'n 'n re!%e"tin- 4)ere 4e are#

T)i& "'n&"i'$&ne&& 4a& 'ne '! t)e &tren-t)& '! t)e intitati,e and I am "'n,in"ed t)at a

Bap$ in!%$en"e i&> at %ea&t part%( re&p'n&i*%e !'r it#

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De&pite t)e teet)intr'$*%e& t)e %'n- term *ene!it '! peer &$pp'rt t' $&er &$r,i,'r& 4a&

dem'n&trated *( t)e !a"t t)at I Ga*'r t'-et)er 4it) "'%%ea-$e& !r'm t)e Ham&a(e) eer

S$pp'rt Gr'$p 4a& in,'%,ed in t)e "reati'n '! a materia% t)at "an *e $&ed t' train &e%!

ad,'"ate& 4'r0in- in t)e !ie%d '! menta% )ea%t)# T)e materia% 4a& prepared in a &erie& '!

"'n,er&ati'n& 'n &e%! ad,'"a"(> menta% )ea%t)> di-nit( and !$ndamenta% ri-)t T)e&e

"'n,er&ati'n& 4ere "'nd$"ted t' dra4 $p'n m( experien"e& and re $ired me t' -' *a"0

t' t)e *a&i"& and !'re-r'$nd t)e intimate %in0& *et4een &e%! ad,'"a"( and peer &$pp'rt#

T)e "reati'n '! t)e materia%& ena*%ed me and m( Ham&a(e) "'%%ea-$e& t' )i-)%i-)t t)at

t)e '* e"ti,e '! &e%! ad,'"a"( i& t' exer"i&e t)e ri-)t t' !ree%( expre&& '$r ,ie4&> t'

pr'm'te &e%! determinati'n and pr'te"t di-nit( in t)e !ie%d '! menta% )ea%t)> 4)ere *'t)

in t)e in&tit$ti'na% &(&tem '! p&(")iatr( and in t)e in!'rma% &(&tem& '! !ami%( and

"'mm$nit( a%% t)e&e ri-)t& are at permanent ri&0 '! *ein- i-n'red# Se%! ad,'"a"( i& rat)er

a pr'"e&& t)an an a"t> and ne-'tiati'n& p%a( a "entra% r'%e in t)e pr'"e&

( Ca&acit! )uilding of Self Ad ocates and Cross Disa*ilit!

Ad ocac!

( 1 )uilding 0eadershi& a#ong "eo&le 0i ing with Mental

Illness: The ational 3ser @or sho&

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( 1 1 Conce&tual &re&aration

A%t)'$-) t)e idea '! )a,in- a trainin- 4'r0&)'p !'r $&er& '! menta% )ea%t) &er,i"e&>

in"%$din- t)'&e 4)' are dia-n'&ed 4it) &e,ere menta% i%%ne&&e& > )ad *een am'n- t)e

,er( !ir&t 'ne& in t)e p%annin- &ta-e '! t)e &ix m'nt)& pr'-ramme> it& imp%ementati'n

)appened near t)e end '! m( &ta( in India# /it) > B)ar-a,i V# Da,ar> 4)' 4a& t)e "'

de&i-ner and "' trainer '! t)e 4'r0&)'p> 4e de"ided t' p'&tp'ne t)e trainin- &e,era%

time Am'n- t)e man( rea&'n& !'r p'&t&p'nin-> !'r me t)e m'&t imp'rtant 'ne 4a& t'

-ain time t' *e"'me *etter in!'rmed '! t)e Indian rea%it( > 4)i") &er,ed a& t)e e,er(da(

"'ntext !'r m( Indian peer /)i%e 4e Ga*'r and B)ar-a,i > "'$%d ea&i%( a-ree 'n t)e

'* e"ti,e& '! t)e 4'r0&)'p e,en pri'r t' m( arri,a% in India> an in"rea&in- n$m*er '!

$e&ti'n& ar'&e re-ardin- t)e H'4 *( 4)i") t' rea") t)'&e '* e"ti,e& F'r examp%e

t)e r'%e '! !ami%ie&> 4)i") i& &i-ni!i"ant%( di!!erent in India t)an in m( )'me "'$ntr(> )ad

t' *e *etter $nder&t''d *( me *e!'re 4e de"ided 4)et)er !ami%( mem*er& &)'$%d *e

e%i-i*%e t' parti"ipate# T)e Nati'na% Care Gi,er&; /'r0&)'p> 4)i") 4a& )e%d &''n a!ter

m( arri,a% in India a%&' "reated !$rt)er need& !'r "are -i,er& t' attend trainin- e,ent It

t''0 m$") time> m$") ta%0in- and &)arin- 4it) peer&> t)e %earnin-& !r'm t)e Nati'na%

Care Gi,er&; /'r0&)'p> man( intera"ti'n& 4it) Indian&> m'nt)& '! %i,inin and *ein-

part '! a )'$&in- &'"iet( in $ne> !'r me t' '*tain a *etter in&i-)t t' de"ide 'n t)e

$e&ti'n&3

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F'r 4)'m exa"t%( t' r$n t)e 4'r0&)'p T)ere 4ere &e,era% 'pti'n&3 $&er& 'n%(7

$&er& and !ami%( "are -i,er&7 $&er&> !ami%( "are -i,er& and pr'!e&&i'na%

H'4 t' ma0e t)e 4'r0&)'p> t)e ,er( !ir&t 'ne '! t)at 0ind in t)e "'$ntr(> 4)ere

parti"ipant& )a,e t' ',er"'me t)e *arrier& '! &ti-ma and &e%! &ti-ma t' identi!(

t)em&e%,e& a& &e%! ad,'"ate&

T)e '* e"ti,e& '! t)e trainin- 4ere3

T' ena*%e t)e pr'"e&& '! emp'4erment '! $&er& '! menta% )ea%t) &(&tem&

T' de,e%'p idea& 'n *$i%din- &e%! 4'rt) and *$i%din- 'n 'ne;& '4n p'tentia%

T' pr',ide &0i%%& 'n ne-'tiatin- 4it) ,ari'$& a-ent& in 'ne;& %i,e& and e&ta*%i&)in-

*'$ndarie&

T' pr',ide %earnin-& a*'$t &e%! ad,'"a"(

T)e intr'd$"ti'n t' t)i& *''0%et pr',ide& a t)e'reti"a% exp%anati'n 'n 4)( t)e&e i&&$e&

need t' *e addre&&ed !r'm t)e ,er( *e-innin-> t' ta"0%e t)e "'n&e $en"e& '! D$ B'i&;

d'$*%e "'n&"i'$&ne& /)i%e t)e p)en'men'n '! ex"%$&i'n i& $ni,er&a%> it& !a"e& ma(

,ar( !r'm "$%t$re t' "$%t$re> p%a"e t' p%a"e# C'n&e $ent%( t)e *e&t p'&&i*%e 4a(& t' )e%p peer& ',er"'me *arrier& and ta0e t)e !ir&t and m'&t di!!i"$%t &tep& t' *e"'me &e%!

ad,'"ate& ma( *e "$%t$re &pe"i!i"# It 4a& t)ere!'re imp'rtant t' "'n&ider3 4)at %an-$a-e

4'$%d *e a""epta*%e t' de&"ri*e '$r&e%,e& in t)e -r'$p H'4 t' "'mm$ni"ate ,er(

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&en&iti,e> '!ten tra$mati" i&&$e& am'n- '$r&e%,e& 4it)'$t "reatin- additi'na% *arrier& t'

parti"ipati'n in t)e -r'$p 4'r0

A!ter %'n- de%i*erati'n& B)ar-a,i and I de"ided t' -' !'r a t)ree da( intera"ti,e

4'r0&)'p 4it) at m'&t +: parti"ipant Intera"ti,it( "a%%ed !'r %imited n$m*er '!

parti"ipant&> 4)i%e t)e need !'r a &a!e en,ir'nment> 4)ere pe'p%e "an emp'4er

t)em&e%,e& 4it)in a &)'rt time t' &)are pain!$% experien"e&> "a%%ed !'r a $&er 'n%( &pa"e#

A%&' D$ B'i&; d'$*%e "'n&"i'$&ne&& and t)e p)en'men'n '! &e%e"ti,e %i&tenin- "an *e

*e&t dea%t 4it) in $&er 'n%( -r'$p

B$t 4)en t)e pra"ti"a% 'r-ani&ati'n '! t)e trainin- &tarted> 4e !a"ed &eemin-%(

$nre&'%,a*%e pr'*%em H'4 t' rea") t)e $&er& 4e 4ere t' in,ite T)ere are !ami%(

-r'$p& and 'r-ani ati'n& in India> *$t t)e -en$ine $&er m',ement i& $&t a*'$t t' &tart#

Sin"e n't man( pe'p%e )a,e identi!ied t)em&e%,e& a& $&er&> )'4 d' 4e &ee0 t)em '$t#

T)e 'n%( 4a( 4e "'$%d !ind> *e&ide& ad,erti&in- t)e e,ent p$*%i"%( t)r'$-) t)e media>

4a& "'nta"tin- !ami%( mem*er& and &er,i"e pr',idin- NGO& 4it) 4)'m Bap$ Tr$&t )ad

a%read( )ad "'nta"t&> dire"t%(> re $e&tin- t)em t' -i,e t)e in!'rmati'n 'n t)e trainin- and

t' a&0 t)eir $&er !ami%( mem*er&."%ient& i! t)e( 4ere intere&ted in parti"ipatin-#

Fami%( mem*er& and pr'!e&&i'na%& expre&&ed t)eir '4n intere&t in parti"ipatin- in t)e

e,ent# T)e( a%&' rai&ed "'n"ern& t)at t)eir $&er re%ati,e."%ient 4'$%d re $ire a&&i&tan"e>

4it)'$t 4)i") t)e( "'$%d n't attend 'r a"ti,e%( parti"ipate in t)e pr'"eedin-

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At t)at p'int 4e de"ided t)at t)e !ir&t da( 4'$%d *e an 'pen )'$&e !'r an('ne 4i%%in- t'

"'me> *$t t)e &e"'nd and t)ird da(& are 'pen 'n%( t' $&er I! t)e $&er re $e&t& !'r

per&'na% a&&i&tan"e> t)at 4i%% *e arran-ed 'int%(# Ex"ept !'r 'ne $&er> 4)' did n't 4ant

t' "'me a!ter t)e !ir&t da(> n' 'ne a&0ed !'r &$") arran-ement T)e $&er 'n%( -r'$p

mana-ed t' &$pp'rt 'ne an't)er &$!!i"ient%(#

One da( *e!'re t)e 4'r0&)'p> t)e> t)e Time& '! India $ne p$*%i&)ed an inter,ie4 4it)

B)ar-a,i and m(&e%!# T)e inter,ie4 *rie!%( *$t "'rre"t%( de&"ri*ed 4)( $&er& needed

&e%! ad,'"a"( and 4)at 4a& t)e 4'r0&)'p aimin- t' a")ie,e# C'n&e $ent t' t)e

ne4&paper inter,ie4> man( pe'p%e expre&&ed t)eir intere&t and &i-ned $p !'r t)e !ir&t da(

'! t)e e,ent# T)i& &$r-e '! intere&t meant t)at t)e n$m*er '! expe"ted parti"ipant&

"%im*ed !r'm +: t' : per&'n Sin"e t)e 4'r0in- met)'d& 4ere de,e%'ped !'r +:

per&'n& t)e "%im* in n$m*er& re $ired $& t' re,i&it t)e 4'r0in- met)'d'%'-(#

( 1 2 The first da!

T)e !ir&t da( 4i%% *e narrated in detai% !'r &e,era% rea&'n& *$t m'&t ma 'r%( *e"a$&e t)i&

da( &er,e& a& t)e *a"0dr'p !'r t)e entire 4'r0&)'p#

T)e ma 'r aim& !'r t)e !ir&t da( 4ere mani!'%d# /e B)ar-a,i and Ga*'r 4anted a%% t)e

parti"ipant&3 $&er&> !ami%( "are -i,er& and pr'!e&&i'na%& t' -ain a *a&i" *$t "%ear

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$nder&tandin- 'n 4)( &e%! ad,'"a"( i& needed# /)( &pea0in- 'n *e)a%! '! a re%ati,e 'r

"%ient i& di!!erent !r'm t)e $&er &pea0in- $p !'r )im 'r )er&e%!# /)( ad,'"atin- 'n *e)a%!

'! an't)er per&'n "an ne,er rep%a"e &e%! ad,'"a"(# /e a%&' 4anted t' a%%e,iate t)e

anxietie& '! &'me '! t)e n'n $&er parti"ipant /e 4anted t)em t' $nder&tand t)at t)eir

$&er re%ati,e& . "%ient& 4i%% *e in a &a!e p%a"e 4)ere t)e &pirit and pra"ti"e '! m$t$a%

&$pp'rt i& ,er( m$") pre&ent# Fina%%(> 4e 4anted t' !a"i%itate t)e n'n $&er& t' 'pen t)eir

e(e& and )eart& t' &ee t)e &tren-t)& '! t)e $&er& and t)eir '4n ,$%nera*i%itie /e 4anted

t' en-a-e 4it) t)e "are -i,er&> a& 4e did n't &ee t)em a& enemie /e 4anted a%% $&er&

and "are -i,er& t' $nder&tand t)e *a&i"& '! &e%! ad,'"a"( and 4anted t' rem',e t)e

*arrier& in t)e -r'$p t' ena*%e t)e $&er parti"ipant& t' experientia%%( %earn m're a*'$t

)'4 &e%! ad,'"a"( "an 4'r0# H'4 4e addre&&ed t)i& "'mp%exit( '! tar-et&> 4)i") in t)e

/e&t are '!ten &een a& "'n!%i"tin- i! n't anta-'ni&ti" I need t' detai% t)e p)i%'&'p)(>

te")n'%'-( and ")r'n'%'-( '! t)e !ir&t da(#

T)e da( &tarted 4it) a r'$nd '! intr'd$"ti'n T)e di,er&it( '! t)e -r'$p 4a& a&t'ni&)in-#

S'me pe'p%e intr'd$"ed t)em&e%,e& a& $&er& 4)' are a4are '! t)eir ri-)t&> 't)er& a&

patient& %i,in- 4it) a "ertain dia-n'&i S'me '! t)e !ami%( mem*er& a"0n'4%ed-ed t)eir

'4n di&tre&&7 't)er& 4ere $n"%ear '! t)e identit( 4it) 4)i") t)e( )ad entered t)e trainin-#

M'&t '! t)e n'n $&er&> and &'me '! t)e $&er& intr'd$"ed t)em&e%,e& $&in- a *i'medi"a%

%an-$a-e 6M( da$-)ter> 4)' i& ,er( &e,ere%( di&a*%ed &")i 'p)reni"> i& $na*%e t'

attend 7 6I am a re"',erin- &")i 'p)reni" # T)e&e de&"ripti'n& "%ear%( i%%$&trated t)e

"$%t$ra% imperia%i&m '! *i'medi"a% menta% )ea%t)#

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Be!'re t)e &$*&tanti,e &e&&i'n& t)e -r'$p ad'pted a &ma%% n$m*er '! -r'$nd r$%e&>

re"'mmended *( t)e !a"i%itat'r T)e m'&t imp'rtant 'ne& 4ere3

Re&pe"t !'r t)e di,er&it( '! ,ie4&

A%% t)e expre&&ed ,ie4& and &)ared experien"e& are &een a& ,a%id

/e are )ere t' %earn and &)are 4it) 'pen mind& and n't t' ma0e de"%arati'n& '!

'$r *e%ie! 'n 4)at 6tr$t) i

C'n!identia%it(3 6E,er(t)in- t)at )appen& in t)e -r'$p remain& in t)e -r'$p #

T)e !ir&t &e&&i'n 4a& a &ma%% -r'$p 4'r0> a %i*era%%( adapted ,er&i'n '! a trainin- "a%%ed

Ne4 Li!e&t(%e T)i& di&"'$r&e *a&ed trainin- 4a& 'ri-ina%%( de,e%'ped in t)e 5 t)en

adapted !'r Centra% Ea&tern E$r'pean "'ntext *( a -r'$p '! &e%! ad,'"ate& and n'n

di&a*%ed ad,'"ate& in an internati'na% 4'r0&)'p )'&ted *( m( Ga*'r;& &e%! ad,'"a"(

'r-ani&ati'n in H$n-ar(#

T)i& adapted ,er&i'n '! Ne4 Li!e&t(%e& trainin- "'n&i&ted '! t)ree &ta-e e'p%e 4ere

di,ided int' &ma%% -r'$p /e )ad t)ree $&er -r'$p& and 'ne -r'$p !'r t)e n'n $&er

Ea") -r'$p 4a& 4'r0in- 'n t)e &ame ta&0# T)e &ame +: "ard& 4ere di&tri*$ted in ea")

-r'$p am'n- t)e -r'$p mem*er Ea") "ard de&"ri*ed an e,er(da( &it$ati'n> &$") a&

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Bein- a*%e t' -et a paid '* and a%&' &$pp'rt t' maintain it

Bein- %i&tened t' and en"'$ra-ed t' expre&& ('$r '4n ,ie4&

Bein- in a meetin- 4it) ('$r d'"t'r t' de"ide 'n ('$r )ea%t) "are# /)i%e ('$rd'"t'r exp%ain& ('$r )ea%t) "'nditi'n )e i& permanent%( %''0in- int' t)e e(e& '!

('$r re%ati,e& and "'mp%ete%( i-n're& ('$r pre&en"e

Bein- a&0ed ('$r 'pini'n 'n a &er,i"e ('$ re"ei,e and ('$r ,ie4& *ein- ta0en

int' "'n&iderati'n 4)en impr',in- t)e &er,i"e

N't *ein- tr$&ted

In t)e !ir&t &ta-e pe'p%e in ea") -r'$p )ad a &)'rt de%i*erati'n 'n t)e &it$ati'n& 4ritten 'n

t)e "ard T)e( needed t' de"ide a%'n- 4it) *rie! rea&'n& i! t)e &it$ati'n 4a& &'met)in-

t)e( 4'$%d %i0e t' )appen in t)eir %i,e&

t)e( 4'$%d %i0e t' a,'id in t)eir %i,e&

t)e( 4ere ne$tra% a*'$t it#

T)e !ina% de"i&i'n 'n 4)i") "ate-'r( t)e -i,en &it$ati'n *e%'n-ed t' 4a& t' *e made *(

t)e per&'n 4)' )e%d t)e "ard> *$t i! t)ere 4a& &i-ni!i"ant di&a-reement in t)e -r'$p> t)i&

4a& n'ted and rep'rted in t)e !eed*a"0 %ater !'r t)e %ar-e -r'$p '! a%% parti"ipant Ea")

&ma%% -r'$p 4ent t)r'$-) a%% t)e "ard A& an '$t"'me '! t)i& &ta-e ea") -r'$p )ad t)ree

"'%$mn& in !r'nt '! t)em# In 'ne "'%$mn t)ere 4ere t)'&e &it$ati'n& 4)i") 4ere

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"%a&&i!ied a& 6I 4'$%d %i0e t' )appen > an't)er "'%$mn "'n&i&ted '! t)e "ard& 4it) &"ript&

t)at 4ere $d-ed a& 6I 4'$%d %i0e t' a,'id > 4it) a t)ird "'%$mn !'r &it$ati'n& de&i-nated

a& ne$tra%# A%&'> ea") -r'$p 4a& re $ired t' maintain a re"'rd 'n 4)at &it$ati'n& t)ere

4a& *r'ad a-reement and 'n 4)i") 'ne& t)ere 4a& &i-ni!i"ant di,i&i'n '! ,ie4

In t)e &e"'nd &ta-e> t)e &ame &ma%% -r'$p& 4ent t)r'$-) t)'&e &it$ati'n& 4)i") 4ere in

t)e 6I 4'$%d %i0e t' )appen "'%$mn and an&4ered t)e $e&ti'n3 6I& &$") a &it$ati'n

t(pi"a%%( a,ai%a*%e !'r $&er& '! menta% )ea%t) &er,i"e& I! t)e -r'$p;& "'n&en&$& 4a&

6N' t)en t)e "ard remained in t)e "'%$mn> 't)er4i&e it 4a& rem',ed#

T)en "ame t)e 6I 4'$%d %i0e t' a,'id "'%$mn# N'4 t)e -r'$p 4a& a&0ed t' an&4er t)e

&ame $e&ti'n a& *e!'re> *$t t)i& time t)'&e "ard& remained in t)e "'%$mn t' 4)i") t)e

"'n&en&$a% -r'$p an&4er 4a& 6Ye& #

T)e "ard& in t)e t)ird "'%$mn 4ere t'ta%%( rem',ed#

In t)e t)ird &ta-e ea") -r'$p 4'r0ed 'n t)e remainin- "ard /it) t)'&e &it$ati'n& t)at

4ere &een a& de&ira*%e *$t n't t(pi"a%%( a,ai%a*%e !'r $&er& and t)'&e> 4)i") 4ere &een a&

a,er&i,e> *$t t(pi"a%%( pre&ent in $&er&; e,er(da( %i,e Ea") -r'$p &pent &'me time 4it)

de%i*eratin- 'n 6/)( t)i& di&"repan"( i& t)ere 6/)at "'$%d I a& an indi,id$a% d' t'

")an-e it !'r t)e *etter

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T)e !ina% part '! t)e &e&&i'n 4a& a !eed*a"0 !r'm ea") &ma%% -r'$p t' t)e p%enar( 'n t)eir

m'&t imp'rtant %earnin-& t)r'$-) t)e trainin- exer"i&e# S'me '! t)e m'&t mem'ra*%e

'$t"'me& 4ere3

T)e identit( '! *ein- a $&er i& a "'mp%ex 'ne# Man( pe'p%e !'$nd exi&tin-

%an-$a-e inade $ate t' de&"ri*e t)eir experien"e& and t)eir ,ie4& 'n t)eir identit(#

O!ten t)e $&er identit( i& imp'&ed 'n t)e per&'n externa%%(> *( t)e menta% )ea%t)

&(&tem> *( "are -i,er&> et"#

T)ere i& n' &$") a t)in- a& 6t)e $&er ,ie4 # 5&er& are a di,er&e -r'$p7 ea")

indi,id$a% )a& )i&.)er '4n ,a%$e &(&tem t)at need& t' *e re&pe"ted

Ha,in- &aid t)at> &ti%% t)ere 4a& a &(&temati" di!!eren"e *et4een t)e $&er -r'$p&;

,ie4& and t)e n'n $&er -r'$p 'n &'me i&&$e E&pe"ia%%( 4)at 6pr'te"ti'n >

6"arin- > 6&$pp'rt meant 4a& $nder&t''d di!!erent%( *( t)e ma 'rit( '! $&er& and

t)e n'n $&er

/)en t)e 6Bein- a*%e t' -et a paid '* and &$pp'rt t' maintain it &it$ati'n> 4a&

*ein- di&"$&&ed &'me mem*er& '! t)e n'n $&er -r'$p -'t "'n!$&ed# T)e( a&0ed

t)e !a"i%itat'r !'r "%ari!i"ati'n3 !r'm 4)'&e per&pe"ti,e &)'$%d t)e( e,a%$ate t)e

&it$ati'n Fr'm t)e "are -i,er;& per&pe"ti,e> 'r !r'm t)e $&er;& per&pe"ti,e# T)e

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p%enar( &pent &'me time 'n t)i& di%emma and &'$-)t e%a*'rati'n '! t)e &ame in t)e

!eed*a"0 &e&&i'n# T)i& de%i*erati'n re&$%ted in t)e re"'-niti'n and

a"0n'4%ed-ement '! &'met)in-> 4)i") I )a,e &e%d'm experien"ed *e!'re d$rin-

&imi%ar trainin-& in t)e /e&t# Name%(3 T)e "are -i,er -r'$p p$*%i"%(

a"0n'4%ed-ed t)at t)eir per&pe"ti,e i& di!!erent !r'm t)e $&er&; ,ie4 T)i&

a"0n'4%ed-ement 4a& "riti"a% t' t)e de,e%'pment '! t)e $nder&tandin- 4)(

ad,'"atin- !'r a $&er re%ati,e."%ient i& di!!erent !r'm ad,'"atin- !'r 'ne&e%!# A%&'>

t)i& $nder&tandin- "'$%d &er,e a& a -r'$nd !'r !$t$re "'%%a*'rati'n *et4een t)e

$&er and n'n $&er -r'$p& t' pr'm'te t)e &e%! ad,'"ate;& per&pe"ti,e#

In de%i*eratin- t)e 6Bein- a&0ed a*'$t m( 'pini'n '! a &er,i"e I re"ei,e and m(

,ie4& are *ein- ta0en int' "'n&iderati'n 4)en impr',in- t)e &er,i"e &it$ati'n>

t)ere 4a& a "'n&en&$& am'n- t)e -r'$p& t)at t)i& )appen& 'n%( ex"epti'na%%( in

t)e menta% )ea%t) &e"t'r# It i& t)e p)en'men'n '! &e%e"ti,e %i&tenin- 4)i")

pre,ai% /)en t)e $&er 'pine& t)at t)e &er,i"e i& -''d> )i&.)er ,ie4 i& m're %i0e%(

t' *e re"'-ni ed t)an 4)en t)e $&er;& ,ie4& are "riti"a%# A%&'> t)e m're 6&e,ere%(

di&a*%ed t)e $&er> t)e %e&& %i0e%( t)at )i&.)er ,ie4& are &'$-)t !'r and "'n&idered#

T)e p%enar(> 4it) !a"i%itati'n> re"'-ni ed t)e irrati'na%it( '! t)i& attit$de# T)e

m're need( t)e $&er t)e &tr'n-er )i& 'r )er dependen"e 'n t)e &er,i"e In an

$npre $di"ed ri-)t& *a&ed 4'r%d> it i& t)e ,'i"e '! t)i& need( $&er t)at &)'$%d *e

ta0en m'&t &eri'$&%( 4)en de&i-nin-> de%i,erin- and e,a%$atin- t)e &er,i"e

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T)e Ne4 Li!e&t(%e& &e&&i'n &et t)e "'n&tr$"ti,e and re%axed atm'&p)ere> t)e &pirit '! "'

'perati'n and re&pe"t !'r t)e di,er&it( '! ,ie4& !'r t)e re&t '! t)e da(#

A!ter %$n") and a &)'rt &e&&i'n '! p%a(in- t)e dr$m& in t)e %ar-e -r'$p> t)e da( "'ntin$ed

4it) r'%e p%a(in- exer"i&e T)e aim !'r t)i& &e&&i'n 4a& t' )e%p parti"ipant& t'

$nder&tand t)e di!!eren"e *et4een 'ne> ad,'"atin- !'r &'me'ne in 6)i& 'r )er

&$pp'&ed%( *e&t intere&t and t4'> pr',idin- &$pp'rt t' t)e per&'n t' ad,'"ate !'r )i& 'r

)er '4n 4i%% and pre!eren"e# A-ain> t)e &e&&i'n 4a& *a&ed 'n &ma%% -r'$p 4'r0> *$t t)i&

time t)e -r'$p& 4ere &et $p rand'm%( and t)e( 4ere mixed -r'$p& '! $&er& and "are

-i,er Ea") -r'$p )ad a "'$nterpart3 One '! t)e -r'$p& 4a& -i,en a &"ript> re $e&tin-

t)e -r'$p t' prepare t' a"t t)e r'%e '! t)e &e%! ad,'"ate# T)e "'$nter -r'$p 4a& re $e&ted

t' a"t 'n t)e &$pp'&ed *e&t intere&t '! t)e $&er

T)e nat$re '! t)e exer"i&e i& i%%$&trated *( t)e !'%%'4in- pair '! &"ript&3

Scri&t 1 for the BSelf 4)i") )a& a

-''d "',er '! tree B$t 'ne *i- tree i& -r'4in- ri-)t next t' t)e &ide 4a%% '! ('$r )'$&e#

I! ('$ d'n;t "$t t)e tree> t)e 4a%% 4i%% "'%%ap&e# It i& a-ain&t t)e %a4 t' "$t t)e tree# B$t

('$ )a,e n' ")'i"e# /)en t)e a$t)'ritie& "'me t' $e&ti'n ('$> ('$ )a,e t' exp%ain 4)(

('$ )a,e t' "$t t)e tree# Ad,'"ate !'r ('$r&e%!#

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Scri&t 1 for the B)est interest ad ocate grou& : Y'$ %i,e in a &ma%% nei-)*'$r)''d>

4)i") )a& a -''d "',er '! tree B$t 'ne *i- tree i& -r'4in- ri-)t next t' t)e &ide 4a%% '!

('$r re%ati,e;& )'$&e# He %i,e& $&t a"r'&& t)e r'ad# I! )e d'e&n;t "$t t)e tree> t)e 4a%% 4i%%

"'%%ap&e# It i& a-ain&t t)e %a4 t' "$t t)e tree# He "$t& t)e tree# /)en t)e a$t)'ritie& "'me

t' $e&ti'n )im> )e 4ant& ('$r )e%p in exp%ainin-# Y'$ )a,e t' ad,'"ate !'r )im in )i&

*e&t intere&t> t)at it i& *etter )e '*e(& t)e %a4#

Repeatin- t)e exer"i&e 4it) di!!erent pair& '! &"ript& de&"ri*in- "'mm'n &it$ati'n& in

India > ")an-in- t)e 6r'%e& '! t)e &ma%% -r'$p& !r'm 6Se%! ad,'"ate t' 6Be&t intere&t

ad,'"ate and ,i"e ,er&a > m'&t '! t)e parti"ipant& 4ere -i,en t)e 'pp'rt$nit( t'

experien"e )'4 it !ee%& 4)en &'me*'d( e%&e ad,'"ate& !'r t)em in t)eir &$pp'&ed *e&t

intere&t E,er(*'d( 4a& a%&' -i,en t)e 'pp'rt$nit( t' -et a !ee% '! *ein- &$pp'rted t'

4'r0 '$t )'4 t' ad,'"ate !'r )im 'r )er&e%!# /)en 4'r0in- in t)e 6Se%! ad,'"ate

-r'$p > t)e -r'$p 4a& a"tin- a& a &$pp'rt net4'r0 '! t)e e%e"ted per&'n 4)' $%timate%(

r'%e p%a(ed t)e &e%! ad,'"ate#

T)e %earnin- '! t)e r'%e p%a( &e&&i'n 4a& &)ared in t)e p%enar(# e'p%e 4ere a&0ed t'

&)are )'4 it !e%t 4)en t)eir ,'i"e 4a& '$t4ei-)ed *( t)eir ad,'"ate;& ,'i"e# H'4 did it

!ee% 4)en t)e( re"ei,ed &$pp'rt t' ad,'"ate !'r t)eir '4n 4i%% and pre!eren"e

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T)e da( ended 4it) a *etter &)ared $nder&tandin- '! 4)( &e%! ad,'"a"( i& needed# H'4

"are -i,er& "an &$pp'rt &e%! ad,'"ate& H'4 &e%! ad,'"a"( 4it) &$pp'rt di!!er& !r'm t)e

*e&t intere&t ad,'"a"( appr'a")e N'n $&er parti"ipant&> 4)i%e expre&&in- t)eir intere&t

in !$rt)er trainin-&> a""epted t)at t)e re&t '! t)e 4'r0&)'p &)'$%d *e 'pen t' $&er& 'n%(>

and t)e( "'$%d d' &' 4it)'$t t)e pre 4'r0&)'p anxiet( 'n 4)at 4i%% )appen t' t)eir $&er

re%ati,e&."%ient

( 1 % Da! 2 and %

I )a,e a%read( menti'ned t)at t)e 6$&er identit( i& m$") m're "'mp%ex and &$*t%e t)an

4e in t)e &e%! ad,'"a"( m',ement '!ten rea%i e# Later in t)i& *''0%et Amita e%a*'rate&

'n )'4 &)e rea")ed )er identit(> t)r'$-) )er %i,ed %i!e> '! a n'n di&a*%ed ad,'"ate# Here I

4i&) t' d4e%% 'n an't)er ,ariet( '! ad,'"ate> 4)' I en"'$ntered *et4een t)e 1 &t and + nd

da( '! t)e $&er 4'r0&)'p#

One '! t)e parti"ipant& &i-ned $p !'r t)e !ir&t da(> t)e 'pen )'$&e> a& a pr'!e&&i'na%> a

re&ident p&(")iatri&t# At t)e end '! t)e da( )e appr'a")ed t)e 'r-ani&er& i! )e "'$%d

attend t)e re&t '! t)e 4'r0&)'p a& 4e%%# In t)e intera"ti,e di&"'$r&e '! t)e da(>

parti"ipatin- and 4itne&&in- t)e &)arin- t)at )appened 'n &e,era% %a(er& !r'm t)e )eart t'

t)e inte%%e"t> n't a,'idin- t)e *'d( eit)er in t)e dr$m &e&&i'n > )e "'$%d n' %'n-er &ee

)im&e%! primari%( a& a p&(")iatri&t re&ident *$t rat)er a per&'n 4)' )ad experien"ed

tr(in- em'ti'na% di&tre&& and t)en 'pted !'r *e"'min- a p&(")iatri&t *e"a$&e )e )ad *een

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in!'rmed *( )i& '4n experien"e# He a%&' $nder&t''d t)e imp'rtan"e '! &e%! ad,'"a"( and

&tarted t' &ee )im&e%! a& 'ne 4it) t)e $&er &$r,i,'r "'mm$nit(# He 'ined t)e re&t '! t)e

4'r0&)'p and "'ntri*$ted 4it) )i& d$a% identit( '! *ein- a $&er and a re&ident p&(")iatri&t

in 'ne per&'n#

T)e narrati'n '! t)e %a&t t4' da(&; pr'"eedin-& i& &trai-)t!'r4ard# T)e '* e"ti,e& !'r

t)'&e da(& 4ere t' experientia%%( identi!( and %earn *a&i" &0i%%& and 0n'4%ed-e t)at are

needed in &e%! ad,'"a"(#

C'mm$ni"ati'n

Ne-'tiati'n

A&0in- !'r and pr',idin- &$pp'rt !'r t)e &e%! ad,'"ate

Emp'4erment

Da( + &tarted 4it) a m're intimate intr'd$"ti'n '! t)e parti"ipant&> 4)' 4ere n'4 a%%

$&er B)ar-a,i !a"i%itated a 6Se%! a& M(t) K a er&'na% J'$rne( &e&&i'n> 4)ere a%%

parti"ipant& 4ere a&0ed t' de&"ri*e t)em&e%,e& a& m(t)i"a% !i-$re And t)en de%i*erate

'n 4)at it meant t' *e a )er' 'r )er'ine in t)eir '4n %i,e /e departed !r'm t)e

!rame4'r0 4)i") i& imp'&ed 'n $& *( t)e "$%t$ra% imperia%i&m '! *i'medi"a% p&(")iatr(#

/e *e"ame )er'e& and )er'ine& rat)er t)an menta%%( i%% pe'p%e> *rain di&ea&ed patient

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/e e,en departed !r'm &eein- '$r&e%,e& a& 6$&er& # T)i& 4a& a -''d 'penin- t' %earn

!r'm ea") 't)er a*'$t )'4 t' ad,'"ate !'r '$r&e%,e& a& 4e are# A& 4e de!ine '$r&e%,e

T)e re&t '! t)e pr'-ramme 4a& a mix '! pr',idin- in!'rmati'n 'n and $nderta0e "apa"it(

*$i%din- exer"i&e& 'n &0i%%& re $ired !'r &e%! ad,'"a"(# I de%i,ered a %e"t$re intr'd$"in-

t)e ,ari'$& "'mm$ni"ati'n &t(%e&> 4)i") 4ere t)en immediate%( r'%e p%a(ed *(

parti"ipant T)en t)e art '! ne-'tiati'n 4a& di&"$&&ed> &in"e &e%! ad,'"ate& are

"'n&tant%( ne-'tiatin- 4)en per!'rmin- t)e r'%e& '! &e%! ad,'"ate& and "'mm$ni"ati'n

&0i%%& are inte-ra% t' !air and e!!e"ti,e ne-'tiati'n T)e&e t)e'reti"a% de%i*erati'n& 4ere

!'%%'4ed *( r'%e p%a(in- exer"i&e& 4)i") )e%ped t)e parti"ipant& t' $nder&tand )'4

ne-'tiati'n& )appen and t)e r'%e p%a(ed *( inte%%e"t$a%> em'ti'na% and 't)er e%ement& in

ne-'tiati'n

T)e !'%%'4in- ne-'tiati'n ta&0& 4ere -i,en t' -r'$p& '! parti"ipant

1# Ad,'"atin- !'r $&er at a *an0 !'r 'penin- an a""'$nt

+# Ad,'"atin- 4it) a "'!!ee &)'p . "a!eteria !'r )'%din- a menta% )ea%t) &e%! )e%p -r'$p

2# Hirin- a Gr'$p )'$&e 'n rent !'r $&er&

9# Ne-'tiatin- 4it) &(")iatri&t !'r ")an-in- t)e medi"ati'n . a-ain&t )'&pita%i ati'n

:# Ne-'tiatin- 4it) t)e !ami%( !'r in,itin- $&er t' marria-e . !e&ti,a% 'r 't)er "e%e*rati'n&

=# Ne-'tiatin- 4it) t)e !ami%( !'r $&er t' 'in a &e%! )e%p . peer &$pp'rt . ad,'"a"( -r'$p

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50/131

B)ar-a,i dem'n&trated an ex"itin- exer"i&e t' )e%p 6n'rma% pe'p%e -et a !ee% '! )'4

6)earin- ,'i"e& "an in!%$en"e %i!e# Se,era% ,'%$nteer& 4ere a&0ed t' &it in !r'nt '! t)e

't)er T)e( 4ere in&tr$"ted t' %i&ten t' 'ne parti"ipant 4)' 4a& readin- a text a%'$d#

T)ree 't)er ,'%$nteer& 4ere m'$t)in- 4'rd&> 'r $&t ma0in- &'$nd& int' t)e ear& '! t)'&e

4)' ,'%$nteered t' %i&ten t' t)e text *ein- read '$t %'$d# S'me '! t)e %i&tener& *r'0e

d'4n 4it)in a !e4 &e"'nd T)e( "'$%d n't !'%%'4 t)e text *e"a$&e '! t)e di&t$r*in-

,'i"e S'me '! t)em 4ere "r(in-# A!ter a !e4 min$te& ea") '! t)e ,'%$ntar( %i&tener&

4ere a&0ed t' rep'rt 'n )'4 t)e experien"e> 4)i") 4a& $&t a r'$-) &im$%ati'n '! 4)at

pe'p%e 4)' )ear ,'i"e& experien"e 'n a dai%( *a&i T)eir rep'rt 4a& a re,e%ati'n# B$t###

I !e%t t)at t)i& exer"i&e 4a& *ri%%iant t' )e%p n'n ,'i"e )earer& $nder&tand )'4 it !ee%& t'

)ear ,'i"e And (et> I a%&' !e%t t)at t)e exer"i&e 4a& a d'$*%e ed-ed &4'rd7 &in"e it "'$%d

a%&' "reate t)e *e%ie! t)at ,'i"e )earer& are &' ',er4)e%med> &' di&a*%ed *( t)eir ,'i"e&

t)at t)e( "an p%a( n' r'%e in &e%! ad,'"a"(#

T)i& appre)en&i'n tri--ered m( &p'ntane'$& inter,enti'n 4)i") 4a& a $ni $e experien"e

e,en !'r me# I 4a& t)ere 4it) m( an-er> 4it) m( em'ti'n&> 4it) m( inte%%e"t and &p'0e

a*'$t t)e )earin- ,'i"e& m',ement# H'4 pe'p%e d' %earn t' "'pe 4it) t)eir ,'i"e H'4

&'me "an %earn t' t$rn ,'i"e& !r'm di&a*%in-.di&t$r*in- p)en'mena t' p'&iti,e re&'$r"e

H'4 ,'i"e )earer& are t)e &ame a& a%% '! $&> $&er&> and )'4 t)e( are di!!erent# I

"'n"%$ded *( a&0in- !'r a n'n ex"%$&i'n p'%i"(#

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T)e end '! t)e da( 4a& dramati"# E,er(*'d( %e!t 4it) deep em'ti'n&> 4it) t)e need t'

re!%e"t> t' d' a )eart &ear")# Are 4e indeed read( t' in"%$de ALL '! $& 4)' 4ant t' 'in

Or are 4e ex"%$din- &'me '! $&> $&t *e"a$&e 4e d' n't $nder&tand T)e examp%e "ame

t)r'$-) t)e p)en'men'n '! ,'i"e )earin-# It "'$%d )a,e "'me t)r'$-) 't)er p)en'mena

a& 4e%%# It 4a& "%ear t)at *( next m'rnin- ea") '! $& )ad t' )a,e an an&4er3 are 4e

4i%%in- t' in"%$de a%% $&er& 4)' are intere&ted in &e%! ad,'"a"( Or &)a%% 4e &tart '$r '4n

-ame '! "$%t$ra% imperia%i&m 4it)in '$r '4n m',ement

T)e t)ird and %a&t da( -a,e a pr'mi&in- an&4er t' t)'&e di%emma E,er(*'d( "ame *a"0

and 4e )ad pr'mi&in- &e&&i'n& 'n emp'4erment# Man( '! $& expre&&ed '$r "'mmitment

t' *e in"%$&i,e# H'4 /e 4ere a%&' pri,i%e-ed t' )a,e an A$&tra%ian and a Zam*ian peer

4it) $ T)e( &)ared t)eir experien"e 'n &e%! ad,'"a"( and peer &$pp'rt !r'm t)eir

"'$ntrie

B$t t)e )a$ntin- $e&ti'n i& &ti%% 4it) me a& I 4rite t)e&e %ine I& '$r m',ement

in"%$&i,e Or are 4e "'p(in- t)e "$%t$ra% imperia%i&t& /)' i& a peer /)' d' 4e need

t' 4'r0 4it) /it) 4)'m &)'$%d 4e *$i%d &'%idarit( *a&ed a%%ian"e& I !irm%( *e%ie,e

t)at t)e&e are am'n- t)e m'&t pre&&in- $e&ti'n& !'r t)e $p"'min- (ear& in t)e &e%!

ad,'"a"( m',ement#

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( 2 Assisting Self Ad ocac! in "ersons with Intellectual

Disa*ilities

India )a& a %ar-e net4'r0 '! arent&; A&&'"iati'n& 4)' intera"t 4it) ea") 't)er $nder a

$m*era%%a 'r-ani ati'n "a%%ed Parivar # T)i& $m*era%%a 'r-ani ati'n )a& *een primari%(

ad,'"atin- !'r t)e ri-)t& '! per&'n& 4it) inte%%e"t$a% di&a*i%itie T)e ad,'"a"( '! ri-)t&

i& n't $nderta0en *( per&'n& 4it) di&a*i%itie& t)em&e%,e&> *$t t)eir parent& a& t)e

repre&entati,e& '! per&'n& 4it) inte%%e"t$a% di&a*i%itie& &pea0 !'r t)eir ri-)t T)i& %ar-e

repre&entati,e 'r-ani ati'n 4a& !'$nded 4it) t)e *e%ie! t)at per&'n& 4it) inte%%e"t$a%

di&a*i%itie& 4ere in"apa*%e '! p%eadin- t)eir '4n "a$&e and t)eir entit%ement& 4'$%d n't

*e )'n'$red *( t)e &tate $n%e&& "'mmitted repre&entati,e& &p'0e !'r t)em# Sin"e>

parent& in t)e main> 4'$%d de&ire t)e *e&t !'r t)eir 4ard&> t)e( 4ere -enera%%( a""epted a&

t)e m'&t &$ita*%e repre&entati,e& !'r per&'n& 4it) inte%%e"t$a% di&a*i%itie T)e

'r-ani ati'n did n't> ti%% ,er( re"ent%( a""ept t)at per&'n& 4it) inte%%e"t$a% di&a*i%itie&

"'$%d *e t)eir '4n &p'0e&per&'n T)e( did n't a%&' t)in0 t)at t)ere "'$%d *e a di!!eren"e

in per"epti'n 'n 4)at t)e( de&ired !'r t)eir 4ard& and 4)at per&'n& 4it) inte%%e"t$a%

di&a*i%itie& ma( 4ant !'r t)em&e%,e

Ar'$nd t)e time t)at Ga*'r 4a& ,i&itin- India> t)ere 4a& &'me ret)in0in- in ari,ar 'n

t)i& $e&ti'n and "'n&e $ent%( t)e !ir&t &e%! ad,'"a"( 4'r0&)'p !'r per&'n& 4it)

inte%%e"t$a% di&a*i%itie& 4a& 'r-ani ed in H(dera*ad# Mr#Gad0ari> t)e re&ident '!

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ari,ar a&0ed i! Ga*'r "'$%d !a"i%itate 'ne &e&&i'n 4it) t)e ('$n- &e%! ad,'"ate& and

&in"e 4e Ga*'r and Amita 4ere "'n,in"ed '! t)e need !'r "r'&& di&a*i%it( &'%idarit(> 4e

a-reed#

Sin"e ('$ "ann't &$pp'rt &e%! ad,'"a"( 4it)'$t e&ta*%i&)in- a rapp'rt 4it) &e%!

ad,'"ate&> Ga*'r 'ined t)e &e%! ad,'"ate& -r'$p !r'm t)e m'rnin-> parti"ipated in t)eir

,ari'$& a"ti,itie& '! &in-in-> dan"in- and -ame p%a(in- *e!'re $nderta0in- )i& '4n

&e&&i'n %ater in t)e a!tern''n# T)e *'ndin- time 4a& a& "r$"ia% t' t)e %earnin- pr'"e&& a&

t)e time &pent in dire"t%( en-a-in- 4it) t)e &e%! ad,'"ate In t)e dire"t &e&&i'n a-ain

Ga*'r did n't te%% t)e ('$n- &e%! ad,'"ate& 4)at t)e( 4'$%d re $ire t' )a,e t)eir &e%!

ad,'"a"( $nit ta0e '!!7 rat)er )e a&0ed t)em 4)at t)e( 4'$%d re $ire t' render t)eir

'r-ani ati'n !$n"ti'na%# 5p'n re"ei,in- t)e t(pi"a% an&4er t)at m'ne( 4a& needed> )e

4a& a*%e t' -ent%( &)'4 t)e ('$n- per&'n& a& t' )'4 m$") t)e( "'$%d d' 4it)'$t m'ne(

and a%&' 4)at i& t)e m'&t appr'priate time and a"ti,it( !'r 4)i") t' &ee0 m'ne(# At ea")

p'int> )e 0ept &)arin- 4it) t)e ('$n- ad,'"ate& )'4 )e and )i& "'%%ea-$e& )ad &et $p

t)eir '4n &e%! ad,'"a"( -r'$p in H$n-ar(# T)e &e%! ad,'"ate& arri,ed at t)eir '4n

an&4er& *$t 4)at Ga*'r did 4a& t' )e%p t)em rea") t)'&e an&4er It i& imp'rtant t' n'te

t)at at n' p'int in t)e dia%'-$e did )e %ead t)e ('$n- per&'n& t' a parti"$%ar ")'i"e#

In&tead )e "'ntin$a%%( %i&tened t' t)e pre!eren"e& expre&&ed *( t)e ('$n- per&'n& and

)e%ped t)em rea") t)eir '4n de"i&i'n& 'n t)e &tr$"t$re '! t)eir 'r-ani ati'n and t)e

a"ti,itie& t)at it 4'$%d "arr( '$t *( $&t p'intin- t' t)e &tren-t)& and 4ea0ne&&e& '! t)e

,ari'$& ")'i"e& t)at t)e( 4ere ma0in-# T)$& !'r examp%e t)e ('$n- ad,'"ate& 4it) n'

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re&'$r"e& 4ere "'n,in"ed t)at t)e( "'$%d n't 'r-ani e an e,ent 4it)'$t a p)'t'-rap)er>

Ga*'r !ir&t%( a""epted t)i& de&ire '! t)e ('$n- ad,'"ate& and t)en dia%'-$ed 4it) t)em

'n )'4 *e&t t' !$%!i% t)eir de&ired -'a%# T)e "'n,er&ati'n 4)i") re,'%,ed ar'$nd "'&t '!

pr'!e&&i'na% &er,i"e&> ea&( a,ai%a*i%it( '! n'n pr'!e&&i'na% &0i%% 4a& &' "'nd$"ted t)at at

t)e end '! t)e "'n,er&ati'n t)e ('$n- ad,'"ate& arri,ed at t)e de"i&i'n t)at t)e( 4'$%d

n't )ire a p)'t'-rap)er *$t )a,e 'ne '! t)em p)'t'-rap) t)e e,ent and t)$& &a,e

,a%$a*%e re&'$r"e

( % )rainstor#ing with the T-T #e#*ers

T)i& *'tt'm $p met)'d'%'-( 4a& a-ain p$t t' te&t in a t4' da(& *rain &t'rmin- &e&&i'n

t)at 4a& 'r-ani ed *( t)e Nati'na% Tr$&t 4it) it& Z'na% Te")ni"a% Re&'$r"e Team

ZTRT '! "r'&& di&a*i%it( ad,'"ate T)e Nati'na% Tr$&t )ad p$t in p%a"e t)i& team in

a""eptan"e '! t)e *e%ie! t)at per&'n& 4it) di&a*i%itie& &)'$%d ta0e %eader&)ip in di&a*i%it(

matter& and t)e( 4ere e&pe"ia%%( e $ipped t' $nderta0e t)i& ta&0# At t)e &ame time> t)e

Tr$&t )a& *een a4are '! t)e pre $di"e 4)i") &$*&i&t& a-ain&t per&'n& 4it) di&a*i%itie& and

t)e "'ntin$a% need t' de,i&e &trata-ie& t' '!!&et t)i& pre $di"e# A 'int re!%e"ti'n '! t)e

ZTRT mem*er& 4a& &$--e&ted a& a $&e!$% 4a( '! initiatin- t)i& &trate-( *$i%din-

exer"i&e# /e Ga*'r and Amita 4ere a&0ed t' !a"i%itate t)i& "'mm$nit( re!%e"ti'n in

'rder t' &tren-t)en di&a*i%it( ri-)t& ad,'"a"(#

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T)e meetin- 4a& initiated *( a&0in- t)e team mem*er& t' re!%e"t $p'n t)e &tren-t)& and

4ea0ne&&e&> 'pp'rt$nitie& and t)reat& '! t)e di&a*i%it( ri-)t& m',ement in India t'da(#

T)e ana%(&i& dem'n&trated t)at t)ere 4ere ,er( man( time& 4)en a &tren-t) "'$%d

*e"'me a 4ea0ne&&> a& a t)reat "'$%d *e "'n,erted int' an 'pp'rt$nit(# F'r examp%e> )'4

t)e &tren-t) '! di&a*i%it( &'%idarit( "'$%d *e $&ed t' dea% 4it) t)e di&$nit( in t)e

di&a*i%it( ri-)t& m',ement# S$*&e $ent t' t)i& S/OT ana%(&i&> t)e parti"ipant& 4ere

a&0ed t' &$--e&t 'ne a"ti,it( 4)i") t)e( 4'$%d 4i&) t' ta0e $p re%(in- $p'n t)e &tren-t)&

and 'pp'rt$nitie& and 4it)'$t *ein- t)4arted *( t)e 4ea0ne&&e& and t)reat T)e ,ari'$&

parti"ipant& &$--e&ted me-a %e,e% a"ti,itie& &$") a& emp'4erment '! 4'men 4it)

di&a*i%itie& 'r en&$rin- a""e&&i*i%it( !'r per&'n& 4it) di&a*i%itie N'4> t)e&e 4ere

de&ira*%e '* e"ti,e&> *$t t)e( depended 'n &' man( externa% !a"t'r& t)at t' de&i-n a

p%anned inter,enti'n 4a& 4e%% ni-) imp'&&i*%e# T)e !a"i%itati'n met)'d'%'-( ad'pted

a&&i&ted t)e parti"ipant& t' per"ei,e t)e 4ea0ne&& '! t)eir pr'p'&a% t)em&e%,e T)i&

a&pe"t '! t)e met)'d'%'-( 4a& "'mmented $p'n *( &e,era% parti"ipant& a& *'t) ed$"ati,e

and emp'4erin-#

( ( Vid!asagar Chennai 8

O$r Amita and Ga*'r t)ird en"'$nter 4it) &e%! ad,'"ate& 4a& at a meetin- !a"i%itated

*( Vid(a&a-ar at C)ennai 'n +=t) '! N',em*er> + @# In&'!ar a& Ga*'r;& ,i&it t' India

Vid(a Sa-ar i& a t4ent( (ear '%d 'r-ani ati'n *a&ed in C)ennai Tami%nad$> 4)i") '!!er& pr'-ram& t)at !'"$& 'n)'%i&ti" de,e%'pment and ed$"ati'n !'r ")i%dren and ad$%t& 4it) &pe"ia% need&7 dem(&ti!i"ati'n '! di&a*i%it(7emp'4erin- per&'n& 4it) &pe"ia% need& and t)eir !ami%ie& 4it) 0n'4%ed-e and &0i%%&> 4)i%e &tr'n-%( ad,'"atin- 'ni&&$e& '! in"%$&i'n#

::


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4a& aimed t' "ata%( e &e%! ad,'"a"(> it 4a& "'n&idered 'n%( appr'priate t)at )i& %a&t

'!!i"ia% en-a-ement &)'$%d *e 4it) &e%! ad,'"ate A& t)i& 4a& a 'ne da( meetin-> t)e

a&&em*%ed &e%! ad,'"ate& 4ere 'n%( a&0ed t' re!%e"t $p'n t4' $e&ti'n&3

One> 4)at did t)e( &ee a& t)e &tren-t)&> 4ea0ne&&e&> 'pp'rt$nitie& and t)reat& '!

t)e di&a*i%it( ri-)t& m',ement3

and t4' 4)at &trata-ie& 4'$%d t)e( &$--e&t t' en)an"e t)e &tren-t)& and

'pp'rt$nitie& and t' minimi e t)e 4ea0ne&&e& and t)reat

/)i%&t t)e !ir&t $e&ti'n 4a& de%i*erated $p'n in t)e -r'$p a& a 4)'%e t)e &e"'nd

$e&ti'n 4a& !ir&t "'n&idered in &ma%% -r'$p& and t)en di&"$&&ed *( t)e -r'$p a& a 4)'%e#

T)e meetin- 'n"e a-ain emp%'(ed "'mm$nit( dia%'-$e and re!%e"ti'n t' emp'4er &

di&a*i%it( ri-)t& ad,'"ate

H'4 &)'$%d di&a*i%it( ri-)t& a"ti,i&t& rea"t 4)en t)e( are a""'rded "'n"e&&i'n& *$t d'

n't -et t)eir $&t d$e 4a& 'ne $e&ti'n 4)i") ar'$&ed animated di&"$&&i'n# /)i%&t a%%

per&'n& 4it) di&a*i%itie& !e%t t)e( 4ere entit%ed t' pr'te&t> a-itate and re!$&e> t)e n'n

di&a*%ed parti"ipant& p'inted '$t t)at t)e rea"ti'n "'$%d *e ,ie4ed a& ")$r%i&)# M're

imp'rtant%(> t)e di&a*i%it( "'mm$nit( 4'$%d need t' re"'-ni e t)at t)e "'n"e&&i'n& "ame

!r'm pe'p%e in t)e &(&tem 4)' *e%ie,ed in t)e di&a*i%it( ri-)t& "a$&e and )en"e 4ere

*endin- t)e r$%e& t' t)e maxim$m p'&&i*%e# I! t)i& e!!'rt 4a& n't re"'-ni ed> t)en

:=


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di&a*i%it( a"ti,i&t& "'$%d %'&e p'tentia% a%%ie E,en a& t)e per&'n& 4it) di&a*i%itie&

re"'-ni ed t)at t)ere ma( *e &'me merit in t)e "'ntenti'n> t)e( 4ere a*%e t' -et t)e n'n

di&a*%ed a"ti,i&t& t' "'mpre)end t)e di!!eren"e *et4een $&ti"e and ex"epti'n ma0in-#

/)i%&t ex"epti'n ma0in- ma( a%%'4 an indi,id$a% per&'n 4it) di&a*i%it( t' -et )i& 'r )er

!''t in t)e d''r> t)e di&a*i%it( "'mm$nit( 4'$%d '*tain in"%$&i'n 'n%( 4)en t)eir

demand& '! $&ti"e 4ere !$%!i%%ed# T)i& -'a% 4'$%d ne"e&&itate a per&i&tent ,'i"in- '! t)e

di&&ati&!a"ti'n !e%t *( t)e di&a*i%it( "'mm$nit( and t)i& r'%e "'$%d n't *e &a"ri!i"ed at t)e

a%tar '! "'$rte&( and -''d manner

+ ,nowledge )uilding and Awareness -aising

+ 1 @ith the )a&u Co##unit!

Ga*'r G'm*'& in )i& &ix m'nt) ,i&it t' India 4a& *a&ed at t)e Centre !'r Ad,'"a"( in

Menta% Hea%t)> Bap$ Tr$&t> $ne# /)i%&t )e tra,e%%ed t)r'$-) t)e %en-t) and *readt) '!

t)e "'$ntr( !$%!i%%in- t)e ,ari'$& en-a-ement& 4e )a,e '$t%ined in di!!erent part& '! t)i&

rep'rt# Hi& preparati'n !'r t)e&e ,ari'$& en-a-ement& a& a%&' )i& "'re "'ntri*$ti'n t' &e%!

ad,'"a"( di&"'$r&e )appened at t)e Centre# Ga*'r !$n"ti'ned !r'm t)e Bap$ '!!i"e !r'm

m'rnin- t' e,enin- intera"tin- 4it) peer& and "'%%ea-$e& &ix da(& a 4ee0# T)$&> r$nnin-

a%'n- 4it) t)e&e )i-) pr'!i%e en-a-ement& 4a& t)e di&"ip%ine '! e,er(da( r'$tine# T)i&

:?


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r'$tine -a,e )im t)e "'mm$nit( &$pp'rt and t)e "'nne"tedne&& t' *'t) t)e "'$ntr( and

t)e di&a*i%it( "'mm$nit(> 4it)'$t 4)i") it 4'$%d n't )a,e *een p'&&i*%e !'r )im t' !$%!i%%

t)e m're am*iti'$& "'mmitment& '! )i& pr'-ramme# /e menti'n t)i& t' p'int '$t t)at

&e%! ad,'"a"( ma( )a,e an indi,id$a% !a"e> *$t it "ann't pr'&per 4it)'$t "'mm$nit(

&$pp'rt# Bap$ Tr$&t 'perated a& t)at "'mm$nit( !'r Ga*'r#

T)e ,ari'$& a"ti,itie& '$t%ined in t)i& rep'rt en,i&a-ed per&$adin- t)e $n"'n,erted and

t)e $ninitiated t' %''0 at t)e ri-)t& '! per&'n& 4it) p&(")'&'"ia% di&a*i%itie& !r'm a

di!!erent per&pe"ti,e# F'r t)i& enterpri&e t' &$""eed it 4a& e&&entia% t)at t)e a%read(

initiated &)'$%d *e "'n,in"ed 4it) '$r ar-$ment T)e Bap$ "'mm$nit( t)$& ena*%ed

n'n t)reatenin- re!%e"ti'n and a%%'4ed !'r inn',ati'n and experimentati'n# /)i%&t t)e&e

a"ti,itie& 4ere $nderta0en in an $n&tr$"t$red manner t)r'$-)'$t Ga*'r;&

catalyzing self advocacy- an experiment in india

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