Together for a barrier free Tajikistan:
Promoting inclusion of children with all
abilities in Tajikistan through a social norms
perspective
Siyma Barkin Kuzmin, UNICEF Tajikistan
Penn - UNICEF Summer Course, 2014
Advances in social norms and social change
Tajikistan is a landlocked low-income
country in Central Asia

7.565 million population (Census 2010)

40 % of the population under 18

73% of population living in rural areas
(Census 2010)

93% of its territory is mountainous

Only 7% of arable land

Level 127 in HDI

47 % of GDP from remittances (World
Bank 2012) (highest in the world)
Quick facts on children with disabilities
In the world:
1 billion people have a disability with at least 1 in 10 being
children and 80 per cent living in developing countries.
(15 % of the adult population and 5.1 % of the child population 014)
In the CEE/CIS region:
5.1 million children with disabilities out of which 3.6 million
not included in any official data, "invisible".
In Tajikistan:
26.3 thousand registered children with disabilities
(0.8 per cent of the child population)
Sources: World Report on Disability 2011; TansMonee
2012; Ministry of Labour and Social Protection of Tajikistan
2011).
DEFINITION OF DISABILITY- REFLECTION OF EMPIRICAL
EXPECTATION
Definition of disability according to the Convention
on the Rights of Persons with Disabilities
Disability is considered a social issue, which means it
results from the interaction between people with long-term
physical, mental, intellectual or sensory impairments and
their environment. These interactions hinder their full and
effective participation in society on an equal basis with
others.
Definition of disability according to the Law on the
Social Protection of People with Disabilities
Disability is a medical condition, where ’disabled’ is defined
as a person with health deficiencies that progressively
reduce his/her body functions due to sickness, injuries,
physical and mental disabilities which limit his/her daily
activities and puts him/her in need of social protection.
Overview of barriers and bottlenecks that prevent CWD accessing existing
benefits and community based services
Social Norms
-
Legislation/Policy
-
Budget/Expenditure
-
-
Management/Coordina tion
-
Fear of parents of children with disabilities to be
excluded from society to be outcasts that leads CWD
being ‘hidden’ or ‘institutionalised’. The factual
normative
and
personal
beliefs,
stigma
and
discrimination surrounding disability’
Poor implementation of current legislation and policies
Current policies inadequate
Existing services for CWD are underfunded (Social
Assistance at Home Units, community-based services)
Insufficient local authority budgets to purchase services
from private not-for-profit providers
A multitude of actors and poorly defined, sometimes
overlapping or conflicting institutional mandates
Poor coordination at local and national level
Poor monitoring of benefits and services
Budget allocations and utilization lack transparency
Availability of Essential
Commodities/Inputs
-
Access to Adequately
Staffed Services, Facilities and Information
Social and Cultural
Practices and Beliefs
-
Lack of assistive devices for CWD, lack of wheelchairs
for children
Lack of rehabilitation equipment
Infrastructure often not adapted for CWD
Lack of transport for outreach workers
Physical access to services often difficult for CWD
Services are understaffed (e.g. Social Assistance at
Home Units)
Low parental awareness of available benefits and
services
Low parental awareness of how to work with CWD
Lack of awareness about roles and responsibilities
amongst duty bearers
Medical model of disability prevails, with a focus on
‘correcting’
Beliefs that link disability to ‘curses’ or a ‘punishment’
Perception of congenital disability as a shortcoming of
the mother
Reluctance towards inclusion
Belief that an institution is best for CWD
IDENTIFICATION
Children with disabilities are kept home without being
shown to others/ or placed in an institution
People prefer to follow it
conditional on their social
expectations
People prefer to follow
it irrespective of what
others do
Empirical expectation suffice to
motivate action
Parents with children with
disabilities keep their children at
home and do not take them out in
the community or show them to
others, or they place their children
with disabilities in a special care
institution so others do not know
about their existence because it
brings shame to the family.
Custom or moral rule
Descriptive
norm
Normative expectations are also
needed to motivate action
families of CWD believe that other
people in the community think that
families who have children with
disabilities should keep their children at
home, or place them in a special
institution.
Social norm
The change path for norm
creation
1.Diagnose
2.Change
beliefs &
attitudes
3.Collective
pledge to
change
6.Create
empirical
expectations
5.Create
normative
expectations
4.Introduce
sanctions
7.Sustain the
change
1.Diagnose
MEASURE THE SOCIAL NORM TO
DESIGN AN INFORMED INTERVENTION

INCLUDE THE REFERENCE GROUP


PARENTS, OTHER PARENTS, CHILDREN AT THE COMMUNITY, SERVICE
PROVIDERS, COMMUNITY LEADERS
GO BEYOND KAP

ASK HYPOTHETICAL, COUNTERFACTUAL QUESTIONS
1.Diagnose
•Do you know anyone with a
disability
•How do you treat him
What
the
responder
does
•What do you think
people who have
CWD do with these
children?
•If other families were
to stop hiding CWD,
what would you do
What the
responder
believes
others
do
What
the
responder
believes
she
should
do
What
the
responder
Believes others
think
She should
do
•How do you think
CWD should be
treated?
•How do you think
others think where
CWD should live?
Should they go to
schoo
•This mother is bringing her
CWD to school, do you think
there will be repercussions
for her family?"
UNCOVERING SOCIAL NETWORKS
at the organizational level
2. Change beliefs &
attitudes

CHANGE HAS TO BE A COLLECTIVE DECISION

WORK WITH THE ORGANISATIONS MOST TRUSTED

VALUES DELIBERATIONS


DEBATES CLUBS/YOUTH GROUPS

MAKE PEOPLE SEE THEIR BELIEFS ARE NOT CORRECT

SHOCK PEOPLE
EXPERIENCING DISABILITY
BRING VISIBILITY TO CWD/COMMUNICATION AMONG PEOPLE THROUGH
RECREATION, SPORTS, CULTURE

PUBLIC CAMPAIGN

STREET THEATER –TO REACH OUT TO ALL (INCLUDING IN RURAL AREAS)

SPECIAL OLYMPICS

FOOTBALL FEDERATION/TEAKWONDO

BEST BUDDY/PAIR CHILDREN WITH AND WITHOUT DISABILITIES

HOW CAN CWD BE INCLUDED?
3. Collective pledge to
change


ENGAGE IN VALUES DELIBERATIONS WITH DIFFERENT
GROUPS OF CORE GROUP

PARLIAMENTARIANS

SCHOOL DISTRICTS
PLEDGE –

INCLUSIVE SCHOOLS

INCLUSIVE DISTRICTS

PARLIAMENTARIANS
4.Recognisations
/Sanctions

CHILDREN FOR CHILDREN

DISTRIBUTE AWARENESS RAISING CARDS TO APPRECIATE OT
SANCTION BEHAVIOUR TOWARDS DISABILITY

ACCESSIBILITY TOURS

CHILDREN’S WATCH GROUPS TO CHECK MEDIA, BUILDINGS
ETC
5.Create normative expectations
Norms are embedded in a web of beliefs, expectations,
attitudes. I.E. Schemata/Scripts
Factual beliefs
CDW are dependent,
untrainable
Scripts/strerotypes/
Good mother script/
They protect their
children and keep
them home away
from harm and being
ridiculed
Other normaastive
beliefs
Good citizen scripts/
gives charity
Attitudes
I don’t want to see
CWD in the
playground
Normative beliefs
As a good mother I
should protect my
child
These are linked with expectations- so change the
expectation to change the scripts/schemata
5.Create normative
expectations (Cont.)
EVERYONE BELIEVES ALL FAMILIES SHOULD INVOLVE
THEIR CHILDREN IN REGULAR LIFE

BRING VISIBILITY TO CHILDREN WITH DISABILITIES

HAVE PUBLIC DECLARATIONS FOR AN INCLUSIVE SOCIETY

INVOLVE MEDIA, SOCIAL MEDIA, YOUTH GROUPS

MAKE IT LOOK BIGGER THEN IT IS- everyone is doing it
and all know it…
I have a voice
Integrate CWD in all topics and make it
known
Integrate CWD in other areas and make it known
through broadcasting, showing in local media, in
meetings, through facilitors laptops etc.
6. Create empirical
expectations/
Everyone includes children with disabilities

INVOLVE THE MEDIA/PUBLISE THE INCLUSIVE SCHOOLS AND
DISTRICTS

SHARE INFORMATION ON GOOD PRACTICES

SHOW CWD IN THE PUBLIC SPACES

THROUGH BOOKKEEPING AS MORE AND MORE PEOPLE SEE CWD
INCLUDED, THE SCHEMATA WILL CHANGE AND THE NEW SOCIAL
NORM WILL BE ADOPTED.
7. SUSTAIN THE CHANGE

Continue harmonization of the legal, moral, social
norms

Advocacy with the parliament for change of definition of
disability to support changed social norms and moral
principles.

Continue showcasing abilities of children, children in
inclusive schools, out in the public

CWD issues are mainstreamed
SOCIETY ACCEPTS CHILDREN WITH DISABILITIES AND RELEVANT
SERVICES ARE IN PLACE TO SUPPORT AND SUSTAIN THAT
CWD ARE PART OF SOCIETY AND RESPECTED FOR WHO THEY ARE
Maybe I don’t have a learning disability but you
have a teaching disability.
CALL FOR ACTION FOR
MAINSTREAMING CWD
Disability is a multifaced and complex phenomenon that requires
coordinated action on various levels.

So when designing programs to address other harmful practices
please consider including issues related to CWD:

Open defecation : How about latrines accessible to CWD?

Violence against children: How about CWD who are among the most
vulnerable- how to protect them and change social norms related
to this practice in consideration of CWD.

Breastfeeding: Children with cleft lip etc., other disabilities bot
being breastfed.

Practices related to nutrition: Stunting among CWD

Girls schooling: How about girls with disabilities and their
education?
TOGETHER FOR A BARRIER FREE TAJIKISTAN:
For inclusion of children with disabilities
sbarkinkuzmin@unicef.org