together for a barrier free tajikistan: promoting inclusion of children with all abilities in...
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Together for a barrier free Tajikistan:Promoting inclusion of children with all abilities in Tajikistan through a social norms perspective
Siyma Barkin Kuzmin, UNICEF TajikistanPenn - UNICEF Summer Course, 2014Advances 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 beingchildren and 80 per cent living in developing countries. (15 % of the adult population and 5.1 % of the child population 0-14)
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 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.
DEFINITION OF DISABILITY- REFLECTION OF EMPIRICAL EXPECTATION
Overview of barriers and bottlenecks that prevent CWD accessing existing benefits and community based services
Social Norms - 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’
Legislation/Policy - Poor implementation of current legislation and policies
- Current policies inadequateBudget/Expenditure
- 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
Management/Coordination
- 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
- 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
Access to Adequately Staffed Services, Facilities and Information
- 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 bearersSocial and Cultural Practices and Beliefs
- 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
IDENTIFICATIONChildren with disabilities are kept home without being
shown to others/ or placed in an institution
People prefer to follow it irrespective of what others do
Custom or moral rule
People prefer to follow it conditional on their social
expectations
Empirical expectation
suffice to motivate
actionParents 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.
Descriptive norm
Normative expectations are also needed to motivate
actionfamilies 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 creation1.Diagnos
e2.Change beliefs
& attitudes
3.Collective pledge to
change
4.Introduce sanctions
5.Create normative
expectations
6.Create empirical
expectations
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
• 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?"
• What do you think people who have CWD do with these children?
• If other families were to stop hiding CWD, what would you do
Whatthe
responderdoes
Whatthe
responderbelieves
sheshould
do
Whatthe
responderBelieves others
thinkShe should
do
What theresponderbelievesothers
do
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 PEOPLEEXPERIENCING 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
Norms are embedded in a web of beliefs, expectations, attitudes. I.E. Schemata/Scripts
Factual beliefsCDW are
dependent, untrainable
AttitudesI don’t want to
see CWD in the playground
Normative beliefsAs a good mother I should protect
my child
Other normaastive beliefs
Good citizen scripts/ gives
charity
Scripts/strerotypes/Good mother script/They protect their children and keep
them home away from harm and being
ridiculed
These are linked with expectations- so change the expectation to change the scripts/schemata
5.Create normative expectations
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
Maybe I don’t have a learning disability but you have a teaching disability.
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
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