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  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 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 inadequate Budget/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/Coordina tion - 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 bearers Social 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

IDENTIFICATION Children 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 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. 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 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 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 How do you think CWD should be treated? How do you think others think where CWD should live? Should they go to schoo Do you know anyone with a disability How do you treat him What the responder does What the responder believes she should do What the responder Believes others think She should do What the responder believes others 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 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

Norms are embedded in a web of beliefs, expectations, attitudes. I.E. Schemata/Scripts Factual beliefs CDW are dependent, untrainable Attitudes I don’t want to see CWD in the playground Normative beliefs As 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