DISCRIMINATION OF POLIO SURVIVORS IN INDIA The 2nd European Polio - PowerPoint PPT Presentation

DISCRIMINATION OF POLIO SURVIVORS IN INDIA The 2nd European Polio Conference, Amsterdam June, 2014 Presented by The Catholic Health Association of India

Introduction  India celebrated its three year anniversary of being a polio free nation  Polio is often thought of as synonymous with paralysis and disability.  One of the leading causes of physical disability in India  Persons with disabilities are one of the most oppressed, marginalised and stigmatized groups  In the Indian context; cultural and religious beliefs are so deeply imbedded that they have an effect on the attitudes of the society at large

Understanding Stigma and Discrimination  Concept of stigma dates back to the time of Greeks where it was conceptualised as bodily signs which are unusual or different (Goffmann,1963)  Stigma is looked at a broader sense where it goes beyond a physical mark and involves attributes that leads to widespread social disapproval  Stigma not only occurs in social interactions but also resides within the social context

 Polio is one of the conditions that is Enacted Stigma: perceived to be stigmatized Discriminatory experiences from societal reactions  Labelling process leads to enacted stigma and felt stigma Felt Stigma: Discriminatory experiences from  Persons affected with polio imagined social stigmatised due to the reactions accompanying disabilities caused by the disease

Stigma and the Indian context  Influence of religious beliefs creates further stigmatisation  Considered as a ‘flaw’ or lacking something  Concept of karma: repaying for previous sins committed  Looked upon as eternal childhood which further emphasizes dependency and reinforces the charity/pity model  Rights of polio survivors thus grossly neglected

Multiple discrimination Trap  Disability a social construct when combined with other social constructs such as gender, caste, ethnicity leads to multiple discrimination  Further leads to denied access of education, employment and maintaining social relationships  Fosters low self esteem, increases vulnerability, low literacy level and furthers experiences of neglect within their own families  Creation of physical and attitudinal barriers and thereby denying access to basic rights.

Stigma of polio survivors: Study  A study adopting a mixed approach  Polio Survivor Definition : Persons affected by polio who have a lifelong disability  Conducted among 30 polio survivors located in the rural areas of Mahaboobnagar district of Telangana state in India  The quantitative aspect was done using the Participation scale developed by ILEP to get a quantitative measure of perceived participation restrictions.  The qualitative aspect involved in-depth interviews among 10 participants.

Stigma of polio survivors: Study  A set of 18 structured questions were asked which dealt with participation in various aspects :  Work  Social interaction  Recreational activities  Social relationships  Decision making  Participation within the household

Stigma of polio survivors: Study  The scale involved two parts.  Initially the participants were asked if they faced issues in participation in different aspects.  Followed by rating of issues where scores were assigned. The larger the issue, a higher score was assigned and vice versa.

Findings: Demographic details  Half of the participants belonged to the age bracket of 20 – 40 years while the remaining between 40-60 years.  Half of the respondents were male participants while the remaining half comprised of females  All the participants belonged to economically backward families.

Findings: Participation  40% of the participants stated to face severe restriction across all spheres of their life  More than half of them were women polio survivors  Related to the multiple discrimination aspect wherein gender and disability play a role in stigma and discrimination.  Around 33% were stated to face moderate restriction while 23% faced mild restriction in terms of participation

Findings: Participation  Higher restriction faced in participation of recreational activities  Other areas include : within the workspace, social interaction in public places and limitations in doing household work  Least score was given to the area where participants were asked about their confidence in learning new things

Findings: Participation  Restrictions not only due to their physical limitations but also due to the inaccessibility of the environment.  Highlights that public places are built keeping the majority able bodied persons in mind thus not catering to the requirements of those having limitations  Polio survivors still faced difficulties in the area of social relationships particularly marriage  Younger generation faced lesser restriction across different spheres as compared to their older counterparts

Conclusion  Important to not ignore those persons who have been afflicted with the disease and are living with a disability  There is a need to include programmes which ensure rehabilitation and mainstream the polio survivors into the society  Though India is a signatory of the United Nations Convention on Rights of Persons with Disabilities, majority of the efforts remain on paper

Conclusion  Some of the major aspects that require focus:  Increase in co-ordination between the various departments and ministries  Inclusion of disability agenda across various sectors of health, education, labour, recreation etc  Increase in awareness among the public about the rights of persons with disabilities

Conclusion  Sensitisation and capacity building of health care workers towards persons with disabilities  Multi stakeholder participation which involves persons with disabilities, caregivers, bureaucrats, technocrats, corporates, government organisations and media in the disability rights movement

Thank You!