Checkagainstdelivery
Social Forum
5 October 2016; 10:00-10:45
BhargaviDavar
Panel, Informing policy
Research priorities and agendas linked to national or regional Development policies are usually set on positivistic notions of 'objectivity', despite the fact that those policies impact people's lives, groups and communities in a very personal way. The civil society demand for 'experience' and 'people's voices' coming into policy remains to be addressed comprehensively. This is especially so in those marginalized by cascading exclusions and multiple discriminations that happen inter-sectionally, for example, in the case of women and children with disabilities; and among them women with intellectual, psychosocial and multiple disabilities. Bulky turnovers of spreadsheets and numbers, while continuing to be centrally controlled, short term and always incomplete, (for example, the experience with 'Census' in India) alienate and distance persons and women with disabilities from Development policy and outcomes.
More concerning, apoor positivist research culture at the national level ends up delegitimizing and excluding the voices of women with disabilities, which tend to be more personal, descriptive, and based on killing details of 'what happened'. Such auto-ethnographic detailing, rather than informing or inspiring, often exhausts thoseunprepared multi-site, multi-skilled research teams looking for universals;ends up discrediting, doubting and invisiblisingpeople's experiences. This neglect of the personal and experiential in state funded projects undermines people centric foundation on which policy research should be built; and when impacted, communities and women always feel disappointed and betrayed. For example, well meaning, state sponsored research on 'peer support' services for persons with psychosocial issues and disabilities in the UK and other North countries, have resulted in angry rejoinders by civil society movements, which have charged the state with converting a local, trust and mutuality based exchange, into insurance covered vending machine service with low fidelity.
Research on AIDS and HIV, particularly in the global south gives many good practice examples of large scale, gender sensitive, person-centric and community-based studies that blasted through ages of taboo around sexuality, sexual practices, sexual preferences and other attitudinal and social barriers. However, research on women with disabilities is an area replete with those barriers, particularly relating to the emotionally charged negation of the body, mind and spirit of a womanwith a disability; and needs to be addressed with the same determination, purpose, empathy and skill sets, and appropriate tool building, which will go beyond such negation.
Intrusive and rights-violative 'incapacity laws' found in all domains of law, with respect to Commonwealth nations and also some other countries in the Global South, negate the totality of personhood of women with disabilities, especially women with intellectual and psychosocial disabilities. Legal framework not only delegitimizes their voices, but also allows third party appropriations and exploitations over all things personal, including mobility, contracting, marriage, family, children, finance, property, work and employment, wages, domesticity, nationality, trans-nationality, etc. and provides for a plenary guardianship regime.
This 'civil death' results in serious violation of research ethics, for example, by allowance of proxy consent in a variety of research and service situations for persons so denied equal legal status. When a person's voice is denied, and also personhood, the effect is the accretion of abuse, violence, exploitation, forced institutionalization, and other ignominy. Bearing the after-effects of incapacity, in terms of cruel, inhuman, torturous practices in the name of 'clinical trials' and the role of the psycho-pharmaceuticals in directing medical research- all of this is unacceptable. Mortality due to psycho-pharmaceuticals and clinical trials is a huge 'blind spot' in data generation and policy process, in the globalizing South; and is slowly emerging from the North.
The United Nations Convention on the Rights of persons with Disabilities (CRPD), collaborated with the SDGs, must mandate research and ethics in future, to regulate the mainstreaming of disability sector within Development policy and programming.Policy research must be informed by values and practices that provide evidence of non-discrimination, understood as intersectional and layered (gender, disability, sexuality, age, ethnicity). Good practice research examples that shatter attitudinal, discriminatory barriers and have outcome of inclusion of persons, especially women and girls with disabilities must be documented and applied across the Development sector. Informed consent to research should be an unconditional and well safeguarded legal area, within research ethics; and must include the strict regulation of psycho-pharmaceuticals, invasive medical practices, and clinical trials.
While the CRPD mandates a shift of paradigm from the medical to the social, appropriate research tools and techniques do not exist and have not been created in the decade, for effecting this shift. Roadblocks to inclusion can be removed by promoting pilot research and tool development projects, particularly around Article 19 of the CRPD (Right to living independently and being included in communities). Such research would overlay services with questions about effective and inclusive service delivery partnerships and mechanisms, always placing persons with disabilities at the center by inclusiveness in design and execution. Pedagogy around Article 19, international co-operation and aid to facilitate those developments, may give us a meaningful connect with voices and experiences of persons with disabilities; and earn their co-operation and trust.
Thank you!
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