Maria Berghs, PhD, research fellow, University of York, UK
“You get me? You need to start filming people. That way people will see!” said Mohammed in criticism of my work. In post-conflict Sierra Leone, people like Mohammed had a sophisticated understanding of research. Due to a mediatised war and post-conflict relief economy, people disabled by a ten year civil conflict (1991-2002) had a lot of contact with a plethora of journalists, photographers, film-makers, health care professionals, lawyers, non-governmental organisations, missionaries, government workers and researchers. This also entailed high expectations.
Writing and photography were outdated modes of social action and disabled people now expected to be seen (i.e. on YouTube or in films) and speak directly to an audience. The biggest apprehensions they voiced were about whether research was actually going to benefit them, just elites or myself (Berghs 2012)? Despite social activism most people reiterated that impairment was ‘their problem’ and ‘survival’ was still their primary concern. There were also huge differences between educated male elites and people living in neglected rural areas, like orphans taken up in an extended family or illiterate women.
During my anthropological fieldwork in 2008-2009, people thus described experiences with different kinds of methodological inquiry and the necessary fluidity of positions in the field of socio-cultural relations they had to adopt. In late 2011, Jalloh noted that, “We were amputees, then victims, then persons with disabilities, and now we are traumatised again?” Both Mohammed and Jalloh were pointing to their experiences with the global commodification of impairment and disability. The disability business (Alrecht 1992) and political economy of disability marketplace (Albrecht and Bury 2001) is not new. However, it is becoming more transnational as the world becomes increasingly globalised. In a time of increased austerity, care becomes increasingly rationed (Albrecht 2001) and the economic focus linked to disability is one of prevention and bio-medical control. This too is big business and a moral economy of impairment and disability becomes instantiated according to charitable deservingness and profitability. Hence, it also becomes more competitive, privatised and exclusionary. Both the embodiment of impairment as visual marker and experience of disability as identity become important. These are defined according to different global scripts and trends which fluctuate according to international policies set by organisations such as the United Nations.
Anthropologists working in Sierra Leone have described how the wounding and impairment of people was intentional during the conflict and done to gain both local and global aid and attention (Berghs 2010, 2011). Adhering to categories such as ‘amputee’ or ‘war-wounded’ became linked to gaining specialised aid and humanitarian resources. In a post-conflict moral and political economy, as the country recovered by means of a truth and reconciliation commission, there was a focus on victims. However ‘victimhood’ sometimes only acted to enforce a dependency that had been created during the relief period (Berghs and Dos-Santos Zingale 2011). Moving towards development and ensuring access to aid now means adopting international standards and definitions, such as ‘persons with disabilities’. Additionally, a current emphasis on mental health policy as well as creation of a peace museum means rethinking ‘trauma’. The Western terminology and definitions are often grounded in medicalised models of disability. These do not reflect the realities of long-term experiences of surviving a conflict, gaining impairments, post-conflict everyday life nor the heterogeneity of differing people and ethnic groups living in Sierra Leone.
When I was doing research, most people implicitly assumed that I would want to hear a horrific story about how they gained their impairment(s) or photograph them. When I asked people about their questions and concerns, they were suspicious and stated that they had never been consulted before. When I asked disability community leaders about indigenous conceptions of disability, they stated that I needed to focus on what the non-governmental organisations (NGOs) were doing. NGOs were responsible for influencing disability policy as set out in the poverty reduction strategy papers – the conditions of aid access agreed by the government and international community. People wounded in the conflict also stated that their identities were symbolically and politically different from other disabled people but they too had to stay in the streets sometimes.
These comments and reactions raise important issues about the inclusion of disabled people in research and the success of disability mainstreaming in development aid, poverty reduction work, peace processes and even education. It also raises issues about in whose terms disabled activism takes place and rights are being enforced? Rights are linked to neoliberalism which people have argued has only perpetuated inequality and disability (Barnes and Sheldon 2010). Likewise, in such a context can we really speak about decolonising disability (Meekosha 2011)? If people state that their one concern is survival, a superficial focus on rights on an elite policy level may not mean any real changes in the way that impairment is created and disability lived by the majority in the everyday.
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