Guatemala, Disability, Ideology:

The importance of elevating the voices of the disabled in rural Guatemala through qualitative research.

Disability studies can be understood as a conversation that begins with personal narratives. When conducting research of a community experiencing compounded marginalization (rural, poor, disabled), it is necessary to allow the personal narrative discourse to arise from within the group and not be imposed by the outside. During my research internship with Viviendas Leon, I conducted research on disability in central America and how to create a research project that gathers the most effective data to be used to help the community.

Guiding Questions

What type of data gathering will create the most effective policy and implementation guidelines for the disabled population in Guatemala?

Qualitative data allows for this process to occur. Though disability studies is a conversation, the most vital interlocutors of this conversation, disabled people and their families, are not included. Therefore, the policy that is currently in place does not fully represent the social difficulties that a person with disabilities confronts in their day to day life. 

I hope to fill a gap in research by elevating the shared experiences of those who live in rural areas of Guatemala through qualitative data. By focusing on the most underrepresented sector of the population, researchers can establish a relevant definition of disability, discover the causes, and assess their needs.

Background

Through Viviendas Leon, I began building a network for dispersing the interview through disability advocacy non-profits in the Lake Atitlan area of Guatemala. The project is not completed yet and there are no findings to share until I conduct the interviews.

Literature Review

Poverty and Disability

“Disability and poverty are concomitant conditions. The cyclical relationship between these two conditions has been recognized globally, with disability increasing the risks of becoming poor and poverty increasing the risk of becoming a person with disability” (Pinilla-Roncancio, 2017, p 398).

Disability is both a cause and a consequence of poverty. Another economic researcher states, “disability is both a determinant of poverty, because it lowers earning power and consumption expenditures (Haveman and Wolfe 2000; Gertler and Gruber 2002), and a consequence of poverty, because the cumulative deprivations of poverty such as inadequate infant or child development, or exposure to dangerous working conditions, can manifest themselves in disability” (Filmer, 2008, p 150).

Barriers preventing education participation are the same barriers preventing work participation. Low level of education then leads to a low income.

Policy Not Implemented

The fact that a high amount of those in poverty in Latin America and the Caribbean are disabled suggests that ratifying the UNCRPD is not enough. Simply passing policy does not mean that it is put into practice (Perez, 2017; Dudzik, 2020).

“Researchers have noted global and regional inadequacy or non-existence of policy implementation and enforcement (Dudzik, 2020).” Every research study I found discussed the lack of implementing disability policy and is therefore an agreed upon conclusion.

Studies that use quantitative data have stated that the data is often old, outdated, and sparse (Filmer, 2008; Pinilla-Roncancio, 2017; Grugel, 2017; Dudzik, 2020). The lack of data makes it difficult to measure the effectiveness of policy passed.

Current research about the pandemic determined that social inequities are exacerbated in the midst of a pandemic and unequal distribution of assets leads to social tension (Sakellariou, 2020). During the pandemic, or any natural disaster, those with disabilities will be some of the most vulnerable to socioeconomic tensions (Gandelman, 2018).

Qualitative Research Global South Disability Studies

Academic Neocolonialism is a term used to describe the fact that gathering quantitative data doesn’t take into account the context of the local population but instead uses blanket terms, concepts, theories and data gathering mechanisms that are from the Global North. Theories, definitions, and critiques of disability studies are from the Global North, while effects of colonialism and post-colonialism from the Global North have actually produced disabilities for the colonized.

Meekosha identifies factors of neocolonialism generated by the Global North that create disabilities for the Global South such as nuclear testing and dumping, global arms trade, sweatshops, civil wars provoked and supported by the Global North, famine, and poverty. The culture, history, geopolitics, and even causal factors for becoming disabled are all fundamentally different in these two places. Therefore, it is inappropriate to apply the same theories. Furthermore, allowing the Global North’s disability theories to dominate and be mainstream for the rest of the world is yet another form of post-colonialism.

“Theories, definitions, and critiques of disability studies are from the Global North, while effects of colonialism and postcolonialism from the Global North have actually produced disabilities for the colonized.”

Methodology

Through the interview that I have designed, data will measure direct physical needs that the disabled population in Guatemala have such as medical equipment, prosthetics, architectural changes, and economic support, all of which can raise the quality of life of that person or family and mitigate barriers to inclusion and participation. The interview data will also identify the culture of disability there in Guatemala. Furthermore, I anticipate learning about the causes of disabilities to measure how many are created by colonial/postcolonial processes.

Through Viviendas Leon, I began building a network for dispersing the interview through disability advocacy non-profits in the Lake Atitlan area of Guatemala. The project is not completed yet and there are no findings to share until I conduct the interviews.

Conclusion

In conclusion, qualitative data, such as personal narratives, can benefit various aspects of the disabled population.

Researchers working with this form of data have unpacked nuances, background information, and the inter relational nature of systems generating a deeper understanding about weaknesses in the current infrastructure and how those can be improved

The findings from personal narrative data can form a benchmark and used to implement supports.

The other incredible factor about personal narrative is that it empowers people to find their voice, share their experience, and form a community. This community can then mobilize to make positive change. The people within this community can then use the dialogue created in sharing personal narratives to give rise to a local and relevant “disability studies” academic body of literature. The entire world can then learn about the culture of disability there in Guatemala.