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‘I cannot understand your question’: challenges and opportunities of including persons with disabilities in participatory evaluation

Participatory evaluation has been praised for engaging vulnerable groups such as persons with disabilities (PwD). However, the inclusion of this group can be challenging and even self-defeating if carried out incorrectly. Despite the challenges, evaluators and researchers can follow some strategies to make the evaluation process with PwD as inclusive as possible.


Disability and participatory methods

For a long time, persons with disabilities (PwDs) were socially ostracized and confined to special schools and health centers. Growing pressure from disability rights organizations made possible a shift from an individual and biological view of disability towards a social and inclusive model that focuses on the interaction between individual impairments and social and environmental barriers (Shakespeare, 2006). Since then, international progress has been made to recognize the right of PwDs as full and contributing members of society; the formation of the 2006 UN Convention on the Rights of Persons with Disabilities is an example of a step in the right direction on this front.

In previous decades there has been a shift in research and evaluation methodologies in academia as well. Criticism of the ineffectiveness of the positivist paradigm to include vulnerable groups in research has led to the rise of participatory approaches in which PwDs and other marginalized groups play an important role in shaping research agendas and outcomes (Parry et al., 2001). The alternative bottom-up methodologies became known for challenging power relations and giving voice to marginalized groups, including PwDs (Chambers, 1994).

As a result, participatory methods have been crucial for engaging PwDs in more active roles in the processes of monitoring and evaluation (M&E) and not only as simple research subjects. For instance, many evaluations now involve PwDs organizations in the role of advisers where they can choose data collection instruments (Robinson et al., 2014) and use their expertise to interpret results and provide feedback (Olshanska et al., 2016). Increased participation has been praised for improving the validity and general outcomes of the evaluations (Brandon, 1998).

The challenges of inclusion

Despite recent achievements, many challenges lie ahead for greater inclusive participation of PwDs in program evaluations. One of the most overlooked aspects is the design of inclusive evaluation instruments (surveys, focus groups): evaluators tend to regard PwDs as a homogeneous group. Therefore, the instruments fail to take into consideration the diversity of disability, especially in terms of communication styles.

This creates an under-representation of the least advantaged within the target group. A study of 31 peer-reviewed articles in ten top-ranking evaluation journals shows that people with intellectual and development disabilities were less likely to participate in evaluation processes than people with any other type of disability (Jacobson et al., 2012). Even if they do participate, their answers in most of the cases might be biased or incomplete (Ware, 2004) since they communicate differently than their peers or experience psychological barriers such as low self-esteem.

Conducting evaluation activities in venues with physical barriers or far from the beneficiaries’ houses can hinder the participation of people with a physical disability. Therefore, ineffective M&E planning and instruments could not only bias the results, but also could end up creating negative unintended consequences such as exclusion and disempowerment. However, even if considering the linguistic and cognitive heterogeneity, what are the best alternatives to engage PwDs in participatory evaluation processes? Is inclusive participatory evaluation more time consuming?

Lessons learned: How to overcome the obstacles?

From my experience working with women with disabilities in Nicaragua[1], when it comes to disability, there are no one-size-fits-all solutions. Nonetheless, there are low-cost alternatives that can improve the overall level of participation. Here are some things to keep in mind:

Learn about your target group. An overview of the type of disability and some social variables is crucial to balance participants in focus groups, disaggregate data by categories, and prepare in advance for special requirements (e.g. the use of a sign interpreter, ramps for wheelchairs). It is also key to better understand power dynamics within the group. For instance, women face more discrimination than men, even if they have the same disability.

Be flexible. PwDs have different limitations, but also different sets of skills. Take advantage of the preferred method of communication and be open about the methodology.  For instance, photographs have proven to be effective to communicate with participants with physical, hearing or development disabilities (Jurkowski, 2008). This is an example of an alternative that requires small adjustments and can be easily triangulated with other methods.

Listen. When in doubt, ask the participants what methodology makes them feel more comfortable. Participation is also about listening and learning from others, and PwDs hold the key to understanding what suits them best.

Create capacities. Strengthen the M&E capacity of disability organizations. This will help to develop the organizations and build and share bi-directional knowledge. As a development practitioner, also invest some time educating yourself more about disability. For instance, learn some basic sign language to integrate yourself with people with hearing disabilities.

Be aware of trade-offs. Programs face time constraints, and full participation is not always feasible. Identify the phase of the evaluation that can be participatory and that can also have the most benefits for the participants. In the context of the COVID-19 pandemic, it is important to consider that digital tools might not be accessible to some PwDs. Therefore, outcome should be interpreted taking into account the selection bias.

PwDs are one of the most vulnerable groups according to the World Report on Disability; they experience higher rates of poverty and are more likely to be unemployed (World Health Organization, 2011). Thus, PwDs should have the opportunity to have a voice in the evaluation of programs and policies that impact their lives and communities.


References:

Brandon, P. R. (1998). Stakeholder participation for the purpose of helping ensure evaluation validity: Bridging the gap between collaborative and non-collaborative evaluations. American Journal of Evaluation, 19, 325–337.

Chambers, R. (1994). Participatory rural appraisal (PRA): Challenges, potentials and paradigm. World development, 22(10), 1437-1454.

Jacobson, M. R., Azzam, T., & Baez, J. G. (2013). The nature and frequency of inclusion of people with disabilities in program evaluation. American Journal of Evaluation, 34(1), 23-44.

Jurkowski, J. M. (2008). Photovoice as participatory action research tool for engaging people with intellectual disabilities in research and program development. Intellectual and developmental disabilities, 46(1), 1-11.

Olshanska, Z., van Doorn, J., & van Veen, S. C. (2016). My Story My Rights: how individual stories of people with disabilities can contribute to knowledge development for UNCRPD monitoring. Knowledge Management for Development Journal, 11(2), 43-62.

Parry, O., Gnich, W., & Platt, S. (2001). Principles in practice: reflections on a ‘postpositivist’ approach to evaluation research. Health Education Research, 16(2), 215-226.

Robinson, S., Fisher, K. R., & Strike, R. (2014). Participatory and inclusive approaches to disability program evaluation. Australian Social Work, 67(4), 495-508.

Shakespeare, T. (2006). The social model of disability. In L. J. Davis (Ed.), The disability studies reader (2nd ed., pp. 197–204). New York: Routledge.

Ware, J. (2004). Ascertaining the views of people with profound and multiple learning developmental disabilities. British Journal of Learning Disabilities, 32, 175–179.

World Health Organization. (2011). World report on disability. Malta: World Health Organization.


[1] The author worked as M&E officer in a project of empowerment of women with disability in Nicaragua from 2018 to 2019.


About the author:

Gersán Vásquez GutiérrezGersán Vásquez Gutiérrez is an economist and holds a master’s degree in governance and development. He works as an M&E officer in a regional irregular migration prevention program in Nicaragua. His main areas of interest are impact evaluation, migration, and local development.

 

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COVID-19 | How ‘COVID-19 hunger’ threatens the future of many by Jimena Pacheco

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As the COVID-19 pandemic progresses and lockdowns continue, even more people are suffering from hunger and malnutrition due to their inability to access nutritious food. The pandemic has revealed the importance not only of alleviating immediate hunger produced by the sudden loss of movement and restrictions to economic activity, but also the longer-term effects of a lack of nutrition arising from the inability to access or pay for nutritious food during the pandemic. Children are particularly vulnerable: the lack of an adequate diet can lead to persistent losses in health, education and productivity that can have lasting effects. The after-effects of the pandemic could be more severe than its immediate effects, writes Jimena Pacheco.


The Food and Agriculture Organization (FAO) estimates that the COVID-19 crisis will expose 265 million people to the threat of severe hunger. The effects of the increase of hunger worldwide could be more catastrophic than the virus itself on the long run. Hence, it is of the utmost importance to implement policies that fight the pandemic from a holistic and intertemporal perspective, including the challenges presented by the accompanying hunger crisis.

According to the IMF, the global economy will suffer a downturn of -3% in 2020, pushing 200 million people out of employment.[1] In addition, millions of self-employed and informal workers will suffer from the abrupt interruption of their income flows brought about by illness or measures to curb virus transmission, including total lockdowns that prevent the normal circulation of people, goods, and services. In addition to the contraction of household income, the prices of cereals and other foodstuffs have increased as a result of trade barriers and difficulties transporting goods due to the lockdowns. As a consequence, we observe a deterioration in the nutrient intake of the population.[2]

Both the quantity and quality of calories are affected. The disruption in food markets has decreased access to vegetables, fruits, and proteins. These food products are labour intensive and need good storage and good distribution logistics, all of which have been affected by the COVID-19 crisis. In addition to supply shortages[3], the mobility restrictions and volatility of the price of quality food products, as well as sudden income cuts, have pushed households to consume more perishable, cheaper, and less nutritious foods.[4]

But not only the direct effects of interrupted distribution chains are visible in the nutrient intake patterns of the poorest populations. The most vulnerable populations usually live in resource-poor countries with weak fiscal finances, tight health budgets, and high debts. The coronavirus crisis has led these countries to reallocate resources to fight the pandemic, leading to the neglect or interruption of state-driven food programs. Children who were able to receive a square meal at schools can no longer do so, and food- and cash-transfer programs have also been interrupted. The WFP estimates that the school closures and mobility restrictions have prevented 368 million children from receiving meals through school food programs worldwide—a devastating observation. While some countries have ensured that children remain fed, there are no data available on the coverage and quality of those alternative solutions.[5]

Poor childhood nutrition has lasting effects

It is not only the immediate hunger caused by the COVID-19 crisis that is worrisome. The insufficient intake of nutrients during childhood increases vulnerability to infectious diseases, and starvation leads to premature death. Those children who survive are likely to face the lifelong impacts of malnutrition. Malnutrition during childhood generates changes in an individual’s metabolism to save energy. Furthermore, women who have suffered starvation during childhood are shorter and have a higher probability of giving birth to babies with a low birth weight. Besides, children who did not have sufficient nutrients during childhood perform worse in school and are less productive as adults. All these mechanisms that are being fed by coronavirus responses will generate long-term impacts that are likely to persist for more than one generation if we do not counteract the ‘COVID hunger’ now.

The way forward: immediate action and long-term monitoring

The need for timely and adequate policies to prevent hunger and starvation is pressing. Bodies such as the FAO and WFP have suggested a number of measures that can be implemented to combat immediate hunger and a longer-term lack of adequate nutrition linked to economic losses and poverty. These include:

  • Installing emergency cash transfers that smooth the income shocks of the vulnerable households
  • Assuring the correct functioning of food markets by decreasing barriers for food trade
  • Improving dietary quality, among others, by assuring the access to vegetables, fruits, and meat at affordable prices in local markets, or increasing the quantity and quality of school meals
  • Supporting maternal services by strengthening public health services, especially regarding the access to nutrition supplements
  • Promoting homestead food production.

However, the implementation of these recommendations does not seem feasible in countries that are resource strapped and already fail to invest in quality nutrition, healthcare, and food-producing agriculture.[6] We need commitment from governments and international organizations to allocate enough resources to fight hunger today in order to avoid future costs for society. Furthermore, we have to assure that the response to the ‘COVID-19 hunger’ and the monitoring of its effects persist long after the pandemic has ended.


Acknowledgments: I am grateful to Natascha Wagner for her thoughtful feedback on an earlier draft of this post.


[1] Also see https://www.ilo.org/wcmsp5/groups/public/—dgreports/—dcomm/documents/briefingnote/wcms_740877.pdf
[2] The situation is especially difficult in urban areas, where households are unable to smooth the consumption shock through household-level food production.
[3] There are even more channels that contribute to rising hunger and lack of food supplies—the pandemic stopped the movement of migrant workers involved in harvesting activities, resulting in a loss of production for many farmers because of a lack of workers to pick vegetables.
[4] Nutritious food can be 10 times more expensive than basic calories as a result of COVID-19.
[5] For example, in Madrid, the municipality controversially signed a contract with a fast-food provider to cover the meals for vulnerable children. Health institutions and families have raised complaints about the nutritional quality of these meals that the children received for almost two months. See https://elpais.com/espana/madrid/2020-05-03/las-pizzas-de-ayuso-y-algunos-kilos-de-mas.html [in Spanish].
[6] World Bank data show that on average around 7% of a country’s GDP is dedicated to healthcare. For OECD countries it reaches 10%, while it is under 5% in Latin America and Southeast Asia. In the least-developed countries, the expenditure in healthcare is as low as 1% of a country’s GDP. See https://data.worldbank.org/indicator/SH.XPD.GHED.GD.ZS.
Title Image Credit: Jimena Pacheco

This article is part of a series about the coronavirus crisis. Read all articles of this series here.


Jimena PachecoAbout the authors:

Jimena Pacheco is a development economics Ph.D. candidate at the ISS. Her research interests rely in development, health and education economics. Currently, she is working in the impact of negative shocks -economic and natural crisis- in human capital formation in Ecuador and Spain as main cases.