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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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EADI/ISS Series | Resource Grabbing in a Changing Environment

By Adwoa Yeboah Gyapong, Amod Shah, Corinne Lamain, Elyse Mills, Natacha Bruna, Sergio Coronado and Yukari Sekine

We are living in an era where people’s daily lives are deeply intertwined with the impacts of global markets and the threats of climate change. Even good intentions for mitigating and adapting to climate change can jeopardise natural resources and rural livelihoods. Examples from Mozambique, Colombia, and the Eastern Himalayas show how local communities affected by resource grabbing engage in both overt and covert responses against dispossession and exploitation.


We are living in an era where people’s daily lives are deeply intertwined with the impacts of global markets and the threats of climate change. Even good intentions for mitigating and adapting to climate change can jeopardise natural resources and rural livelihoods. These seemingly abstract issues are becoming increasingly clear through both research and the role of the media, sparking questions such as: How do attempts to address climate change prevent farmers from working their lands, or negatively affect the livelihoods of forest users? Why are fishers organising themselves to resist interventions intended to protect marine areas? How do human rights groups and indigenous communities resist the state and powerful companies despite civil society space being increasingly limited?

The rapid rise in the scale and scope of the commodification and exploitation of natural resources can be linked to four broad, interlinked drivers: the expansion of the industrial food system; increasing privatisation of the commons; changes in governance mechanisms; and the growing prominence of climate mitigation and adaptation responses. Both local and global issues shape and complicate the dynamics of contemporary resource grabbing, many of which are still not fully understood – and will be explored further in our workshop on  “Resource grabbing: impacts and responses in an era of climate change” at the EADI/ISS General Conference 2020.

The social and environmental impacts of resource grabbing

Resource grabbing impacts can include limited access to resources, insecure livelihoods, diminishing ecological sustainability, and restricted participation and political incorporation, all of which are embedded in broader power dynamics. In some cases, governance instruments (e.g. labour laws) can further exacerbate the impacts of resource grabbing. Four examples illustrate these diverse impacts.

Conservation in global fisheries

Small-scale fishers globally are facing an overlap of existing and newer processes of exclusion. Existing forms of exclusion caused by industrialisation and privatisation in fisheries have more recently overlapped with exclusionary processes stemming from climate change mitigation and adaptation initiatives. Prominent examples include the increasing establishment of Marine Protected Areas (MPAs) and blue carbon initiatives, which are presented as approaches to conserve and protect marine ecosystems. Such initiatives are often established close to the shallow coastal domains of small-scale fishers and involve the banning of fishing activities, leaving them with limited access to fisheries resources, territories and markets to sustain their livelihoods.

Climate funds in Mozambique

With 25% of its territory designated as conservation areas, Mozambique is the third-largest recipient of climate funds in Sub-Saharan Africa, having received approximately US$ 147.3 million in 2016. Most of these funds are directed to land-based conservation and climate change mitigation and adaptation projects. The Gilé National Reserve, a decade-old REDD+ project, combines such policies with the implementation of Climate-Smart Agriculture (CSA) in the reserve’s buffer zone. This has limited rural livelihood strategies and local people’s control over land and decision-making processes, due to restrictions placed on fishing, hunting, cattle rearing and gathering forest resources (e.g. charcoal, medicinal plants).

Mining in Colombia

Since the 2008 commodity-boom, open-pit coal mining in the Colombian Caribbean region of La Guajira has expanded rapidly, leading to intensified land and environmental conflicts between mining companies, the state, and the affected communities. Land previously used for agriculture and grazing livestock is no longer accessible. Both the landscape and the local economy are now dominated by mining, which has consumed more than 12,000 hectares of land and displaced 16 local villages.

Hydropower dams in the Eastern Himalayas 

In the Eastern Himalayas (North-East India and Nepal), numerous hydropower dams are being planned or are already being constructed. Many of these are funded through the Clean Development Mechanism (CDM), an internationally developed climate finance initiative aiming to stimulate the development of renewable energies. However, evidence suggests that dams contribute significantly to greenhouse gas emissions through the creation of reservoirs and changes in land-use. Large dams particularly disturb ecological systems, upstream and downstream river flows, and limit people’s access to riverside lands.

Political responses generated by resource grabs

Local people and communities affected by resource grabbing engage in both overt and covert responses against dispossession and exploitation. Overt responses include formal, organised actions, often by social movements. In contrast, covert responses may include everyday acts of resistance and adaptation through different livelihood strategies, such as migration or incorporation into projects. The dynamics of such political responses have implications for solidarity with and building alliances between affected groups, particularly those seeking social and environmental justice. Three examples illustrate these diverse responses.

Using legal tools in India and Colombia

Indigenous communities facing displacement stemming from hydropower and mining in India have effectively stalled land acquisition processes through court action.  These rulings have enforced existing laws mandating their prior consultation and consent. Similarly, in Colombia, more than ten popular consultation processes have been carried out at the provincial level since 2010. In each of them, large numbers of local people voted against the installation and expansion of mining or oil extraction projects. Legal battles have also taken place between companies, the state, and human rights defenders over the implementation of consultation results.

Scaling-up ‘agrarian climate justice’ struggles in Myanmar

The recent re-emergence of overt, organised resistance related to land, environment and climate mitigation issues in Myanmar has ranged from advocacy aiming to influence national-level land laws and policies that facilitate privatisation and concentration, to more localised resistance against large-scale oil palm concessions, mines and forest conservation initiatives that exclude small-scale farmers and forest users. Scaling up across struggles for agrarian climate justice has become imperative to counter elite power at national and regional levels. However, it sometimes triggers external threats, like repression, and ‘divide-and-rule’ strategies from above. Fault-lines within movements may also emerge, particularly due to competing political tendencies and legacies of ethnic conflicts.

Everyday strategies in Ghana

Farmworkers on an oil palm plantation in Ghana have engaged in covert strategies such as absenteeism, non-compliance to rules, and continuous production to resist exploitation. Workers on farms near the plantation occasionally use company vehicles on their own farms, while they absent themselves from plantation work. Casual workers use various tactics to obtain paid medical leave, while others do shoddy work, knowing there are few monitoring supervisors.  Through these everyday individual responses, workers can maintain a small supply of staple foods (e.g. corn and cassava), earn extra income, and rest.  However, their everyday actions also restrict their upward workplace mobility, such as moving from casual to permanent contracts, and productive autonomy on their own farms in terms of scale and crop choices.


This article is part of a series launched by the EADI (European Association of Development Research and Training Institutes) and the ISS in preparation for the 2020 EADI/ISS General Conference “Solidarity, Peace and Social Justice”. It was also published on the EADI blog.

About the authors:

Adwoa Yeboah Gyapong, Amod Shah, Corinne Lamain, Elyse Mills, Natacha Bruna, Sergio Coronado and Yukari Sekine are all PhD researchers in the Political Ecology research group at the International Institute of Social Studies (ISS).


Image Credit: Maarten van den Heuvel on Unsplash

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