“Nothing about us, without us!”: Disability inclusion in community-based climate resilient programs. A case study of Indonesia

In design of climate-resilient programs for community development, there is growing awareness of the benefits of gender assessments, but it is far less common that disability is considered. The meaningful inclusion of people with disabilities can reveal their knowledge and capacities to contribute, and result in more contextualised and socially-just responses to climate change.

Caption: Plan Indonesia and PERSANI staff in hybrid workshop to provide recommendations for the Guidance on assessments for climate-resilient inclusive WASH. Photo credit: Silvia Landa, Plan Indonesia (2020)

Climate change poses huge challenges for the wellbeing of individuals and communities, especially those reliant on their local environments for subsistence. As the latest Intergovernmental Panel on Climate Change 2021 report demonstrates, we are experiencing changes to our climate at an unprecedented scale and intensity. There is growing awareness that the impacts of climate change are not merely biophysical, but embedded in social processes. To varying degrees of success, non-governmental organisations and local governments are mainstreaming climate resilience in their community development programs. In designing programs, it is important to involve diverse community members in assessing climate change impacts and finding solutions, including those who are often marginalised.

The catch-cry of disability rights organisations of “nothing about us, without us” draws attention that all people have the right to self-determination and to have a say in development outcomes and policy that affects them. This blog provides three arguments for inclusion of people with disabilities in community-based climate-resilient programs, with a case example from Indonesia.

Improving community sanitation in Manggarai district, Indonesia

Together with Yayasan Plan International Indonesia (Plan Indonesia), Institute for Sustainable Futures – University of Technology Sydney (ISF-UTS) conducted a research-practice project to collaboratively inform how Plan Indonesia addresses the impacts of climate change on their inclusive sanitation program. In 2019, ISF-UTS and Plan Indonesia co-designed and trialled seven participatory methods/activities to assess how climate change affects water, sanitation and hygiene (WASH) services, and gender and social inclusion outcomes.

All activities considered inclusion of marginalised groups and people with disabilities, but the assessment of climate impacts on sanitation accessibility was most specific in addressing disability inclusion. Adapted from the WaterAid “How to conduct a WASH accessibility and safety audit” guide, this activity identifies: barriers that currently affect sanitation accessibility; how climate extremes can potentially worsen and create new barriers; and how the community and local government can help people overcome barriers.

The activity was piloted in Manggarai district in the central part of Flores Island, Indonesia. In recent times there has been increasing intensity of rainfall, causing landslides, floods, and soil erosion. Increasing seasonal variability, longer dry spells, and more extreme weather events were also noticed by villagers, and have been in line with climate change projections for the region. The case shared below shows three benefits of inclusion of people with disabilities in climate change assessment for inclusive WASH programming.

First, people with disabilities are likely to experience climate change impacts most severely. Their vulnerability to climate change is linked to multiple disadvantages they experience. For example, people with disabilities globally are disproportionately represented among the poor, have higher levels of unmet health needs, and are twice as likely to be unemployed. Due to these differentiated impacts, their voices are critical for identifying the issues so they can be addressed. For example, in Manggarai, we met with a young woman, with a physical disability, who told us about accessibility issues with the lack of ramp and handrails at the public toilet. To access the toilet, people needed to step across a drain, which fills and overflows during heavy rain.

Second, people with disabilities are routinely excluded from education, jobs, leadership roles, and often denied the opportunity to contribute to public forums. Through including people living with disabilities in community decision-making on climate-resilient programs, they have an experience of being treated with dignity and respect. Through meaningful participation, there may be growing awareness of the actual capacities and contributions of people with disabilities to their community. This helps to shift their position and perception from being an aid beneficiary, to an agent driving their own development, with perspectives worthy of inclusion.

As a result of the inclusive design of the participatory activities, people with disabilities in Manggarai joined the assessments, and other participants created space for them to voice their concerns. In one village forum, an elderly man with disabilities was vocal in requesting assistance from government. A Plan Indonesia team member reported, “we talked about how people with disabilities can have a voice and be heard, using Pertuni (disability people’s organisation) as an example. We want to try changing thinking about people with disabilities as charity recipients, so they can also be empowered and involved in the community”.

Third, drawing on information gathered from a diverse range of community members of different ages, genders, ability levels, and occupations can inform new pathways forward for surviving well in the face of climate change, and possibly positive transformation. This approach pays attention to contextualised and place-based knowledge on the changing environment. Inclusive programs are more likely to be effective, sustainable, and align better with the values of communities.

The community assessment revealed the difficulty of accessing sanitation facilities in challenging weather conditions, such as heavy rain and drought. Learning about experiences of people with disabilities and their carers could then be used to help identify solutions that could be implemented by the community or the government. For example, in all villages, community members suggested using collective funds and labour to build toilets, and provide support to facilitate equal access to water and sanitation for people with disabilities.

Benefits of disability inclusion

Through this case study of a WASH program in Indonesia, we can see the benefits of people with disabilities participating in climate-resilient development programming. Representation of people with disabilities can contribute to a breakdown in negative stereotypes and misconceptions of their capacities. The meaningful inclusion of diverse perspectives ensures a nuanced and contextualised program that benefits all community members with an inclusive outcome.

Although the empowerment and leadership of people living with disabilities is critical in responding to climate change, external assistance is also needed. With the perspectives and needs of people with disabilities in mind, development actors can work alongside disabled people’s organisations, and provide more targeted support for climate change resilience and adaptation.

Opinions expressed in Bliss posts reflect solely the views of the author of the post in question.

About the authors:

Tamara Megaw is an ISS alumnus who graduated in 2015 from the MA program in Social Policy for Development. After graduating, she worked in global education at Nuffic NESO Indonesia and then consulted for Transnational Institute. Since late 2017, she has worked at the Institute for Sustainable Futures, University for Technology Sydney (ISF-UTS) on research related to development effectiveness, gender equality and social inclusion.

Anna Gero is a Research Principal at ISF-UTS. Anna is a climate change and disaster resilience leader and specialist with over 13 years’ experience in the Asia-Pacific region.

Dr Jeremy Kohlitz is a Water, Sanitation and Hygiene (WASH) researcher at ISF-UTS with interests in climate change impacts on equitable WASH service delivery in the Asia-Pacific region.

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  • Anonymous
    February 23, 2022

    I read this piece again and again and again. All the efforts available in the case to present a better survival for the disables are highly appreciated. I mean it. And I pay much attention to the third: ” third, drawing on….”. I just wonder how the information being gathered, from who( can it be gathered from specialists living outside that community but have a thorough understanding? How to find them? Would it be from the disables?… “. As far as my experience runs its course, when something is laid upon everyone’s shoulder, it means there is not enough attention to the issue. Pardon me if I write something against your view.

    • Tamara Megaw
      September 14, 2022

      Thanks for reading and engaging with our blog. We are arguing for community assessment so that more diverse members of the community are involved with decision-making. This does not mean that all members are equally responsible for climate responses, in fact those with more resources and capacity should do more.

  • Yohanes Mariano Dangku
    February 17, 2022

    I appreciate for attending our disabilities people in our district, Manggarai, Indonesia. Specially about climate change issue, in my eyes many people in our district face it only as a taken for granted fact. We hope our district government to care on the issue and care on our disabilities people also, empowering them, treat them with empowerment not only by charity beneficiary act. Thanks for presenting the issu to open our eyes. God bless you all, Mega, Gero and Kohlizt.

    • Anonymous
      September 14, 2022

      Thanks Yohanes. We hope that government, civil society and researchers can continue to work together for inclusive climate resilience.

  • Joyce Matara
    February 15, 2022

    I enjoyed reading the article and I am of the opinion that disability inclusion should be a part of every programme, activity, planning and monitoring and evaluation. The problem is persons with disabilities are hardly found in decision making positions hence they are easily forgotten when decisions are being made. It’s even worse for women with disabilities who have to face an intersection of disadvantages hence even the inclusion efforts have to give special attention to this target group.

    • Tamara Megaw
      September 14, 2022

      Thanks Joyce, you make two very good points about disability mainstreaming and that we need to pay attention to the intersection of disadvantages that women with disabilities face.