People with disabilities need to be front and centre of decision-making in WASH

Participants at the Inclusive COVID-19 Response Action Forum in Santo, Vanuatu, facilitated by Water for Women partner World Vision Vanuatu in 2020. Photo: Adorina Massing / World Vision Vanuatu

Water for Women is transforming systems and services so the voices of people with disabilities are heard

by Aleisha Carroll, Manager, Inclusion Advisory Group, an initiative of CBM Global Disability Inclusion, based at CBM Australia

On International Day of Persons with Disabilities we recognise that the participation and leadership of people with disabilities is central to an inclusive, accessible and sustainable post-COVID-19 world. A world where people with disabilities, alongside those without disabilities, are able to reach their full potential and exercise their rights to access water, sanitation and hygiene (WASH). People with disabilities make up one billion people globally, 80 percent of who live in developing countries. At Water for Women, we are committed to designing and delivering WASH programs and research that leave no one behind.

Disasters and emergencies further exacerbate barriers and leave people with disabilities further behind.

COVID-19 has increased prejudice towards people with disabilities and worsened economic and health outcomes for them.

That’s why Water for Women projects work to ensure that people with disabilities are included in planning for WASH services and products. These efforts started before the onset of the pandemic and have become even more importance since. When we include people with disabilities in WASH decision making at all levels – households, communities, organisations, and institutions – we ensure infrastructure, services and products are inclusive and accessible to everyone.

Supporting the leadership of people with disabilities, particularly women and girls with disabilities, is a central focus of World Vision Vanuatu’s WASH program. At the onset of the pandemic, they facilitated an Inclusive COVID-19 Response Action planning forum, which enabled people with disabilities to share their experiences and influence individual and community-based action plans at each alert level phase of the National COVID-19 Action Plan – this forum was the first of its kind bringing national level planning to organisations of people with disabilities (OPDs) in outer islands. 

People with disabilities continue to report that the single largest barrier to realising their rights is the negative attitudes of others. Water for Women projects are actively changing the way society thinks about disability, transforming attitudes and social norms that exclude people with disabilities in the first place.

For example, SNV is working with Lao Disabled People’s Association to address negative perceptions of disability in communities and institutions in Lao PDR. As a result, village leaders and governments increasingly recognise that people with disabilities cannot be forgotten and are a key group to engage with. People with disabilities are now being specifically invited to WASH-related events. Attendance of people with disabilities at community meetings has increased, and they have reported that authorities are giving more importance to their needs and interests and are actively encouraging them to participate.

“In the past, people in the community as well as district government do not give importance to people with disabilities but currently people understand and give an opportunity for people with disabilities to stand up and participate and encourage them to go out and participate in the meeting.” Local authority representative, Champhone District, Lao PDR.

As a result, people with disabilities are experiencing immediate positive impacts, including increased respect and better access to safe and dignified sanitation:

“I am very happy that I do not have to go to the forest anymore. Now I can go to the toilet anytime I need. It is so convenient. I am very thankful to the village authorities and the youth union for their support. Without their support, I may never have a toilet of my own”. 62-year-old woman with vision impairment, Champhone District, Lao PDR.

Despite these achievements, challenges remain. Enabling people with disabilities to have the confidence and resources to have voice requires redressing historical exclusion from community decision making processes, education and livelihood opportunities. Plan Indonesia, through their Water for Women project, is using Participatory Action Research methods to counter this challenge – supporting people with disabilities in identifying the barriers they face and importantly, in the solutions to overcoming those barriers. This is done by ensuring their engagement activities are delivered using a range of modalities that allow them to be accessible to all and by promoting reasonable accommodations such as transportation to support attendance. Coupled with training on leadership, people with disabilities are taking a meaningful role in shaping WASH services and products.

It’s common that children with disabilities are excluded from education and overlooked in WASH planning and leadership opportunities. So, both Plan Indonesia and WaterAid Timor-Leste have co-designed infrastructure with children with disabilities so they can influence the way that WASH is improved in school settings too.

Further, a lack of access to WASH has a disproportionate effect on the lives of women and girls with disabilities. That's why World Vision Bangladesh is supporting economic inclusion of women with disabilities through the establishment of local WASH value chain systems. Women with disabilities are participating as WASH entrepreneurs who sell hand hygiene and menstrual health and hygiene products in communities.

Selling door-to-door, in turn helps overcome some of the barriers women face in accessing products, improving their health and wellbeing. An important strategy for supporting the leadership of people with disabilities is through peer-to-peer support. World Vision Bangladesh and the Centre for Advocacy and Research (CFAR) in India are supporting disability peer support and carer support networks to meet together, collaborate and carry out activities they prioritise. WASH projects are supporting people with disabilities to better hold authorities to account on inclusive WASH services and products.

In Papua New Guinea, where there are few formal representative organisations of people with disabilities in rural and remote areas, WaterAid and World Vision have provided critical support to informal networks of people with disabilities to convene and register as organisations, giving greater strength to their voice at the local government levels.

"East Sepik Province Disabled Persons Association (ESPDA) was officially registered [as] a disability organisation, being the first district [DPO/OPD] in Papua New Guinea to be registered. This has already paid dividends with the group successfully securing funding from the Department of Community Development to undertake a disability baseline, to build the evidence on disability needs which can be used to inform government services and support.” Sharon Pondros, Gender and Social Inclusion Officer, WaterAid PNG.

Key to sustainability is ensuring that disability-inclusion is entrenched in institutional policies and processes and considered in resources and budgets. SNV Nepal has delivered training on inclusion and helped build relationships between authorities and disability networks, leading to the establishment of Local (Rural Municipality) level disability helpdesks that provide counselling and WASH referral services for persons with disabilities, including menstrual hygiene management. With technical support through the project, the Rural Municipalities have assigned focal persons to these helpdesks, including representatives from the local networks of people with disabilities, to ensure persons with disabilities are provided appropriate support.

Increasingly, WASH actors are recognising the need to work in and outside WASH systems to create an enabling environment for people with disabilities to claim their rights to WASH. This often includes engaging with, and strengthening, fragmented social welfare and disability systems. For example, CFAR has been working to raise authorities’ awareness of gaps in social protection mechanisms that support WASH and developed a model that increases accessibility of provisions for people with disabilities. The model seeks to provide a single-entry point and support a coordinated approach across government departments. The ‘Single Window’ model is now being picked up for use by the social welfare sector.

“The process of facilitation by the Single Window should be taken from WASH services to other social protection schemes meant for disabled, transgender and vulnerable persons” - Ashok Bairwa, Deputy Director, Department of Social Justice and Empowerment, Jaipur, India.

COVID-19 has brought attention to the barriers people with disabilities face in accessing WASH services, including in government health and COVID-19 isolation facilities. By training local government technicians and supporting people with disabilities to join WASH committees, SNV Nepal has helped to improve WASH infrastructure in the health care facilities, including for their own staff with disabilities:

Ajay Kumar Shah, the Sub-in-charge of Parsa Health Care Facility, Sarlahi District, Nepal, who has a mobility impairment reported, “…no one could use the latrine during work hours. It was particularly tough for me to travel back home to use a latrine and I often could not concentrate on my work. Now I feel thankful that I can use the latrine on my own as the latrine is accessible, has water and sufficient space for my wheelchair. We are now also aware of the operation and management of the WASH facilities and will ensure they remain functional.” 

SNV Bhutan is also partnering with local OPDs including Ability Bhutan Society and the Disabled People’s Organisation of Bhutan. They provide OPD members, who work as disability champions within the WASH sector, with support to prepare for meetings with government stakeholders where they can give advice and recommendations based on their lived experience of disability and influence policy and strategy development and program implementation.

Learning is also a key focus of Water for Women projects. SNV Bhutan has engaged the Institute of Sustainable Futures -University of Technology Sydney, CBM Australia, and the Bhutan’s Ministry of Health to capture evidence on what works in strengthening transformative leadership on inclusive WASH for people with disabilities.  

When people with disabilities are at the table where decisions are made, and involved in the problem-solving process, the solutions better meet their needs. By challenging the status quo and ensuring that people with disabilities are viewed as valued members of communities, Water for Women is helping to transform society to be more inclusive, accessible and resilient for all.

CBM supports Water for Women partners to help improve the lives of people with disabilities across Asia and the Pacific.