Two factors drive people with disabilities: a greater need to WASH services and a limited access to WASH facilities. During the World Water Week (WWW) it was recognised that what the WASH sector has been doing to make WASH disability-inclusive hasn't been enough. How can the WASH sector better respond to the needs of people with disabilities? This post presents some of the main discussions on WASH and disability held in Stockholm during the WWW conference.

(This is the front cover of the World Water Week 2019 programme which main theme was - not only on water - but also on WASH inclusiveness.)

Ensuring services and budget allocations for people with disabilities within policies

During the conference it was mentioned that people with disabilities should be given space to know what their needs are - and also to express them. WASH proposals need to include matters on disability and donors need to work closer to people with disabilities. It was also discussed that the WASH sector should understand the different disability perspectives and budget according to the needs. More guides and checklists should be made available to help governments know how to develop inclusive budgets. Attention was also paid to the fact that inclusive WASH services and budgets should start at home.

Safia Nalule Juko, Ugandan National Female Member of Parliament representing people living with disabilities, talked about the importance of moving from words to actions. She mentioned the need to know first how disabilities are defined to better know the population and to better map where people with disabilities are. She also pointed out that government, development actors and people with disabilities should work together in the planning and implementing process. In order to have an inclusive WASH, Safia highlighted the importance of people with disabilities having political representation, economic empowerment (such as conditional funding and fostering the use of local materials to build adaptive WASH technologies) and taking WASH services closer to where people with disabilities are. I will also raise here the concern of having micro-financing options and joint-community resources that target and include people with disabilities and leverage government funds - this was not mentioned during the WWW but might be something to think further about.

Monitoring that WASH technologies are friendly to people with disabilities

The last mile is a challenge as the invisibility of people makes it difficult to identify them and make sure they have access to WASH technologies. It was discussed that government leadership should be inspired so the government is the one that first goes out to find and support people living with disabilities. It was also raised the importance of giving special attention to women and girls with disabilities. Today gender roles need extra support, and there is a compelling need to have more quality data on gender issues and disability.

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(Pictures from the session 'MHM: Health and dignity for all' and WaterAid Nepal/LSHTM interactive MHM materials for girls with intellectual disabilities.)

In 2016, the Swachh Bharat mission in India didn't have inclusive WASH interventions and households with different able members have been excluded from the campaign. WaterAid India developed a guideline on inclusive WASH but had to engage actors at the government level to get everyone on board. As mentioned by V.K. Madhavan, Chief Executive from WaterAid India, the government had to be willing to invest capital and at the same time be willing to identify the households with people with disabilities. The Indian Government agreed to state a policy on inclusive WASH but after that it was time to focus on other questions and challenges: How much is going to cost a WASH facility according to the disability? How to retrofit latrines if having a disability? How to make sure every school has inclusive toilets for children with special needs? The WASH sector needs to make sure there are masons willing to retrofit and families also willing to do the retrofitting, there is also the need to focus more on designs and the distance to the WASH facilities. Disability forums and regional campaigns have served to the purpose of discussing and monitoring how to overcome these challenges.

Making sure that people with disabilities are heard

Melaku Tekle, Executive Director from the Ethiopian Center for Disability and Development (ECDD), has been working to generate inclusion in the Ethiopian health sector. Prejudice and misconceptions have resulted in people with disabilities being left behind in the Ethiopian WASH service delivery. Poverty is a main characteristic of disability, and social and communication barriers have been the main ones to overcome in order to achieve sustained inclusion. As mentioned by Melaku, there is a compelling need to maintain data at the household level to understand the situation and the needs of people with disabilities, and to design disability-inclusive action. During the past few years, ECDD has designed a disability inclusion guideline for people with disabilities with the aim of bringing inclusiveness to planning, targeting, implementing and monitoring processes.

It was also recalled the need to engage more actors in the interventions, but not necessarily in a coordinated manner. Short interventions not embedded in other activities can sometimes be more functional as well as the sensitisation across different actors. Ina Akerberg, Swedish Disable Peoples Organisation representative, mentioned that, for two years, disability organisations had met outside the Swedish congress to give a voice and face to the request of having a special law that recognised their rights and needs. Currently, Swedish companies have to be inclusive; otherwise the government can take legal actions against them.

Raising awareness not to consider disability a last mile issue

During the conference it was also highlighted that taboos around disability need to be overcome worldwide. It is necessary to reach out to people with disabilities, get statistics and data, know about government processes and budgeting, improve capacity and have more people with disabilities supporting advocacy. It was also underlined the importance of being present where decisions are made, to engage with the right people in government (with the right evidence and a call for action), and to provide technical support to government guidelines and manuals for the inclusion of people with disabilities. Most of all, it drew attention to the fact that inclusion should be made the norm.

Key takeaways from the conference

• There is a compelling need to have more data, know where people with disabilities are and make sure information is systematised.
• Create awareness about the importance of WASH for people living with disabilities - and work also for a more inclusive social media.
• Consider the different disability perspectives, and also the different intersectionalities such as gender and disability.
• Amplify voices and consult people with disabilities during the design processes.
• Partner with disability rights organisations.
• Make a case for action. We need to act with urgency as, as mentioned by Safia Nalule Juko, WASH and disability are a matter of life and survival. We should all commit to a more inclusive WASH where disabilities are fully taken into account.
• Disability shouldn't be considered a last mile issue. Disability should be included in every step and in every part of the sanitation ladder.

This blog post was written by Independent WASH consultant Florencia Rieiro.