He is married with two children and works hard to support his family, but Martial Ramartin has spent three decades fighting the stigma of his partial paralysis, left from a bout of measles when he was just four.
As a child, his parents treated him the same as his siblings, encouraging him to learn to walk again despite his paralysed left leg, and requiring him to help with the daily rhythm of life in rural Madagascar – lighting the morning fire, pounding rice to prepare it for meals, and fetching water from an open pond at the foot of the village.
As difficult as this task remains today – more than an hour’s journey roundtrip at his slowed pace and struggle to carry the heavy bucket – there is one thing he finds even harder.
‘I have learned to live with the injuring look of others,’ he told WaterAid researchers in a recent visit. ‘The most hurtful times were when I had to defecate. Sometimes, I felt and I actually saw once, some people hiding behind the bushes just to see how I managed it. So I had to hide myself when I went to defecate. Most of the time, I had to wait until it was quite dark, even though it was more difficult to move in the dark.’
Even as awareness around the importance of sanitation grows, such as through this spring’s UN campaign against open defecation, there is one point that is consistently missed.
So long as one person is still practising open defecation, the entire community will suffer. It isn’t enough to make general progress. We need to include everyone in design, in programming and in process.
Disabled people living in the developing world are often stigmatised because of their condition or even hidden away. What water, sanitation and hygiene (WASH) facilities may exist are usually inaccessible. People who are unable to walk a steep path to a water point, or who are unable to squat to use a basic latrine, are jeopardising their health and safety even more than someone who is able to perform these tasks.
During Stockholm World Water Week, WaterAid will present new research conducted with Loughborough University’s Water, Engineering and Development Centre and Leonard Cheshire Disability to understand the barriers disabled, older and chronically sick people face when accessing WASH and how those barriers can be addressed in Uganda and Zambia.
One billion people globally are estimated to have disabilities, according to the World Health Organisation and World Bank. Well over half of those – 740 million – are over 60 and an estimated 34 million people are living with AIDS.
And of the 2.5 billion people in the world without access to basic sanitation, there are believed to be tens or even hundreds of millions of them who are disabled.
The need is stark. People who cannot see and live without access to a basic toilet must either find a guide, or make their own way, walking, crawling through and often falling in human excrement. Someone who has impaired mobility – for instance, moving on all fours – will be left filthy by the effort. In communities where water is scarce or difficult to reach, they have no choice to remain that way, until someone is able to bring them water to wash with.
For Edisa Lucy Igali, a mother we worked with in Uganda, it meant no choice but to watch her daughter Joyce get fouled with faeces.
‘Before [we had the latrine] she had to dig on the ground. Sometimes her clothes got littered with faeces. Her hands used to be covered in faeces, as she used to cover it with her hands,’ Edisa told us.
It’s a serious health risk, and it’s degrading.
But it can be addressed. Our research covers simple, accessible WASH designs, ways to share information so everyone can access it; how to raise awareness about challenges different people face, how to involve everyone in the design of their own water points and latrines, and how to develop culturally appropriate solutions to barriers.
In Martial’s case the addition of a pit latrine has taken away his dreaded night time journeys, and work to make the latrine more accessible is underway. With WaterAid’s work on water and sanitation in his village, he has also become a volunteer community agent teaching others about the importance of safe water, use of basic toilets, and hygiene practices including handwashing.
‘Changing people’s behaviour is not an easy job as they have to change their mentality and their way of living and behaving,’ he said. ‘Having access to safe water, good sanitation and better hygiene is so important because these things change people’s lives. My role is going to change the way that people think about disability and their attitudes. They listen to me now when I talk to them and they respect me more now.’
The cost of making water points, handwashing facilities and latrines accessible can be minimal. But the cost of not doing so is infinitely more. The World Bank acknowledges the costs of social exclusion, and sees it as a vital element of building shared prosperity for all.
Giving someone a way to keep themselves clean, easy access to drinking water and a basic toilet opens the door to better health, the ability to better participate in a community and the basic dignity that every human being is entitled to.
Jane Wilbur is Equity, Inclusion and Rights Advisor at WaterAid.
If you are interested in disability and inclusion in WASH, you might like to read Frontiers 3: Disability-making CLTS fully inclusive