Musa Zulu – published author, award-winning artist and disability activist – shares how a lack of water and sanitation facilities is often a life and death situation for disabled persons.

“During the 27 years that I have spent in a wheelchair, 10 of my close friends and associates with disabilities have died. Three of them committed suicide and seven of them died from pressure sores that became septic due to lack of clean water and sanitation facilities. The three that killed themselves had lost all hope, but my heart will never stop aching for the seven who lost their young lives still holding on to hope for clean, accessible water and sanitised environments, where they could tend to their wounds without fear of further infection. They died holding on to that hope for a better life promised to them by a new dispensation,” says Zulu.

The South African Human Rights Commission states: “The right to water and sanitation services is linked to the rights to life, dignity, health, housing, food, education, physical security, gender equality, and the prohibition against discrimination – that lack of access to water and sanitation has many negative impacts.” In addition, the right to clean water was implicitly confirmed in the Protocol on Water and Health at the 1992 Convention on the Protection and Use of Trans-boundary Watercourses and International Lakes. Article 5 (l) of the Protocol states: “Equitable access to water, adequate in terms both of quantity and of quality, should be provided for all members of the population, especially those who suffer a disadvantage or social exclusion.”

However, 28 years after the advent of democracy, there is a divide between progressive policy statements and people’s realities. Despite the Constitution promising equality and the protection of human rights, most people with disabilities still live in exclusion and open squalor, as opposed to their able-bodied counterparts.

Research studies in developing countries, including South Africa, indicate that persons with disabilities are still less likely to live in households with access to improved water and sanitation, and further less likely to live in a dwelling with hygiene and sanitation facilities on the premises – the fact is, they are faced with inaccessible pit latrines and water sources with steep steps at the entrance, narrow doorways and unstable construction without handles or rails.

In most public spaces and private domains, persons with disabilities (in particular those with mobility challenges) endure the lack of access as a barrier often impossible or dangerous to overcome. This lack of access means that hygiene, self-navigation, socio-economic as well as leisure participation are limited or non-existent for these members of society. The situation is even more dire in townships, rural areas and inside the sprawling shack settlements where even the last line of human decency and privacy is lost.

“I have lost count of how many persons I have visited over the years during their early days of disability. But I will never forget the haunted look in their eyes as they told me of the one crippling fear that, when the day finally comes for their discharge from those rehabilitation institutions, they will be returning to a daunting challenge of their private and community settings where access, particularly to a toilet facility, is non-existent. How could they not be scared when evidence from a number of developing countries indicates that more than one in seven persons with disabilities finds the toilet at home hindering or not accessible. The ugly realities of non-inclusion in our society need addressing urgently – we need to understand the reality to offer pragmatic and practical solutions,” adds Zulu.

How water and sanitation should be

There are a number of actions to be considered to address the poor environment people with disabilities live in:

• Mainstreaming – incorporate accessibility into the planning and design of all water sanitation and hygiene (WASH) facilities. Disability audits in public and private spaces must be carried out to improve, or construct, accessible toilet facilities to enhance access. The whole chain of design should be considered – from accessible hallways/pathways to adapted toilet facilities that allow the independence (and privacy) of a disabled individual.
• Knowledge management – building the capacity of water and sanitation practitioners’ holistic understanding of disability-related needs and accessibility matters, and encouraging them to consult with persons with disabilities in the processes of executing their development mandate.
• Inclusion – the participationof persons with disabilities in the planning, design, operations and maintenance of water and sanitation projects. People with disabilities should form part of Community Water and Sanitation Councils (CWSCs). CWSC membership should be upskilled to qualify as future local WASH practitioners who can come back to their communities to design and adapt water/sanitation facilities and systems to meet appropriate and sustainable disability standards.
• Employment of people with disabilities – water and sanitation sector stakeholders (government, private sector and civil society) must shift away from merely focusing on the need to employ 2% of their staff with disabilities but rather ensure that the voices of those still excluded are heard, involve persons with disabilities in the conceptualisation and implementation of inclusive systems, build practitioner capacity, and address the physical, institutional and social barriers that persons with disabilities are facing in accessing WASH facilities in their communities.

“Spatial apartheid has entrenched the deliberate act of putting marginalised people in remote areas that make access to economic, social and educational opportunities difficult. This scarcity of resources means that these areas had been unable to invest in a wide range of road safety, WASH, education and enforcement measures that had proven successful in developed areas. Accessible water and sanitation infrastructure is crucial for going to school, holding down a job and participating in the community for all persons across the spectrum, including that of disability. Creating accessible infrastructure isn’t just the right thing to do – it makes economic sense as well. That’s because it benefits not only persons with disabilities, but also family members who take care of them, freeing up their time and resources to carry out productive activities,” concludes Zulu.