In South Africa, the reality for most children with disabilities is that they live at or below the national poverty line. This double jeopardy – being poor and having a disability – often spirals families into a cycle of compounded marginalisation, from which, escape requires intervention towards poverty reduction and disability inclusion.
Living in poverty is extremely difficult, restricting access to everything ranging from housing, travel, food, healthcare and education. For those who have a disability, these challenges are further compounded by a number of factors that mainstream society is generally unaware of. This is compounded marginalisation. Living on the periphery of society and being excluded from many opportunities, services and facilities that are available in mainstream society are exacerbated when people are poor and have a disability.
The cost of being poor and having a disability
Take, for example, children who need the use of a wheelchair. Being dependent on a wheelchair requires access to customised toilets and showers, but, as a result of living ‘below the breadline’, their accommodation doesn’t even have basic ablution facilities available. Trying to use any type of public transport is an ongoing struggle: taxis are often reluctant to transport these children since help is required for loading them in, plus there’s an extra charge for the wheelchair taking up space. For care-givers who have to count every penny, this is a financial burden. The redressing of this marginalisation is a primary function of organisations such as the National Council of & for Persons with Disabilities (NCPD).
“It costs families or care-givers money to travel to rehabilitation sessions, while those in rural communities can see occupational or physiotherapists in clinics only once a month – if they are lucky. These children often do not have access to mainstream day care facilities or schools, relying on community-based and volunteer-driven day care centres with limited resources. Excluded from a chance at receiving a good education, these children will continue to be marginalised as the poorest and most exposed in society”, says André Kalis, Specialist: Advocacy, Policy and Children’s Matters at the NCPD.
However, it need not be this way. The NCPD, alongside other advocacy and lobbyist organisations, call on the South African government to break this cycle of compounded marginalisation. “Government must strive towards an inclusive budget that takes the extra cost drivers of children with disabilities into account. This would require a coordinated effort from different departments, including the Department of Basic Education, the Department of Health, the Department of Human Settlements and the Department of Transport,” notes Kalis.
Nappies – a saving grace
For children with disabilities and their carers, any form of help received counts as a blessing. A simple item that makes a major difference is nappies. Nappies are a necessity for many children who have a disability, since incontinence is a reality for many. However, the cost of nappies is often too much for families, carers, or centres, to bear – even though the Department of Health is actually constitutionally obligated to provide nappies, an essential health item. Children with disabilities deserve a comfortable life like every other child. They deserve dignity and hygienic conditions.
The Nappy Run™
This is where the annual Nappy Run™ campaign plays an important role. The campaign, started in 2011 by the NCPD, is primarily aimed at educating the public on the violation of the rights of our country’s most marginalised and vulnerable group of people – our children with disabilities; while also appealing to the public for online donations which go towards the purchase of nappies.
Taking place from 3 October to 3 December, and concluding on International Day for Persons with Disabilities, the campaign peaks with an official 5km fun run, walk or wheel event at the Joburg Zoo on Saturday 2 November 2019, coinciding with National Children’s Day.
“Supporting initiatives such as the Nappy Run™ shows a much-needed solidarity with children with disabilities and the problems they continually face. Contributing to the cause, in any small way, will go a long way in the effort required to break the cycle of compounded marginalisation of being poor and having disabilities,” concludes Kalis.