Unproductive passive sympathy

Some people hold the fallacious belief that feeling sorry for disabled people and their families is synonymous with community development, but sympathy devoid of strategy and practical action cannot and will never drive such development.

Passive sympathy does nothing to change the status quo. Community development is about people working together to build stronger and resilient communities that make a positive difference in society.

Pity frames disabled people and their families as life-time beggars who deserve a few drops of coins and as victims who should passively await the end of their demise (Coleridge 1993, p.3).

As noted by Coleridge and across the world, even people who have a development mindset often fail to advocate for the involvement of disabled people and their families in development discussions.

UN agencies, NGOs and rehabilitation professionals debate disability at their conferences in Geneva, New York and elsewhere, charitable institutions vie for major funding from donors under the umbrella of “community-based programmes”. (Coleridge, 1993).

However, such zeal may still miss the point as existing donor-funded projects appear to treat disabled people and their families as recipients rather than participants in the decision-making process.

The general belief is that disabled people and their families should just keep quiet whilst we feel sorry for them, they should passively accept their situation and receive whatever we may decide to give them.

In this article, I highlight the fact that people with disabilities and their families are an integral part of the community development process, capable of initiating projects, running their own lives and acting as full partners rather than passive recipients of donations and rehabilitation.

To buttress the above standpoint, I use the example of a community-based project which started in 2014, and is run by mothers of children with disabilities in Rusape, Zimbabwe.

Founded by Rumbidzayi Chikwava, a single mother of a disabled child, Ngonidzaishe Care Centre has turned out to be a sanctuary for boys and girls with different forms of disabilities and a place of relief for mothers of children with disabilities.

The Centre is named after Rumbidzayi’s son Ngonidzaishe (God’s mercy), who was born without any form of disability, but who at the age of three started to have convulsions, and ultimately lost all his senses.

Rumbidzayi said: “He just started not to walk, sit, see, talk or hear anything, he became bed-ridden. Doctors described the condition as hypoxia oedema. Now my son is 14 years old, but he has the mind of a baby who is one-and-a-half years old.”

As is common in most African contexts, the disability of a child often complicates life for the mother, whose status within both her marriage and community immediately becomes inferior.

However, after dealing with the emotional stress that usually arises from such experiences, Rumbidzayi decided to rise to the occasion, and she sought to make a difference in the lives of children with disabilities and mothers of such children in Rusape.

She teamed up with other mothers of disabled children to economically empower themselves as well as provide day care for the children. Rumbidzayi is grateful to her brother who gave up his four-bedroomed house and its outbuildings in Rusape to house the children and care-giving mothers during the day.

“At first I was emotionally stressed, but I got on my feet and I began to identify other mothers with disabled children. We began a support group, we started to encourage each other and to advise each other on how best to take care of our disabled children and how best we could fend for them.”

Today, Ngonidzaishe Centre is a sanctuary for 65 mothers and their children who have a diverse range of disabilities. Rumbidzayi said: “Some of the children have cerebral palsy, some are deaf, some have mental retardation, some autism, and some have other kinds of disabilities and they come from Makoni District and particularly from villages such as Thandi, Matsika, Chinyudze, Lawrencedale and Nyavhada.

“Our children are ‘high maintenance’ (high care) and their ages range from 2 years to 16 years. We seek to empower mothers by bringing relief to them as we take turns to take care of the children, so that mothers who are not on duty can engage in some income-generating projects during the day.

Most of the mothers run market gardening projects and they sell their produce at the market in Rusape urban and in surrounding communities, whilst their disabled children are being taken care of at Ngonidzaishe Centre. What happens at the Centre during the day?

Ngonidzaishe Centre seeks to give the children functional skills. They are taught how to bath, dress and feed themselves, to go to the toilet and to acquire mobility (movement).  Regardless of age, most of the children are on diapers.

For exercises, some of the children use improvised assistive devices that are made from gum tree poles, such as standing frames for children with cerebral palsy.

Drawing from monthly food contributions made by parents, the children are served with breakfast, lunch and ‘mahewu’ (a traditional non-alcoholic nutritious beverage made from maize meal and malt) later on in the day.

Each mother contributes a bucket of maize, dried beans, potatoes, sugar, salt and cooking oil.  In addition, the mothers nurture a garden which consists of a diverse range of organic grown vegetables at the centre.  Ngonidzaishe does not charge mothers for services provided.

The power of working together  In appreciation of people and organisations that have granted or are granting support to the initiative, Rumbidzayi says, “Raphel Jamu, a visual artist, volunteered to teach art to our children. Jamu also arranges annual art exhibitions for us for fund-raising and our children get to showcase their artwork to potential buyers under a 200-seater tent which is donated for the annual event by a funeral home.

“Dr Alfred Kumbirai provides free medical treatment to any of the disabled children whenever they fall sick and Dr Dunmore Kusano’s physiotherapist, Mr Ramba, provides us with physiotherapy services for the children for free. Mr Magomeze of Macheke Lodges hosted a Christmas party for us for free on 27 December last year.”

The voluntary support from various professionals and sectors in the community is, indeed, contributing to the sustenance of the project.  The Ngonidzaishe project provides evidence that attitudes in Rusape are, indeed, shifting from passive sympathy towards home-grown practical and empowering strategies that address problems at grassroots level.

Mothers of children with disabilities in Rusape are driving an economic empowerment project for themselves as well as facilitating access to social events and healthcare for their children.

Community development is, therefore, not about waiting for the Government to come to our communities to do everything or to wait for donor funding to come from the West before we start moving.

Collective community action which pays attention to the needs of people with disabilities and their families in our communities is a necessity rather than a luxury.

With each passing day, children with disabilities are growing into adults, is it the case that regardless of age such children need perpetual care and support?

If that is the case, then what are we doing in our communities to make a difference in the lives of such children or adults and their families? I call for research which explores the care giving and support needs of families of children and adults with disabilities within the local context.

The fact that the UN Convention on the Rights of Persons with Disabilities provides a focus for such families is not enough. lntensive and practical community development efforts that include disabled children or adults and their families is required, if any positive difference is to be made by all of us in society.

Dr Christine Peta is a public health care practitioner, who, among other qualifications, holds a PhD in Disability Studies. Be part of the international debate on how best to nurture a society which is more accessible, supportive and inclusive of disabled people. Partner with Disability Centre for Africa (DCFA). WhatsApp 0773-699-229; Website www.dcfafrica.com; E-mail [email protected]

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