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Malawi
SOS child in bath in Malawi
Nearly a third of Malawi's children do not attend primary school, and more than one in ten live with HIV/AIDS. We work in Lilongwe, Blantyre and Mzuzu to help families provide a safe, happy childhood for their children, and to provide care for those who cannot grow up with their parents. … more about our charity work in Malawi

Breaking down the stigma: SOS Malawi’s work for the rights of disabled children

Jeremy Sandbrook worked as the National Director of SOS Children’s Villages Malawi from 2004 to 2009. In the interview below he talks about SOS Malawi’s work with children with disabilities and how he became a committed advocate for the rights of disabled children.

 

Victor Musowa from SOS Malawi was a member of the Global Team who developed the Inclusion Policy. Why was SOS Malawi invited to contribute?

Jeremy Sandbrook:
The Continental Office approached us in Malawi as we had a number of well-developed programmes, in particular our SOS Medical Centres and SOS Hermann Gmeiner Schools in Lilongwe and Blantyre, which worked in ensuring that children with disabilities were provided with adequate development opportunities.

SOS Medical Centre Blantyre MalawiOf particular note were our medical centres, which were divided into two sections: a clinical unit which provided traditional medical services; and a child rehabilitation unit, which specialised in working with children with disabilities. Both units catered not only for beneficiaries in our own programmes, but in more broadly supporting those from the surrounding communities. The staff involved were not only extremely dedicated, but equally well trained, and included a volunteer doctor, clinical officers and registered nurses on the clinical side, and physiotherapists, occupational therapists, communication disorders assistants and rehabilitation technicians on the child rehabilitation side. Many of them have been sent overseas for specialised training with the support of SOS Children’s Villages Norway. In this context our medical centres were unique in Malawi, as they not only provided staff with specialist skills not available elsewhere in the country, but provided a holistic approach to supporting those children who we felt were the most vulnerable children within our target group. The services offered were not only in high demand from our own programmes, but well supported by other local organisations, including local and national government medical structures. The new SOS Inclusion Policy states that SOS - together with relevant stakeholders - should lobby the state as the primary duty bearer for the allocation of resources to assure the survival and development of children with disabilities and their families. Hence, an ancillary activity of the SOS medical centre was to increase the awareness of the plight of these children. To make governments aware of their responsibility is crucial, as in a many developing countries, those with disabilities tend to live on the fringes of society, and as such tend not to be well represented.

In addition, from a practical perspective - and as highlighted in the Inclusion Policy- the need for a professional diagnosis of the child’s problem at an early stage should not be under-estimated. Without this, the intervention may result in treating the symptoms, as opposed to the underlying cause. As an example of this, we had a young boy in one of our SOS Children’s Villages who exhibited a number of very complicated symptoms which in effect has masked the underlying condition. In order to ensure that he was provided with the necessary care and support, we made the difficult decision to move him to a new family in our Lilongwe children’s village, in order for him to access the specialised services offered by our SOS Medical Centre there. Even with this support, it took us a further 9 to 12 months to properly diagnose the causes of his condition, as there was a lack of child psychologists in the country. During this period, co-workers in the SOS Children’s Village were convinced that it would be impossible to keep him in the village. It was only after the SOS Medical Centre staff were able to provide an ongoing support programme, backed up by ongoing internal lobbying that the staff agreed to his remaining in the village. The same boy has now undergone such an amazing transformation; you would not recognise him today, with the result being not only fully integrated into his SOS family, but also accepted by both staff and children alike, as a valuable contributing member of the SOS Children’s Village. Without the commitment and dedication of a number of members of the SOS Medical Centre, I am convinced that this young boy would have had no chance of a real future!

What does the Inclusion Policy mean for the work in Malawi?

Jeremy Sandbrook: I feel that much of what is in the inclusion policy is already being followed in Malawi. That being said, our biggest challenge was to overcome internal prejudices that we as fellow human beings tend to have towards those with disabilities. In this context, the issue was to get staff to feel comfortable with being around and working with children with disabilities. It’s a mindset change. Often people automatically think that people with physical disabilities must also have a mental disability. This is not helped by the numerous barriers that people with disabilities have to overcome in everyday society, with some of these being grounded in traditional beliefs such as witchcraft. It is stigmas such as these that we have tried to break down, not only within our own national association, but more importantly within the broader community in which these children live. In support of this, we made strong efforts in mainstreaming disabled children into our SOS Hermann Gmeiner Schools. Whilst the most obvious first step was to ensure that the psychical infrastructure was wheelchair and disability friendly, a more challenging issue was the wider environment: In many cases, the disabled children simply could not even make it to the school gates, and were therefore excluded from access to an education.Family helped by SOS Malawi

All of our schools were provided with special education teachers, whose main aim was to work children with special needs. The programme not only provided remedial classes for children with standard learning difficulties, but provided additional special classes with those with more specific disabilities, such as hearing impairment, where we taught both sign language and lip reading. The focus of the educational programmes in this context was to enable children to become independent and enable them to be integrated into society. In the context of those children with a higher level of disability the support provided may be as simple as teaching them a number of basic functions associated with every day life; how to wash themselves without help, how to feed themselves or get dressed. These things are often overlooked but are essential if we are to ensure that these children are able to live with a basic level of human dignity.

Our overall focus in this context was that these needs had to be recognised and addressed, and as a consequence, they are not segregated from their peers. As I pointed out in the example of the young boy, our staff in the medical centres were heavily committed to the needs of children with disabilities, and it was thanks to them that many internal barriers were been broken down. Without their commitment, I feel that their would have been a tendency for staff to disallow a child with a disability to be admitted to an SOS Children’s Village, with the argument being that they could not be guaranteed the appropriate care. When such an incident did happen, it was difficult at times to assess whether this was simply an excuse for not wanting to admit a child with a special need, or a well-considered judgement based on the facts of the case.

What would you recommend to managing staff?

Jeremy Sandbrook: In my opinion, the key to this policy being successfully implemented, is to first convince the national director, closely followed by village directors and other facility heads. If we fail to get them to support it at national level, I feel that the policy will simply remain as words on a piece of paper. These key staff needs to clearly understand not only the situation of children with disabilities, but to also appreciate and respect their rights and needs.

In other words: Sensitize co-workers to the issue, break down the stigma, help them to see that people with disabilities are the same as everyone else. Whilst their needs are often the same as ours, their rights are identical. Understanding this is a precondition for understanding the content of the policy, which in turn is essential for it to be successfully implemented.

How did you handle the issue during your time as National Director of SOS Malawi?

Jeremy Sandbrook: The further away you are from the programmes on the ground, the more likely you are to make decisions without taking into consideration some of the human element involved. When I was national director I struggled at times with the fact that the costs of the medical centres - when compared to other facilities - appeared to be extremely high when taking into consideration the number of children being supported. In this context, the funds required to support a single disabled child through the medical centre, was the same as supporting say up to 100 children without disabilities in other facilities. From the point of view of ensuring the greatest overall impact, to me the decision was relatively simple.

It was only after intensive discussions with staff from the medical centre, and going out and meeting a number of beneficiaries, through the presentation by staff of three actual case studies, that all of a sudden, I realised that it was no longer simply a question of figures and statistics. It was the first time for me that I really thought about the impact on a human being if they where unable to able to bath or feed themselves, or go to the bathroom unaided.

It was at this stage that the real value of the support provided to disabled children by the medical centre became apparent, as it allowed these children to a chance to live with a minimum level of human dignity. It was this example that made me realise – both as a national director and as a person - that disabled children were indeed the most vulnerable among all of the children we care for, and that often we are the only ones who help them. If we don’t take on challenges such as this, who then will be responsible for advocating that their basic human rights are met?