The paralysing effects of pity

At Disability Africa, we try to think things through before we act. We do get emotional sometimes, but we try never to let that guide our strategy. This is an important point because, when confronted by widespread disaster or social inequality or disadvantage of some kind, we are often encouraged to get emotional, to feel sorry for someone. 

This is done on an industrial scale by some of the big charities. They do it because, they argue, they don’t have time to make a complex argument; they want you to feel sorry for someone and then donate your money. And of course it works. But there are some downsides to this strategy (we've written about this before), but to summarise, one of the most important side effects of making someone an object of our pity, is that it also tends to weaken them, to make them seem helpless and vulnerable and it takes away their power – it is literally dis-empowering. Thinking is often a much better preparation for addressing a problem than ‘emoting’ and yet when it comes to aid and development we are so often asked to emote and almost never to engage our intellect.

In a previous article, I wrote about how I was very struck by the terrible state of ‘inclusive education’ during my first visit to Malanga. The ‘special education unit’ at a local primary school is an empty shell and the local villagers won’t send their disabled children there. “But what do they do instead?” I asked Japhet, our local partner and guide. “They just stay in the homestead.” was his answer. Disabled children are being kept at home and comprehensively under-served because the local people can see that the ‘special unit’ is totally unfit for purpose. What is significant here (aside from the desperately inadequate provision) is that when the ‘special school’ isn’t available, the community does nothing as an alternative. The children just go back to languishing at home. I believe this is in large part due to the dis-empowering effect of our attitudes to aid and development.

What we observe in Malanga is a manifestation of disempowerment on a scale which goes way beyond this small African community. I believe this effect is a direct result of our habit of seeing problems from an emotional starting point. We feel sorry for the person, community, nation or even continent! “The poor people in Africa!”

We invoke our emotions in preference to our intellect and in so doing, our attention is aimed at the thing we feel sorry for and we frequently and disastrously mistake this for the source of the problem. We see in isolation of the broader context. What I think we observe in Malanga is the same disabling effect which we have noted before in the context of the disempowerment of disabled people

To make the point, it’s worth rehearsing this idea:

It’s about where we focus our attention and about where we invest power. If we think of a disabled person as the individual with a problem, then we inevitably default to the position where we focus our attention on the individual – ‘what’s wrong with them?’; ‘how can they be fixed?’; ‘what special whotsit, thingy or institution do they need?’ And the problem with that is, as I’ve just suggested, that we are looking in the wrong place for the solution.

When we think about disabled people as individuals with a problem which can only be fixed by ‘experts’ (special teachers, special equipment, special nurses, therapists and doctors) we entirely fail to notice the broader context and see that disabled people can also be thought of as those of us who are excluded because their particular impairments (physical, intellectual or sensory) have been largely ignored by the rest of us who constructed society. We, who decided on the social norms of transport, access, leisure opportunities, education etc etc. did so for most of us. Somehow, we created a set of arbitrary standards which accommodate the average person but which unwittingly exclude those of us with impairments. As a direct result of this thinking we embark on a search for specialists and special services to fix the perceived problems of those of us who were excluded from the norms of society’s standard services.

But what if those specialist people and services are entirely unavailable as they are in Malanga and the majority of places in the world where infrastructure is more traditional and less modern? Well, nothing much apparently. This is how the thinking goes: – That person has a problem – we feel sorry for the person and would like to fix their problem - we need specialist stuff to fix the person – we have no specialist stuff - we can’t fix the person -  we can’t do anything!

But if we could stop focusing our pity on the person and instead think about the wider context we would quickly realise that the hunt for specialists is a distraction! It is not the person with impairments but the social norms which need to be addressed to be more inclusive. Now we have set aside emoting over the individual and started thinking, we have the opportunity to realise that if we disable a person with impairments by failing to include them, then it is within our power to enable them through inclusion.

When we think about a disabled person as the individual with the problem which needs to be fixed by ‘experts’, we relinquish all the power to the ‘expert’. This approach has led to a very particular situation where the power of life-choices for an individual is passed to experts – doctors, language therapists, ‘special teachers’. They are the ones to whom parents defer; they are the ones who make the decisions about treatment protocols, the right school etc. and all the while we are focussing on what is wrong with the person, a rather insidious effect takes hold which could broadly be characterised by the idea that if we can’t fix you so that you can fit in to our conventional structures and institutions, then we will create an institution where you can go and be cared for – we are sorry but that’s just how it is. With this thinking, we have entirely robbed the individual, their families and their communities of the freedom to find their own solutions.

We should recognise that, if we focus on the changes we can make within our society to include disabled people, rather than focus on what we can’t do to fix the ‘individual’s problem’, then suddenly we are all empowered again!

This ‘social model of disability’ is gaining traction in the wealthy north of the planet but we need to recognise that we also ‘exported’ this old disempowering model of thinking to Africa – it came as a stowaway along with our pity in our trucks full of aid.

Consider the villagers of Malanga who are parents of disabled children, they have come to think that their child is a curse, a disaster, beyond hope except perhaps that which can be offered by a specialist – someone from a hospital far away, someone with training and skills way beyond anything locally available - maybe even a ‘white’ specialist from a foreign land! And if the specialist isn’t available then what can we do? The special unit at Bahati Primary School turned out to be an empty room so they took their children back home and everything went back as it was - the child is still isolated, rejected, seen as useless, un-included and destined for nothing good.

This notion that they, the people of Malanga were weak, uneducated and dependent on specialists has entirely dis-empowered them not least because Malanga is a very typical Kenyan village with very little one would describe as modern infrastructure.

Disability Africa’s solution is as radical as it is simple and effective, and it places power right back in the hands of the community, families and disabled children themselves. In fact, it is so simple that we sometimes have a hard job persuading communities to consider it. So ingrained are the old ways of thinking that when a solution is proposed which depends on very little outside help, no specialists, and is almost completely deliverable within local resources, communities take a while to see the value of it.

We start with the idea that everyone, regardless of circumstance, wealth or environment, can play. It’s easy and it’s free. It requires no experts, no specialists. It’s often under-rated but it’s the way children can naturally learn a vast range of vital physical, social and communication skills. It is the best way to get to know someone, their strengths, likes, dislikes, skills and abilities. Play will naturally identify abilities that need more support to develop.

Play is, almost by definition, inclusive; it creates familiarity, removes barriers and stigma. Young volunteers and other children who play with disabled children have their traditional prejudices removed almost without notice. Play is a great way to begin assessment of children's medical and educational needs. All this is possible through play. 

In a previous blog, I suggested that the question we should be asking is, “What can we do for the millions of under-served disabled children while we are waiting for the serious minds and resources of the UN and World Bank to deliver the fourth goal of the SDG’S which addresses education for all?” Well, let’s stop feeling poor because we don’t have massive resources; let’s stop feeling weak because we are uneducated and let’s stop feeling hopeless because there are no specialists. We believe that a community-run play project, run with local resources and volunteers will, with a minimum of training and support, provide a more appropriate and valid educational experience than is currently available to many children in Africa. Certainly such a scheme would be better for the five children in the empty room at the Bahati ‘Special Education unit’ and we suspect, the vast majority of disabled young people in Africa who either attend desperately under-resourced ‘special’ classes as the token disabled children in education in Africa or those who are currently languishing at home waiting for the ‘specialist provision’ that will never come.

During my visit to Malanga, I was asked by a grandfather to see a boy who “had speech problems.” He needed, I was assured, to go to the special school in Kilifi (where he would have to stay as a boarder by virtue of the distance). When I met the lad, he turned out to be a boy of about 12 years, seemingly strong with a happy face and bright eyes. He had Down’s syndrome. I told ‘Grandad’ that I had visited the ‘special schools’ in Kilifi and that I wouldn’t send my son there. I assured his grandfather, he doesn't need specialists or an under-resourced ‘special school’ miles from his village and family. He will learn to speak in his own way in his own time, just as he will learn other skills at his own pace. In the meantime, he needs to be loved for who he is. To be included by his community, not separated from his family. He needs to be understood, to be appreciated for what he can do and how he can do it so that he can have a valid future within his village, perhaps helping to build the traditional houses or working on his family’s ‘shamba’.

Grandad looked sceptical and a bit disappointed. I wasn’t surprised but I’m hopeful for both of them. Our playschemes in The Gambia have demonstrated the ‘power of play’ to develop skills and change attitudes and become a hub for other important local support services. I’ve no doubt we can do the same for this lad and his grandad in Malanga.

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