I guess it will always be a shock when you walk into someone's home to find a member of the family starving to death. It's not something that has happened to me often but we see the pictures don't we?
This situation was different from the ones we see on the Oxfam adverts - it wasn't a situation where a community had been hit by famine - certainly the family were poorer than anyone reading this is likely to be, but there were seven other members of the family all healthy and comparitively well-fed as were all the neighbours.
So why was this young woman (we'll call her Elizabeth and she's 18 years old) starving?
I find it difficult to describe the situation in a way that doesn't invite judgement but I beg the reader to recognise that this is a complex situation which only Elizabeth's immediate family can really describe. But here are some bare facts to consider:
* Elizabeth was born with quadriplegic cerebral palsy, she cannot speak or effectively use her arms or legs.
* Elizabeth needs someone else to feed her, dress her and clean her.
* She appears to react in an appropriate way to events in her environment and frequently makes attempts to communicate with her eyes, hands and mouth. My guess is that Elizabeth is a bright girl.
* She is the eldest of six children - mum is still breastfeeding the youngest.
So how does mum cope? Well for eighteen years, there has been no support from the statutory services - the cost of a trip to the hospital is prohibitive. A traditional source of support would come from grandparents but Elizabeth's only surviving grandmother is blind. What about her extended family or neighbours? Mum's answer to my question was chilling, "They say I should get rid of that one.
And so, after eighteen years of lonely struggle, Elizabeth is starving in the back room.
We took her to hospital where she was admitted and put on a drip. We returned later with hot food for mum and Elizabeth and were amazed to see the mean trolley which served as hospital bed, surrounded by visitors all smartly dressed, fresh from Sunday church. There must have been nine or ten of them. I shouldn't have been surprised; we had paid several visits to Elizabeth's house and driven her off to hospital - word travels fast around the compounds.
Who were they? Elizabeth's neighbours apparently - both the men and women looked great in their sharp suits, but the women also sported sassy dyed wigs.
Right there and then, the situation struck me as so bizarre. See, Elizabeth needn't have been in hospital at all. Once she got there, she was surrounded by everything she needed but, where was all that support before she was hospitalised from isolation and malnutrition?
I loathe the expression "special needs" and this situation was screaming the reason at me. Elizabeth was in a critical condition being visited by sympathetic neighbours - but how had she got there? Because caring for her had just become too hard. Mum and Elizabeth were isolated because others just perceived the effort to be not worth it.
This creates two questions -
"Why was Elizabeth's life perceived to be so worthless that Mum was repeatedly advised to 'get rid of her'"? and . . .
"What was so 'Special' about Elizabeth's needs that they were beyond the scope of what the community could provide?
Elizabeth only needs what we all need - nothing 'Special'; love, food, company - friends, people to talk to, visitors - something to do, to be taken out once in a while - she just needs to be seen as one of the community - to be Included.
If all the people who visited Elizabeth in hospital that day took turns to visit her and mum just once a week, to stay for an afternoon, to give a bit of time and attention, they would each only have to visit maybe 6 times a year and Elizabeth would be in a completely different condition. Her family would also feel a radical difference.
We all know this is so much more easily said than done, and for Elizabeth, sadly, right now, she is safer in the residential care facility to which she has now been referred. But there are hundreds and hundreds of people like Elizabeth and it is neither practical or affordable or even desirable (except in the gravest emergency) that these people should be institutionalised. Elizabeth can contribute to the lives of those around her and they can contribute to hers. It just takes a change of mind - a shift in local perceptions. Creating this shift seems to us to be most valuable work - this is what saves people from starvation and saves their communities from the apathy of murderous consensual neglect; Inclusion radically improves the lives of everyone in the community, it turns tragic disaster into mutual benefit.
After this article was written, we received the very sad news that Elizabeth had passed away. Despite doing all we could to save her life, our interventions came too late – years of neglect by her community had caused her untimely death.
Inclusion saves lives and civilises everyone who takes part.