Recently I met a young woman in a small tribal village in Manipur about an hour’s drive from Imphal. Her name is Nengnei Kim or Kikim and she is about 34 years old. I saw her first through a side window of the lovely wooden house in the hills. As she watched us walk up the drive her high cheek bones and very thick, short, black hair, cut with a full fringe, reminded me of a picture I once saw of a dignified South American tribal women. Kikim joined us in the wood panelled sitting room crawling to and fro on her hands and knees. I was privileged to have the opportunity to ask her father about their lives with Kikim. He explained that they had thought perhaps she had received the wrong medicine for a fever as a baby but subsequently tests showed that half of her brain was nor properly formed affecting her development.
Kikim’s father told me that he thought his other children had found their sister an encouragement as she was always around them and seemed happy as they were growing up. “She seems to show no other feeling but happiness” was how my friend interpreted what he said to me. When I asked him about the struggles he and his wife had faced he said that it had been hard trying to cope with the many seizures she suffered but that about ten years previously a friend had brought an evangelist home and together they had prayed and fasted and since that time Kikim had not suffered any seizures. As he spoke Kikim crawled towards him and rested her head on his knee as he gently ran a hand through her hair. It was just for a moment and then she crawled off again and sat against the wall looking around and occasionally drumming her fingers on a small side table.
As we were served tea I noticed on the mantelpiece above the magnificent fireplace a framed notice of recognition from the Baptist Church for Kikim’s father’s work organising the feast at one of the major church events that constitute a significant part of the communal life in the village. Kikim’s father said the church had helped with money for medicines and the women of the church come and pray but he seemed a little surprised at my question about the response of the church, only mentioning the evangelist much later in the conversation.
That same evening one of his sons came calling at the house where I was staying. He is a fine young man who has spent years away studying for his PhD but his heart remains in his beloved village in the hills. When I mentioned how grateful I was to his father for taking time to share something of his life with Kikim he said “I think we should use reason about these things; my father thinks the prayers of an evangelist cured the seizures, I think it was just her age and medicines; she still takes medicines.” The sensible logic seemed perfectly reasonable, especially coming from such an accomplished young scientist, and I started on a few quick (and rather trite) Christian responses. Then he told me with a tinge of bitterness, that as a child he had prayed and prayed for Kikim. In that moment I glimpsed a vulnerable little boy struggling to understand why his prayers were not answered and I became aware of a deep sadness.
Thomas E. Reynolds is a Canadian theologian with a son who has autism and various other neurodevelopmental disorders. In his book Vulnerable Communion; a Theology of Disability and Hospitality, Reynolds writes that we live in a time where the value of each person is based on whether he or she is capable of being productive in the sense of able to work and be part of modern capitalism. The modern world expects and respects independence and productivity (the language we use is an indication: what was earlier called Personnel Management is now called Human Resource Management, as if each of us is so much human capital!). This way of defining normal, naturally excludes people with disabilities who therefore need healing/hiding/pitying/caring for as they somehow represent something that is out of control. It is as a result of this so called prevailing view of “normalcy” that family members of people with disabilities find themselves running a full gambit of feelings including anger, disappointment, frustration, shame, pity, fear, loneliness, revulsion, bitterness and doubt.
Reynolds shows that this ‘normal’ is nonsense because none of us are actually independent. We are born to be in community, we have been “loved into being by God” and “objectively, many people spend a great part of their lives physically dependent upon others” (…in childhood and old age, during sickness etc.) “On a subjective level we are all dependent upon others for well-being.” “Human beings crave worth and fear the lack of worth, so we seek recognition and welcome by those around us.” We need other people and that neediness means we are vulnerable by being “open to being wounded.” There are many strings to this vulnerability but acknowledging that we are all vulnerable and all are interdependent will allow us to consider an alternative where communities are based “upon a vision of the common good that empowers the well-being of all, and in terms of the creative love of God who is revealed in the person and work of Jesus Christ”
It is in that new view of society represented by God’s love and endless grace, that we share in a common vulnerability as Jesus did; and the relatives of people with disabilities can hope to find how to live without experiencing the negative emotions resulting from having to deal with a world that thinks interdependence and vulnerability are weak and abnormal.
We who are church are often as deeply immersed in the worldly notions of ‘the normal’ as everyone else and so we try to ‘help’, believing our role is to pray for healing and give to charities when what is actually called for is holiness. We are called to be something different in the way that Jesus was different. We are to be people who love as Christ loved. This can be done by being available, giving and receiving love in mutual vulnerability interwoven with compassion and sympathy. Our love is to respect others just as they are, as Christ did. Christ came alongside us as a vulnerable human (God made man) and then did not judge others in the way of the world, he wished only that everyone may live and live to the fullest. The Lord’s desire for us to experience joy is boundless…he offers us eternity. Our love, therefore, shall seek to nourish the beloved’s ability to experience joy. And, just as God remains faithful in Christ and the Holy Spirit so we must remain faithful; that is not ‘doing for’ someone but ‘being there’.
This kind of holy love stands in contrast to the mistaken world view that declares Kikim is a problem needing a solution. When we condemn Kikim by the worldly notion of ‘not normal’ we deny our shared vulnerability and dependency and in so doing bring into doubt the truth of Christ’s love.