Acknowledging Shared Vulnerability

Larger Hills

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.

 

One Caste, One Religion, One Disease

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As Christians we can expect that church will bring about change in society, sometimes it happens in unexpected ways.

Bethany Leprosy Colony in Bapatla, A.P. is a self-settled community of people affected by leprosy many of whom spent time in the Salvation Army Evangeline Booth Leprosy Hospital just cross the main Chennai to Kolkata railway track. Prasad was one of the founder members of the community in the 1950’s and a Christian; he established the first church in Bethany. Many of the people affected by leprosy who lived in Bethany had moved there from the leprosy hospital after treatment and methods of care changed. They were unsure about returning home either because their families would not welcome them or because finding matches for siblings would be difficult. These were therefore people that felt excluded.

Anthropologist, Dr. James Staples in his book Peculiar People Amazing Lives records that the people often spoke of themselves as being “Oka kulam, oka matam, oka jabhu” or “One caste, one religion, one disease” a topic that he takes up at some length in the book. In this case the one religion is Christianity which most of them had been exposed to during their stay in mission hospitals and which they began to practice once they settled in the colony. The form of Christian practice was shaped by the protestant evangelical missionaries they met in the hospital settings and then significantly by the Lay Evangelical Fellowship (LEF) pastors who regularly visited the community to conduct the Sunday services.

Society attitudes towards leprosy can be best described by a look at a local doctor who I shall call Dr. Lakshmanarao. He confessed in the 1980’s that he was afraid to treat leprosy patients in his small private practice. He was afraid of the disease (even though he was scientifically trained) and he was afraid of the impact on his own business if he was seen caring for people with leprosy. He only changed his mind after meeting a young Christian nurse from the UK whom he considered vibrant and beautiful but who had chosen to work in the Salvation Army Leprosy Hospital. He reported:

“When I saw her I looked at my own motives for avoiding treating leprosy patients and realised they were unsound.”

He subsequently went on to serve the community for many years visiting the colony and treating people in his clinic, which continued to thrive.

At the same time a young man with leprosy who worked in the Salvation Army Hospital and later moved and worked in Bethany leprosy Colony had one hand that was disfigured as a result of leprosy. He would boldly go about his business in the local town of Bapatla but always with the affected hand hidden in his trouser pocket so as to avoid rejection or any confrontation about leprosy.

The LEF pastors were almost the only Indian visitors to the leprosy colony and their faithfulness was striking at a time when many people would have been, like Dr. Lakshmanarao, uncomfortable interacting with leprosy affected people never mind visiting the colony.

It is these LEF pastors  who together with the fervent Christians in the leprosy colony, insisted on holding an annual three day prayer meeting in Bethany which over time attracted Christians from the local villages and Bapatla town. All would meet together to listen to speakers from across India sitting under giant pandals, in the open space in front of the community hall right in the centre of the leprosy colony. Those prayer meetings brought outsiders into the village in a manner that had not been seen before indeed in the one year a group of pastors travelled from Mumbai and stayed in the colony guest house.

Here then, is the societal change that I mentioned at the start of this blogpost. There were no walls around Bethany Leprosy Colony, they were not necessary as no one really wanted to come there but the response of the LEF pastors were in part instrumental in breaking down the invisible walls of fear and exclusion which have disappeared from the colony now.

The Bethany example proves to me that Christians, by their behaviour, can effect change in society which is why it is so vital that church in India leads the way in its response to disability, providing a model of inclusion that not only allows all people to learn about Christ but which others can emulate.

 

So when do we care?

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If at all you ever think about disabilities what direction do your thoughts take? I guess it might depend on your circumstances and time of life. If you are about to become a parent you might find yourself praying for a hale and hearty baby and doing everything in your power to ensure that you protect your unborn baby from the risk of disabilities. Babies and toddlers need vaccinating against the worst of childhood diseases like polio and measles. Parents of youngsters constantly worry about their propensity for climbing and speed and the associated risk of injury from accidents. Later there may well be a whole slew of years when the idea of disabilities never enters your head…you and your children are sensible, and safe and have got by very well until now. But then comes old age, failing eye sight, a realisation that you are not hearing as well as before, stiffness and perhaps even some of the nastier illnesses of later life like Parkinson’s disease or a stroke that leaves you unable to move on one side; chronic arthritis or dizziness and falls resulting in broken bones and difficult rehabilitation.

So when do we as church need to care about our response to people with disabilities? I was wondering how the man with the withered hand in Mathew 12:9-13 became like that and also the ten people with leprosy in Luke 17:11-19, do you think they contracted leprosy as children or had to leave their homes and jobs as adults? We are told that the man in John 9 was born blind and there are loads more examples in scripture that should get us thinking. I always have a chuckle at Ecclesiastes 12 with its vivid description of decrepit old age.

If there are all these possibilities then perhaps we should be getting our response to disabilities sorted out now. Maybe church does have a responsibility to be informed and open and welcoming to all people with disabilities because at any moment it could be us who become a disability statistic. I would not wish to be left out. As a young parent of a child with disabilities I would feel so sad if my child could not go out with the rest of the children for Sunday School or if I could not come to church at all because there was no one available to care for my child whose disabilities preclude him from attending church. As a young adult on crutches or in a wheelchair I want as much fun with the youth group as anyone else. And as a faithful member of a congregation for many years I do not want to find myself unable to receive communion because I can’t climb the stairs or be unable to join the singing of hymns because the words on the screen are not clear enough to read and there is no large printout for me to read in my seat.

In church recently I found myself sitting next to the father of one of my friends who is visiting for a while. I know he has become deaf in his old age and I was acutely aware that he could not always understand what was being said. I wondered what we could have done to make the service easier for him to follow. The notice sheet handed to everyone as they enter was especially helpful that week as it included not just the scripture portion but also an outline of the message, so he could have followed that if he had wished to. If the verses used to lead us into a time of worship and confession had been displayed on the screen it would have been helpful. These are small changes that would be fairly easy to implement as a routine.

Before posting this blog I had a chance to ask my friend’s father about his experience in our church. He did not answer my question but told me instead that he had recently visited a home for children with disabilities run by The Missionaries of Charity sisters. He said he had asked if the children could hear and when he found out that they could he got permission to sing with them and share a Gospel message. That elderly man has been an enthusiastic Christian and evangelist for many years, church in India needs such people, we do not want to lose their wisdom and experience for the want of a little thoughtfulness and imagination in the way we make services inclusive for everyone.

 

 

 

 

Salt and Light or not?

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The conversation between Joan and her boss went something like this:-

Joan: “Did you enjoy the Mother’s Day service in church this morning, I see you have a lovely posy of flowers?”

Boss: “No, not really as they will insist on letting the “retarded” children from that home down the road attend church. They really should not do that.”

When I heard about that conversation I was reminded of a different occasion when a nursing friend found herself in a hospital lift accompanying a badly burned and disfigured little girl with disabilities. Another passenger in the lift loudly proclaimed “Such people should not be let out.”

The stories sound almost the same don’t they? Children with disabilities being scorned by women for being out in general society. But there is a difference; Joan’s boss was Christian, we do not know about the woman in the lift. It was hard to spot that difference though. Does it matter?

The way we see and behave towards other people in society must be shaped by our being Christian so it is worth looking at what should drive that difference.

Scripture tells us we are all made in God’s image (Gen.1:26). John Wyatt* says “that God has chosen no other image bearer, either animate or inanimate on planet earth.” If you look in a mirror what you see is an image, or a reflection of yourself. There is no reflection without the mirror. So it is for us, we reflect God’s image. We are dependent as without God there is no image.

John Wyatt continues by reminding us that unlike secular thinking “in Christian thought the dignity of a human resides not in what you can do, but in what you are, by creation. Human beings do not need to earn the right to be treated as godlike beings. Our dignity is intrinsic.” If it is true for me as a human being then it is true for all human beings including of course, those with disabilities.

So, as Christians the way we respond when we are confronted with disability can be perfectly reasoned; here we have another human being and since all human beings and only human beings, are made in the image of God they must be treated as godlike beings, with all that implies.

My way of dealing with people has tended to be shaped by Luke 6:31 which teaches to “do unto others as you would have them do unto you.” It is of course precious scripture. But, I am flawed, and I live amongst similarly flawed people so I could be hurting and may have been treated badly and be incapable of recognising how I should be to others. By contrast, the God in whose image we are all made is perfect and the different kinds of people I meet are a reflected image of the perfect God. Since they are godlike they are obviously fully worthy to receive the very best of me. And the very best of me is manifested in the fruits of the spirit (Gal 5:22) – love, joy, peace, patience, kindness, goodness, faithfulness and gentleness as well as acceptance of people just as they are.

You might remember reading about Shreya in an earlier blog, she has Downs Syndrome and attends DBF South Church in Delhi. To mark International Day for People with Disabilities (IDPwD) Shreya was invited to read John 3:16 during the church service. She was accompanied by her Mum who pointed out the words one by one as Shreya read them. At the end she belted out heartily “Jesus Christ loves you.” The church family responded joyfully and afterwards many members of the congregation greeted and congratulated her. Including Shreya in the service and praising and encouraging her and her parents is an illustration of the difference that will make people say that they know we are Christians by our love.

*John Wyatt: “The New Biotechnology” in Issues Facing Christians Today by John Stott.

 

Angels can change tyres too

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Statistics for the number of vehicles in Delhi are staggeringly, somewhere in the region of 8 million.  Now if you have ever been caught in a jam it sometimes seems as if at least half of those cars and motorbikes are somewhere between you and where you want to go.  Often, on my way to work I see people gently pushing parked cars one a little this way and the one in front a little that way until the double parked cars inside can be manoeuvred out.   This mass of vehicles, causing traffic jams and parking nightmares are a terrible nuisance but for some they can be life changing.

Researching for this blog I was privileged to meet Mr. Inderjit lal here in Delhi.  He was affected by measles as a child of about eight and was left paralysed with no sensation below the waist.

“There was no measles vaccine in those days and what happened to me was anyway very rare. I was bed-ridden for six months after which the sensation gradually began to return.   I had the support of a marvellous doctor and physiotherapist who never lost hope. Dr Bhanu Shankar later went on to be Director General of Health Services to The Government of India and it was he who told me when I was 18 that I should get a driving licence when everyone else was saying I was off my rocker to even try. I feel God has been very good to me, sending me such committed people.”

“As a young man I was able to climb two flights of stairs and as long as I could drive I could get to most places. I worked in tourism for 25 years and used to drive a normal car.   About 40 years ago I asked the Lord to help me and be with me on any venture and I have felt his presence, so I was as confident as the next person about getting around.”

“Years ago when our children were only about 1 and 3 years old we were piled in the car late one winter evening coming back from celebrating a birthday.  I was driving and just before the Kidwai Nagar and AAIMS junction (that was in the days before the flyovers) we got a flat tyre.  I could drive but I could not change a tyre and so there we were, Rita, me and two little ones in the cold and dark with no one around. Suddenly out of the gloom comes a young man whom we did not recognise but who declared that he knew us. It seems he was the son of a former servant and he was willing and able to change the tyre and send us on our way.  We know that was God’s good grace and was the reason why I had such confidence in spite of the limitations caused by the disability.”

“I made sure my children could drive and stopped driving myself a few years ago mostly because now there are so many more cars and it is almost impossible to park close to places that I need to visit and I cannot walk far.”

It doesn’t sound much really does it? But giving up driving has narrowed Inderjit’s world and increased his dependence on others.

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Of course in a city like Delhi it is perhaps madness to consider the luxury of reserved parking for people with disabilities.  I did see a “disability parking” sign outside a row of shops on Aurobindo Marg recently but somehow I can’t imagine it is reserved only for people with disabilities.  Lots of congregations across India meet not in special church buildings but in schools and public auditorium so my conversation with Inderjit got me thinking that it would be fairly easy to make a portable “disability parking” sign and have a young church member set it up each week to keep parking spaces close to the meeting place especially for people with disabilities. Of course for those mainline churches that have their own parking it is would be a simple matter to rule up special parking places close to the church entrance and the nearest ramp into the building.  Ah but ramps are for another blog post!

I would like to thank Inderjit Lal and his wife Rita for sharing so freely with me their journey as Christians living with disability. I remain deeply impressed and am sure you will be hearing more about them in future blogs

The Disability Inclusion Toolkit is Out!

 

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The first copies of the Disability Inclusion TOOLKIT are out!  It is a terrific collection of perspectives on church and disability written and compiled by Engage Disability India .

There are nine units covering Biblical and Faith Perspectives of Disability, Inclusive Church Ministries, Healthcare and Rehabilitation, Personal Development and Family Life as well as Education, Livelihood, Empowerment and an important last unit covering Leisure.  The pages are crowded with stories from people with disabilities and their families and carers. Text boxes and images add clarity and throughout are scripture reminders of why church is meant to be inclusive.  At the end of each chapter is a list of resources and there is a DVD containing a range of learning resources.

A small group of people have already been trained to use the TOOLKIT and they will be training others.  The focus will be on helping church leaders (and then us) to become more  sensitive to disability and then to reveal how  we can be more inclusive.  Let us practice being thoughtful, welcoming and encouraging first and afterwards the tough issues like having to spend money to refurbish a church or meeting place to improve physical access can be addressed.

The TOOLKIT is packed with practical suggestions.

  • Provide opportunities for persons with disabilities and families to share their faith and life experiences in the church.
  • Car pooling might be one way for a person who could not manage public transport to stay at work.
  • Sitting with children without disability so that parents can spend extra time with a child with disabilities might be all that is needed to ensure a child with learning difficulties keeps up with school work.
  • In respect of health care – Churches can create a caring group for carers to provide practical support like transportation to the hospital, waiting with parents during various tests, caring for siblings during hospital appointments.
  • As a neighbour to a family with a child with disabilities you could encourage your own children to go around and play, and share birthday parties and celebrations.
  • Stand in solidarity with a person with disabilities as they claim their rights to benefits, schemes and opportunities. Perhaps a family would like your assistance to fill up forms or applications, or to meet government officers.
  • Check that your current church leisure activities and events are designed to be a pleasure to people with disabilities as well as their carers.

See it is easy!  We have the tools, now let us get going.

 

 

 

 

 

 

 

Shreya Went to Sunday School

shreya  It was a May evening and I had come with a friend to a pleasant housing colony in South Delhi to meet Shreya and her parents Sujaya and Bobby; and I was excited.

Some months earlier I had written something for a Disability ToolKit to help churches achieve greater disability inclusion and I remembered that earlier Bobby and Sujaya had hinted that their experience in our church with Shreya had been very good so I had asked if we could meet to find out more.

Sujaya and her mother-in-law Eva welcomed us. After a few minutes 18 year old Shreya ambled in wearing a floaty, pink chiffon top, her hair escaping from her plait. She responded warmly in English and Hindi to our greetings and asked her Mum if she should bring water for us, only sitting down after she was sure we were catered for.

Sujaya had already begun to tell us that she attributed Shreya’s social integration to Sunday school. “She was afraid and would cry in a crowd but after going to Sunday school she learned to sit amongst others calmly.”

Although her parents are from Orissa, Shreya was born in Kolkata.  When she was six months old she was detected as having Down’s syndrome; a genetic abnormality where there is an extra copy of chromosome 21.  Such children are late meeting milestones and may have varying degrees of intellectual challenges delaying and limiting their ability to learn.  I wondered how Sujaya felt when she realised her lovely daughter was different “Oh I thought God makes everything beautiful in his own time and so it would be with Shreya” she told me. As we continued to talk I realised that Sujaya’s faith has remained unwavering in that conviction.

A change in Bobby’s work brought them to Delhi. Sujaya says she realised the move was answered prayer as in Delhi there were better opportunities for Shreya.  “Soon after we arrived here the maid took Shreya and her younger brother Shant to play in the park”. Sujaya told us “I think Shreya must have become angry and hit out at another child because from then on everyone called her mental”  “We were so hurt by that” Eva interjected, looking sad at the memory. “She would greet whoever she saw and they would ignore her and keep their distance” Sujaya explained.

A moment later Sujaya’s face brightened as she told us that one day, responding to a ring on the door bell, she found herself face to face with a Telugu woman enquiring if she was the mother of the girl who was a little different. The visitor explained that she was a Christian who lived a couple of blocks away, she had seen Shreya and felt called to visit and pray with the family.  Sujaya was amazed, that a stranger would reach out in Christian love so thoughtfully.  That meeting has turned out to be the central pillar of the way the family prays for Shreya.  “For ten years we have met together every Friday for fasting prayer just for Shreya, praying for the Lord to work in her life.”

“On moving to Delhi, at first we attended a local church but they did not have anything special for children and I could never really join in as Shreya was so fretful.” Sujaya explained.  “Then a friend told us about the vibrant Sunday School at DBF South and we started to go there. I would still sit outside until one day the superintendent suggested that I leave Shreya with the Sunday School teachers and go along to listen to the sermon.  She said the teachers would call me if Shreya was too distressed or things got out of hand. So she started to go to Sunday school. Then one summer, two or three years later, when there were no classes Shreya agreed to come into the main auditorium and since then she has been fully integrated.  The gentle handling of the Sunday School teachers made a huge difference in her life.”

Shreya joined the conversation telling us that she enjoyed going to church. We talked about Disability Sunday when she was given a slot in the Sunday service to read out the 23rd Psalm, which she did with some trepidation but great joy. Then she sang the first verse of her favourite song Aaj ka din for us in her slightly deep, gravelly voice, much to everyone’s delight. Then her brother Shant joined us and cheerfully told us that Shreya loves him and is always on his side in any kind of family discussion.

Bobby laughed as he told us that she loves to pray. “She prays for everyone in the family, all their friends and even the neighbour’s driver. Sometimes she prays for so long we try and stop her by saying “amen” loudly but she will not be deterred.”  We all laughed and then reflected on the fact that here is a young woman who remains like a child because of a genetic disorder but yet she so beautifully reflects Jesus’ teaching that we must all be like little children.

“You know Shreya is improving all the time, she can read from class III books” Sujaya told us.  “Now that she is older we thought we should take her out of her special school and join her in a place for vocational training but our prayers are that she will learn to read and understand the Bible and be a living witness.  When we are praying for that and she continues to learn in school then how can we move her?”

Smiling, Sujaya tells us that Shreya is already influencing people’s lives.  “The Telugu lady has told us that she has experienced so many spiritual blessings since coming in touch with our family which she did because of Shreya”.