Chronic illness -- a response

-- some reflections on biblical narratives and different experiences of disability and chronic illness

Introduction -- varieties of experience

Theology, and indeed most forms of thought, depend on where you're coming from. This is very true in the case of disability and chronic illness, for it depends on whether you are the person suffering from the disability or chronic illness, or whether you are intimately related to them, or, perhaps, have a more distant relationship. What you say about disability also depends on who you are talking to -- if you are talking about the disability to yourself, you will say something different than what you might say to a professional who is assessing you for disability benefit. This in turn will be different from what the same professional talking to other professionals about your disability will say, or what your mother might say to her best friend.

 

I believe that recognizing these differences in perspective can explain a lot of the conflicts around disability and chronic illness and will help us speak more precisely about that particular insight which the experience of disability and chronic illness brings to our shared human life. Recognizing this will help us do good theology. This is why I find the following typology helpful. Down the left-hand side is the person speaking (subject), along the top is the person being spoken to (object).

 

 

I am disabled

My loved one is disabled

You are disabled

I am disabled

This is my unique experience

How will I survive?

 

This is my experience

Will you love me?

This is my experience

I have rights

My loved one is disabled

Can I solve this?

Can I continue to love?

What are we going to do about this?

What does this mean for us?

 

This is our experience

We have rights

You are disabled

What has this got to do with me?

What meaning/profit has this for me?

What has this got to do with me?

What is your agenda?

What are we going to do about them?

What rights will we give them?

This, of course, is a simplification but it gives some idea of the different perspectives. 

What I want to do in this paper is to explore some theological responses to disability and chronic illness, not abstractly responding to the issue but looking at it from some of the different perspectives outlined above. That is, root my reflection in actual experience rather than the lofty detachment of someone who is always observing but never participating. I will be drawing primarily on my own experience as someone who has suffered from chronic illnesses since early adulthood which have led to increasing disability. This gives a particular character to my reflections and makes them different from someone, for example, who has an impairment with which they were born which remains the same and doesn't cause them pain. My main struggles have been with the changing nature of my disabilities and the fact that they involve pain and discomfort. Alongside the grid introduced above we could also look at disabilities from the perspective of the following continuums:
 

No Pain

…………………………………………...............................

Severe Pain

Remains the same

…………………………………………...............................

Constantly changing

Improving

…………………………………………...............................

Deteriorating

Visible

…………………………………………...............................

Invisible

Medical diagnosis

…………………………………………...............................

No diagnosis

Physical

…………………………………………...............................

Mental

Again this helps give us some idea of the differing experiences of disability which will affect the way experience is interpreted and understood, but despite these differences there is a commonality, and the following stories depend on this ability to hear our stories echoed in the stories of others. In so doing we experience a common humanity and build community rather than dismissing and stigmatizing the other.

What I need to say to myself -- the centrality of Job

I have been reflecting on my own disability and chronic illness for many years now. It took me some time to begin this process of reflection, for many years I was just trying to find solutions, but gradually I found the space to stand back from my experience and think about what was going on. This was helpful for my own healing process but also made me realize that people with disabilities have a different perspective on life, they have something to bring which no one else can bring. This is because knowledge is embodied. We all know what we know because of what we experience in our bodies.

 This realization that I had a particular embodied knowledge helped me understand why I felt uneasy with the social model of disability which is the current default position when thinking about disability. The social model of disability has been a political tool used by activists to counteract what they call the medical model. The medical model locates disability in the individual. The social model seeks to overturn this individualism by saying that individuals might be impaired, but they are only disabled because society disables them by not granting them their rights as free human beings. This is okay when you are talking about 'I am disabled' talking to 'you are disabled' and you are in a political fight for your rights, but it is unhelpful when you are seeking to reflect on your own experience. It pushes blame out onto the other rather than genuinely reflecting on my experience. This is why I prefer to talk about an embodied model of disability, and I notice that some others are moving in a similar direction[1].

This move towards an embodied model of disability is my experience. I have experienced gradually increasing disability over my life, but perhaps the social model of disability will make more sense to a deaf person who is happily part of the deaf community with its own culture and language. I have no such community, although I can find shared experience with other people who have a chronic illness, the personal battle with my own illness is much more central. In this context a key struggle is with bitterness. That is, the primary danger of my experience is that I become distorted by self-hatred and anger. My theological task is to find something that recognizes my experience and enables me, in that, to find strength and joy. I have found this in the book of Job, because when I read Job I see my own story reflected in its words. I can say yes I have that struggle, the same anguish, the same tussling with God, the same frustration with so-called friends. Here is my story. It is different, of course, but here, in Holy Scripture, I find my own experience validated and reflected upon in a sophisticated and complex way. For me it is at the very heart of the Bible, my religion and my faith.

Anguish

What is it about Job that speaks so directly into the experience of chronic illness? I want to pull out five main themes. Firstly Job gives voice to anguish 

Let the day perish in which I was born... why is light given to the one in misery, and life to the bitter in soul?

Job acknowledges how painful life can be. He understands the intensity of pain and its mysteriousness, how it leaves you with questions and anguished confusion. This is not tidied up or in any way obscured, it is left raw and unadulterated. It gives voice to that part of the experience of illness and disability which just needs to scream, and in doing so brings liberation. When you read Job you don't have to keep everything nice, you don't have to manage other people's feelings or negotiate with your family or a medical institution. You can just let it be as it is

Mystery

Secondly Job recognizes that the origins of pain can be mysterious

The Lord said to Satan "Where have you come from?" Satan answered the Lord, "From going to and fro on the earth, and from walking up and down on it". The Lord said to Satan "Have you considered my servant Job?..."

 This is the origin of Job's troubles. It takes place in heaven, far beyond anything Job can understand -- in a mysterious and distant realm. The book of Job is, in fact, altogether shrouded in mystery. No one is quite sure when it was written, or who wrote it and even the language is obscure, translators are unsure what 40% of it really means.

Mystery and uncertainty is an essential part of the experience of chronic illness, even if this is difficult for our society to accept, rooted as it is in the quest for certainty. I have found that it is only when I begin to accept uncertainty and that easy solutions are not available, that I achieve the equilibrium which is necessary for healing[2]. Necessary, both because it liberates me from stress and anxiety and because it enables me to make good choices about the options that are available for me to heal, or at least moderate, my conditions. Job never knows why he is suffering, or, why, indeed, he experiences final restitution; and we, also, struggle to understand his story and why it is in the Bible. Mysteries always remain, not least whether Job was healed of his sickness, nothing is mentioned about it in the restitution passage at the end of the book. I have a suspicion that he continued to suffer from a skin complaint until the end of his life...

Misunderstanding

Thirdly Job shows us how people in pain are misunderstood and are therefore persecuted. 

Should your babble put others to silence, and when you mock, shall no one shame you? For you say 'My conduct is pure, and I am clean in God's sight'. But oh that God would speak and open his lips to you and that he would tell you the secrets of his wisdom

Job's cry of anguish is here regarded by his friends as mere babble. It is not respected and listened to, his friends don't think that he's got something new to say because of his unique experience. No it is just mere babble, the ramblings of an old man who has lost his marbles and needs to be corrected. Chronic illness immediately puts people in the wrong even if we don't think illness is a punishment from God; you are still responsible for the mess you have got yourself into. You haven't been living a healthy lifestyle. You haven't been trying hard enough to find a cure. You haven't found the right doctor. You haven't tried the right therapist. You have developed a bad attitude. Whatever is wrong with you, it is most certainly your fault. How could it be otherwise? We all tend to instinctively think a good, healthy lifestyle leads to health and the ability to overcome illness. Goodness and health are symbiotically linked in our brains. This is generally speaking a sensible attitude, if you live a healthy life you are more likely to be healthy. It is a commonsense idea which encourages people to live good, healthy lives and it puts some pressure on ill people to reflect on their life and make appropriate changes. In this way society socializes chronically ill people into taking up a role which helps society cope with them, they must be focused on finding a cure and actively pursue the changes that will achieve this.

 In Job's society this meant that Job had sinned. He must recognize his sin, repent and then receive God's salvation. There are plenty of examples of this pattern being followed in the Psalms (e.g. Psalm 32) but Job refuses it and he is therefore persecuted. He doesn't follow the prescribed role for ill people and, therefore, he is mercilessly criticized. Generally speaking, in our society, we don't use this language of sin, repentance and salvation but the underlying dynamic is the same[3]. You have eaten the wrong food, change your diet and you will be healed. You haven't seen the right doctor, go to the right doctor and he will heal you. Sometimes this works and everyone is happy but when it doesn't work then the norms and values of society are challenged and the ill person is necessarily persecuted and criticized. This isn't because people are particularly horrible, it's just the way it works. Job's friends weren't horrible people, they sat silently with him for seven days, that requires considerable restraint and compassion. But nonetheless their mindset and the culture of their time turned them into persecutors.

Arguing with God

Fourthly Job shows us that it's okay to argue with God. As the dialogues develop Job becomes increasingly focused on God and his friends fade into the background. Job seeks to penetrate into the mystery of God

Why are times not kept by the Almighty, and why do those who know him never see his days?

 Chronic illness and disability tends to do this. It focuses our minds on things that are ultimate and of lasting significance. When 'how can I get healed?' provides no satisfactory answer, then we are forced to ask 'why am I suffering?'. This can be a very dark place and easily lead into a sustained and implacable bitterness. Many people , such as William Blake, have read Job as revealing a tyrannical God or, as it were, the dark side of the Force. I think, in some ways, Job encourages us to hear what we are predisposed to hear in the long, powerful, visceral cries of Job before his God. This is because Job's God is ultimately unknowable: the story which introduces us to Job is always unknown to Job and the God who reveals himself at the end of the dialogues actually doesn't reveal himself at all, he just says 'I am too big for you'. This creates an open canvas onto which we can paint whatever makes some kind of sense to us. 

In the narrative Job is not criticized for arguing with God, or ranting against him -- he is given the freedom to freely express himself but in the end he acknowledges that everything he said is ridiculous "therefore I have uttered what I did not understand". All our words about God are ridiculous but it is necessary to say them, all our words about the uncertainty of illness and chronic disability are usually absurd, a mere chasing after the wind, but it is necessary to say them.

Not knowing and uncertainty is part of the condition of being chronically ill. Yet we still try to understand, we still try to find ways of alleviating and curing the condition, we still try to find meaning in the midst of anguish and perplexity. Job encourages us to engage in this searching and testing, to confront our condition with language and speech, to trust ultimately in that mysterious divine power which is holding us, even while overwhelming our understanding.

Story making

Finally Job encourages us to engage in story making in the context of suffering and chronic illness. 

My wrath is kindled against you [Eliphaz] and against your two friends; for you have not spoken of me what is right as my servant Job has done... my servant Job shall pray for you, for I will accept his prayer not to deal with you according to your folly

Job's honest engagement with his condition, his exploration of the meaning of existence and suffering is accepted over the fixed answers of traditional wisdom. Job's words were ultimately meaningful because they told the truth. This is the only story we can tell to ourselves -- the story of what it is really like, honestly confronting who we are and what we have experienced. This is ultimately of more value than all the 'wisdom' which tells us what we should do and what things should be like. It suggests to us that it really is worth engaging with the struggles brought about by chronic illness and disability, it is worthwhile telling our story like it is, for that ultimately is a prayer which is acceptable to God.

What I can say to my loved one -- the example of Peter

But Job is not the whole story. He provides a touchstone for how we can wrestle with the experience of personal suffering, but what if a loved one is suffering, or has a chronic illness or disability? How can we engage with their embodied experience? Does this very embodiedness mean that they are always alienated from us and we can never understand or relate to their experience?

Loving someone with a chronic illness is a difficult and complex human activity. My father suffers from tinnitus and has, over the years, become increasingly deaf. It is very easy for us in family gatherings to ignore him and his nonparticipation in discussions at the family dinner table. It is almost as if he becomes invisible. But my father's family has a long history of hearing problems and maybe I just don't want to think about them being passed on to me. I am also aware of complex feelings around my wife's chronic illness: infertility. This has been a great source of sadness for her, and also for me, but I am also aware of the ambiguity of my feelings around this issue. I am aware that in some ways I am relieved that I don't have to struggle with being a father, for my own chronic illness feels as if it is burden enough. Yet I feel the loss of an heir, especially as my only brother also has no children and I regret not experiencing parenthood with my wife. It is a loss, but a complex and uncertain one. 

There must always be a mystery about someone else's experience, but Christianity encourages us to engage with the suffering of our brothers and sisters because at the heart of our faith is the suffering of Christ and we are encouraged to in some way identify with that suffering and share in it. This is not to be done as masochists, but, rather in a way which encourages communion and new life. However, relating to the suffering of another, especially if we love them, is not easy and this is well illustrated by Peter's struggles to relate to Jesus, as Jesus was transformed from the authoritative, powerful Son of Man into the wounded one who died upon the cross. Perhaps there is something in Peter's story which can help us reflect on what it means to relate to the loved one who is wounded.

The denial of suffering

When Peter was first confronted with the possibility of Jesus's suffering his immediate reaction was to deny it

This will certainly not happen to you!

We do not want our loved ones to suffer -- of course not, we love them. But if we are honest there are also more complex feelings going on. If someone who is intimate with our suffers or is disabled then that is going to have implications for us. They will no longer be the carefree companion, the reliable stalwart or the happy innocent; rather they will put ever-increasing demands upon our life. This is not something most of us want to think about. We would prefer to tell ourselves a simple restitution story -- they are ill, but soon they will be cured and then things will get back to normal. Sometimes things happen this way but, by definition, chronic illness and disability denies this easy story. Rather than telling ourselves a story of denial and everything getting better we need a different kind of story -- a story of pilgrimage where we can journey together towards a new future[4]. This is something that Peter had to endure. 

Ultimately the question that the illness or disability of a loved one confronts us with is: "Is it possible to love?" When my loved one has abandoned me by falling prey to this relentless and debilitating illness can I find a way of loving them? What was my love based on? What can my love be based on in the new future which I never chose and which I would prefer to deny is happening?

Bravery

When Peter is next confronted with Jesus's suffering he makes a brave response 

Even if they are all made to stumble, me, never will I be made to stumble

This is a response which comes out of the very best part of Peter, he is passionately loving and capable of deep insight. These are not words that Peter is just using to make Jesus feel better, he is not trying to deceive, but they are only words. Words are important but they are not enough, especially when your loved one is suffering. Gary Chapman in his description of five single quote love languages' identifies words of affirmation as one of the love languages[5] but Jesus in his suffering requires more than this. When he is in Gethsemane he requires Peter and the other chosen disciples to give him some quality time and to a certain extent they provide him with this. But Jesus also needs from them one night when they give up their need for sleep as an act of service to the one they claim to love, but for all the brave words and Peter's no doubt genuine feeling of total commitment, they are not able to provide what Jesus needs at this time.

It is, perhaps, inevitable that we will be unable to provide our loved one, who is suffering, with what they really need. Because what they need is to be cured and we will not be able to provide that. And even if they have got to that place where they have accepted their condition and no longer feel the desperate need for a cure we probably won't be able to love them in the way they really need. Brave words are all very well but our natural human weakness will mean that we continue to fail and are just not able to give the love we like to think we should be able to give. To paraphrase Augustine, when loving a person with chronic illness or disability we need to learn to 'fail boldly'.

Abandonment 

Then all the disciples abandoned him and fled

It is always possible to abandon the loved one. Sometimes, even, this is necessary a friend of mine from has suffered from Huntington's Chorea and became so diseased in his mind that he started attacking his family. They had to abandon him to an institution. But often the need to abandon is not so obvious. Maybe we just become overwhelmed and start to become ill ourselves, maybe we become bored and long for a different kind of life, or maybe we meet someone else who is able to provide us with the love we feel we need. We will all, at some time, abandon the one we love. I will leave them when they need me and fail to provide the kind of love which I think I ought to be able to provide.

This is because I am not God. My love is not eternal and my love is not even very steadfast. And it is good for us to remember this. Our society often seems to be based on the principle that all problems can be solved and when they are not solved someone needs to be punished and vilified. But the story of Peter shows us that failure is inevitable and that the experience of failure is coruscating and cruel and doesn't need anyone else to make capital out of it. 

A little while later, the bystanders approached and said to Peter "You're certainly one of them, for in fact your accent shows you up". Then he began cursing and swearing, "I don't know the man".

 ... and he went out and wept bitterly

Yes we have been found out. I am the one who should love and I am the one who has failed. I said I would love but I was unable to. At this point we reach our true humanity and maybe it can be a kind of liberation when we let go of our ability to solve everything and live up to our inflated sense of self. We fail, we mess up and that's the way it is

Reconciliation

Peter has learned what it means to fail. But Jesus does not leave him there. Privacy of Galilee where they had first met and they had enjoyed such amazing experiences together Jesus comes to Peter and asks three questions that are full of excruciating pain and tenderness

Simon, son of John, do you love me?

This is the question that our loved ones with chronic illness or disabilities are always asking us, even if they never verbalize it or do not want to impose on us in this way. Do you love me? Do you really love me? Will you really love me always? And we then have the opportunity to speak from our hearts 

Peter was grieved that he said to him the third time "Do you love me?" And he says to him "Lord, you know everything, you know that I love you"

You know that I love you. Yes we know that the love is there, but the love has to be enacted. It needs to be spoken many times, it needs to flow from times of just being and enjoying together, it needs to be celebrated in acts of joyful giving and toughed out through acts of monotonous service, and it needs to be felt in the warmth of human touch.

We should also not forget how difficult it would have been for Jesus to reengage with Peter in this honest and open way. For love is always a two-way street. The one with chronic illness or disability must also struggle to love in whatever way they are capable of, for it is when the two lovers come together that real lasting love will be born. There will always be failure, but there will always be the possibility of reconciliation and it is perhaps in this continuous dance of failure and reconciliation that the wonderful mystery of love in the context of illness and disability can most clearly be seen.

The ambassador

But the story of Peter does not end here and this gives us a hint that love in the context of chronic illness and disability is not simply contained within the relationship itself and its cycle of denial, bravery, failure and reconciliation. 

Peter stood up with the eleven and raised his voice

Peter becomes ambassador for this same Jesus whom he saw suffer. That experience he had, wrestling with his love for Jesus as he suffered, becomes a central part of his identity and part of the unique gift that he has to give to the world. So he says in 1 Peter chapter 4

Therefore since Christ has suffered in the flesh, you also arm yourselves with the same frame of mind, because the one who has suffered in the flesh is free from sin, so for the time that remains in the flesh he lives no longer by human longings, but by the will of God.

Of course the suffering of Jesus is different from the suffering of our loved ones and we will not draw the same conclusions that Peter drew from his experience. The disability of our loved one, may, for instance not be a negative experience for our loved one -- it might bring a joy to them even if we struggle with it. But this is precisely the point, each experience of illness, impairment and disability brings its unique gift to the world. This is something that can be shared by the person themselves, but also by those who have loved and been alongside them, they can become ambassadors for that unique gift which this person has brought into the world. This was the great gift that Peter brought to us and we can follow in the same footsteps. We can share the story in a simple and informal way, we may become involved in a group which is caring and supporting people with similar issues or we may become involved in political campaigning for justice and changing society. In all these ways we become ambassadors for that experience which it has been our unique privilege to share.

What do I say to 'the other'? - the example of Jesus

But what about those people who are distant from me, who I do not know intimately, who I meet at work, at church or on the street? What do I say to them? How do I relate to the disabled or chronically ill person who is 'the other'? 

You may find this language of 'the other' unsettling. Are we not all brothers and sisters, do we not share a common humanity? Yes, but we need to recognize that other people have a different experience from us and we can't be intimate with everyone, we can't know everyone from the inside but we are still called to show them love and work together with them for justice and peace. I always remember an encounter I had Vauxhall station. It was late at night and I was traveling home but I was approached by a man with learning difficulties who was trying to travel across London and he wanted my help. I tried to react positively and showed him the way to the underground station, but I did not feel I could travel with him, I could point him in the right way, treat him with respect but I could not undertake his journey for him. Yet he still remains with me as a vulnerable man caught up in the busy swirl of London. Was the love I tried to show for him adequate? Was my attitude patronizing? Could I have done more? This is a question which people with disabilities and illnesses always raise for us -- fundamentally it is the question "What has this got to do with me?"

One answer to this question is to make it the responsibility of people who are paid to work with vulnerable people. That is the relationship is professionalized. I was briefly involved in this world when I had a placement at the Charlie Chaplin adventure playground in Kennington which catered to the needs of children with special needs. I learnt a lot from my encounters with these diverse individuals which ranged from a sweet gentle Pakistani girl, through violently aggressive young boys to the autistic young man who became obsessed with a hole in my shoes. Certainly professionals have a role to play but this does not absolve us from the responsibility to work out our own relationships with disabled people, vulnerable people and people with special needs... or however we choose to frame them. 

Often we stigmatize these 'others'. When I was at school I used to enjoy playing wargames with metal figures and one of the things which used to do to amuse us during particularly boring lessons was to draw pictures of imaginary metal figurines inspired by the supposed inhabitants of mental hospitals which surrounded our small town. In a very tangible way we were stigmatizing and reimagining 'the other'. As we grow older we generally learn that such stigmatization is not acceptable, so our default position switches to that of ignoring 'them'. Occasionally we might develop some charitable relationship to these 'others', and this may provide the opportunity for genuine relationship, but it often falls into the trap of being patronizing. 

Our relationships with 'the other' are therefore complex. Can we find a way of recognizing that people with disabilities and chronic illnesses are genuinely 'other', because their embodied experience is different from ours, and yet holding this together with a sense of human solidarity where love and justice become genuine experiences which move us beyond stigmatization, ignorance and paternalism.

The example of Jesus

The example of Jesus in relationship to people with disabilities and chronic illness is not unchallenged. I remember watching a TV program some years ago which examined the claims of the US evangelist and healer Morris Cerullo. One of these events was picketed by disabled people and one of them attacked Jesus in scathing words because of his supposed Cerullo like campaign to put right all the disabled people of Galilee. This made me reflect and I returned to the Gospel of Mark to examine what Jesus is actually betrayed as doing.

What I found there was something very different from a Morris Cerullo crusade. Jesus never called people to come to him so that they could be healed. Jesus goes out to people in order to preach and teach but they come to him in order to be healed. 

Jesus came to Galilee proclaiming the good news of God and saying 'The right time has been fulfilled in the kingdom of God has drawn near. Repent and believe in the good news'... When it grew late, when the sun set, they brought to him all those who are in a bad way, including those who had demons (Mark 1: 14-15 & 32)

Jesus is often careful to ask people what they want and the significance of this is pointed out by Ken Bailey in the case of blind Bartimaeus (Mark 10:46-52). Bartimaeus clearly earned his living by begging and because of this he had a clearly defined role in society, he was the person that people could give to and so demonstrates that they were upright and righteous people. Because Bartimaeus had a clear physical disability he was an ideal person to provide this role. If Jesus took away his disability then he would no longer have a role to play in society but would simply become another unskilled laborer. Jesus does not impose healing upon him but make sure that he reflects on what the implications of his healing will be.

What Jesus can do

The Jesus is portrayed in the Gospel of Mark, therefore, as someone who had a particular ability. This was the ability to heal. It was not his primary purpose but it was important because it authenticated his claim to be bringing in the Kingdom. Nonetheless his ability was constrained, it depended on the faith of community in which he was located. This was not an individual faith, as is demonstrated in the case of the paralyzed man who was lowered through the roof of the house, he was healed because of the faith of his friends not his own personal faith (Mark 2:1-12). And Jesus was not able to perform many healings in his hometown of Nazareth because they lacked faith in him (Mark 6:1-6). The only occasions when we see Jesus taking the initiative in terms of healing is in the case of demon possession, here the demon in possession of the individual is portrayed as taunting and confronting Jesus, so Jesus responds calmly but with authority often negotiating with the demon before removing the demon from the afflicted person (Mark 1:21-28). In another instance Jesus appears to be more directly interventionist. This is when Jesus heals Peter's mother-in-law when he simply walks into the house, saw her, touched her and healed her (Mark 1:29-31). But it seems significant to me that this was in a private, intimate context and whenever Jesus' healings are described in detail he never imposes upon the sick person but always talks and negotiates with them. Of course this is always taking place in a different cultural context from our own. We might interpret the cases of demon possession differently, but Jesus working in his own context acts respectfully and does what he can do only with permission. 

[It is worth noting that the portrayal of Jesus in Luke's Gospel tends to shift away from this pattern of people coming to Jesus to be healed. In Luke 13:12 Jesus calls a woman over to be healed. It seems significant that this is in the context of Jesus's arguments with the Pharisees about the Sabbath, he engineers the healing to confront the Pharisees with their careless hypocrisy. Where Luke's healing stories follow Mark there is the same emphasis on coming to Jesus, elsewhere Luke portrays Jesus as being more masterful and less engaged in dialogue.]

When Jesus cannot act

Jesus was not always able to act successfully or achieve what he wanted to achieve. In the case of the religious authorities of his time he was not able to enlighten them or make them see things from his perspective. Clearly this was his aim but they resisted him even though he provided stinging critiques of their ideology and practices (Mark 7:1-23). At other times people would come to him and ask him to do things -- as for instance the mother of James and John who wanted to make sure that her sons became his right-hand men in the coming Kingdom, Jesus replies bluntly that he did not have the power to decide that (Mark 10:32-45). He was aware of his limits and what he could not do. He was also aware of what he did not want to do, but he could have his mind changed, as in the case of the Syrio-Phoenician woman. Jesus didn't see his mission of healing extending beyond the boundaries of Israel but this woman's wit and faith made him bend his own rules (Mark 7:24-30).

Jesus, therefore, did what he could do. He is described as having a remarkable power to heal and if we have that same power, providing we respect people and their own agency, then no doubt we should do the same. But this is not our normal experience chronic disability and illness by their very nature are not curable, but I think we can still learn from Jesus.

Acting in the way of Jesus

Do what you can do

I often get the impression that Jesus didn't really want to be a healer. He becomes frustrated with demands for signs and miracles, what he wants is for people to listen to what he has to say and live lives of radical compassion. Nonetheless he can heal, so he does and it authenticates his mission. Similarly it can be difficult working with people with disability and chronic illness, we are particularly aware of the danger nowadays of being patronizing and the need for people with disabilities to be the agents of their own lives rather than constantly dependent. Nonetheless we should still do what we can do, particularly because this opens up the possibility of genuine relationships which can transform us through learning from the unique embodied experience of people with disabilities and chronic illness. So we may just be called to show kindness to people who we encounter, we may raise the issue of disabled access at PCC meeting or support political change. It all depends what we can do, but activity is more important than good intentions.

Respect and Negotiation

I have illustrated the way Jesus entered into dialogue with the people who came to him for healing and this provides us with an excellent model of how to relate to people with disabilities and chronic illness. Let us never assume we know what 'they' need. I have mobility issues but stairs are never a problem for me and yet people constantly think that they will be. I can't say this really bothers me but always reminds me of the way we make assumptions about disability. If we are to do what we can do for and with people with disabilities, then we must respect their agency and negotiate with them before we do anything.

I also am wounded

Jesus became the wounded one. He still wears the scars that he suffered at Calvary and ultimately shared in the suffering which he encountered in Galilee as he taught and healed. In this process 'the other' becomes his companion in suffering and we too must engage our own woundedness. Which is not to say we are all disabled -- the fact of otherness does not disappear, but we are all wounded humanity and only when we recognize that, will we be able to move towards the Kingdom that was the true focus of Jesus's mission, and not his unusual ability to heal.

Some conclusions

What can we draw from these stories as we seek to develop a practical response to chronic illness and disability, especially within the Christian community? A few reflections

Tell the story

The stories of chronically ill people tend to be submerged both with in congregations and more widely. Illness tends to isolate and it is easy for people to be forgotten and their voice never heard. But people with chronic illnesses and disabilities need to have the courage to tell their stories and the people around them need to create the space in which that story can be told. If these stories were told and listened to seriously then many things would start to change and we would achieve a different perspective on what it means to be human.

Accept failure

Chronic illness can't be solved. It places tremendous demands on anyone involved with it and it is impossible to get everything right all the time. We need to learn to accept our own failings in dealing with our illnesses and disabilities, and recognize that we will make many mistakes as we come alongside people in their struggles.

Get a bigger perspective

Illness and disability can shrink us, make us focus on our immediate needs and present situation. My experience is that this is not helpful for the healing process and corrosive of my mental health. In the Christian tradition we look for that time when all illnesses will be healed and all pain done away with in the eternal kingdom of God. This is not pie-in-the-sky but a genuinely wider perspective which brings us both comfort and strength for the present day. Things will not always be like this, they will change. Our small successes now, our joyful moments in the midst of struggle are firstfruits of a final victory. This eternal perspective is echoed in all attempts to look beyond our immediate situation: when we help another person who is suffering, even though we are suffering ourselves, when we change the attitude of a community to disability, when we struggle for the political rights of disabled people. These all take us out of ourselves and enable us to become part of a wider humanity and thus achieve a very tangible salvation.

James Ashdown 2010


Bibliography on chronic illness and disability

 

Ann Callender Paths Through Pain DLT 1999
Personal story of how the author learned to cope with chronic pain learning from the examples of Jesus, St. Paul and Teresa of Avila and Therese of Lisieux
 
Arthur Frank.  The Wounded Storyteller.  The University of Chicago Press 1997
A very helpful account of the way people tell stories about illness.  It underlies much of the thinking in my work
 
Clair Davies.  The Trigger Point Therapy Workbook.  New Harbinger Publications 2004
A very practical and clear guide to the self massage of trigger points
 
Don Goldenberg.  Chronic Illness and Uncertainty.  Dorset Press 1996
An excellent examination of uncertainty and chronic illness by one of the pioneers of the Fibromyalgia diagnosis who is also a sufferer
 
Ivan Illich Limits To Medicine, medical nemesis: the expropriation of health Marion Boyars 1995
Not an easy read but a classic critique of modern medicine
 
Janet Travell and DG Simons Myofacial Pain and Dysfunction: The Trigger Point Manual.  Lippincott, Williams and Wilkins 1992
The classic medical textbook on trigger points
 
Jean-Claude Larchet.  The Theology of Illness.  St Vladimir Seminary Press 2002
A profound meditation on illness from an Orthodox Christian perspective
 
Jonathan Baxter Wounds That Heal – Theology, Imagination And Health SPCK 2007
Variety of essays on Christian healing ministry coming out of the experience of Holy Rood house
 
Kristin Barker.  The Fibromyalgia Story.  Temple University Press 2005
A useful sociological analysis of Fibromyalgia and its development as a diagnosis
 
Mary C. Earle Beginning Again – Benedictine wisdom for living with illness Morehouse Publishing 2004
A very useful and practical guide to living with chronic illness.  Suggest discovering your rule of life and explores other Benedictine ideas
 
Michael Mayne.  A Year Lost and Found.  Darton Longman and Todd 1987
An often reprinted account by an Anglican clergyman of a year suffering from ME in the 1980s.  The medical situation has moved on now but the profound theological reflection keeps it relevant.
 
Sarum College The Faith Journey of Impaired Pilgrims Sarum College 2006 (Tel: 01722 326899)
An excellant series of stories and reflections from people with chronic illnesses
 
Wayne and Sherri Connell.  Have a Little Faith!  -- a guide to ministering to believers living with chronic illness and pain.  Where Is God Ministries 2004
A modest booklet but a very moving and insightful introduction to the evangelical Christian experience of chronic illness www.whereisGod.net
 
WH Vanstone The Stature Of Waiting DLT 1982
A theological classic reflecting on the passivity of Jesus during his passion.  Relevant to experiences of chronic illness when we are forced to become passive and wait
 
Allen Verhey Remembering Jesus in the Strange World of Sickness in Remembering Jesus Eerdmans 2002
A very useful ethical reflection on suffering and care for the suffering exploring biblical and theological responses
 
Roy McCloughry and Wayne Morris Making a World of Difference -- Christian Reflections on Disability SPCK 2002
 
Arne Fritzson and Samuel Kabue Interpreting Disability -- a Church of All and for All WCC publications 2004
http://jeffmcnair.com/
A very good blog and website about Disabled Christianity. A good starting point which gives access to American


[1] This is a contentious issue. Jane Brett The Experience Disability from the Perspective of Parents of Children with Profound Impairment: Is It Time for an Alternative Model of Disability? Disability & Society 17, seven, 2002, page 825-843 develops what she calls an Alliance model. On the other hand The Social Model of Disability Repossessed by Vic Finkelstein: Manchester Coalition of Disabled People– 1stdecember 2001 seeks to dispute this kind of revisionism

[2] See Don L. Goldenberg book Chronic Illness and Uncertainty -- a personal and professional guide to poorly understood syndromes (what we know and don't know about fibromyalgia, chronic fatigue, migraine, depression and related illnesses) Dorset Press Newton Lower Falls 1996

[3] For the working out all of these issues see Arthur Frank The Wounded Storyteller

[4] Again see Arthur Frank ibid

[5] Gary Chapman The Five Love Languages Northfield Publishing: Chicago 2010