From nucleus - May 2019 - a biblical approach to disability
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We seem to have come a long way in our view of disability. Disability is a 'protected characteristic' under the Equality Act 2010. A person with a disability can legally expect to have equal access to employment and services. And yet today, many people with disability feel disempowered, vulnerable and even abused in our society. In reality, equal access to employment, transport, leisure and even healthcare facilities is a myth. Repeatedly in my practice, patients tell me 'We've had to fight for everything we've got' as they struggle to adjust to the 'new normal' of life with chronic impairments. Some described the experience of leaving acute care and returning to the community with new disabilities as like 'falling off a cliff edge'. They found the brutal reality of life-changing impairments was combined with the discovery that support and services were often paper-thin or non-existent. For all the fine sentiments about caring for people with disability, society is failing. Furthermore, if we look beyond the horizon of our own domain, we see an ocean of suffering worldwide where the disabling effects of disease are feared and loathed. How should a Christian respond? What is the biblical view of disability? Is there a Christian distinctive and does it matter?
Fundamental to biblical theology is the understanding that we as humans are made in the image of God. (1) Human beings are beautiful, creative, passionate, ingenious and energetic - made to inhabit and subdue the world. But all is not right. The image of God is marred by sin, allowing death and decay to enter. We find ourselves sitting in hospitals and clinics the world over, pondering and struggling with the consequences. But equally fundamental to the biblical narrative is the knowledge that the God we worship is committed to restoration. (2) It was not meant to be this way and he has determined that ultimately, by his own sacrificial giving, perfection will be restored and 'sorrow and sighing will flee away'. (3) The Christian clinician therefore has a world view that asserts that there is an ultimate hope. All this suffering is not in vain. It is not the end of the story. This hope gives resilience and endurance - a key factor in being able to care for people with disability, day after day without being overwhelmed with despair.
This hope is rooted in present reality and not 'make believe' or artificially triumphalist. When impacted with grief for his friend Lazarus's premature death, Jesus wept. (4) We have a God who intimately knows the pain of abuse, loss and suffering. Ironically, the Old Testament law that seems to discriminate against any form of disability in the priesthood (5) is in fact there to emphasise that the One who was to come would indeed be perfect, but would then give up that perfection by taking on the pain, grief and physical consequences of our sinful state. (6) But what did this actually look like as Jesus met people with disability, and how might that affect our attitudes today?
Repeatedly, Jesus had compassion on men and women who were made in God's image yet suffering with broken bodies. In contrast, healthcare systems today seem to have become self-seeking and populated by clinicians who see patients as 'getting in the way of them doing their job'. That may be stereotypical, but Christian clinicians should be different, with the spirit of Christ's compassion at their core.
Jesus never exploited people with disability. There was no media show around those that were healed. 'Keep it quiet' he said on many occasions. (7) Jesus never used people with disability to gain credibility. How different to the attitude I sometimes cherish - to obtain fame and recognition for my work with the marginalised, even in Christian circles. True Christlike service seeks no recognition or reward at the expense of those suffering with disability.
Restoring autonomy and control to those who had lost it was central to his ministry. How many times did he ask the person with obvious rehabilitation needs 'What do you want me to do?' (8) Jesus models servanthood. He takes away the power gradient, making no assumptions about perceived needs. The person is central.
Jesus was, and is, the ultimate advocate. Blind Bartimaeus is being silenced as an embarrassment until Jesus asks that he be brought to him. (9) Ultimately that spirit of advocacy takes Jesus to the cross. A Christian clinician cannot sit idly by and watch a vulnerable fellow human be treated unfairly, simply because they have no voice, or mobility or access to social media. The spirit of Jesus's advocacy drives the Christian clinician to push the boundaries for access to services and vocation.
Note too, that Jesus separates guilt from disability. 'Neither this man sinned nor his parents', he once said, indicating that disability is part of a bigger picture. (10) He soundly rules out the primitive notion that 'the disabled are cursed'. That attitude powerfully devalues the person with disability, virtually mandating neglect or disinterest. But Jesus says this is not the case. The Christian clinician does not struggle with judgmentalism towards the person with disability.
But Jesus makes the inextricable link between our fall from grace as humans and suffering, and so makes the declaration that forgiveness is an integral part of healing. (11) A Christian clinician will always know that the deepest human need is not restoration of the body, but restoration of peace with God and so will be praying for that special grace for those they treat.
This is the nature of a Christlike attitude to disability, derived not just from a cognitive apprehension of the character of Christ, but because we have 'the mind of Christ.' (12)
However, for the individual coping with the acute realisation of loss of ability there is a different perspective. One might expect to see a range of reactions. Guilt, either real or imagined, can be framed by questions such as, 'Is it my fault?', 'Is God angry with me?', 'If only I hadn't…'. Fear might emerge around what the future holds, coupled with grief for the loss of what was, or might have been. Shame and loss of self-esteem might be expected, particularly in relation to personal care issues such as incontinence. Coupled with this may be anxiety about acceptability - 'Will I still be loved?' - and vulnerability with the loss of power. Small wonder then that people predicting their response to being disabled might fearfully say 'I would never want to live like that.'
The surprising thing, however, is that in practice these reactions are not usually those immediately seen. They seem only to be brought out as trust is built with the clinician. Such trust is generated by the qualities that we have already mentioned and that Jesus modelled. This investment of trust carries huge responsibility, which the Christian clinician carries with the fear of God before their eyes, knowing he is intensely on the side of the vulnerable. Furthermore, those looking in from the outside may see things very differently from the person dealing with disability.
The so called 'disability paradox' describes the phenomenon that many people with serious disabilities report that they experience a good or excellent quality of life, when to most external observers they seem to live an undesirable existence. In one study, more than half of a group of interviewees with moderate or severe disabilities reported 'excellent' or 'good quality of life'. (13) In another national survey from Australia, 40% of people with profound or severe activity limitation regarded their health status as 'excellent', 'very good' or 'good'. (14) Analysis of the factors behind this suggests that a person's impairments and their perceived health are not directly related. (15) In practice, this means that the likelihood of 'meaningful recovery' from the patient's point of view should not be judged on the simple measure of the severity of a person's impairments; the context is all important.
Another strand of thought in the rehab literature is the tension between 'restoration', that is getting back to 'normal', and 'transformation', that is working with the 'new normal'. In practice most people start with the goal of complete restoration but make a journey towards transformation with time. A biblical metaphor has even been used to illustrate this idea, that failure to get back to normal may not be second best. (16)
There is also growing interest in so called post-traumatic growth, a controversial observation that positive psychological effects can be seen following trauma. That there seems to be such a phenomenon is clear, but understanding what it really is, and how it comes about is still open to question.
But what does the Christian clinician make of these counter-intuitive processes? First, they resonate with biblical thinking that an individual is more than just a perfect physical being. There is a bigger narrative at work in each of our lives than the pursuit of physical perfection and prosperity. People have intrinsic value. Outcomes can be unexpected and don't just depend on 'getting back to normal'.
Second, these processes impact care planning. Frontline clinicians may see only hopelessness and loss in the acute setting. This may wrongly lead to early conclusions about the futility of treatment. Raising awareness of the range of long-term outcomes is important, and whilst not a purely Christian view, it is an important part of advocacy for the vulnerable, which our Lord expects of us.
Seeing a patient as 'incurable', or their situation as 'hopeless', profoundly affects clinical practice. For example, the management of disability is simply not seen as the core business of acute medicine. Team members may not be interested in tackling complex needs, and junior doctors cannot be blamed - rarely does disability management figure in examinations. Who has ever heard of an OSCE long case looking at neurogenic bowel management? That is someone else's job. Repeated meaningless entries in the notes like 'Awaiting rehab' are evidence of the disconnect. Does anyone appreciate what other team members are actually doing? Or is there a hint of arrogance that such things are secondary? Team relationships are understandably not warmed by this and patients suffer. This is not the image of Christ.
Negative attitudes toward disability also pervade the upper atmosphere of healthcare planning. Enablement and care services are easy to neglect and slash. People with disability have only limited resources to fight their corner.
The Christian clinician, however, sees the person in the 'eye of the storm' as absolutely worthy of equal esteem. It is hard to see how Christians cannot speak up and tackle these deep-rooted distortions in clinical practice, once we understand Jesus's values.
It is remarkable that the Gospels give us so much information about how Jesus dealt with people with disability. Surely this is there for a reason? Despite all our best efforts, secular human beings still struggle with disability in themselves and others. Jesus models a different way, in which he invested his body and blood. As disciples, we should follow him.
Steve Sturman is a consultant in rehabilitation and neurology in Birmingham, and CMF's new Associate Head of Graduate Ministries
1. Genesis 1:27
2. 2 Corinthians 5:19
3. Isaiah 35:10
4. John 11:35
5. Leviticus 21:16-23
6. Isaiah 53:4
7. Mark 8:26
8. Matthew 20:32
9. Mark 10:46-49
10. John 9:3
11. Matthew 9:2-7
12. 1 Corinthians 2:16
13. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Social Science Medicine April 1999;48(8):977-88
14. Australian Bureau of Statistics. Canberra: National Health Survey: Summary of Results, 2007-2008 (Reissue). Table 10: Disability Status. bit.ly/2FDMUGh
15. Fellinghauer B, et al. Explaining the disability paradox: a cross-sectional analysis of the Swiss general population. BMC Public Health 2012;12:655 bit.ly/2HLLiuX
16. McGrath J. Beyond restoration to transformation: positive outcomes in the rehabilitation of acquired brain injury Clin Rehabil 2004; 18:767-775