Living with a vulnerable body in a world that needs the justice that lies at the heart of the gospel.

12 MINUTE READ

From Luke’s Journal 2018 | Disarming Disability | Vol. 23 No. 2

I was introduced to disability in 2010 when I had an accident that broke my fourth and fifth cervical vertebrae. It was two weeks before my 40th birthday, and I was on holidays with my wife and teenage sons in Nowra, when we decided to visit a local church that had set up a bicycle and skateboard jump that landed into a pit of foam (like you may see at a gymnasium).

I was the type of father who joined in with his children’s adventures, but on my first attempt I landed upside down and knew immediately that my life was changed forever.

After the arrival of paramedics and an extremely cautious journey out of the pit, I was flown by helicopter to Prince of Wales Hospital in Randwick. From ICU to the spinal unit, I was to spend seven months in hospital, learning to live as a C5 incomplete quadriplegic.

Theodicy

As an academic theologian, I had theoretical answers to the problem of pain, but spinal cord injury (SCI) made the abstract concrete. I had privileged access to theological friends, and over those seven months in hospital we spent countless hours wrestling with theodicy, the formal label which translates as defence of the faith. CS Lewis famously summarised the problem of pain as follows:

“If God were good, He would wish to make His creatures perfectly happy, and if God were almighty He would be able to do what He wished. But the creatures are not happy. Therefore, God lacks either goodness, or power, or both.”

In the years since leaving hospital, I have thought deeply about my response to Lewis’ question, as have most Christian healthcare workers dealing with the suffering they see on a daily basis. And while there is no final answer to the problem of pain, there are ways of thinking that can help us to navigate the issues. Given the restrictions on the length of this article, and at the risk of being a boasting salesman, I refer readers to my book Crippled Grace for a deeper analysis. But in sum, a Christian response to the problem of pain will begin by highlighting sin, since endless human misery is a product of the harm we do to one another. 

“Why, God, have you caused or allowed my impairment?”

There is a tendency today to explain away sin, and it is true that our bad choices are at least in part a product of our genetic make-up and the environment in which we are raised. We are victims of sin as much as we are perpetrators. But to explain away sin is to refuse to take responsibility for personal and systemic evil, and so to do nothing about it. Depending on how we define it (a topic to which we shall return), disability is a product of the myriad sins of systemic social injustice.

But sin doesn’t explain my injury, which was a product of bad luck and the inherent fragility of our skeletal system, just as it says little about babies born with an impairment, or the hardship that attends cancer. Indeed, the cyclical processes of evolution that gave rise to the wonders of human life can be brutal, and to be human is to be born through a mother’s pain, to grow and flourish but also to be at risk of illness, disability, countless hardships and, in too-quick time, to die. Just as through this natural cycle God created an awe-inspiring universe and a beautiful earth, so does another answer to the problem of pain assert that God brings good things out of suffering. 

There is deep meaning in the greater good argument. My injury has gifted me with surprising benefits, as I have experienced the love, prayer, and generosity of family, friends and the numerous professionals responsible for my care. It is only in the struggles of life that we learn the virtues (such as love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control – Galatians 5:22) and shape the stories that make us what we are. What would our world look like without the wisdom of doctors, compassion of nurses, support of chaplains, diligence of carers, and so on? 

But there is a difference between the assertion that good can come out of pain and evil, and the claim that God causes evil for a greater good. The latter, which has God responsible for sexual abuse and the horror of human warfare, makes of God a monster, unworthy of faith.

A final response suggests that, while there is no complete answer to the question, ‘Why, God, have you caused or allowed my impairment?’ other than that the wonders of life go hand in hand with its vulnerabilities, we might ask a different question. Rather than “Why?” we might explore the deeper question, “Where are you, God, when I suffer?” The gospel answers that He is with us in our suffering, and promises resurrection. 

“The cross is a promise that He is with us in and through our hardship, and the resurrection is the promise of new life and the deep joys of faith, hope, and love.”

So fully did Jesus share in our pain that in the garden of Gethsemane he asks God to “take this cup from me,” and on the cross cries “My God, my God, why have you forsaken me?” (Mark 15:35). The cross is the sign that God knows our suffering, even our godforsakenness. The cross is a promise that He is with us in and through our hardship, and the resurrection is the promise of new life and the deep joys of faith, hope, and love.

If Jesus is a model for Christian health professionals, it is not in his disciplinary skill. I suspect the medical board would react poorly to a doctor who spat on the ground and rubbed mud in a patient’s eyes. It is in the realisation that the underlying call of all health workers is to be truly present with their client, especially at those times when they feel godforsaken. 

Models of disability

There is more that might be said along these lines, but by concentrating a theology of disability on theodicy, we assume that the problem of disability is a person’s impairment and the functional losses that result from it. This makes some sense in the case of a spinal cord injury, but the ground-breaking insight of the twentieth century disability rights movement was that disability is a social problem. 

The medical model of disability, which still predominates in Western culture (especially in our hospital bureaucracies), locates the problem of disability with the individual, in which case its solution is medical intervention. The social model argues that disability is a product of societies that are shaped to exclude non-standard bodies and brains. People with impairments are disabled when the physical environment prevents their participation, such as when buildings are blocked by steps, social events fail to provide translation services to enable communication for people with deafness and blindness, and educational systems are set up to meet the needs of supposedly average students, but not to accommodate people with learning difficulties. 

“Social disadvantage is a cultural problem, but cultures are sustained by the values of prominent individuals and institutions, and religion plays a vital part.”

More broadly, disability is a product of a cultural environment that sustains unjust and exclusionary social conditions. Even with the implementation of the NDIS (which is at risk of political interference and bureaucratic bungling), people with disabilities in Australia continue to face disproportionate social disadvantage. They are more likely to be unemployed, to live in poverty or with below average income, and to struggle to find appropriate housing. Given that health is socially determined, they are also more likely to self-report poor health, suffer from mental illness, and be subject to chronic health conditions (unrelated to their impairment). Their life expectancy is lower than the general population. More broadly, people with disabilities experience day-to-day prejudice and paternalism, evidenced by the fact that they are almost twice as likely to lodge complaints with a Discrimination Commissioner than are persons from any other category (such as sex or race).

Social disadvantage is a cultural problem, but cultures are sustained by the values of prominent individuals and institutions, and religion plays a vital part. Theologians of disability have thus explored ways in which faith can be rallied in the pursuit of justice and social change. Before that is possible, however, religions must face their own culpability. 

Crip theology

Crip theologians, who model their theological advocacy along the lines of feminist theology, have been unafraid to note the ways in which the Church sustains disability prejudice and paternalism, not only by the inaccessibility of their ancient buildings, but by ministries that treat people with disabilities as objects of pity and charity rather than coequal ministers in the priesthood of all believers. When was the last time you heard a sermon from a senior pastor in a wheelchair or with cerebral palsy (presuming they can access the pulpit), or worshipped with a song leader who has an intellectual disability? 

The scriptures can and should be a source of disability empowerment. Even so, they are products of an ancient culture, and can be used to sustain prejudice. There are obvious examples, such as the insistence in Leviticus 21:18-23 that a person who is blind, lame, crippled, or a dwarf cannot approach the altar as a priest lest they desecrate the sanctuary. Some Christians are loath to admit that the scriptures are a product of their time, that inspiration is always discerned in the interplay between historical context and divine self-disclosure. The same scriptures that are read with sexist ideology to restrict female ordination and entrench a woman’s submission to her husband can be used to keep people with a disability away from the structures of ecclesial power.

In my Pentecostal tradition, the stories of Jesus’ healing can make living with a disability difficult, adding the challenge of failed faith to the complications of impairment and prejudice. A person with a permanent disability or terminal illness is the elephant in the room when healing is on the charismatic agenda. Indeed, there is a need for a more careful reading of the Gospels. Jesus’ healing ministry was neither absolute nor permanent (he did not heal everybody, and everyone he touched subsequently suffered and died). Further, the purpose of his healing was symbolic, highlighting his unique identity as Messiah, and social, oriented to liberating the poor, oppressed, sick, and disabled from entrenched social injustice. 

For example, Jesus’ healing of the woman with the issue of blood (Luke 8:43-48) is not merely the offer of a cure that reveals the power of God. It also confronts millennia of disabling exclusion that made bleeding women unclean. We model our ministry (or healthcare work) on that of Jesus, not by performing healing (although prayer can have miraculous effect, as can the march of medical science), but in our passion for justice, compassion for suffering, and welcome for the excluded.

“Jesus’ healing ministry was neither absolute nor permanent (he did not heal everybody, and everyone he touched subsequently suffered and died).”

Just as artists and theologians have explored the idea of a black Christ, and feminists the female Christ, so can a theology of disability envisage Jesus as disabled. Isaiah 53:2-3, for example, describes the Messiah as having;

“…no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by mankind, a man of suffering, and familiar with pain. Like one from whom people hide their faces, he was despised, and we held him in low esteem.” 

These are characteristic ways of describing disability, especially the marginalisation and rejection that is central to the social model. That the Gospels elevate the crucified Christ, who after the resurrection retains the scarred holes in his hands, feet and side, is testimony to the divine reversal that is the heart of the gospel; the last shall be first and the seemingly weak will manifest Spirit-filled power.

Conclusion

There is much more to say but no more space to do so. This article is written to medical professionals, so let me finish with the question, what has any of this to do with you? We might respond by exploring the interplay between the medical and social model of disability and, rather than set these two perspectives against one another, keep them in dialectic tension. Disability is both an embodied reality and a social condition. What doctors do matters, but it is not the whole story.

Although I have not touched on it here, the focus of my writing has been the intersection between disability and virtue ethics, and it is my view that a theology of disability invites experts to reflect upon the virtues of character needed, in addition to disciplinary expertise, for effective long-term work with people with disabilities. Since paternalism is at the heart of disablement, experts need to learn the too rarely practised virtue of humility. Qualifications and experience cement expertise, but it is the disabled client who is the real expert in her own body and the challenges of her social location. 

Thus, you might consider your job an exchange. You bring an expertise to address a specific issue, and the client brings insight into what it means to live with a vulnerable body in a world that continues to need the justice that lies at the heart of the gospel:

“The Spirit of the Lord is on me, because he has anointed me, to proclaim good news to the poor. He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to set the oppressed free, to proclaim the year of the Lord’s favour.” Luke 4:18-19

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