The Enabled Life

Christianity in a disabling world

Roy McCloughry

• Publisher: SPCK
• Year: 2013
• ISBN:
  9780281071111
• Topic: Theologie & Religion
• Subtopic: Christlicher Dienst

As a much-published author, social commentator and academic, Roy McCloughry is ideally placed to make the latest theological thinking about disability accessible to a wide audience. As a person living with epilepsy who regards his condition, as a 'strange gift' from God - he brings rich personal experience of what it's like to live as a disabled person in a world where acceptance frequently relies on the appearance of normality. Attitudes in the Church too can be strangely unsettling. People are often embarrassed or fearful in encountering disabled people, who are, if the Bible is to be believed, at the heart of the kingdom of God. After all, God does not want us to conform to society's stereotype of what is normal, but to celebrate diversity by delighting in who we are. We do not need to be 'cured' to know God's healing, empowering love in our lives. Indeed, as Roy's deeply moving interview with Jean Vanier underlines, the 'abled' may well discover their true humanity through learning from those whose humanity has sometimes been called into question.

1

Two worlds

A woman who is a wheelchair user is accustomed to others treating her as if she is only half there. People often talk over her head to the person pushing her wheelchair. Then one day she breaks her leg. She is still in her wheelchair but now has her leg very visibly in plaster. Everything changes. People now assume that she is a ‘normal’ person who has broken her leg and will be walking again soon. They treat her entirely differently. She is one of ‘us’. They talk to her and treat her as a ‘real’ person. After a few weeks the plaster cast comes off and within days she returns to her previous experience of being overlooked. She is one of ‘them’.

We live between two worlds. We see competition, ambition and autonomy as characteristic of the world of success. On the other hand we see disability, poverty and powerlessness as signs of a world haunted by endemic failure. We assume that the world of success has nothing to learn from the world of failure. It is best not to have anything to do with it. Of course, the media presents us with harrowing pictures of the ‘other world’, but we are well-practised voyeurs who do not engage easily. We are like tourists who have paid ‘good money’ to go on a guided tour of a shantytown but who are more concerned with taking photographs of people than relating to them. We may be money-rich but we are time-poor – we do not have the time to slow down and listen. We move on.

In a fast-moving world, ‘making time’ for someone is to give them significance in one’s life. But there is a pressure in our culture to make time only for those things that benefit us. In a competitive and ambitious world, we may see ‘networking’ as something that is beneficial but see ourselves as having too little time to spend on making friends. After all, true friendship is an end in itself, not a means to an end. To say of someone, ‘I’ve got no time for her’, is an act of judgement so complete that there is no comeback from its total rejection.

People who live in a world of success would like to seal it hermetically and deny that any other world exists. Yet from time to time they experience an irrational sense of fear. They know that there is just a thin veil separating being successful from being destitute, between successful relationships and being rejected, between being autonomous and being disabled. Elderly relatives may succumb to dementia, friends may be made redundant, people they love may die of cancer; and they are reminded that at any point they might find themselves living in a world they know little about and for which they are totally unprepared. They realize that they are only temporarily abled.

These two worlds, far from running in parallel, are closely intertwined. To befriend people who have experienced brokenness is to realize that although at that point their story may differ from ours, they are no different from us. We become more human as we learn from one another, and to do so is to make time for one another. It is time rather than money that ends up bestowing the greater affirmation upon another person. In a universe of two worlds where one is characterized by success and the other by apparent failure, all cross-cultural relationships are asymmetric. Friendship is impossible because the world of success cannot admit that it can learn from the world of failure, and the world of failure can find no place in the world of success.

If I believe that who I am depends on what I have achieved, I am unlikely to value the life of someone with an intellectual impairment. I can live my life without that person. To break this deadlock takes courage. It can only be done by realizing that there is no ‘us’ and ‘them’ – there has only ever been ‘us’. We are not doing things ‘to’ other people, nor are we doing things ‘for’ other people. We can only do things ‘with’ other people. People like us.

It takes a revolution in thinking for a person rushing through the day aided by the accoutrements of time-saving tablet PCs, computers and mobile phones to realize that the wheelchair user they have just ignored, who they pass every day, might be the one who can rescue them from the dehumanizing fate that is rapidly approaching. To be successful in a world so distorted that it drives people to prefer the material to the spiritual and status to friendship is to trade one’s soul for the ephemeral. The fact is that in order to change a society in which disabled people are excluded, I have to change my life. This is the task of theological reflection, discussed later in this book. It is not something that is addressed by the disability rights literature, which, like politics in general, talks the language of justice but not the language of love.

We are most ourselves when we are present with one another. Being able to do this requires a degree of stillness and a willingness to see being with another person as worthwhile, when previously we might have viewed it as wasting time. Nor are we most human when we are receiving something worthwhile from another person. Love does not require reciprocity. A friend does not have to speak or be coherent. Listening conveys love. True friendship is based not on what I receive from other people but on loving them for their own sake. Jean Vanier talks about this in the conversation at the end of this book.

But in a world where some are too busy to be attentive to other people, and where in turn others have been led to believe that they are unworthy of those attentions, love is rarely to be found. Of course, decent people can act in a friendly way towards another person, but to involve oneself in friendship is quite another matter.

When we reflect on the world of disability and the challenges and opportunities it represents, the question we face is, ‘How can we bring these two worlds together so that we can learn together what it means to be human?’ It is impossible to develop any kind of Christian perspective on disability without the two worlds coming together. The problem is that there are major hazards in both worlds that prevent us closing the gap. These may be invisible to us: often our most powerful beliefs are the ones we are least aware of. Those of us who are prejudiced against disabled people may well protest the loudest when we are accused. Self-delusion is everywhere and we have the capacity to pull the wool over our own eyes. When we befriend someone who is very different from us, they may begin to tell us that they see us differently from the way we see ourselves. In complete contrast, spending time in the company of people who have identical views and backgrounds to ourselves means that we are rarely challenged and will never learn to see the world differently. It is when we open up to those who are different from ourselves that we begin to grow as human beings.

The problem that arises between abled and disabled people is one of power. People who are abled and hold positions of power make many of the decisions that affect disabled people. Politicians and policymakers rarely see the world through the eyes of disabled people, even when they are appointed to committees to advise them. Disabled people have to live in a world made by and for abled people. The onus is on disabled people to raise awareness that they have additional needs that have not been taken into account or perspectives that have not been appreciated. It is true that legislation in recent years has attempted to bring about equality in this area, but in every part of life there are still huge barriers to be overcome. It is ironic that it is those who may feel most powerless who constantly have to take the initiative to remind society of their presence. The invisibility of disabled people in the community and in public debate leads to their additional needs being overlooked. Such invisibility can lead to disabled people being stereotyped only as consumers of community resources rather than also being contributors to its culture.

The fact that power belongs to abled people means that a friendship between abled and disabled people has to start by disabled people becoming visible. In societies where disabled people are hidden (sometimes literally) from the community, no such friendship can occur. As one writer has put it, ‘to belong I need to be missed’.¹

There has been much talk recently about the idea of ‘inclusion’ in the disability context. An inclusive community is one where abled and disabled people are present on equal terms. They have the possibility of interacting and forming relationships. Yet there are two issues here that need to be confronted. First, it is often the case that in order for disabled people to be in a position to access such a community there needs to be positive discrimination. Just in terms of attending a meeting: they may need the provision of transport in order to find their way there, or a venue that provides the facilities they need during the evening. Second, being an inclusive community is still based on abled people ‘including’ disabled people. It is abled people who do the including, not disabled people. They are the objects of inclusion. Under inclusion, power can still belong to the abled person. There are a thousand reasons why abled people may not wish to belong to such an inclusive community, because they do not see forming a relationship with a disabled person as being worth the effort.

Despite this, inclusion is vital if disabled people are to exercise power. This will never happen unless they are enabled to participate in such a community. Participation is an active word, not a passive one. The virtue of inclusion is, however, that it highlights the barriers that prevent disabled people participating in the community. The Paralympics in 2012 were a success because the concept and practice of inclusion was central to all that went on. But the most visible aspect of the games was that they were about participation. The sporting venues were packed with spectators who wanted to support disabled athletes’ participation in their chosen sport, and who wanted them to excel at it. Inclusion is the foundation on which participation is built.

Of course, the use of the word ‘inclusive’ has developed as we have discovered how ‘exclusive’ contemporary society is of disabled people. The kind of community we want to see is helped rather than hindered by such an insight. But the politics of inclusion must be egalitarian, active and participatory. If people are disabled by the barriers others place in front of them, they will never be able to celebrate their potential.

2

A story and a meditation

Recent books on disability and Christianity have often included descriptions of the author’s own experience of disability (although hopefully we are past the days when an author on the subject had no credibility without a personal experience of disability). We now recognize that many people whose lives are touched by disability have important insights to share even though they do not live with an impairment themselves. Nevertheless, I am aware that personal experience fundamentally affects the way a person sees the world. It also affects the way in which they are perceived by the world.

My own story is about living with epilepsy. About 50 million people in the world live with some kind of epilepsy; 80 per cent of them are in developing regions of the world.¹ About 75 per cent of people with the condition in these regions do not get the treatment they need (epilepsy responds to treatment in about 70 per cent of cases). In Africa around nine out of ten people with epilepsy go untreated. Death rates are two to three times higher in people with epilepsy than in the general population. Risk of sudden death is 24 times greater.

Even in the UK there is a real shortage of doctors, nurses and therapists who specialize in epilepsy, despite the fact that around 600,000 people have epilepsy. Only 52 per cent of people with epilepsy in the UK are seizure-free, although it is estimated that the figure could rise to 70 per cent if they had the right treatment.² Despite the Equalities Act 2010 and other legislation requiring that people with epilepsy have equal access to employment, education and other necessary resources, I have heard story after story from people with epilepsy telling of rejection, discrimination and exclusion, as well as an inability to access the services they need. Worldwide, epilepsy is a condition that is still accompanied by massive stigma and discrimination.

• In both China and India, epilepsy is commonly viewed as a reason for prohibiting or annulling marriages.
• In the United Kingdom, a law forbidding people with epilepsy to marry was repealed only in 1970.
• In the United States, until the 1970s it was legal to deny people with seizures access to restaurants, theatres, recreational centres and other public buildings.

I have lived with epilepsy all my life. There are other conditions I live with, such as Type 1 diabetes and moderate but progressive hearing loss, but it is my experience of epilepsy that has had the most profound impact on my life. It is important to say a little about how it has affected me because living with epilepsy changed my view of myself and my view of God.

It started in infancy with what were then called ‘absences’, where I would drift off and not respond to any stimuli. Occasionally I would fall, or get myself into a position where if I had not been found I could have suffocated. Between the ages of 9 and 14 I was relatively free from seizures of any sort, but when I was 14 I had a major seizure at a party. It was my introduction to the premier league of tonic-clonic seizures which, by all accounts, can be pretty upsetting to watch. (There are around 40 different kinds of epilepsy.) I had gone to the party keen to meet a girl, but when I came round, confused, I fancied that the seizure would not have enamoured me to her.

With epilepsy (as with many other conditions) you lose control of your own story. Being in control of your own story is highly prized in our society; indeed, it is essential if you want to be seen as an achiever. We probably all fear the ways in which we might lose that control, such as homelessness, imprisonment, redundancy or bankruptcy – experiences in which we might lose identity and a sense of self, and feel diminished as human beings as a result.

Being in control is valued because it is an expression of power. Lack of control is seen as weakness or alternatively that you are a danger to others as you are ‘out of control’. There is a sense of helplessness about having a seizure: you realize that soon you will be unconscious but you are about to provide a memorable(!) episode in the story of those with you at the time. You have never witnessed your own seizures, while others have. Epilepsy can undermine security of identity. You realize that others know things about you that are unknown to you, and this can introduce an uncertainty in you about who you are and whether you are acceptable to others any more. Will the girl you were fond of at the party ever want to speak to you again? You are no longer sure. Uncertainty can erode identity, and people with epilepsy often find it difficult to mix or hold their own socially.

Epilepsy is a hidden but disabling condition. In many instances it is well controlled by medication – although some people can have dozens of seizures a day, and others may experience severe side effects from powerful anti-epileptic drugs (AEDs). It may be that nobody even knows that you live with the condition, if it is effectively controlled by drugs, or if the kind of epilepsy you have is not accompanied by loss of consciousness, or only affects you at night.

But if you have a ‘full-blown’ seizure those around you might well be shocked. You come round, hardly able to walk and with a ‘breeze-blocker’ of a headache. You are aware that you have had a seizure but cannot usually remember what happened. Your brain is scrambled. Others may not want to give you the whole picture, perhaps wishing to spare you the details. You may find yourself in a hospital A & E department, with a clipboard resting on your stomach (you are still on an ambulance trolley) that bears the words ‘known epileptic’ – a description that I feel does not do justice to my personality. You might be there for several hours, during which time you will mull over the fact that you will have to hand your driving licence in again and wait for another year before you can drive. (It used to be three years.)³ That means that your wife will have to do the driving when you go away on holiday or any appreciable distance – something that seems unfair. You will also have time to anticipate that your drug prescription may have to be adjusted yet again, and that might cause more seizures in the transitional stage and side effects from the new drugs. You may feel guilty because you forgot to take your medication that morning, partly, ironically, because you have a poor memory due to years of living with epilepsy and powerful AEDs. It’s a lot to think about while shivering on a hospital trolley because your body is still suffering from shock.

I have been interested in my own attempts to minimize the embarrassment I feel at having a seizure. They are irrational, while remaining entirely understandable. When I become aware that I am about to have a seizure I know that I am going to fall to the ground and possibly injure myself. The rational thing to do in the short amount of time I might have before the seizure is to lie down where I am. Yet I have never done so. This is certainly a painful application of the saying, ‘Pride comes before a fall’!

On a few occasions I have carried on for some time knowing I am going to have a seizure. I once walked through Nottingham looking for the best place to keel over. I remember going past a branch of the fashion designer Paul Smith. ...