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Disability - Something Every Minister Should Think About

By Faith Bowers.

the Baptist Union Initiative with people with Learning Disabilities.

Disability is not a rare aberration, although it is often so perceived, but a 'normal' part of the human condition. A minority are born with one or more disabilities (they have a nasty habit of coming in the plural), others become disabled through accident, disease, or age. Many of us will experience disability for part of our lives. It comes in many forms and in varying degrees of severity. It affects profoundly those with the impairment - whether of body, mind or sense - and those who care for them, yet other people often seem unaware of this. It is important for every minister to be alert to the reality of disability.

Sometimes one hears people say they have no-one disabled in their church. This is unlikely to be true, but it is all too easy to think of disability only in terms of blindness or using a wheelchair, or at least crutches or a walking frame. If it is true, then they should perhaps ask what is wrong with their church. Why is it failing to attract a full cross-section of the population? Usually, however, someone more alert to the wide range of serious disabilities would discover several where others had seen none. Blindness may be rare, but many have significant sight problems, not all happily corrected by glasses. It would be unusual not to have some older members of the congregation with significant hearing loss. Perhaps everyone in the congregation has basic mobility, but some may have back problems that make it hard to stand for long periods, while others struggle with stairs. Some may appear fit, yet have conditions that require a restricted diet. Mental health problems and/or severe learning disabilities may make it hard to relate readily to other people. All these conditions and many more can affect how people belong to the church community.

Accessibility issues

Every church leader should be aware of the requirements of the Disability Discrimination Act which came into force in October 2004.1 Many churches cringe at the complexity and cost of improving physical access to old buildings. Adapting premises can be difficult and expensive, especially those with long flights of steps or multiple levels because of hilly sites. Christian disability bodies have tried for many years to make churches think about access, and many have made improvements, often while doing other building work, but there are sadly still many churches that apparently need the force of law to make them face up to the need.

Making the necessary modifications is costly, and many churches resent this. It is sad when worries over buildings and finance are reflected in the welcome given to people with disabilities. Where really good provision has already been made, it has proved evangelic: it is good news in itself and acts as a positive attraction. People alert to disability are thrilled when they come across this and respect those who have made it.

But 'loos, loops and ramps' - good physical provision - are only a beginning. Attitude is more important. A welcoming manner and sensitive, caring approach can make light of real physical obstacles. Good wheelchair access can be ruined if everyone talks over the head of the user, asking his companion if he takes sugar. It is hard to be ignored, but it is also embarrassing to have a fuss made about the disability, thus drawing everyone else's attention to it. Most people who have disabilities want to be seen as people in their own right, with due, but quiet allowance made for their special needs.

The care professions are now more aware of the spiritual needs of those who have severe disabilities. They should co-operate with those who express a wish to attend a place of worship, which may mean a carer having to go too. One church appreciates a Jewish care worker who has proved particularly good at helping his clients join in their Christian worship. Others will be able to come unescorted, and the church will need to be alert to its responsibilities towards vulnerable adults.

Generalizations are always dangerous ...

... but there are a few facts about disability that are so generally valid that they can help us to be more understanding.

1) Disabilities are time-consuming. Almost any disability means that some everyday activities take longer - sometimes many activities and a lot longer. Those who lead apparently 'normal' lives in spite of seriously disabling conditions almost certainly put extra time and effort into achieving this, day in, day out. The time constraints apply to carers too.

2) Disability is embarrassing. Most people want to be seen for themselves, not their condition, and will try to keep their disability as unobtrusive as possible. You cannot hide a wheelchair, but it is surprising how many people will not notice that one among them has little use of one arm unless their attention is actually drawn to this. Some conditions are embarrassing in their very nature, especially those affecting the digestive or urinary systems.

3) Disability breeds false assumptions. People see a disability and jump to conclusions about what a person will be like. It is easy to think in stereotypes, usually based on limited experience. Many people with learning disabilities and limited speech make a point of trying to get people's names, making their own helpful point about individuality. There are a number of syndromes which make those affected look similar and perhaps share certain characteristics, but that does not make them all the same. People will recognize the physical characteristics of Down's Syndrome, for example, and 'know' that they are all happy, loving, musical - often, but alas not always, true. To proclaim God's love for each individual, God's people need to recognize each person as unique.

4) Disability is expensive. It affects employment and income, insurance, mortgages, ability to cope with gardens or home decorating, you name it. It may even affect whether someone joins in the church outing or harvest supper. Recent legislation has improved conditions as well as physical access, but it is never easy. Sometimes homes need modification, which never comes cheap. Clothing may need replacing sooner if subjected to extra wear at certain points. Holidays may only be possible where special provision is available. By and large, there will be reduced income and higher expenditure.

Through my teens my mother washed bed linen every day, MS having rendered her husband doubly incontinent. She had a gas boiler and mangle, and could not afford a 'twin-tub' which would dry better, let alone one of the new 'automatics'. In wet weather we lived between clothes-horses of damp sheets. Half a century later I know another wife rising at five o'clock every morning to wash bed-linen with inadequate facilities.

5) Disability makes life harder all round. This again applies to those with disabilities, to those who care for them, and to others in their families.

My mother taught evening classes, when schoolgirl daughters could look after their father. Nowadays I hear about 'child carers', and am glad no-one labelled us in those days. We accepted the need, but would have hated the stereotype. Years later a shrewd schoolmaster asked if our son was the oldest in a large family. No, we said, just one brother, but disabled. "That figures", said the teacher, "I knew that boy was too old for his years". That was quite painful to hear.

Our eldest grandson copes sensitively when his abilities outstrip his uncle's. Yet he could be dismissive of a child with learning disabilities in his class: "Oh, he's statemented. He can't do anything". How well do schools really cope with mainstreaming? How well do churches cope with inclusion? Are there gaps between theory and practice?

What else should ministers know?

What more can usefully be encompassed in a brief article? Lots of information is available about all manner of conditions but, unless the pastor is helping those facing a new diagnosis, your friend with the disability or the carer will be best able to explain what really helps.

The sensitive pastor needs to understand the various ways in which the person reacts to the disability.

Some people give in to despair. Perhaps this is particularly likely when disability strikes someone formerly fit and active. One morning my father was the officer in charge of a fire station. By lunchtime he was blind and within weeks his legs began to fail, with an outlook of increasing debility. As a teenager I understood why he attempted suicide while he still had some control over his life. My mother foiled the attempt, which I could see was better for her, but was it really better for him? Fifty years on, I am still not 100% convinced. We all tried hard, but there was little joy in his last years of life.

Some people feel they have no choice but to submit to their disability, accepting whatever help is offered them as poor compensation for their state. They give in and endure it.

Others channel frustration at their limitations into resentment and anger. Often the anger is directed at the way society treats them. They feel constantly cheated and protest that it is other people who disable them. Sometimes their complaints about thwarted aspirations suggest that they have never come to terms with the reality of their impairment. Many, however, are able to channel their anger into creative initiatives that improve the situation for others with disabilities.

Some are proud and feel a need to prove themselves, in spite of the disability. Perhaps there is an element of denial in this. As a young man with a serious but 'invisible' disability, embarrassed at not being as strong as his physique might suggest, my husband was offended when a prospective employer advised him to get registered as disabled. With his qualifications he would be an attractive candidate for their 'disablement quota'. He determined to prove he could compete on equal terms, which he did with a different employer, and achieved a rewarding career without 'trading' on his disability. Nevertheless, his initial choice of job was restricted to what he could hope to cope with physically. It is partly because he proved himself to his own satisfaction, coming to terms with disability that way, that I can write about this now. For him, achieving in spite of disability was part of the process of acceptance.

Our son, who has Down's Syndrome, resented his condition as a teenager. He did not want to be 'different'. He struggled with indistinct speech. He began to recognize other Down's people by their distinctive features. We would hear him praying to Jesus to 'change my face'.

As an adult, he has learned to accept his condition. "I don't mind having Down's Syndrome," he observed on hearing of a baby born with it. "Tell the parents it's all right. It's not the end of the world." It is good to hear the matter-of-fact way he and his friends speak of Down's Syndrome, cerebral palsy, etc., and to see how alert they are to help one another, according to the particular abilities and disabilities of each. Together they are less disabled than alone. It was a precious lesson learned early in the much maligned special schools.

Disability can so often dominate life, because allowance must constantly be made for its demands and it eats up so much time. Acceptance is not easily achieved. It is about getting rid of natural negative feelings and getting things into fresh perspective, about being oneself and 'getting a life' that is not only defined by disability. Acceptance of those things we cannot change is a precious gift, a blessing which in turn enables that person to become a blessing to others.

So how can the pastor help?

Practical and pastoral needs will vary, both with the condition and with the person's attitude towards it. Being alert to this will help. Make the effort to meet people where they are and avoid jumping to conclusions about them.

People who have severe disabilities may struggle a bit with all those healing miracles in the gospels, since most have to come to terms with their condition long-term. Some, perhaps especially those with learning disabilities, are aware that those who love them most are often disappointed when they fail to achieve even small goals. Learning that God values them just as they are can be wonderfully liberating. But teaching about God's love is more convincing when the church reflects that love in its own dealings with people.

Within the church most people with disabilities are helped by finding a role, something useful they can do. They do not want just to be receivers. Few are really content to be spectators when they might be fellow-players, members of the team, given a bit of encouragement and help in finding what they can contribute. Many churches depend on devoted, reliable servants of Christ whose disabilities are hardly noticed, although those concerned have to go the extra mile to achieve this and might readily have been excused from taking any special responsibility.

Those who attain a state of acceptance, where disability no longer seems the dominant factor in their lives, are often held up as shining examples - which is itself not always a comfortable position! They need others to accept them as they have learned to accept themselves. I myself do not find it easy to view disability as a gift from God, but I certainly see as a gracious gift of the Holy Spirit this kind of acceptance and the positive outlook that it produces.

Those who cope well are usually reticent about their disabilities, preferring to keep their real practical problems in the background. Some years ago I asked a number of Christians to write honestly about these problems, especially in relation to church life. Many felt like the minister who told me, "This is the paper I'd hoped never to be asked to write!" But they overcame their reluctance when I urged that their honesty would help others.

A Baptist Superintendent wrote about epilepsy. Later he told me that this prompted him, as a frequent 'visiting preacher', to draw on it as sermon illustration, something he had not done previously. Every time he mentioned his own epilepsy, someone afterwards thanked him for this special encouragement. Often it was a young person, newly diagnosed, afraid that this would take over their future. That experienced minister told me that until then he had not seen his 'affliction' as such a valuable pastoral resource.

Many, alas, still contend with negative attitudes towards disability. Old ideas of punishment sent by God die hard, as do feelings that there is something unclean, as though disability might be caught by contact. One minister told me he had had people refuse to receive the communion bread because it was broken in his one 'usable' hand, twisted and malformed by thalidomide. Yet they worship a Christ who made a point of touching those deformed by leprosy!

Disability is not a minority issue. It is a common part of the human condition. We ignore it, hide it, and fail to value the experience gained through it, to our loss. If pastors can help people through to a positive acceptance, that will help them to enjoy life in greater fullness, whatever their limitations, physical, sensory or mental. Those whose faith has been honed by their experience of disability have much to give to others. That great stumbling block, the problem of suffering, will look different from their perspective.