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Stop the world, we want to get on

Paul Lindoewood

Despite anti-discrimination laws, politically correct language and improved public facilities, PAUL LINDOEWOOD believes disabled people are still tolerated rather than embraced. Can the church model inclusion in a world that is losing its sense of community?

A mother and her daughter, who had a learning disability, were talking about heaven one day. 'Heaven' said the mother 'will be a place where there is no suffering, no pain, and you will be like everyone else'. The daughter thought for a minute before replying. 'So how will you know it's me?'1

It's an interesting question in 21st-Century Britain, which has to most outward appearances accommodated those of us with disabilities upon a raft of legislation, policies and inclusive language. The mother's assumption is that her daughter's apparent blemish will be smoothed away when we meet God. However her daughter is saying that her disability is as much part of her identity as the colour of her eyes. Which is closer to a divine perspective? Could it be that disabilities exist in heaven? If so, how might that influence the way Christians engage with disabled people today?

I am 52, use a wheelchair, have limited dexterity, and some communication impairment. In Britain, services for disabled people have improved markedly over the past 30 years. Disability is more visible, whether in the form of the ubiquitous disabled toilet, parking places, or disabled people themselves. The government is officially aiming for equality of opportunity for all disabled people by 20252.Yet has this changed our perception of disability and disabled people?

The recent blockbuster Avatar is an interesting case in point. The film's hero is paraplegic, which could be seen as a move in this direction, were it not for the fact that his disability is seen as something from which he must escape at all costs, either through surgery or by assuming the body of his athletic avatar. There is no attempt to explore his relationship with his disability - just a heightened contrast between physical articulation and what is seen as limitation.

Back in the real world, my disability might be a problem to you, but it is not for me. I have heard similar declarations from other disabled people. Is there not a sense in which we are already part of God's created order, just as we are? If so, the task for both Christian, and non-Christians, is to learn how to respond appropriately to the presence of disability within our communities.

For the last three centuries or more, our approach to disabled people has been underpinned by what I will call the three Cs: - to Cure, to Care and to Compensate. This has resulted in a sophisticated industry, from which disabled people have benefited in a number of ways. Improved support services have shifted the emphasis from 'looking after' to facilitating. The very fact that I am dictating this article to my support worker, funded by Access to Work, is a recognition that to be productive I need additional assistance.

On the other hand, the three Cs have played a significant role in developing a picture of disabled people as a group outside the mainstream. Our industrialised society continues at a frantic pace. People who do not fit are often seen as needing to be looked after or corrected.

Returning recently to Kenya, where I spent nine years as a mission partner, I had to pay for a second air fare because the airline was unhappy about me flying alone. Interestingly, there was no problem in 1998. The change was apparently due to increased threat of litigation. However, paying an extra £400 for a travel companion because I might need to go to the toilet (which I did not do on either flight), showed an inflationary effect on 'spending a penny'.

Often such decisions rest not on the regulations, but rather an individual's interpretation. Just over 30 years ago, for example, my application to study law was apparently rejected on the basis that I might have difficulty taking notes when reading books. This despite the fact that I had successfully done precisely that for the previous year with my electric typewriter while studying for an accountancy foundation course in exactly the same library. Exasperated, I became a social scientist instead and studied public administration.

I first became aware of the social structures which underpin what I now understand as 'social disability' during my time at special school. We were in a segregated community and the world related to us mainly as a form of community service. I remember a group of us, disabled sixth formers, sitting together and talking about the respective universities and colleges we were about to enter -a less accommodating society to the one we had known.

It was supposedly our physical difference that was the 'problem' - yet looking around me I saw people who were fat, thin, tall and short; people who wore spectacles and sometimes hearing aids, generally covered up by the long hair of the 1970s. It made me wonder: at what point does human difference cease to be socially acceptable, and become a disability?

Alongside being different from the community norm, disabled people are often expected to act out pre-determined roles. Many years ago Robert A. Scott, a US sociologist, wrote The Making of Blind Men3, in which he documented how he was expected to take on passive and dependent roles, as his eyesight deteriorated, simply to gain the support services needed. This has rung bells of truth in my head throughout my life.

The development of the personal assistant, rather than the traditional carer, has been an important change. Even 20 years ago, the possibility of me being married with two children would have been remote. My transition from boyfriend to fiancé and then husband was made easier by being able to respond, through my personal assistant, to that telephone message saying: 'I'm stuck! Can you come and get me?'

Currently I have two personal assistants who work alternately and are an important support to our family life. With Mummy working nights, and long shifts, life would be very different if Daddy could not run a taxi service to drama school, karate practice, guitar, singing and swimming lessons for our children.

This situation has come about because the money and management of services are increasingly being handled by the disabled person themselves.  This allows them to respond to the situation they face rather than going through an intermediary.  In 2007/8, the government spent £450 million on 'Direct Payments' in England alone - a 23 per cent increase on the previous year.4

Those of us who need extra support to function, can now appear in places and roles where previously we may not have been expected. I have held several 9-to-5 jobs and presently run a business. I am a community councillor and school governor. I also participate in a year long ministry course and am regularly responsible for the family shopping and DIY work. In these relatively ordinary activities I hope to enrich the community and move people's understanding of disability beyond the confines of the three Cs.

I hope I am also instigating a fourth C: Community Development- or Community Based Rehabilitation (CBR) as it is sometimes called by the UN in a number of so-called 'developing countries'. The idea is that while medical, therapeutic and social work professionals assist the process, the needs of disabled people are ultimately the responsibility of the community rather than welfare services. Through my work in Kenya5, for example, I know of a chief who organised local workmen to build a bridge over a ditch, enabling a girl who used a wheelchair to attend her local school. Likewise, a group of fathers constructed a small school shelter for their disabled children. I believe such initiatives have a great deal to teach apparently 'developed' Britain, with its withered sense of community. Could the church - a body that can still demonstrate some community identity - become a catalyst for change?

The costs of inclusion are not only financial. During my first visit to Kenya, in 1993, I had a discussion with a retired educationalist who pointed out that if you asked many disabled Africans where they placed inclusive education on their list of priorities, it would probably come below: 'How am I going to generate income to pay for my next meal?' Given that resources are limited, which agenda will promote the greatest understanding of disability equality?

I became aware of the disempowering nature of social policies when I attended an interview to become the manager of a residential home that I was to be responsible for closing. It was deemed as too expensive to run and community care was being promoted as a preferred option for the residents. One of the residents' representatives told us that many were scared by what was going on. Some had lived in the home for more than 25 years. Suddenly those in charge were saying that they had made a mistake when placing them there. They were now being asked to hang around while these same people tried to find a way out of the mess. How can we talk about inclusion and empowerment here?

Throughout my adult life I have been repeatedly asked, in various ways: 'Where is the person who is responsible for you?' We still live with the idea that disabled people are someone else's responsibility. Inclusion and equality are difficult to achieve from this starting point. Possibly the greatest cost of including disabled people within our community is not financial, but the loss of our independence as a god given right. We need instead to realise interdependence as our God-revealed inheritance as the body of Christ.6

Christianity has always been about seeing things as they are and promoting the changes to move nearer to God's will. In recent times the church has had some success in awareness-raising activity within the mainstream, most notably the fair trade movement and world poverty. Is it time for the church to take a lead in developing a community where disabled people are seen as an integral part?

The church has been successful in developing special communities for disabled people. Jean Vanier and the L'Arche, for example, have developed community homes where non-disabled volunteers live alongside adults with learning disabilities. However, these initiatives are often seen as ends in themselves, rather than a step towards social inclusion. I once tried to find a L'Arche community home. A neighbour directed me to the house 'where those children live'.

There will be no pain or suffering in heaven, but I don't think we will all be the same. I certainly expect that many of our ideas about sameness and difference will be challenged when we meet our creator. For now, Jesus said: 'where your treasure is, there your heart will be also'7 - and the way we live as a church today will always reflect our expectation for the future. So let's be clear: a community that includes disabled people is one which acknowledges the interdependence of all members, accommodates their needs, and expects to see them in all of its activities. Interestingly, as such a community develops, we are likely to see previously identified differences fade away.

Perhaps then mum won't need to worry about her daughter not being like everyone else.  

1  A story from Prospects, a Christian organisation working with
people with Learning Disabilities.
2  Improving the life chances of disabled people (Prime Ministers
Strategy Unit, January 2005).
The Making of the Blind Men  Robert A Scott,Copyright 1969
Russell Sage Foundation 230 Park Avenue, New York City, New
York 10017.
4  Personal Social Services Expenditure and Unit Costs: England
2007-08 (Published February 2009) by the Health and Social Care
Information Centre.
5  The Methodist Church in Kenya Meru North Disability
Community Centre
6  1 Corinthians12.
7  Matthew 6:21.