Interview with Bernadette Meaden

Q. Your new book, Illness, Disability and Caring draws on the wisdom of the Bible to help us better understand various aspects of illness, disability and caring. Are there particular Bible passages you have found particularly relevant?

A. The whole idea of us all being made in the image of God, of something being infinitely precious about every human being, without exception, has been a solid foundation to my life. But I have always been interested in ideas about how society should be organised and the principles which should underpin it, and for this I have found the New Testament a rich source of inspiration.

I think the idea of a society based on generosity and justice is expressed powerfully in the parable of the workers in the vineyard, and I expand on this in the book. In this parable, at the end of the day, everyone gets what they need to live, regardless of the work they did during the day. This to me represents a model of society in which everyone can flourish, in contrast to our current society in which disability and illness too often lead to poverty and social exclusion, and where certain types of work, like caring, is underpaid and undervalued. ‘The last will be first, and the first, last’ is an inspiring challenge to the values of a world in which wealth and power seem to be concentrated in ever fewer hands. And, linked to this of course is the message of the Magnificat, which I also find very inspiring.

Q. You were born with a rare form of congenital heart disease – how do you think this has influenced your views on how we should respond to illness and disability in others?

A. To be honest, it’s difficult to know. My experience is particular to me, and I have no more insight than anyone else into what it is like to be a wheelchair user, or have a brain injury, for instance. But I think we all just want to be valued and treated, not exactly the same, but with the same respect for our individual needs and abilities. We want to be seen for the person we are, our character and personality, rather than any illness or disability we have.  I think it’s as simple as that, in the end  – we have to treat others as we would want to be treated ourselves.

And we have to avoid judgements and preconceptions. My condition isn’t apparent visually, but I have some limitations. On rare occasions when these limitations have been questioned or dismissed because of my appearance, it was hurtful and humiliating. So I would say we have to respond to people with humility and trust, respecting the experience of whoever we are dealing with.

Q. One of the chapters is entitled ‘Radically Inclusive Love’. What do you mean by this?

A. I first came across this phrase in Keith Hebden’s book, Seeking Justice: The Radical Compassion of Jesus, and it was one of those occasions where the words leap out at you and you think – yes, that’s exactly it. It just expressed my understanding of the message of the Gospels in the most concise and accurate way I had ever come across. A message of love which extends to all people without exception, including the people who are excluded or considered inferior by society, and which runs completely counter to the way society so often divides people into them and us, deserving and undeserving.  

Q. What has the recent coronavirus pandemic revealed about both the government and society’s attitude towards sick and disabled people?

A. I think it has illustrated, in a really stark way, that certain groups of people are considered a low priority and can be to a large extent disregarded. There is much talk of protecting ‘vulnerable people’ but often it is society which makes them vulnerable.

For instance, one of the first things the government did as a response to the pandemic, while it was dragging its feet on lockdown and in almost every other area, was rush through Parliament the Coronavirus Act 2020, which removed many protections from children in care and people with disabilities who require support. People with underlying health conditions were left with the impression that if they died of coronavirus, it would be regrettable, but somehow more acceptable than if a young or healthy person died, and we know what happened n care homes. When the government increased Universal Credit by £20 per week in recognition of the hardship which may be caused by the lockdown, it did not do the same for disability benefits or Carers Allowance, which go to the people most likely to be in poverty and most severely affected by the pandemic. And perhaps it tells us something about society that the government felt confident that it could do these things without paying a significant political price.

Q. It seems that the role of the carer, in spite of the often immense physical and emotional challenges involved, is both downplayed, poorly paid and generally considered not something to aspire to? Why is this?

A. I think this is because our current political and economic thinking places a low priority on people and activities which are not seen as being economically productive or profit-making. The government seems to see expenditure on social care as just a drain on resources, when in reality a properly run social care service, providing secure, decently paid jobs, could strengthen local economies and improve the lives of millions of people. But until politicians are prepared to organise social care on a sound financial footing, so that workers have decent pay and conditions, care work will not get the reward and status it so richly deserves.

And unpaid carers, who care for family members in their own home, are often so exhausted and stressed that they have little energy left to argue their case or raise the profile of their role. That is why I was keen in the book to look at the caring role and how, whilst it can be rewarding, it can also, without the right support, be damaging and exploitative.  

Q. How do you think prayer can help us when we experience suffering?

A. I can only speak about my experience of the ways in which prayer has helped me. I have found that it can help to calm my mind, put things into a different and wider perspective, and perhaps provide a sense of security through feeling closer to God. For reasons I explain in the book, I personally don’t pray with an expectation that God will intervene, by changing the course of an illness or healing a broken limb. But this is a very personal thing, and everyone will have a different view. Some people may find it impossible to pray at the most difficult times, which is totally understandable.

Q. How can churches lead the way in giving the sick, the disabled, and their carers the dignity, respect and affirmation they deserve?

A. I think churches can do many things. First, of course, in their own activities they can be as inclusive and accessible as possible, and in this there may be a long way to go. For instance, disabled people had been asking for years if church services could be shared online, for people who were unable to go to church, but it always seemed too difficult. Then suddenly, when lockdown arrived, almost overnight it was found to be perfectly possible. And of course, of all organisations, the church should be the one in which disabled people find that their talents, abilities and leadership qualities are recognised and properly utilised and developed.

Churches could also make every effort to be well-informed about all the issues affecting disabled people and carers, ask what needs to be done, and then lend their voices and platforms to get these issues dealt with. They need to work with disabled activists and carers groups, and their own disabled members, find out what is happening, and why. Over the past ten years, austerity and welfare reforms have taken a terrible toll on disabled people. When churches raise an issue with MPs or Ministers they shouldn’t take at face value the reassurances they are given, but challenge and follow up.

Of course church leaders can’t be expected to have detailed knowledge of every government policy and how it will affect disabled people, but they can work with the people who do. A shining example in this respect is the Joint Public Issues Team (of the Baptist Union of Great Britain, the Church of Scotland, the Methodist Church and the United Reformed Church) which has produced excellent analysis and strong advocacy on government policies which harm people, like benefit sanctions. And I’d recommend every church subscribe to the excellent Disability News Service, where the news is reported by and from the perspective of disabled people.

Equipped with this knowledge, I’d also urge churches not to be afraid of being considered too political. If a government policy will be harmful to disabled people, it’s surely necessary to point that out. And it’s only right that when Christians are casting their votes they know what they are endorsing or enabling. Often, churches seem to feel they have the moral authority and an obligation to speak out strongly on certain issues, like abortion on grounds of disability, or assisted dying, but not on policies which have e terrible impact on quality of life for many disabled people.

Many churches run foodbanks, and that is great work but it’s terrible that we need them. In research last year the Trussell Trust found that people who have been referred to a foodbank have an average weekly income, after housing costs, of just £50, and three quarters live in a household affected by illness or disability. This poverty and hardship didn’t happen by accident, it happened through political choices, and it can be solved through political choices. As Dietrich Bonhoeffer said, “We are not to simply bandage the wounds of victims beneath the wheel of injustice, we are to drive a spoke into the wheel itself.”

*Illness, Disability and Caring: How the Bible can help us understand, is a Bible study guide for individuals or groups, published by Darton, Longman and Todd. It is available here and here

* The book is reviewed here

This interview first appeared on the website of Darton, Longman and Todd http://dltbooks.com/

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© Bernadette Meaden has written about political, religious and social issues for some years, and is strongly influenced by Christian Socialism, liberation theology and the Catholic Worker movement. She is an Ekklesia associate and regular contributor. You can follow her on Twitter: @BernaMeaden