Table Of Content
- About the author
- About the book
- This eBook can be cited
- Chapter 1: Approaching the Discourse on Disability
- Chapter 2: Mindfulness in Abraham’s Bosom
- Chapter 3: The Voice of Jean Vanier
- Chapter 4: Henri Nouwen’s Eschatology of the Beloved
- Chapter 5: Seeing the Riddle through the Mirror
- Chapter 6: Pastoral Implications
A number of people have accompanied me on this journey and I would like to acknowledge the help of some of them here. First my PhD supervisor, Professor Clemens Sedmak, has been an unfailing source of support and inspiration. His enthusiasm for this project was evident from the first time we met and he has never ceased to encourage me to pursue my goal. Without him I would never have reached this stage. Dr Susannah Ticciati also gave valuable support and advice, particularly for the Augustine aspects of the project. In addition I am very grateful for valuable comments on the Augustine chapter from Sister Margaret Atkins, OSA. During most of the time I researched this book I worked at Allen Hall Seminary where the staff and seminarians showed helpful interest in the project. It was particularly valuable to be able to discuss the various stages of the project with them over lunch. My struggles to explain the work in a nutshell helped me to clarify my ideas.
I was very fortunate to be able to visit the Henri Nouwen Archives and L’Arche Daybreak in Toronto in September 2012. I am most grateful to my hosts for that visit, Mary and Eamonn Cannon, and to the staff in the Archives and the members of the Daybreak community who made me so welcome.
I am also grateful to several people with learning difficulties who inspired me to pursue this project. I think particularly of people at St Joseph’s Pastoral Centre in Hendon who have brought the theory to life.
Lastly I would like to thank my friends and family who maintained their support for this long period when I needed to study and spend more time in libraries than I did with them. In particular I am so grateful to my husband, David, for unfailingly cooking me wonderful meals and for listening to me whenever I needed a sounding-board. ← ix | x →
There is always a question that hovers over every family expecting a new baby: ‘What will this child be like?’
The full answer is very slow in coming! Of course, certain characteristics become clear with the birth of the baby. Only then can we see what the Lord has made and rejoice in the tremendous gift of new life, in all its simple glory! Every baby is a gift from God, a precious addition to a family, filled with the dignity that is a reflection of Christ himself. Each of us is made in the image and likeness of God (Genesis 1:27). Indeed, God loves each one of us into existence!
Some babies abound in good health. Some do not. From day one, some have a struggle. Often that makes them very special indeed.
I have known many people who live with disabilities, either from birth or from traumatic events in their lives. One young man is fresh in my mind’s eye. His name was Philip. He was born with serious disabilities and challenges. He and his family fought hard for his life. He lived well and one of his greatest qualities was his ability to bring such joy to all who met him. That joy was born of a deep faith, never expressed in words but clear and shining. He had trust and courage. With his family and friends, he accepted the life given to him and he knew of his need to rest with God.
There was one occasion that showed this so clearly. It was a moment in a Service of Reconciliation in Lourdes. When it was Philip’s turn to approach the priest he simply wrapped his arms around the priest, and each rested his head on the shoulder of the other. This embrace was silent yet eloquent. ‘Heart speaks to heart’, the famous phrase of Cardinal Newman, describes this moment. His act of reconciliation witnesses profoundly to the reality of the sacrament. He showed us how to rest in Christ even when the crosses of our lives seem heavy.
I welcome this book by Dr Santamaria because it encourages us to reflect, in the light of faith, on our experiences of disability. It is a kind of ‘theology of disability’, deepening the meaning of Pope St John Paul II’s ← xi | xii → words: ‘Keep those with disabilities at the centre of our lives, that we may treasure them and recognise with gratitude the debt we owe them’. This is an important part of our insistence of the value of every human life, from the moment of conception to the moment of natural death. Only with this conviction will we make our pilgrim journey together, without excluding anyone and without depriving ourselves of the gifts that God has given.
Cardinal Archbishop of Westminster
A young woman with a learning disability asked her parents whether she would be disabled when she got to heaven. Her parents assured her that she would be perfect when she got to heaven. Their daughter then asked, ‘But how will you know me?’1 It was a simple question but one with deep theological, philosophical and spiritual significance, and a question which raises many issues about things that are explored in this book. As with all good theological questions, this one leads to more questions.
Will people with disabilities, either mental or physical, be recognisable in the heavenly realm? If they no longer have their disabilities, how will we know them? Are disabilities part of who we are? It is easy, in the case of someone who loses a limb in an accident to imagine them with the missing limb restored, but with congenital conditions answering the question is not so easy. What about those who have a disability such as hearing loss? Many deaf people would argue that they are not disabled, it is just the rest of the (hearing) world who do not ‘speak’ their language who cause the problems they experience. This book attempts to look at these question by considering them using a number of different approaches.
The first chapter looks at disability studies, considering and summarising the body of research which has been conducted in this area and drawing on some practical examples, in the form of case studies, or vignettes, of people with various types of disability. Next, we turn to one of the pillars of theology, St Augustine of Hippo. Although Augustine lived more than 1,000 years ago, his words on the subject of heaven are the foundation of so much of our current theology that his voice has to be heard. Surprisingly Augustine also wrote about disability, although perhaps we should not be ← 1 | 2 → surprised at this fact as the body of work which came from him is so large that he wrote on almost every subject. I move next to a contemporary practitioner who works with people with learning difficulties, the world-famous Jean Vanier, founder of the L’Arche communities. His contribution is supplemented by the work of Henri Nouwen, a Dutch Catholic priest who worked extensively, especially towards the end of his life, with the L’Arche movement. The fifth chapter tries to bring together the threads of the previous chapters and offers some tentative proposals to answer some of the key questions posed previously. The final chapter offers some suggestions for the application of all that has gone before to pastoral situations.
1 This story was recounted by the theologian Robert Perske, who was a chaplain in the hospital where the girl lived. Robert Perske, ‘The Theological Views of Some of My Mentally Retarded Friends’, Journal of Religion, Disability & Health 7/1 (2003), 129–33.
Disability studies is a relatively recent area of research in academia. Most early research sprang from the discipline of sociology. Within this field there are parallels with other areas of research such as the study of the development of feminism and the study of other marginalised groups of people. This chapter starts by looking at how language affects the way we view people with disabilities. This then moves on to look at the history of the disability movement as it is helpful to know how disability studies developed. This is followed by a more detailed look at cognitive disability, in other words, non-physical disabilities, since this is the field in which two of my key interlocutors, Jean Vanier and Henri Nouwen, have worked. The final section of this chapter considers the link between disability studies and theology and in this section I introduce a case-study of a fifteenth-century Spanish nun, Teresa de Cartagena, in order to further explore the link between disability and theology.
Disability Friendly Language
Language games and boundary disputes
Disability seems, on the face of it, to be a clear but broad term to describe a condition of lacking something that most people possess, ability, yet ← 3 | 4 → the boundary between ‘normal’ and ‘disabled’ is a very blurred one. For example, when considering Autistic Spectrum disorders Judy Singer uses the term ‘fuzzy boundaries’.1 Since the name of the condition includes the word ‘spectrum’ it suggests that people do not belong in discrete, clear-cut categories and this is a helpful approach because it reminds us that there are shades of grey with all definitions. It is sometimes said that we are all disabled in some way, in the sense that we all fall in different places on the spectrum of ability and there can be advantages in remembering this. Degree of impairment can also be transient, as with mental illness, with symptoms that vary in severity from day to day, or week to week. Depression, which about one in ten people experience at some time in their lives, is a prime example of this.
Deafness or hearing impairment is an interesting area to consider, since it is undeniable that with hearing impairment the boundaries are not clear-cut. Many deaf people, particularly those who are born into a signing deaf community, do not consider themselves as disabled at all. Instead deaf people who sign consider themselves to be members of a different cultural and linguistic community with its own norms and experiences. Deaf people who communicate using sign language can feel very isolated in a hearing world, but they would liken this to a person who is surrounded by speakers of another language, rather than someone who has a disability. Someone who has always used spoken language to communicate and who goes deaf in adult life, however, might be more likely to feel very disabled when their chosen means of communication is no longer available to them.
In order to understand disability one must have some understanding of what being able-bodied means. Not all researchers agree on this but certainly the model used by psychiatry has tended to note the negative (what the patient cannot do) and fail to mention what is working properly. This approach gives only part of the picture of what the person is like, however. What a person needs to be able to do in order to function in society depends ← 4 | 5 → on the circumstances. Plucked from our usual home and transported to an alien land many of us would struggle, with a foreign language, foreign place-names, customs, modes of transport, food and many other aspects of life. Some key abilities for survival in once place might be completely redundant in another. Being able to swim might be a life-saving skill in some places, but totally unnecessary elsewhere. In other words, our life-skills are context dependent and so is our degree of disability.
Labels and stigma
- XII, 250
- ISBN (PDF)
- ISBN (ePUB)
- ISBN (MOBI)
- ISBN (Softcover)
- Publication date
- 2018 (November)
- Theology Disability Eschatology Augustine L’Arche
- Oxford, Bern, Berlin, Bruxelles, New York, Wien, 2018. XII, 250 pp.