On Saturday afternoon we had a 21st birthday party in the garden at Mill Grove. It was an autumnal day, dry and pleasant. Pears and apples were ripening and there were several windfalls. The grass was lush. To picture the scene, imagine a white tent/gazebo beside a bouncy castle, garden chairs and picnic tables, the smell of a barbecue, and sweet-meats laid out generously on a large table with a colourful candle-bedecked birthday cake in the centre. Then imagine guests arriving from 12.30 p.m. followed by the Mayor of the Borough. There are a couple of short speeches before the cake is cut, and then a magic show put on by a clown. Conversations are struck up by the guests and the atmosphere is congenial and relaxed.
Close attention to the details of the above paragraph reveals that this is not a standard 21st party: why a bouncy castle, for example? Why is the party beginning soon after mid-day? And why is the Mayor present? The answer is that this is the anniversary of the founding of a little voluntary school for children with cerebral palsy called the Rose Walton Centre, and the guests are children, families, volunteers and friends.
The purpose of this column is neither to describe the history of the school, nor the stories of some of the 70 children and their families who have attended sessions since the school began. It is rather to focus on the quality of the conversations and relationships, and to consider the catalyst that made such a community possible.
The educationalist Parker Palmer in his book The Courage to Teach writes of a form of social group which he calls a “community of truth”. He describes a dynamic that connects the subject of such a community on the one hand, with the quality of the relationships of those who study or share a respect for it on the other:
“In the community of truth, the connective core of all our relationships is the significant subject itself: not intimacy, civility or accountability, not experts, but the power of the living subject.” (Page 102)
In the light of this I felt that what I witnessed at this celebration in the garden was a community (that is a better word for it than ‘association’ or ‘group’) drawn together by a ‘living subject’. And what was that subject? At heart it was probably a shared experience of being, parenting, grand-parenting, or caring for, a child with cerebral palsy. Through conversations with members of this community over the whole period that the school has operated I have been privileged to learn something of the nature, the contours, the depths and scale of this subject. Every child is an individual with his or her own story, but there are common elements, shared experiences and ‘something understood’.
Let us try to imagine some of these. They include the initial shock of the discovery that a newborn baby or toddler is not ‘normal’ but has a disability. The way the fact of this disability is passed on and described to the parents and families will always remain with them etched in the memory with time, place, scents, colours vividly present.
As the child develops there is the realisation that the child and the parents are distanced from ‘the mainstream’. There is a sense of isolation, even loneliness and stigmatisation. People and institutions do not seem to understand, or empathise with the family. If they do then they find it difficult to express it. More commonly, the messages the parents receive are imbued with a sense of sympathy or pity.
At some point all the parents discover that they are engaged in an uphill struggle to gain access to services and resources.
The parents and families in the garden had, of course, all experienced the joy of discovering a school that welcomed and understood them. What’s more, they found that the school was located within a living residential community, and that their children were rubbing shoulders with (ordinary?) neighbours ranging from pre-school nursery children through to senior citizens.
Nearly all the families have recounted to me the ways in which their children have been helped by and through this school to realise something of their potential: learning to sit up themselves, to stand up, to walk, to feed themselves, to draw, to speak, to play games, to ride horses (the list is virtually limitless). Some had been told that their children would never do some of these things, including a couple whose son had come in full riding gear because he had a riding lesson immediately following the party.
But two more discoveries were shared by this ‘community of truth’. First, as the parents began to reflect on the realities and experiences of bringing up a child with cerebral palsy (either a single child, or one of two or more siblings) they realised that there was somehow more joy or blessing (both words were used that afternoon in discussion) that came through their relationship with that child than many other parents seemed to experience with ‘normal’ children who achieved average standards of attainment or above. “This child is special”, I have often heard.
As the parents unpacked what this meant, it became apparent to me that they were not just describing the child and his or her achievements, but ways in which the child had opened up new horizons for them personally, taking them beyond tried and tested paths and anticipated experiences. It may not have been “infinite openness to the infinite” to quote Karl Rahner’s celebrated phrase, but it was a step in this direction. Rather than close down options in life, such a child seemed to be a means for expanding them.
Closely related to this, and taking us to our conclusion was the discovery that other families present all had similar experiences (in varying combinations and degrees) and that it was, perhaps uniquely, possible to share with them what other parents and families found it difficult to fathom. If a family with so-called normal or average children keeps a proper distance out of sympathy for a family deemed to be struggling to cope with a child who had cerebral palsy, it follows that there is unlikely to be a depth to the sharing that goes on. But the conversation between these families was of a quite different order: they were open, honest, vulnerable, reflective, resilient, determined, committed, realistic and … believe it or not, feeling in some way (however unlikely it might seem to others) to be privileged.
One couple, grandparents of a child with Down’s Syndrome, told me while I was in the middle of writing this article that a nurse came to see them just outside the maternity hospital within 48 hours of the child’s birth. She said to them that they must be a very special family to have a child who would bring so much joy and blessing. They told me with great feeling over twenty years after the event that they felt like punching her. “How dare she say this? We would have gladly settled for a completely average child with one head and two hands”, they told me.
But, believe it or not, they went on to say that slowly that had come to see that the nurse had been right. This child, now an adult living in supported accommodation and with a good job, had indeed brought untold joy into the lives of all the family. It would be inaccurate to conclude that their experience had been untinged by a sense of regret and an underlying and undying sadness, but despite or possibly within this reality, they told me of the joy that he had brought into their lives.
As the guests started to leave the celebration I began to reflect on the quality of the relationships and conversations that had taken place: quite remarkable and unusual in their frankness and sharing of particular incidents and feelings. And this led me to wonder about the nature of the ‘living subject’, the core, around which they had gathered. In one sense it could be described as ‘having a child with a disability’, but that does not do the subject justice. For the living subject embraced all the shared experiences that I have tried to describe, and more. And there was no clear demarcation possible between the subject and the quality and dynamics of the relationships being experienced and expressed as we gathered. The living subject had so affected the community that the community itself had become a living subject that I could begin to understand and respect.
This led me to one final thought: what are the subjects around which other groups of people gather? In classrooms there are the predictable subjects such as reading, maths, music and so on. In voluntary groups there are hobbies or interests. In localities there are common areas, issues, problems. In faith groups there are narratives and traditions. You can continue the list. But somehow this living subject, however you care to define it, had resulted in a quite remarkable, even unique, community.
I was witnessing a complete paradox at work: what would commonly be accepted as a disability had resulted in a quality of community and relationships that many people never experience throughout their lives. How this comes about is hard to say. But it is as if receiving, welcoming, embracing a child with disability changes the receivers profoundly and something like what Jesus described as the Kingdom of God is created in the process: a community where things seem to be turned on their head, where the last are first, the outsiders are inside, and the least are the greatest.
I count myself immeasurably blessed to have been welcomed into this community and for the honesty, patience and grace of those whose lives have been turned inside out by being parents of children with a disability as they have helped me to glimpse just a little of a profound, bitter-sweet process at work. And during that special afternoon we were blessed throughout our time together by the presence of ‘living subjects’ in our midst, laughing, playing on the bouncy castle, eating eagerly and assisting the clown with confidence and joy. Without them present it would have been like some sort of memorial gathering, an act of remembrance. If you go back to the beginning of this piece you can now re-imagine the opening scene: the children’s presence changes everything.