Names, Not Labels
Mill Grove is a residential community that has been around for 109 years: since November 1899 to be precise. During that time well over 1000 children and young people have lived here. And that includes children of every description that I can think of. They have come from many different countries, cultures and religions. They have come as individuals or as part of a group of siblings. They have had very different attitudes to life, different abilities and different disabilities. So varied is the make-up of the community that occasionally when I have been asked to describe our specialism, I have responded, “non-specialism”.
The second girl who came to live with us (in 1900) was in calipers due to a physical condition known then as rickets. And since then there have been children who have been partially sighted, hard of hearing, with physical disabilities such as cerebral palsy, emotional difficulties, and those categorised by a number of different psychological labels ending in the word “syndrome”.
I grew up here and so it meant that throughout my childhood I lived among such a variety of other children. Looking back, I realise that it was taken for granted that we knew each other by name rather than by labels. In fact it may be this experience that has led me to have problems categorising people conventionally, and to become a sociologist. For example, I have always been skeptical of the idea of IQ measurement. It may or may not be empirically verifiable on paper, but in real life it did not help explain why some children reacted more swiftly or appropriately than others. And I find the focus on labeling individuals out of the context of relationships and systems fundamentally suspect.
Strengths, Not Disabilities
For over thirty years I have been responsible for the extended family of Mill Grove and I have come to see children primarily in terms of their gifts and strengths rather than their disabilities. So, for example, one who has cerebral palsy is clearly very good at listening, remembering and critiquing arguments, as well as very strong in his arms and shoulders. If you met him for the first time you would notice that he relies on a wheelchair for much of the time, but in the context of our family life that is hardly an issue. It is certainly not a defining feature of him as a person or friend.
It was probably Jean Vanier in his retelling of the story of how the L’Arche Communities began that reinforced the way I was thinking. You may recall that he began his work by setting up a home for two vulnerable adults. He did so with the very best of philanthropic intentions, but it was a failure. Looking back he came to see that a major problem was his own fundamental attitude: he saw himself as the person who was giving care and support to the other two. In this paradigm he was resourceful and they were needy. In time his whole way of seeing their relationships shifted, and he came to see one of the big problems as his own pride. That was his handicap or disability. He came to believe that there was little that came between these two vulnerable adults and God, but that in his own case the relationship was obstructed by his pride.
That story has always had a very powerful impact on me. Whenever I have personally assumed the role of care-giver, or others take on that role, I begin to question whether the reciprocity that is essential to human relationships is being allowed to develop, and whether “clients”, if that is what they are called, are being seen and related to primarily as inadequate human beings with particular labels and needs, or whether they are respected in the first place as human beings with particular gifts and strengths. It means that I am generally skeptical of services and service provision which take the place of creating the space and room in which potential can thrive and love can grow.
An example of this approach is the book, The Gift of Dyslexia. Instead of seeing dyslexia as a problem, and those on the spectrum solely as in some way inadequate or in need of special attention and help, it begins by looking at strengths. Just as a blind person may have special gifts of listening and reading situations through sound and scent, so those with dyslexia may have particular talents. This is certainly true of the two in the extended family of Mill Grove that I have known best. One found she could answer complex mathematical problems without needing to do any working out. This might have been seen as remarkable gift: in fact it meant that she was suspected of cheating and penalised for not writing out her calculations!
The other young person was a natural mechanic who was able to take apart and assemble everything from models to full-size machines without ever needing to refer to a manual. And he worked at a phenomenal rate. Schools were for all sorts of reasons quite irrelevant to the development of his precocious talent. He was regularly suspended from them.
Another young person to whom I have alluded in a previous column was at the other end of the scale: he could neither solve mathematical problems, nor ever attempt to take apart or put together anything. But he was willing to go each day with his mechanical friend to college when he realised that his friend lacked the confidence to go by himself. He never calculated how much time he devoted to helping others: in fact he never calculated time at all. As I write he is getting ready to meet the young man in the wheelchair at a London station, but there is no sense in which he sees himself as a carer or service provider.
You will see that in each case a “disability” was accompanied by a gift. Yet it was possible for some teachers or social workers to see primarily or only the “needs”, and to miss the abilities.
Interdependence, Not Independence
But you will notice that so far we have treated the four young people I have mentioned as individuals. And that is a prevailing ideology in our society. They are assessed, treated and encouraged as individuals. One of the tasks that schools and social services were supposed to undertake was to “prepare them for independence”. Clearly this misses one of the main dimensions of what it is to be human: relationships and community. Interdependence is self-evidently essential for individual and social well-being.
Disabilities and abilities are relative, and can be transformed if we think of relationships and teamwork. So put these four people together and you find immediately that they have complementary skills. The only question is whether they are able to combine effectively. And I am pleased to say that they did and do. And perhaps you begin to see why “non-specialism” is so important in the way we live. Were we to specialise in one condition or another we might find we lacked the range of needs and gifts that combine to make teams and community.
But there is another discovery that we have made when it comes to so-called disabilities: that the child in question is often one who brings the best out of others, and stirs deep emotions and engenders joy. We had a child living with us for some time: he could not speak and found relationships very difficult. Yet we came to love him, and when he left we missed him as much if not more than anyone else who lived as part of the family. Was it that he brought us together? Was it that we related to him at a deeper level than those who were able to communicate by speech? (I suppose you might make a comparison here with the way music connects with our hearts, and goes “too deep for tears”.)
Gifts, Not Disabilities
In writing like this there is always the risk of sentimentality and romanticism. It can seem like painting things with a rosy hue. But what I am trying to communicate is an approach to children that privileges identity, personhood and relationships over categories and labels; to focus on gifts rather than needs; on reciprocity rather than service provision; and community rather than individualism.
This is not to dispute that there are children with severe disabilities, but that in acknowledging this we should not lose sight of some of the characteristics of others that can seem very close to hubris and pride: “I thank you that I am not like others”!
We would be wiser to think of everyone having different gifts.