Micheline Mason
Shining a light on inclusion

The Breaking of Relationships

aby held by 'expert'

If you were to ask anyone what it is that gives their life meaning, most would say it is the people they love and who love them. Childcare theorists virtually all agree that the bonding process between a new-born infant and his/her primary carer is crucial to the child thriving. Without this even where all physical needs are met, babies wilt and sometimes die.

Disabled people suffer a form of violence which is unrecognised. Current interventions from nearly all professionals and service providers have the effect of breaking natural relationships between disabled people and everyone else. When this happens in early childhood, the consequences are devastating both for the child, and for society as a whole. Let us examine many common practices around young disabled people.

Pre-natal testing

Even before a child is born interventions serve to damage the relationship between the child and her/his mother. In this period of time, before the baby has a look and a feel, a sound and a name - before it becomes a real, unique individual, the relationship is at its most vulnerable. Pre-natal testing, with its expected result being termination of any imperfect foetus, is offered routinely to pregnant women. The world, through its white-coated spokespeople, carries a value judgement into the new relationship which can completely destroy it, even before the mother and child have met. The mother, at this point, may be armed only with what she has learnt about disabled people from charity posters, special school buses, and the popular press. Everything, including these kind doctors who are looking after her, is telling her that the world does not want any more disabled babies, and that she would never be able to cope. Her fear may well lead her to agree to end that baby’s life.

Disclosure

After birth, interventions rarely have such a dramatic effect because everything is balanced against the reality of the child, and the positive feelings which that child may evoke in his/her carers. Even so, the relationship begun with the child is likely to suffer many blows and manipulations along the way to adulthood.

Many parents of disabled children talk of the moment of disclosure - the time they were told that their baby had an impairment. They talk about being isolated from the rest of the ward, curtains, embarrassment, clinical language they did not understand, an aura of sadness, disappointment and commiseration. Parents still tell of suggestions from medical staff that they should leave the baby behind in the hospital and forget about it. Bereavement counselling is offered although the baby is not dead, to help the parents grieve for the proper baby they did not have. Then they are sent off home to come to terms with their tragedy.

The Search

Now totally pulled in two, parents often begin to love their child, but hate the impairment, as society has taught them to do. They see the impairment as the cause of society's rejection and desperately start to search for people who can take away or mend the impairment. Many willing people will turn up anyway, with therapies and programmes which hold promise of doing just that. Some parents do not wish to follow this path, and resist the efforts to medicalise and manage the child, but these parents are often labelled unco-operative and irresponsible. Either way, little is done to help parents to relax and feel proud of their disabled child, or to give parents an understanding of the oppression they are inevitably facing because of having a child who is de-valued and denied basic human rights within the current legal framework. They know they have to fight for everything they get, but no-one tells them why, or makes the connection with disabled adults who are struggling together to end this kind of mistreatment.

Perhaps more importantly, no-one takes the burden of this fight off the shoulders of the already exhausted parents and leaves them space and energy to play, and have fun with their children.

Enjoyment is the last thing on the agenda when talking about parenting and disability, but without this the child feels they are the cause of a lot of stress and anxiety for the people who love them, which of course is another erosion of the child's self-esteem. (Disabled children often learn to be bright and cheerful and flippant about their own needs as a way of attempting to cheer up their parents.)

It is inevitable that all this damages parents’ ability to love their child unconditionally. In the same way as a doctor’s favourite patients are her/his success stories because they validate the doctors skills and concern, and make her/him feel powerful and fulfilled; or a teacher’s favourite pupils who are the ones who clearly learn and grow under the influence of their teaching, the relationship between professional and "client" is relative to results. When a parent is turned into a therapist, or an educator for their disabled child, the child may well feel that the love which they so desperately need is conditional on their performance in the "getting better" game. Likewise, the parents may also feel that approval from the "real" professional depends on their child's co-operation and "improvement" - The Portage worker is really nice, and she will stop coming if you don't learn to pick up this cup .........

Goodbye to Self

Where is the child in all this? The unique individual who came into the world expecting a fanfare and champagne, only to find tears and disappointment? For a disabled child the world can seem very strange indeed. Lots of adults paying attention to something of which the child is completely unaware. The child's sense of self always includes what others call their "impairment" as an integral part of their being. The only them they have ever known. If they are in pain, they probably want it to stop. But apart from that, the child is like any other, driven to learn and become itself - a whole, new person with a body, mind and soul.

A disabled child, even with major difficulties in moving, speaking or processing information, will seek to gain control over self and the environment according to their own inner motivation. Through endless interaction with others and the material world, through play and experiment, trial and error, laughter and tears, every child develops their personality, skills, and sense of belonging in the world. When other people assist the child to initiate interactions, the child learns to expect co-operation from others, and confidence in her/his self. Play and therapy are not the same thing. Play is about the child's goals, therapy is about the adult's goals. The more impairments a child may have, or the greater degree of those impairments, the higher is the level of professional intervention, the less will the child play and the more they will be directed by others - and the less ability will they have to protest or get away!

Many programmes for young children, for example Dolman-Delaccatto therapy involve forced manipulation of the child's limbs for several hours a day, by adults the child may not even know. It is difficult to know how the child can cope with this without shutting off, going numb, or giving up in some way.

The medical model of disability attacks ones' relationship with oneself because the assumption is made that the impairment is the enemy, but in reality the impairment is part of the person, and only the person can themselves choose to separate them without feeling torn apart. So uninvited intervention, however well meaning, is a form of violence to the inner being.

Separation and Segregation

If the self is thwarted in its development, and the impairments become the major factor in planning a child's life, and the parents’ love for their child has been eroded by the negativity surrounding their child and children like them, then it is easier to understand how parents can be persuaded that sending the child away to specialists is the best thing for everyone. And even if parents do not think it is the best thing, it doesn't matter because the State still has the power to segregate disabled children and place them in separate schools and units, some residential, up until the age of 19, without the agreement of the parents ( Section III, 1993 Education Act). For many more seriously impaired children, this separation can begin as early as two years old. Whatever the hoped for outcome of such a drastic measure, the immediate effect is to create an artificial environment for young disabled people, away from their brothers and sisters, from their local friends, and sometimes even from their parents. The idea that you can remove people from each other in order to teach them how to relate to each other, is patently absurd. Clearly relationships are not the goal of special education. In reality the bringing together of any group of people on the basis of common difficulty, is not a natural thing to do. People choose friendships on the basis of common interests and complementary needs. Children in special schools, especially where the common difficulty is of communication, find it impossible to form mutually fulfilling peer relationships and are forced to relate instead to adults - adults who do not love them and who are paid to be with them. The loss of natural relationships has never been acknowledged as the price disabled people pay in the hope of having some of their other needs met.

Just as fundamental is the loss to the non-disabled world of the opportunity to know, like and learn how to support disabled people as peers. Deep down inside we all internalise the message that neither group needs the other, that, in fact, we must be separated for our own good, otherwise we will actually harm each other. Non-disabled people are led to believe that only professionals are fit to be around these people, and professionals are led to believe that they mustn't be friends with disabled people because it would cause role-conflict. Disability becomes something frightening, a cause for exclusion, something which is nothing to do with us. Because we also know that impairment can happen to anyone, at any time, and we could ourselves become disabled people, the whole issue becomes terrifying, one about which we would rather not think, and certainly not be reminded of by the appearance of a person in a wheelchair.

Vulnerability to abuse

Powerless, oppressed people have always been vulnerable to abuse by others. Physical and sexual abuse of disabled children is far more common than anyone would wish to believe. The idea that everyone who works with children or disabled children are kind, dedicated and morally pure is no more than a fantasy. It is hard for the child who already may have had their body manipulated and cut-up by doctors and therapists, without giving their permission, to know when they are being abused. Even when they do, they often have the added problem that no-one believes them. Or the worst nightmare, the child simply does not have the language to tell. This is gradually changing as the adult world is learning to face unpleasant facts about the exploitation of children by unscrupulous people, but for disabled children most abuse still goes unrecognised.

Training For Independence

It has been assumed that all disabled people want to be independent as possible, and few would question this. It is part of western culture to see the need for help from others as a bad thing. All children are encouraged to leave behind signs of their dependence - breasts, nappies, bottles as soon as possible. This continues into all aspects of growing-up - learning to feed oneself, dress oneself, bath oneself, even amuse oneself. These are all considered to be signs of maturity and worthy of applause. Wanting attention is considered a punishable offence from the age of about two onwards. It is not surprising then that this value judgement is extended into other areas of life until it becomes difficult for most people to admit that they need help, or cannot manage alone. Loneliness and isolation are painfully common, but the connection between independence and aloneness is seldom made. Yet independence is a complete illusion even for the most able human being. Essentially we are social beings who live inter-dependently.

When people are asked to think about the first half-hour of their day from the time they woke up (see Disability Equality in the Classroom - a Human Rights Issue Mason & Rieser 1989) and then asked to list all the people who made that half-hour possible (e.g. I woke up in a bed. People manufactured the bed with materials gathered or produced by other people. More people transported the bed to a retail outlet where more people sold it to me. Others drove the bed to my house and carried it into my bedroom. My wife bought bed clothes for the bed and put them on......) It soon becomes apparent that hundreds, if not thousands of people were directly or indirectly involved with that individual’s life. Without co-operation from others, most of us could not feed ourselves or make ourselves a decent shelter. Nor would we want to. Life on a desert island does not appeal to many as a long term proposition. This interdependence is something about which we do not talk or even consciously think about. It serves society's interests best to impersonalise the help we give each other by building it into services, structures and systems. This way the needs of the systems themselves can become paramount without us noticing. Our individual human needs can slip off the agenda.

In this culture we are subtly taught to accept limitations on the amount of visible, individualised help that we can reasonably expect of others. All of us learn to live within boundaries set by what we can manage more-or-less on our own (unless we can pay for assistance). We do this because we are persuaded that it is demeaning to do anything else. For average, non-disabled people, these limits are usually wide enough to live an acceptable life, because the scope built into the services and systems available to the general population, enable such lives to be created. The whole point about being dis-abled is that these structures exclude people who are not average. Disabled people can only be en-abled by altering the structures and systems, or providing individualised assistance from other people. By the simple act of saying I need your help to do this thing that I want to do, we are able to break free from these limits imposed by isolation, and can begin to see that in fact, with co-operation and team work, human beings have limits only caused by a lack of imagination, or courage to dream.

The goal of independence can therefore be misused as a prison for disabled people. It often carries with it an implied assumption of which disabled people are painfully aware, that there will not be human beings in the disabled person’s life who freely want to be with them, and help them achieve their goals. They must learn to manage as best they can and be as little trouble as possible to others. This explains why so many classes in 'special schools, colleges and training centres seem to be obsessed with sandwich making and bed making, rather than sex-education or any form of academic or vocational learning.

Disabled people and people with learning difficulties are challenging this whole concept of independence by defining independence as being in control of their own lives, including the level and type of support they need. Clearly it is about building peer relationships rather than learning to live without them.

The Developmental Curriculum

One of the most insidious forms of breaking relationships happens to children who are given labels which include the letters P, S or M (Profoundly, Severely or Multiply). These young people are very likely to find themselves locked into a system based on ideas from paediatrics and child-development theory. This theory states that normal children follow a straight line of development following a consistent pattern of steps or milestones within a broadly similar time-scale, e.g. reaching - grasping - pincher movement - holding - manipulating - dropping an object at will etc. Diagnosis of a disability or learning difficulty usually means that doctors have become aware that a child is not progressing along this line as one would expect. It is then assumed that the child needs adult intervention to assist their passage, and programmes are designed to teach the child the steps they should be taking, in the correct order. Because the order is considered to be essential (one CANNOT jump over steps), the pace of learning is tightly controlled. When the child can consistently show us that she can differentiate between red and blue, then we can add some more colours (Quote from a teacher in a Language Unit) or our learning goal for all the children in this class is that they can turn towards sound (teacher in a school for children with Severe Physical or Learning Difficulties). This leads inevitably to age-related levels of function defining the child - She has a mental age of five.

People who are disabled, or who live closely with disabled people know that this concept of development has little to do with real children who have physical or intellectual impairments. Real people are far more complex and individual than that. The main flaw in the theory is that it takes no account of the fact that there is more than one way to do, or learn anything. Many disabled children develop different, unique strategies to cope with, get round, overcome, or side-step blocks and difficulties which are in their way. It can take time to create these alternative paths, but having done this, they carry on their way.

If you pour water over a pre-formed shape which has one, sloping, channel which leads directly to the edge of the shape, the water will naturally follow the path of least resistance and flow quickly into the channel and down, off the edge of the shape. If however the shape is flatter, and has more bumps and grooves, the water will meander and form many small islands and rivulets whilst it finds its way to the edge. It may fan out, reaching its destination quickly in some areas but swirling about slowly in others. This is much more like the development of disabled children - unless it is prevented by well-meaning adults.

The effect of this level of 'structured learning' on the inner child, can only be guessed at. Proponents and practitioners of Facilitated Communication have defied the straight line theory of development by discovering the ability to recognise and choose symbols, letters and words in children and adults who were considered to be functioning at infancy levels. The communications which have come from the young people have confronted the world with the uncomfortable possibility that locked inside each child is a whole, thinking, feeling human being, unable to make themselves heard by a world which was not listening.

Healing the Wound

Friendships and sexual relationships are about self-worth, giving, intimacy. Deprived of love and validation, many disabled teenagers long for romantic, physical healing relationships. But they have so much stacked against them - poor self-image, underdeveloped social skills, limited connections, prejudice, naiveté, numbness, fear, inexperience.

People paid to be in your life may be the only people around to answer need, but this causes impossible conflict for professionals and care-workers. More often it is other disabled people - who are left to try and fulfil each others needs. In the closed communities in which many disabled people are forced to live, such relationships can become deathly intense, with jealousies raging. Staff may feel that life would just become unbearable where everyone has to co-exist, if such relationships were allowed to develop, and consequently try to stop them.

Someone who breaks through all these barriers, and the isolation of the person themselves, can be felt to be a saviour. The feeling of need may be frightening. Old hurts will reappear with the hope of healing, but the other person may not know or understand this, or be able to help. Disabled people may also be unprepared to help with the problems of able-bodied person. The idea of normality is a two-edged sword. Disabled people, particularly those who have been bought up separately, are often given the idea that non-disabled people are basically all right - that any problems they have are insignificant compared to the colossal problems of the disabled. It can take quite a while, and quite a few relationships for disabled people to learn that this is all nonsense, and that the so-called normal people are anything but, when you get to know them. (Disabled people often find themselves in a position of listening or counselling non-disabled people who come along to help them. But it is almost never acknowledged that this is what is happening, so the person does not learn to appreciate themselves for the work they have actually done in paying attention to a person in need.)

It's a wonder we still come through, forging relationships of enormous depth and maturity when given the opportunity. The healing power of a tender caress on a body which has been tortured, or feeling the pleasure given to another by a person considered to have nothing to give - these interactions between human beings are immeasurably important, to heal the divide. Sexual relationships also have the potential of creating new life - the ultimate contradiction to eugenic philosophies of disability and disease. Perhaps this is what is at the heart of the matter. The unspoken fear that disabled people will reproduce themselves and contaminate the gene pool for all of humanity.

Conclusion

We are at a fork in the road in terms of our approach to disability and disabled people. One road continues trying to alter disabled people from the outside, whilst society in general stands aside and waits for the miracles to happen. The other road moves towards accepting the fact of disability as part of ordinary life, and works to help society value and include disabled people as they are.

The skills of nurturing relationships are ones which society is rapidly losing. The Market economy reflects a value system which sets people apart and in competition with each other. Isolation and loneliness is a terrible price to pay for the few material privileges which are on offer. Disabled people, even more than others, cannot survive without relationships. This has often been our downfall, but it could be our salvation - it could be the beginning of a new approach to service, in which every intervention was designed to support relationships rather than damage them, or replace them. Inclusion and participation are the goals disabled people have made for ourselves.

If professionals are to come alongside us as our allies, then how will your work practices need to change?