The Breaking of Relationships

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 newborn 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” fetus, 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 uncooperative and irresponsible.

Either way, little is done to help parents 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 devalued 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 that he or she is the cause of a lot of stress and anxiety for the people who love him or her, which of course is another erosion of the child’s selfesteem. (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 doctor’s skills and concern and make her/him feel powerful and fulfilled; or a teacher’s favourite pupils are the ones who clearly learn and grow under the influence of her or his teaching, the relationship between professional and “client” is relative to results. When parents are turned into therapists or educators for their disabled children, the children 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 children’s cooperation 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 his or her “impairment” as an integral part of his or her being. If the child is in pain, he or she probably wants 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 his or her 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 his or her personality, skills, and sense of belonging in the world. When other people assist the child to initiate interactions, the child learns to expect cooperation from others, and develops 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 the level of professional intervention, the less the child will “play” and the more he or she will be directed by others—and the less ability he or she will have to protest or get away!

Many “programmes” for young children, for example DolmanDelaccatto 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 one’s relationship with oneself because the assumption is made that the impairment is the enemy. In reality the impairment is part of the person, and only the person himself or herself can 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, if 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. 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 nineteen, without the agreement of the parents (in England, 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 a 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 musn’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 is kind, dedicated, and morally pure is no more than a fantasy. It is hard for children, 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 as 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. In fact, independence is a complete illusion even for the most able human being. Essentially we are social beings who live interdependently.

When people are asked to think about the first half-hour of their day from the time they wake up (see “Disability Equality in the Classroom—A Human Rights Issue,” Mason and 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 cooperation 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. 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 disabled is that these structures exclude people who are not ‘average.’ Disabled people can only be enabled 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. We can begin to see that in fact, with cooperation and team work, human beings have limits caused only by a lack of imagination or courage to dream.

The goal of independence can 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 with 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’ her or his passage, and programmes are designed to ‘teach’ the child the steps she or he 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 sidestep 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 preformed 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 ‘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 himself or herself heard by a world which is 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, naivete, numbness, fear, inexperience.

People paid to be in your life may be the only people around to answer the need, but this causes impossible conflict for professionals and care-workers. More often it is other disabled people who are left to try and fulfill 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 coexist if such relationships were allowed to develop, and consequently try to stop them.

Someone who breaks through all these barriers and the isolation 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 persons. The idea of “normality” is a two-edged sword. Disabled people, particularly those who have been brought 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 to’ or ‘counselling’ nondisabled people who come along to ‘help’ them, but it is almost never acknowledged that this is what is happening. So the disabled person does not learn to appreciate her or himself for the work she or he has 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 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 from and in competition with each other. Isolation and loneliness are 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 is designed to support relationships rather than damage them or replace them. Inclusion and participation are the goals disabled people have made for ourselves.

 THE AUTHOR

Micheline Mason is a disabled woman and a survivor of the segregated school system. She is a trained artist and has written several books, articles, and papers on different aspects of the oppression of disabled people. She has been a Disability Equality Trainer for ten years working with many service-providers on redesigning services to reflect the social model of disability. In the last few years, since becoming the parent of a disabled child, she has worked extensively with parents of disabled children who are fighting for their children to be included in mainstream schools and communities. She is a founder of the ‘Integration Alliance’ which is campaigning to change the law which allows Local Education Authorities to place disabled children in segregated schools against the wishes of the child or her parents. She is also involved in producing materials and training courses for parents, teachers, and children’s services on ‘inclusion.’ (She is also the International Liberation Reference Person for Inclusion for the Re-evaluation Counseling Communities.)

This paper has been produced jointly by Parents in Partnership and the Integration Alliance.

Parents in Partnership is a London based membership organisation of parents of school-aged children who are disabled or who have learning difficulties. PIP’s aim is to empower parents to become informed and effective allies to their children in their fight for justice, through publications, support groups, an advice line, and training courses for parents.

The Integration Alliance is a National Membership organisation, controlled by disabled people and open to anyone who wishes to campaign for the repeal of the law which requires Local Education Authorities to segregate children with ‘Special Educational Needs’ by the use of compulsion and prosecution of parents who do not comply with such a placement. The Alliance believes that this law is preventing the restructuring of schools and support services which is necessary to build an Inclusive Education system, as well as causing unnecessary anguish to many families.

Micheline Mason


Last modified: 2017-05-06 23:35:41-07