Japanese author S.I. Hayakawa told the story of a man who was asked if he could play the violin. ‘I don’t know’, he answered. ‘I’ve never tried.’ In each of us there are unknown possibilities and undiscovered potential. An open self-concept allows us to continue to expose ourselves to new experiences, thereby continuing to discover more and more about ourselves and our abilities.
A person with a learning disability, like everyone else, has interests, feelings, ambitions and dreams—and the same unique individuality and right to equality and participation in the normal rhythms of everyday life. It is essential that we see people with intellectual disabilities as ordinary human beings—babies, children, young adults, elderly people (‘people first’). They may be slow to learn, somewhat clumsy in their work, have difficulties coping with the complexities of modern life. But there is a great range in the intellectual and social functioning of persons with intellectual disabilities; they differ in the patterns of their strengths and weaknesses, assets and limitations, just as others do.
In recent years, much has been done to improve the quality of life of people with developmental disabilities; to develop services and facilities to help them live, work and enjoy their leisure within their local community. But we have a considerable way to go before we can claim to treat each person with a disability as having the same self-worth and value as other members of that community—with the right to be accepted as he/she is.
Abraham Maslow (1987) identifies five fundamental human needs in order to live a safe and fulfilled life: physiological, safety, social, self-esteem and self-actualisation. The first two areas of need—for food, clothing, rest, shelter—are generally provided to persons with a developmental disability in civilised societies. However, much more must be done to satisfy the other three needs. Maslow talks about the need to establish and maintain social contact with the people around us—to share a close and emotionally satisfying relationship with another person, the need to belong, to be accepted and loved by others. Schutz (1966) suggests three important social needs: inclusion (building relationships), control (influencing others) and affection (to be cared for and to care for others). When these social needs are fulfilled, an individual can satisfy Maslow’s two final needs: to develop their self-esteem and self-actualisation—in other words, the need for self-respect, the esteem of others and the need to feel useful and necessary to others. Self-actualisation is the need to maximise our potential, to become that which we are capable of being.
How can these needs be met for people with learning disabilities? How can they know and accept themselves, express themselves and find their full potential? Psychological studies indicate that there are three general ways in which people develop their self-identity and self-esteem: by the development of close relationships, by discovering their own skills and effectiveness in their environment, and by accumulating possessions. Sadly, people with learning disabilities may have limited skills and abilities, and may not accumulate many material possessions which they can call their own. By labelling them as people with limitations, we have in reality put restrictions on their individual identity, self-worth and value. The primary way, and perhaps the only way, by which they can come to know themselves as people of worth and value is through human contact and human relationships.
Human beings do not grow and develop in isolation. They need family and social networks to work their way through cultural rites of passage, before they can take their place in the adult world. Human contact, communication and relationships shape and mould the developing personality. People need each other in order to be themselves and they are incomplete without satisfying personal relationships. Jean Vanier (1975) acknowledges this:
‘The need to be loved and cherished is so fundamental to every human being. Any of us, if we feel we are not wanted, considered useless, a burden, we close ourselves up and harden ourselves in order to avoid the suffering pangs of loneliness and anguish. But still our hearts yearn deeply for this personal relationship, for somebody who will understand us, love and cherish us, accept us as we are and see in us, deeper than our limits, the meaning of our lives.’
Love entails using relationship skills that affirm and support ourselves and others. These skills are applicable not only to close personal relationships but to all interpersonal dealings. To be able to relate totally to another human being is to be most oneself, to affirm one’s own personality in all its uniqueness. And those who succeed in achieving the greatest degree of independence and maturity are also those who have the most satisfactory relationships with others. Despite the centrality of relationships in all our lives, few people with learning difficulties are systematically trained in the skills of relating. Relationship skills are difficult to acquire and to use on a daily basis, and their lack, along with deeper fears and anxieties, is often displayed outwardly as unhelpful behaviours by people with learning difficulties. People with special needs need support and affection, and the opportunity to express the range and intensity of their emotions. Our present services provide for most other needs, especially the need to be cared for, but not for creating relationships and intimacy.
Sadly, people with learning difficulties are labelled, segregated in various ways, and many subtle and unconscious barriers are erected by parents and service providers. Staff are provided to ‘care’ for them, often on a rota of shifts, when service users have a far greater need for enduring loving relationships with those around them than for frequent but brief loving encounters with a large number of people. All of us have the same need to some degree, but ‘normal’ people can better adjust because of their skills and material possessions, whereas people with learning difficulties may have no means of coming to know themselves and being affirmed in their worth other than through the people around them.
While the needs and rights of people with learning difficulties are stressed, and how personal relationships are an essential and integral component of personality development, it must be noted that responsibilities and obligations are inherent in these rights. All relationships exist in the social context of a group, organisation or community, which provides a texture within which our relationships are embedded and governed. Relationships do not exist in a vacuum. The crucial fact is that the system—the family, the organisation or service model—must create an ambience which encourages the expression of feelings of love and intimacy appropriately, and not their suppression.
Professionals and parents need to ‘protect’, ‘care for’ and ‘supervise’ people with learning difficulties. But the world is not always safe, secure and predictable. To prepare for living in contemporary society, every personal human resource must be developed. People with learning difficulties, too, must be helped to identify and minimise risks in their lives. To deny them their fair share of experience is to further cripple them for healthy living. Their human dignity is acknowledged by Perske (1972): ‘You have a right to live as other fellow human beings. Live, even to the point where we will not take all dangers to your life away from you.’ In any person’s attempts to build close, creative human relationships, there is risk and chance of failure, hurt and pain; people with learning difficulties cannot be shielded from those aspects of personal development.
For people to grow in intimate relationships, they must be involved in a system with which they are comfortable. Through advocacy and guardianship, and self-advocacy, an environment conducive to wholesome growth through personal relationships should be actively promoted.
To paraphrase Rhodes (1972): we need to recover the unity of the person, to help the person with learning difficulties to grow as a person, we must begin by establishing and maintaining a balanced relationship between that person and the carer. This is based on mutual respect of personhood, abilities, rights, time commitment, personal preferences and feelings. The relationship between a learner (previously labelled as having a handicap) and teacher/carer should be the same as any sound relationship between persons working together on a common task.
A basis of respect and recognition allows each person the freedom to be himself or herself, adapting only in order to create an environment where barriers are broken down and relationships flourish. The wise philosopher, Martin Buber, says: ‘Man wishes to be confirmed in his being by man, and wishes to have a presence in the being of the other—secretly and bashfully he watches for a “yes” which allows him to be and which can come to him only from one human person to another.’ One cannot be friends with another on any other terms than on the terms of equality—our common humanity.