Possibilities of Independent Living of persons with disabilities in Africa

Independent Living:
Ideology & definitions

Possibilities of Independent Living of
persons with disabilities in Africa

by Felix Silwimba

 This is a very important subject requiring deep thought and analysis. It requires a multi-disciplinary approach taking into consideration the fact that little has been written about people with disabilities in Africa. Therefore, reference material has to be drawn from the general textbooks of social sciences and principles of community health on the epidemiology of diseases. One approach will be to take an historical analysis broken down into three parts.

• pre-colonial era
• colonial era
• independence era

In the pre-colonial era life could be described as being war-like. It was survival of the fittest. Tribal wars were common place and wild animals also poised another big danger. In this period, there were very few disabilities because the traumatized or severely ill person eventually met with early death as medical services were not available. The only disabled persons where those with hand, earlobe amputations or those who had their eyes plucked out as a form of punishment for wrongdoings. Therefore, persons with disabilities were highly ostracized. Visual impairment of other causes may have occurred but it is not mentioned very much in most of the folklore. Congenital conditions such as club foot, missing limbs or part of a limb is made mention of in folklore. Mostly they are described in humanistic terms. There is one strong example in the Bemba history in which a chief's sister gave birth to their only baby boy who had no hand. The chieftainess reacted by surrendering the care of the boy to her sister for it was held that the chiefs children have to be perfect. The paradox is that this same baby later turned out to be one of the best chiefs of his tribe. Therefore, we can say that even at this time some disabilities were accepted nicely.

Colonialization brought with it ceasefires between waring tribes. Peace and stability gradually became a reality. Strong men were required to go and look for jobs in the mines. Medical services and the hygiene of the communities gradually started to improve. This meant that a severely traumatized person or one suffering from a chronic disease, i.e. tuberculosis, had a chance to survive. Consequently, conditions which may have caused death now lead to disablement. The two world wars also left disabled individuals.

Missionaries capitalizing on their previous experience in Europe started to care for people with disabilities to the relief of the afflicted families. This benefitted the missionaries most since it enabled them to convert many resistant persons to their religious convictions. Since that time the care of a disabled man has been left in most part to missionary societies.

The struggle for independence brought with it new forms of disabilities as a result of clashes between the nationalist movements and colonial government forces. This is not so significant in Zambian society. However, in recently independent nations it is of utmost importance. In the Zambian situation after independence many changes took place; there was a marked improvement in providing services to the community. The hygiene of the community improved and infant mortality fell and the poliomyelitis paradox set in, which today accounts for over half of the physically disabled youths and adults in Zambia and most developing nations.

In traditional society, a disabled man is considered as a sick man which implies that he has to be provided for by the other family members and the extended family. It is strongly believed that letting a disabled family member suffer is offending ancestral spirits. Should he/she die unhappily, a spell will be cast on that family. Consequently, they tend to hold disabled persons with reverence. They tend to over-emphasize the disability, thus allowing individuals who have a disability little opportunity to explore the environment. Naturally, our people tend to derive pleasure in giving to disabled people rather than receiving from them.

Some factors associated with independence in contemporary society

The majority of the population in developing nations live in rural areas. The lifestyle in these places require physical strength to grow enough food and to support a family. Thus, the deaf and mentally disabled can lead a better life than the physically and visually disabled. In my experience most deaf persons lead independent lives in their communities and are considered hard workers in manual work. They marry and raise a family. I know of a few blind men who are good charcoal burners and farm workers and have married. However, for the physically disabled even with provision of technical aids, life is still hard in rural areas.

Living in urban areas depends more on being brainy than brawny. This is the ideal place for physically disabled persons because their survival depends on intelligence, creativity and ability to organize people. In town, there are many ways to raise money without much physical effort even if one is not well educated.

Factors associated with individual independence

The outcome of the disabled person's desire and ability to be independent depends on various factors most of which can be overcome. Some of these are parental influence, age at onset of disability, type of disability, educational status of the individual and environmental barriers.

In considering parental attitudes, I take an ideal situation where homes for children with disabilities are well provided for. It can be stated that poor parents, for obvious reasons, would be willing to surrender their disabled child to such homes. Conservative parents, because they want to give special care, may also surrender their child to the so-called experts. However, liberal parents, mostly with college education, are mostly unwilling to surrender their child. In most instances they would rather keep the child themselves and treat him/her like anyone else. Liberal parents build a mind of seriousness, critical analysis and desire to succeed in a disabled child who,being well adjusted and disciplined, may eventually become the envy of society. Generally, liberal parents are not authoritative and do not offer everything on a silver platter. They allow the disabled child to explore his own environment and set up his/her own standards and learn to live with his/her limitations in a respectful independent manner.

The age at onset of the disability is of special relevance for independence tendencies of a person. People disabled from early childhood in general terms tend to be well adjusted and can be rated high on the independence score. They have had enough time to explore the environment and thus adjusted to the limited resources. This is of significance to Africa because most of the disabilities are a result of childhood infections.

Individuals disabled in adulthood find it hard to adjust, for obvious reasons. They are firstly in a state of social shock because they do not know what to do. Some lose employment and their families denounce them. They have just suddenly lost all the virtues of being non-disabled. Some go into a state of depression upon realizing they are now objects of charity and pity. They used to be providers and now they are being provided for. In case of ladies, they loose their beauty. The significance of this group is that our societies are defined in masculine terms; the ideal being an athletic body. Disabled men are generally considered as inferior and less potent. Therefore, this group shows high divorce rates, cry for dependency and become a liability to society. This is the group which requires concerted efforts at rehabilitation to help them re-learn. They are largely responsible for the negative things attributed to disabled people.

The best way and most rewarding thing to do for a disabled person is to give him/her every educational opportunity possible with higher educational qualification and training provided for by reputable institutions. The disabled person can get a well-paying job and be able to have a family and the effects of the disability cease to be recognized. It is overwhelming to note how suddenly everyone starts giving you respect and admiration. Women with disabilities when provided with good education, are able to lead better, respectful lives and possibly marry men of good education and understanding. In fact, disabled women need to be educated most because they are a target of sexual abuse. A poorly educated woman having children is a hurdle to be borne by society. Low standard of education is associated with poor understanding of events, fear to speak one's mind, to stand up for one's rights, leads to withdrawal and menial jobs. Such that negative effects of disability become pronounced. A vicious cycle sets in. The person slowly falls into poverty eventually into learned helplessness because all efforts at survival seem to be exhausted in a non-supporting environment. In this society, the talents of disabled people in art, music and other forms of entertainment are not being exploited because our society is still obsessed with the ideals of 'normal' or 'standard'.

By environmental factors, I mean those factors outside the disabled person's convictions as regard dependency. I take this opportunity to state that perhaps based on humanitarian and moral obligations society conceived of the idea of charitable organizations. Consequently, this duty fell under the auspices of missionary societies who in carrying out the services gathered disabled children, organized for sponsorship and provided needed technical aids and skills. Unfortunately, this kind of aid was limited to a certain age group. After disabled persons left this center, it has been noted, they face problems in adjusting to the hardships of real social life. Being provided for blocks social maturity. In contemporary Africa, Zambia in particular, charitable organizations must review their approach to aiding disabled people. They should take us as full human beings with all the needs of mature adults.

An average African is highly superstitious and easily falls prey to mysticism so that to them disability is a mystery. They take persons with disabilities as people with special powers or as an occult challenge to the afflicted family. Therefore, providing for disabled persons is deemed as appeasing the ancestors. Currently, I am noting that most disabled persons established in their own communities take up leadership or arbitrator roles in community issues. Some have engaged in creative jobs like carving, shaping handles for farming tools, become herbalists and tailors (mainly mending). However, due to the poor purchasing power of the communities, these jobs do not earn enough money for one to live independently. Thus they are mostly exploited. It is only for the joy of contributing something to society that they keep on.

The physical barriers of significance in Africa are the long distances one has to walk to get to schools and shopping centers, and a poor public transport system which does not take into consideration the needs of people with disabilities. Therefore, technical aids have to be quite durable. Wheelchairs are provided by donor agencies. However, they are not very well adapted to our rough roads and long distances, since they are not made locally. Bicycles which can be of benefit to a single amputee or a person with with one paralyzed limb, are not regarded as orthopaedic aids. It is very expensive to get one.

Lower limb prostheses and calipers should be designed to enable the user to walk for long distances on rough surfaces and sometimes slippery wet ground in the rainy season. The appliances that are available, especially calipers, are heavy and uncosmetic, unattractive and frightening to persons who have not seen one before. It is a normal human quality to look for attractiveness and acceptability of an object by others. Today's technologies have the capability to make light-weight, durable, all-weather appliances from metal and plastic. They can be made cheaply and fast. Presently these appliances are provided to very few, selected, better placed disabled persons. Provision of hearing aids, special walking canes or seeing-eye dogs should also be considered.

Architectural barriers seem to be far from being eliminated. In our cities it is risky for persons who have a disability to move about because there are no special paths for wheelchairs and bicycles. Pedestrian crossings are few. Where traffic lights exist they are unreliable. Careless driving is common. In general most of our drivers are not cautious of the pedestrian needs.

Busses and minibusses for public use are not provided with rails for holding on to when getting on or off. There is no legislation for reservation of certain seats for people with disabilities such that if a disabled individual finds all the seats occupied the he/she has to stand. It is difficult to request a comfortably seated person to leave a seat for a stranger. In most cases the busses are over-crowded and uncomfortable.

Let's now consider the concept of prejudice and see how it relates to contemporary African Society. A prejudice can be defined as a previously formed judgement applied to some person, object or situation usually in a hostile manner without considering facts. Prejudices are learnt through contact with the object of prejudice or contact with others who have the prejudice, the latter is the most important. The former may even help eliminate prejudices.

Prejudices tend to persist and get stronger when contact between the prejudiced and his objects of prejudice is remote. Prejudices tend to gratify individual needs and alter memory and perception. That is, in the social hierarchy the prejudiced person feels superior. That is to say a bigot non-disabled man of low economic status may console himself by thinking he is superior to an economically advantaged person who has a disability.

Prejudices can also be considered as a form of displaced aggression channelled towards a weak group that can not retaliate. A lustful non-disabled man who fails to grab a beautiful lady from an economically well-placed and understanding disabled man may develop hate against the disabled community.

When a person is prejudiced, his perception and memory alter that he only sees what he wants to see or what he believes he is going to see. He may be able to remember only the bad side of events concerning his target group. Probably because of their difficulties in understanding their own prejudices, many when reporting to a person in a superior position alter the statement to exonerate themselves and label persons with disabilities as people who lack understanding. This kind of experience is well known to those of us who take every opportunity to stand up for our rights.

Prejudices at their worst lead to social handicap in which the inferior group is prevented from adequate schooling, library facilities, housing and social amenities. The result is poor education, mediocre skills and high unemployment amongst the group, thus making the prejudice true. For instance, the belief that all persons with disabilities live in poverty and unemployment might lead to the provision of substandard training in the name of charity. Thus the training results in lowly educated and semi-skilled personnel who cannot compete for jobs on the open labour market. Therefore, this kind of behavior leads to a vicious cycle where the effects of prejudice help to maintain the prejudice by providing an observable basis for it. This point is of special importance to Africa where many charitable organizations are claiming to be providing for persons who have a disability.

The bad social ressult of prejudice is that it leads to segregation of the two groups, the oppressor and the oppressed. However, in the case of persons with and without disabilities, physical segregation is not possible because disabled children are born from non-disabled parents. The outcome of a marriage between two disabled partners is often an non-disabled off-spring. Despite this, some form of social does segregation exist. This is seen by the actions of most disabled persons especially men when they succeed in getting a good education, a well-paying job or a prosperous business. They tend to marry several beautiful women or rather divorce non-disabled women one after another.

In contemporary Africa, some of the things perpetuating such prejudices are the methods used by charitable organizations providing for persons with disabilities. They provide basic substandard training in crafts such as typing, tailoring, carpentry and metal work and agriculture. Mostly the instructors themselves are lowly qualified such that the disabled graduates are not confident and competent enough to enter for remunerative jobs on the open labor market.

The continued existence of special schools accommodating exclusively students with disabilities is blocking contact between the prejudiced and the object of prejudice. These schools must change into integrated ones. This should be effected at all levels of the educational system from nursery to vocational rehabilitation centers. This kind of arrangement allows for self-exploration as well as re-evaluation of oneself. In this regard both parties start understanding each other. Since we are considering Independent Living of persons with disabilities, it is natural that we realize that it is the concepts of help, charity, sympathy and pity that limit our independence. Therefore, I now analyze what help is.

Help, aid, charity, sympathy, pity -- all these terms are used to express one thing: concern over the suffering of fellow man. However, they are concepts that should be applied continuously when dealing with persons with disabilities because our needs as human beings are intact despite the shape of our body parts or the or the loss of some function. Therefore, we have our own feelings about being helped. Common knowledge shows that help can have the following effects:

Accelerate progress

With respect to physical disability the most obvious is when such help is directed towards making mobility easy. For example, giving a bicycle to a person who uses crutches and can ride one, will do him good because the bicycle will not only ease his mobility problem but will also help exercise the weak limb. Consequently, some degree of development and restitution of function is allowed.
Retard progress

Take the example of a child with cerebral palsy who needs a long to time to dress. Out of pity the poor mother/attendant dresses this child. In this case the child won't know how to dress on his/her own. In long run he or she will remain dependent on other people and cannot develop skills fully. Whereas if he/she was given a chance to dress by himself/herself, he/she would learn the technique and eventually be independent.

Status symbol

This implies that the person giving out help is superior and the recipient is inferior or a second-class citizen. This feeling is strongest among disabled males because our society emphasizes maleness. Thus disabled men being human feel the need to express their worth as men who can do things and be counted on. Also, women with disabilities who get a good education express a need for independence and free expression.

A sixteen year old boy had the following experience when he attempted go assist a person with a physical disability. The boy saw this man buy 10 kg of sugar, so he reasoned that this man with own weak limb would not manage. Consequently, he went close to him and politely asked whether he could assist. To the surprise of the young boy the man refused and lifted up his own sugar and laboriously carried it. The implication is that the man looked at the offer as a challenge of his manliness, especially if the opposite sex was present. Thus he demonstrated that he has strength and can do things independently. The young sympathizer was right in his willingness to help as it is a sign of being a good boy. However, he lacked judgement and timing. If he had allowed this man to carry the load several meters away and then made his move, I am sure he would have been most welcome.

Therefore, help sometimes may be unnecessary or even annoy the recipient, especially if the donor shows signs and symptoms of self-aggrandizement or is himself considered of low credibility. It should also be realized that persons with disabilities also would like to give out just as well as they receive, because help is a two-way process. That is a social relationship in which if you are ready to give then be ready to receive. This is a very important point to be taken care of whenever help is attempted.

Sexuality

Sexual relationships for persons with disabilities are often left out in discussions of the disabled persons' problems. The teachings and actions of society require that disabled persons repress their sexual desires. Sex is a natural innate need present since early childhood. It is the force through which we express our inner feelings, love and establish affectionate relationships. It is a means by which families previously unknown to each other are united. Above all its ultimate purpose is to procreate.

The relevance of appreciating the sexuality of persons with disabilities in analyzing Independent Living of the disabled is that for the proper satisfaction of sex, marriage is the answer, but then it is only an economically independent person who is expected to marry and possibly procreate. Thus when the concept of sexuality is thrown aside in planning rehabilitation of the disabled, emphasis is on teaching only the most elementary skills by which somebody who has a disability cannot become economically independent. Therefore, these persons remain a liability to society, are consequently excluded from the basic human need of expressing and feeling love.

Bibliography:

News letter, Disabled Women's International

Clifford T. Morgan, Richard A. King, Introduction to Psychology, 2nd edition McGraw Hill
Beatrice Wright, Physical Disability: A Psychological Approach, Harper and Row, 1960.

Source: Felix Silwimba, MD, School of Medicine, PO Box 50110, Lusaka, Zambia