ASSESSMENT OF THE LIFE EXPERIENCES OF VISUALLY IMPAIRED ADULTS IN THE EMPANGENI REGION OF KWAZULU

Vision is essential for most employment and is necessary in coimtless experiences that make life enjoyable and meaningful. There are many blind people who humiliatingly, are illiterate because they cannot sign their names, even though they may have high educational qualifications acquired before the onset of their disability. Some blind people can be found at street comers of every town begging for money in order to meet their fmancial needs.


Certain factors such as reactions to loss (rfsi^t, problems experienced by visually impaired persons, adjustment and coping strategies were identified.
by visual impairment, were elicited and interpreted from sixteen persons who had become visually impaired at various stages of development.

DEFINITION OF TERMS
In this study, activities of daily living are all those activities needed for individual sunaval such as eating, dressing, washing, walking unaided, etc. Life experiences are defined as positive or negative day-to-day events or occurrences encountered by a person with visual impairment.
A visually im paired person is an individual whose visual loss caused inability to perform some or all activities requiring eyesight; this definition includes the partially sighted as well as totally blind individuals and the term is subjectively rather than legally defined.

METHODOLOGY
In order to clarify the question of how visual impairment affected experiences in daily living of blind adults in a rural community in KwaZulu, a descriptive survey using semi-structured interviews was used.Table 1 summarises points covered during interviews.

Table 1 Semi-strueturad intarvlaw gulda
The following aspects of experience/dally living were explored:-1.The development of blindness and cure sought.
8. Attendances at rehabilitation programmes and support from health professionals e.g.guidance in direction to appropriate services.

SAMPLE
The sixteen persons (eight men and eight w om en) who c o n stitu ted the convenience sample for this study were between the ages of 21 and 55 years and had been visually impaired from one to more than 20 years.Random sampling was not possible as no sampling frame is available.Visually impaired individuals are scattered widely and there is no central or regional register of persons with visual loss.Initially an attempt at obtaining the sample was made by checking statistics from a hospital out-patient department and clinic attendance records; this was not possible because of inadequately kept records.Patients with eye problems are referred to medical practitioners or ophthalmologists without being entered into relevant records and this gives a false impression that there are not many people with eye problems in the area.
Because it was not possible to obtain the sample from hospital and clinic records, convenience sampling was undertaken by advertising.The Clinic Professional Nurse-in-charge distributed letters to the principals of all primary schools in the area.She requested them to ask pupils to give messages to their parents for all partially sighted and blind adults to visit the clinic on a stipulated day and time.This was done on two occasions and it proved to be successful, imcomplicated and e c o n o m ic a lly viab le.The respondents were then later visited at their homes for interviews.

PROBLEMS OF A CONVENIENCE SAMPLE
The fact that the sample is a non-random type is a major constraint since it is not truly representative of the population of the Empangeni rural community.It is possible that a particularly well-adjusted group of people, proud of the way they had coped with disability, volunteered to be interviewed.
It does not allow generalization, but allows insight and understanding of life experiences of blind adults able to attend a rural clinic.

METHOD OF OBTAINING DATA
Interviews were conducted privately with the family members of the interviewees not present.The researcher carried out all interviews herself and all interviews were conducted in Zulu.Out of sixteen respondents, ten became blind during childhood (between the age of 01 -15 years).This was due to preventable causes, the main one of which was measles.

REACTIONS TO LOSS OF VISION
The question asked of the respondents was "How did you feel after losing sight?"Men and women had similar reactions.Married males and females feared being considered useless by their partners.
Unmarried males and females feared losing their partners and the possibility of not getting married.

PROBLEMS EXPERIENCED
The study revealed four factors as the major problems experienced by the respondents.These are summarised in Tables.
The respondents pointed out that the mobility problem was the most serious one which caused loss of free movement.They explained that restricted physical mobility created other problems for them such as social isolation, inability to carry out activities of daily living, especially cook in g and gard en in g.Som e resp on d en ts d escrib ed m obility problems as causing loss of personal independence, since they had to request a ssistan ce from fam ily m em bers, relatives or friends if they needed to visit important places such as shopping centres and places of entertainment.

Unemployment and flnancial insecurity was viewed by most respondents as great prob lem s.
M ale resp on d en ts emphasized that the mobility problem prevents them from getting employment since they cannot move freely without help and this makes them unable to work and support their fam ilies.They emphasized further that change of roles such as a wife having to support the family and acting as a breadwinner is frustrating and contributes to a sense of being less than a man.They expressed a strong need to educate their children and to maintain a reasonable standard of living like other people.One female respondent was engaged in knitting jerseys and selling them.One male respondent was engaged m car welding jointly with his brother.
Out of the sixteen respondents, one male presented a very different picture than the others.He was fifty-five years old, inactive, less motivated and lived alone in a dilapidated house and could hardly make a fire for himself.He had no source of income and no disability grant.He was supported by his brother's sons.He explained that he had never been employed.He used to look after his brother's stock and was then given some money.His brother died five years ago.He further stated that he would like to be institutionalised since he felt unsafe.
Only 10 out of sixteen respondents had a disability grant although technically all would be entitled to such a grant.Ten respondents receiving a disability grant felt it is not enough since they have families to support and educate.A disability grant is currently R400 paid every second month.
One female respondent with no disability grant was fully supported by her sons and daughters.She was responsible for most house activities.
A ll resp on d en ts stated that they experience a problem of not being able to see their friends or any family member.
All respondents expressed a problem of identif^ng money.They explained that they had to develop ski^ in identifying various coins and notes, and this needed development of a sense of touch.
Those who were self-employed pointed out that quite often they were cheated by people, and they requested assistance from a family member or friend every time they went out selling.
Most respondents proved to have adjusted and coped well to visual im pairm ent w ithout form al rehabilitation.The question of how they adjusted and cop ed with visual impairment was covered during the interview.

ADJUSTMENT AND COPING STRATEGIES
Factors that helped respondents toward the development of adjustment and coping strategies emanated from the data.
As summarized in Table 6 problems encountered after loss of sight were highlighted by fifteen respondents as the most important motivating factor that contributed to their coping.They pointed out that the problems they encountered motivated them to decide on learning new ways of doing things or to adapt present ways so as to be able to carry out normal activities of daily living.The respondents were requested to explain how they managed to cope with visual impairment, since they appeared to have adjusted rather well.They described the process of adjustment as a difficult one that takes time.What actually m otivated them were the problems they encountered after loss of sight.Following the realization of the loss and con com itan t with the implications of the loss, respondents reacted both overtly and covertly to their decreased or lost vision.Depression, self-pity and withdrawal were common.In addition there were multiple fears during this time such as fears about going out alone, fears about whether they could cope and fears about what the future held for them.
At some point subsequent to the initial reaction to the visual impairment, respondents m ade a conscious or unconscious decision to adjust to the impairment.
In conjunction with this decision new ways of doing things were learned or present ways were adapted so as to be able to carry out normal activities of daily living.What £ilso acted as a motivation towards performance of the activities of daily living was the comparison with sighted people.The female respondents maintained that they learned to cook, wash and iron clothing for the family because they wanted to prove that they could do even better than the sighted people.The problem that they initially had to cope with was mobility, since the opinion they have is that mobility is the vital skill that assists in over-coming most problems.
Respondents were requested to state how they learned mobility skills on their own, fo llo w in g v isio n lo ss.The description they gave was an interesting one.Some respondents stated that initially they became confused and d iso rie n ted even in fam iliar surroundings, and this was caused by being afraid of what could be in the way such as obstacles inside and outside the house.After the initial stage, they decided to use sticks as mobility aids.Nobody introduced the use of sticks to them; it was entirely their own idea.Sticks facilitate the functioning of the sense of touch/feeling and are used for identifying objects that can be used as landmarks in any direction when walking.The stick is for feeling/touching front, right and left side and in this way, the objects that are touched by the stick are the landmarks.The objects could be the furniture in the house or the doors.When outside the house, other houses acted as landmarks; subjects counted the number of houses they passed in order to get to a specific point.The type of the surface under foot, whether even or uneven, and rough soil or fme soil or tarred road are g ood landm arks id e n tifie d by the stick and fee t.Eventually respondents learnt how to walk freely.What was highlighted in the in terview s was that a sen se of touch/feeling must gradually become sensitive to assist in mobility.
The respondents pointed out that the most dangerous area is walking on the road because of traffic.They explained that they must be able to note the distance of the oncoming and the off-going car through hearing of sounds.Most of them maintained that they have not developed this skill and therefore are fearful of going to town or walking on the road without assistance.
When questioned about the use of guide dogs, no respondent saw the need for guide dogs.Respondent 0 said, 7 cannot imagine a dog showing me the way to whatever place I want to go to".Most of them had no idea about guide dogs at all.The respondents pointed out that at the outset, ^ey were awkward in performing activities of daily living such as cooking, cleaning and washing.Women felt that inability to cook was most frustrating.Respondent B learned cooking because she was at times left alone without food for the whole day, or school children were to prepare for her.She felt she was a burden on school children who at times arrived late at school because of her dependence.She recalled, 7 made a fire, attempted to cook porridge (uphuthu), it ^t burnt, because of too much fire.I tried to boil an egg, it also got burnt because of too much fire and little water.I never stopped trying, eventually I learned to cook for the whole family".She emphasised that, as a visually impaired person you never stop encountering new problems in life.She explained further that her ability to move around in the house for cooking made her face another problem of getting out of the home environment to collect firewood from the nearby forest and water from the well.She maintained that she felt obliged to learn new skills.She decided to do something about her dependence and accepted the challenge.She was unmarried and had a boyfriend during the onset of blindness.She was dependent on her parents for everything that needed money.After realising that she was totally blind, she felt unhappy when recalling the money that her parents have spent trying to get cures for her.She then decided to do something that would allow her to get money and become independent somehow.She recalled, 7 requested my sister who was good at knitting jerseys, to teach me knitting.I had no money for buying wool, I had to undo old jerseys to get the wool for learning.This was a success, I am still knitting jerseys, and getting money out of them.I have bought myself goats out of the money I have made*.She explained further that later she was referred by her uncle to a workshop in Durban where she refined her knitting skills.
Male respondents described how they learned to be mobile by cleaning the home yard and doing some gardening.
All respondents felt that contact with other visujilly impaired persons made them realise that such persons are capable of moving freely and performing most activities of daily living.They further maintained that advice and ideas from other visually impaired persons are acceptable <md motivatmg.
T h ose who b ecam e blind during childhood were assisted by their play peers.
The family was cited as most influential in adjusting, provided over-protection is avoided.Respondents mentioned that though the fai^y is supporting, it tends to over-protect the blind person because they think he may be injured.To avoid this behaviour, the respondents had to "steal" activities until their skills were adequate to be accepted by the family members.

THINGS THAT DID NOT HELP ADJUSTMENT
Respondents also explained things that they experienced as most difficult for them in learning how to cope with visual impairment.
A s sum marised in Table 7, social isolation in terms of lack of someone with whom to talk and share mutual experiences was cited as a major factor that hindered adjustment to visual impairment.
tiv e e ffo rt b etw een the informant and the investigator.A semi-structured informal interview was a method of choice for this study because it helped the respondents to remember facts accurately in a relaxed unhurried atmosphere.Clarification and recording of questions was made as necessary to m