VIRTUAL IDENTIFICATION OF DISABLED PERSONS

Inspired by Whyte and Ingstad I will here examine three important questions regarding characteristics of social organisation relevant to the everyday life experiences of the PWDs in this study (Whyte and Ingstand 1995: 12-21). First I will analyse the role of the family in taking care of a disabled person. Secondly I will examine the significance of environment and the possibilities of income related activities. Finally I will discuss the significance of the special opportunities PWDs can acquire through special programs, institutions and organizations.

4.3.1 The role of the Family

The role of the family seems very important, first in a practical way regarding the special needs of an impaired family member, who perhaps depends on others very strongly, and secondly in the virtual identification of the impaired person. The ability of the family to cope with care-giving seems crucial. In Uganda families are usually large, on average women give birth to 7 children (Vilby 1998: 97). This means that the burden of care-giving can be shared, but it also means a lot of expenses on household, clothes and education. Because of poverty many families cannot afford these expenses.

However, labour migration and poverty seem to transform family situations, for example in Zimbabwean villages it is often grandmothers who care for disabled children because parents or unmarried women are working in town (Ingstad & Whyte 1995: 14). In Botswana a similar pattern is described by Ingstad and co-authors;..”

labour migration takes away the healthy and able house members, leaving the old, the very young and the infirm to survive on subsistence farming and often irregular

47 remittances” (ibid:14). The role of the family cannot be seen as static, to cope with care is a matter of the disposition of the family resources and also of the willingness to give such care priority over other needs and goals (ibid: 14). A statement which was very common among the PWDs I spoke to was: “I was not worth investing in.” Their parents could not afford to pay school fees for all their children, so the disabled child did not get the chance of attending school. Whyte and Muyinda also give examples of this problem from their research in eastern Uganda: “My parents loved me like the other children, but because of poverty, they could not afford the school fees”, “My father did not have money for school fees or a wheel chair to help me to go to school, so the idea was to educate my able bodied elder brother so that he looks after me in the future” (Whyte & Muyinda: forthcoming).

Two informants from my study, Judith and Michael are both victims of polio. They have different backgrounds and experiences related to childhood and education. Judith is from the countryside. She was hit by polio at the age of five. She was given the opportunity to attend school even though her parents were told by other family members that it was a waste of money, because the girl would never be married and bring wealth to the family. But Judith’s father really loved his daughter and wanted to give her an education. Judith was always the first in class in primary school. Today Judith has a bachelor degree and is married to an able-bodied man and has children. In Uganda these achievements are remarkable, if one thinks of the struggles that Judith has been through because of her disability. It is also remarkable that a girl from the countryside has got so far, but all along the way, Judith has felt that she has had to fight obstacles and prove that she was worth investing in.

Michael is from Kampala. He was hit by polio in 1957, when he was seven months old. His parents had money, they took him to hospital, but especially the mother was very disappointed with his impairment and all the troubles it caused, so he was taken to his grandmother’s place. The grandmother cared well for him and even took him to school, but when she died while he was in secondary school, he had to stop. He could not get any further even though his parents had a lot of money. He used to do well in school, being the first in class, but in a way his parents thought of him as being

48 mentally “crippled” as well, so they did not bother to give him an education. They did not even leave him any inheritance; it was all given to the rest of the family. Then it was up to them to take care of the “crippled person”. But as Michael told me: “You can imagine when there is not much love in families here, they will just tell you “look here this is our inheritance” and they will treat you as a beggar.” Michael really felt that he was rejected and in his case it was not because of lack of money, it was because of lack of love that he was bothersome. Michael fought his own way up and today he is doing quite well and works with interior decoration.

These two examples tell us something about the role of the family and the importance of love and care-giving. But they also tell us something about the virtual identification, about how Judith and Michael experienced their childhood. They were both categorized as different, but whereas Judith was raised in a loving family, Michael was rejected by his parents. Judith was given the same opportunities as her siblings, Michael was not and he was in every way “the crippled person” in the family.

If we look at this from the perspective of the individual order, the world of embodied individuals and what-goes-on-in-their-heads, we expect that the categorization by important others has in some way influenced the self-definitions of Judith and Michael.

The individual order can be seen as constituted in and through their embodied selfhood.

Each human being develops – ideally –a sufficient sense of selfhood to provide a foundation of “ontological security” (Jenkins 2000: 11). Much of this “sense of selfhood” is embodied in the course of early verbal and nonverbal dialogue between the child and significant others. It is mostly the parents who tell the child both who he is and what he should do, so we know who we are because, in the first place, others tell us. We are here discussing the importance of the primary socialisation. Psychological theories offer a lot of answers to this question, but here I will use the sociological framework of categorization and labelling theory as understood by Jenkins, and in the next chapter I will complement with the work of Goffman. According to Jenkins secondary deviance is deviance that results from the internalization of the identity

‘deviant’. Thus deviant careers represent the working out of this over time, in

49 individual biographies (ibid: 9). Let us then take a look at Michael’s biography and analyse if this statement can be verified.

Michael was rejected by his parents because he was bothersome, but he grew up with his grandmother, who really loved him and took good care of him. During his childhood he had contact with his family, but he was always just seen as “the crippled person”. The significant others, his grandmother and the rest of his family, in a way divided his “sense of selfhood” in two directions as a rejected person but also as a loved person. Michael was caught in two external definitions of him as a person. He was categorized as a “deviant”, in a cumulative labelling process during his childhood and youth by his parents, but that does not mean that he thinks of himself as “deviant”

today. This labelling process evoked resistance. He would not accept only to be the

“crippled person”, he wanted to show them all that he was capable of making it on his own. He started getting friends, not sympathizers to work with and he started doing business. He proved silently that he could do almost everything from his wheelchair,

“this way I defeated my surroundings in their thoughts and minds.” During his whole life, Michael has been working on being accepted as a competent person, so in the case of Michael the statement above can be verified. Michael’s case is special because he did not come from a poor family, so some things were easier for Michael because his basic needs were fulfilled. The importance of acceptance will be discussed further in the next chapter.

Until know I have mainly looked at the role of the family from the perspective of the disabled child. But there are also situations where one of the adults in the family suddenly becomes disabled, maybe as a consequence of AIDS. Opportunistic infections in relation to HIV/AIDS may for instance cause visual impairments. How does a sudden impairment affect a family? I met a 28-year-old woman who was HIV positive.

She was very sick and had suddenly become blind. She was married and had four children, who were 15, 13 and 11 years old, respectively; the youngest child was four years old and also HIV positive. The woman could not take care of her children any longer. Her husband was a hardworking man and he could not take care of his wife, so the woman and the youngest child were sent to the woman’s mother. This is an

50 illustration of how a family has to split up because of an AIDS related impairment. But the tragedy does not stop here. The husband was tested HIV negative the day I met them. He had never been tested before, because he did not feel sick. As long as he did not know his status, he was not “categorized”. He did not know whether to believe the statement that he was HIV negative or not. He as very surprised, but it also meant that his wife had cheated on him, so a quite different situation appeared. As mentioned in chapter 3, discordance in the serum status of couples is actually not as uncommon as one should think. This is quite a big problem, especially in the case where the wife is HIV positive and the husband is negative. In this situation the woman is often rejected by her husband and his family. According to some of the counsellors I spoke to, it is common in such a case of discordance that the man will leave the woman, but if it is the other way round, the woman will stay with her husband and take care of him.

In this section the role of the family in taking care of disabled person has been examined. From the perspective of the individual order the complexity of the internal/external distinction has been illustrated by empirical examples showing how the categorization as “deviant” can be met with resistance. Furthermore it has been illustrated how a nominal identity as HIV positive and disabled can affect the whole situation of a family. I will continue to explore another area which seems very important in the virtual identification of PWDs.

4.3.2 Environment and Income related Activities

In this passage I will focus on the ways in which the environment limits the life chances of people with impairments. Furthermore the significance of income related activities will be discussed in relation to the everyday life of PWDs. In a broad sense the perspective will be from the interaction order, the human world as constituted in relationships between individuals, in what-goes-on-between-people. Thus here it is difficult to keep the analytical distinction, because each order is implicated in each of the others. The interaction order will be further explored in chapter 5.

According to Colin Barnes and colleagues…“social exclusion is never more evident than in the restrictions placed on mobility and access by a poorly designed built

51 environment” (Barnes et al, 1999: 117). Research conducted across Europe and North America has demonstrated that routine daily tasks such as shopping, going to the bank or to a restaurant, or simply visiting friends are made impossible or difficult, to varying degrees, for many PWDs (ibid: 117). The main reasons are physical barriers such as steps, heavy doors, high counters, poor lighting, and illegible signs. If these barriers still exist to some extent in Europe and North America, one can imagine what will appear if we turn to an African context. Here the abovementioned barriers are even more widespread. In Uganda the ground is hilly; most roads are rough; they become muddy if it rains. If you live in a slum area with narrow and rough streets a wheelchair will not be of any help to you. Here you can only get around by using a stick or crutches, or by crawling. Paul, who both lives and works in a slum area, had a wheelchair once, but it broke. The wheelchair was not built for the rough environment, so Paul learned to use crutches instead. Judith has a wheelchair, which she mainly makes use of for longer distances, when she is going to places that she knows are accessible. Most times Judith prefers to crawl using a hand-boot in her right hand, this gives her freedom of movement both at her workplace and at home. Doing housework in Ugandan homes is almost impossible from a wheelchair, so the women I talked to preferred to crawl around or sit on a mat. Of course a wheelchair can mean a big difference for persons who are not able to crawl or have to move over longer distances.

Getting a wheelchair can make it possible for a child to move the long way to school, but when the roads get muddy a wheelchair will not help. The technology of mobility aids seems to offer solutions, and seeing PWDs crawling around in the streets can seem very degrading and terrible seen from a western perspective, but as illustrated above the freedom of movement must be understood in its local context. PWDs adapt themselves to their surroundings like anybody else.

A tricycle is another technology of mobilization. A tricycle is a hand-cranked three-wheeler “bicycle”. They are used by persons with impairments of the limbs. In their research in eastern Uganda by the Kenyan border, Whyte and Muyinda describe how these tricycles became a way of making an income for PWDs. The cross-border trade flourished including large scale smuggling between Uganda and Kenya. “A Muslim businessman, Asumani Asad, is remembered as the pioneer who first used his

52 wheelchair for trade and transport and went on to develop his capital, buy vehicles and buildings, and marry four wives” (Whyte & Muyinda: forthcoming). These possibilities were discovered by people from many parts of Uganda. The word spread that fellow disabled persons were making money at the border, so people wanted to join them instead of sitting redundant in the countryside. Many who came did not yet own a tricycle, but they got loans from businessmen or were helped by family members. Most worked and saved to purchase their own three-wheelers. Most of the PWDs came to town because they felt stuck in their village where opportunities where few. The chance to extend their social being through going to school, earning a living, getting married and having children was their immediate concern, as it is for most Ugandans (Whyte & Muyinda: forthcoming). All they wanted was to live an ordinary life like other people. The opportunity of earning an income made it possible to be recognized and it opened the doors to get a partner and support a family. It changed their virtual identity from only being a “deviant” to also being a businessman, a husband and a father. As in the case of Michael, they were working on being accepted as competent persons, they wanted to show that they were capable of doing almost everything despite their impairment. This reflects a picture of identity as a process of “being” or

“becoming”.

There is massive unemployment in Uganda, so one can imagine how difficult it is for PWDs to get jobs even though they may be qualified. One occupation they are highly qualified for is begging (Ingstad & Whyte 1995: 15). Especially in urban spaces begging is a source of income. It is well-known from pictures from all over the world, but in Uganda it is not reserved for PWDs, I also saw children on their own, mothers with children and old people begging in the streets of Kampala. The difficulties of getting a job have forced most PWDs in this study to create their own jobs mainly as tradesmen. I will now illustrate the meaning of an impairment and HIV/AIDS in connection with the importance of income related activities. Martha is 42 years old; she lives in a little room with her son in a slum area in Kampala. The rest of her family are passed away because of AIDS. She is HIV positive herself and disabled by polio. She can walk short distances with her stick. From dawn to sunset she brews alcohol, selling it to customers in her home. When I arrived at her home a fight was going on.

53 According to Martha this happens very often, because the customers get crazy of this local brew and then they ruin her things. “But what can I do? I have to make a living.

Of course I would prefer to sell cold soda drinks instead, but I cannot afford to buy a fridge.” Necessity dictates Martha’s life. Another example is Josef, a former soldier.

He was hit by a landmine and now has to walk with a stick. He is 36 years old and HIV positive. He has twenty children with five different wives, but he is only staying with one of them at the moment. He deals with second hand clothes on an open market.

Sometimes it is difficult for him to handle the boxes with clothes and if it suddenly starts raining and it gets muddy he almost cannot move around and get his things together. But he is making a living. A final example is Susan, a 39-year-old former schoolteacher. She was very sick when she suddenly became impaired during treatment for both tuberculosis and AIDS. It was like a stroke and now she has problems with the left side of her body. She would like to work again as a teacher but nobody wants to employ her, they think she is mentally impaired too. She lives in a room at her aunt’s place near the clinic where she gets her ARV treatment. Some friends gave her money to start a little chicken production, it gives her an income and keeps her busy, but in away she feels bitter and rejected. She cannot accept her disability. What do these three examples have in common? Despite their disabilities and their HIV status these three people are able to do some income related activities. It is not always easy, but they

Sometimes it is difficult for him to handle the boxes with clothes and if it suddenly starts raining and it gets muddy he almost cannot move around and get his things together. But he is making a living. A final example is Susan, a 39-year-old former schoolteacher. She was very sick when she suddenly became impaired during treatment for both tuberculosis and AIDS. It was like a stroke and now she has problems with the left side of her body. She would like to work again as a teacher but nobody wants to employ her, they think she is mentally impaired too. She lives in a room at her aunt’s place near the clinic where she gets her ARV treatment. Some friends gave her money to start a little chicken production, it gives her an income and keeps her busy, but in away she feels bitter and rejected. She cannot accept her disability. What do these three examples have in common? Despite their disabilities and their HIV status these three people are able to do some income related activities. It is not always easy, but they