Disability & Society, Vol. 12, No. 2, 1997, pp.

259-271

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carfax

Territorial Isolation and Physical Deformity: Israeli parents reaction to disabled children
MEIRA WEISS
The Hebrew University of Jerusalem, Department of Sociology and Social Anthropology, M ount Scopus, Jerusalem 91905, Israel

This paper presents and analyses three case studies portraying the attitudes and reactions of Israeli parents towards their deformed children. The research method employed was participant observation in homes, combined with in-depth interviews. It was found that parents tended to isolate their handicapped children from family territories in those contexts in which the child was defined as a non-personThis pattern was not affected by the parents3 socioeconomic status, or by their ethnic and religious background.
A b s tra c t

This paper presents three case studies in order to portray the behaviour of parents of children suffering from deformity or illness. Selected from 200 cases of families with a deformed child at hom e, which I observed during a long period [1], these cases, although representing a very heterogenous group of Israeli parents in term s of education, national affiliation or religious and ethnic background, will be shown to contain a comm on and distinct behavioural pattern. This blurring of sociocultural categories with regard to parents reactions concerning their deformed child is not new to studies of the stigma related to the latter (e.g. Dow, 1966; Farber, 1968; M acGregor, 1974). Israeli researchers, too, have reached differing conclusions as to the relative significance of social and cultural factors with regard to behavior towards the disabled (Palgi, 1962; Weller et al., 1974; Shurka & Katz, 1978; Florian & Shurka, 1981; Shurka & Florian, 1983; Sham gar-Handelm an & Belkin, 1984). However, the clear-cut findings of this study with regard to the territorial isolation of the deformed child am ong Jewish and Arabic parents, people of different national origin, the educated and the less educated, religious, ultra orthodox and secular, urban and rural families [2], renders it m uch more incisive, as well as, indeed, disturbing. As this paper focuses on certain aspects of the territorial handling of deformed children by their parents, it should be considered against the general study of territorial behaviour within the home. By territoriality I m ean the forms of actions which facilitate control over an area or space (Lyman & Scott, 1967; Proschansky et al., 1967); the territory, furtherm ore, creates a boundary between the T and other,
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enabling the m aintenance of privacy and exclusiveness and the exclusion of invaders (Altman, 1975). In general, the home provides one of the key territories in hum an life, being the individuals dom ain and considered as ones fortress, where one can live according to ones chosen style, and to which are attached strong familial sentiments (for studies concerning the hom e as a territorial domain, see Cooper, 1974; D uncan, 1985; Sebba & C hurchm an, 1986; Lawrence, 1987). Part and parcel of hom e-related territorial behaviour is the delineation of boundaries, such as specific use of chairs, bars or sides of the table (Altman & H aythom , 1967), allocation of separate spaces in the closet (Rosenblatt & Budd, 1975), etc. Each family m em ber strives to control part of the physical area of the home owing to his need to remain free of physical supervision by others and to m aintain his personal uniqueness within the household. Before directly proceeding to the ethnography, a brief methodological note is in place. The cases to be presented are based on a larger sudy in which I have observed, over a 6-year period, the behaviour of parents towards their deformed children after birth, in the hospital and finally within the home (Weiss, 1991). Previous research has mostly taken the form of standard interviews in which respondents were asked to evaluate their behavior toward their children (Florian & Shurka, 1981). The present study attem pts to overcome the limitations of this type of research by focusing on actual behavior both of parents of newly-born deformed babies, and of parents of older children who were deform ed in an accident or by illness. T he cases presented below portray various manifestation of territorial rejection within the home. The first describes R uths parents behaviour. T heir rejection is manifested by refusing to let their daughter in, receiving her only when forced to do so by the authorities, and then territorially isolating her inside the home.

C ase 1
Simah was bom with multiple defectsher legs had no bones and one of her ears was very small, barely the vestige of an ear. N o indications of m ental retardation were detected. H er parents refused to take her home. H er parents have a vocational education. T he father is a truck driver and the m other a telephone operator. They have two older sons and are known to be warm, kindly parents. They very m uch wanted to have a daughter and were glad when Simah was bom ; but immediately upon seeing the daughters defects they decided not to take her home and informed the family that their child had died. Even when social workers appealed to their better instincts, they refused to take her home. In the course of the next 8 m onths Simah underw ent three successful operations (each one implanting more bone), yet her legs were still hard to look at, and appeared to hang limp and boneless. H er ear also rem ained the same. D uring this period the hospital authorities explained to the parents in plain words that the law required them to take their daughter home. T he parents responded by keeping their front door locked, lest the baby be brought home. They closed their shutters and barred their doors. T he father ceased going to work. Tw o weeks later they received official notice that on a certain date a hospital official would bring them their

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daughter, and that if they would refuse to receive her they would be breaking the law and would be taken to court. On the appointed day an ambulance arrived at the familys home. A uniformed policeman took the infant in his arms, knocked on the door and waited. T he father, red eyed and unshaven, opened the door and stared blankly at the policeman. T he m other stood beside him, her face flushed and eyes looking as if she had been crying for a long time. The policeman stood there holding the child. I arrived together with the policeman. (The parents knew me from the hospital, where we had had several long talks, lasting into the early hours of the morning and accompanied by m uch crying.) T he following conversation ensued: Author: Perhaps I should make you a cup of tea? Or coffee? Father: We didnt sleep all night. This isnt my girl. I dont want her to cross my threshold. This is like a creature from outer space. Its frightening. Like a devil. Mother: They threatened that well be sent to prison if we didnt take her. I dont know which is better (crying). Policeman: W hat should I do with the girl? Mother: Why ask me? Ask your boss, (crying) W hat shall we do? W ell have to find some place for her. Policeman: Where should I put her? Father: W eve been thinking about it all night long. We dont have anywhere to put her. We dont have any room for her in the house. (Em phatically) She simply cant stay in the house. Policeman: I understand you; but where shall I put her? Father: You tell us. See for yourself. Do we have any place for her in the house? Policeman: Do you have a bedroom for the children? Perhaps we should put her in the childrens room? Mother: How can we do such a thing? T he children will be scared to death. Policeman: T hen maybe in your bedroom? O ur baby sleeps in the same room with me and my wife. Mother (trembling): T h a ts impossible. Imagine waking up at night and seeing her. (The m other cries.) We cant have her in the living room, either. N o one will come and visit and the kids w ont be able to watch T.V. N or the kitchen. We w ont be able to eat if shes in there. W hat can we do? (She cries more.) Policeman: The girls getting heavy; I cant just go on standing here holding her. Also, I think shes made.

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M . Weiss Father: Look here, its not that we have anything personal against you. Really, we dont. But she m ustnt be in the house. Policeman: At the hospital they told me that shes not retarded or anything, and that she can be operated on. Mother: Shes not like a hum an being. She cant be put in the house, with people around. (Bursting into tears) W herell we put her? Father: I think I have a solution. In the second bathroom . W ell only use one of the bathroom s, and w ell put a crib into the other. There she w ont bother anybody. Mother: We spent so m uch money fixing up second bathroom ; we were so happy that at long last we had a second bathroom . Father: W eve got no alternative. Tell the kids not to open the bathroom door, and then everything will be O.K.

Simah was put into the bathroom , a recentiy renovated room with a toilet, shower, sink, coloured tiles on the walls, and bright, colourful decor. A crib that had been brought in by the ambulance driver was put into the cram ped room. T he father then took a large towel and spread it over the toilet. Several days later a night-light was installed and was kept on round the clock. The children did not use the room. T he m other would go in four or five times a day to change Sim ahs diapers, wash her and feed her. W hen Simah was 2 years old she caught pneum onia, was hospitalized and died. Afterwards the bathroom was opened up, the night-light was removed, a regular bulb was installed and the room lit up once more.

Case 2
Eve is a severely retarded girl, whose m ental deficiency was not noticed at birth. H er parents, highly educated people (the m other is a psychotherapist, the father a construction engineer), live in a large apartm ent in a fancy district of a large city. T he parents were bom in Poland, but came to Israel in their childhood. The couple have three older children, the oldest 10 years old. In her first year, Eves parents received her lovingly, calling her the smartest and m ost beautiful child in the w orld. They put her in the same room as her 2-year-old brother. Eve also shared the same nanny with her brother. T he parents spent a lot of time with their children and seldom missed an opportunity to photograph them. Eve alone had three photo albums of pictures taken of her in her first year of life. W hen Eve was 1 year old, her m other began to suspect that she might be retarded, and within half a year Eve was indeed diagnosed as retarded. H er m other found it hard to accept the diagnosis, and appealed to various doctors and clinics for assistance. By the time Eve was 2 years old the m other said, I thought it was as if she had some sort of stopper in her head and that it would pop out and the entire

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nightmare would be over. But now I understand that no such miracle is going to happen. She isnt like us. Shes like a little animal. She cant possibly live with us. Shes different. W ith her we havent got a family. T h a ts how it is. But we have to cope with it. One day the following conversation took place: Older brother: I want a dog. Father: We dont need a dog in the house. W ho will take care of it? Mother: W hy buy a dog? We already have a puppy; a puppy that someone has to look after and take care of. T he m other requested that the girl be institutionalized and when her request was denied she decided to reorganize life at home, until an institution can be found for her. A Philippine housekeeper was hired to take care of Eve; the other children had a nanny of their own. Since weve had the Philippine woman, weve begun to breathe freely again, the parents said. W eve been reborn. The parents decided to renovate their house, dividing it into two areasthe familys quarters and the service quarters, where an extra room was added on. Eve was removed from the room she had shared with her brother and put in the new room along with the Philippine housekeeper. We dont m ingle, the m other explained to me. H er nanny sleeps with her. She eats at the same time as the girl, not with us. T h a ts how it is. T h a ts how weve resolved the problem. Shes not allowed in the living room or kitchen. Eve is allowed to be in her own room with her nanny. The nanny is also allowed to go out with her. We dont like to take walks outside with her. Its simply unbearable, being outside with her, the way everyone stares at her and at us. But we dont m ind if her nanny takes her out. Nevertheless, at hom e we m ust have order. To keep on living we divided our apartm ent, so that we have our p a n of the house, where she isnt allowed; and theres her part. T he m other showed me around the apartm ent, so I could see how they had divided it and how they had arranged Eves quarters. See, she has a lovely room, with all one needs. H eres her cassette player and the tapes she likes to listen to all the tim e. I saw dozens of cassettes, a large cassette player, colourful pictures on the walls, a large crib, and beside it a full sized bed for her nanny. A large table occupied the centre of the room. This is where they eat, the m other explained, Here are her dishes. She doesnt lack anything. Really. She has pretty clothes, so she can look nice when she goes out; and she has a verandah ... There was also a large television in Eves room. None of the other children have televisions in their rooms, just Eve. Shes also the only one with a veranda opening directly off her own room. She has her own territory. For her and the Philippine woman. T h at way, she doesnt get into our things. In the part of the apartm ent, the home, there was not the slightest sign of Eve. T he other childrens toys were scattered around the living room; and in the kitchen each child had his own chair and his own cup and plate. (The children generally

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watched TV in the living room and ate in the kitchen.) There was no sign of Eve anywhere. Even the photo albums of recent years did not show Eve in any of the family pictures. Before I left, the m other said to me, Look, Eve is really like a little puppy dog. You take care of her; shes not really in the house. But she has her own place and everything she needs.

Case 3
liana is a 12-year-old girl with D ow ns syndrome. H er parents have a vocational education, are of Turkish origin and have an average income. T he parents have three other children. Let us observe what transpired during one of our visits to this family. It was afternoon. T he children returned from school and sat down in the living room to watch TV. liana was sitting in the kitchen. Every once and a while she got up and, walking slowly, approached the boarderthe doorway between the living room and the kitchen as if she didnt want anyone to see her. However, the other children noticed her immediately and called out, liana, bring us some cool-aid; and some cake, and F ritos. Immediately liana ran to fulfill their request. Although on the heavy side, liana is very agile. She laid out the childrens snack on a plastic tray covered with a paper napkin. T hen she put straws into the glasses and set everything on the table, in front of the children. T he children did not take their eyes off the television. liana, eyes sparkling, seized the opportunity to sneak a glance at the television show. lianas m other came home and liana jumped up, blanching slightly. The following conversation ensued: Mother: Why are you in the living room? Are you all done? liana: Just a minute. Mother: Also, their shoes have to be taken out of the living room. They left their shoes lying around and it looks like a slum here; and there you are watching TV. For heavens sake, hurry up and get their shoes out of here. And their socks. Straighten up in herebut first clear their glasses. liana rushed to gather up their socks. Children: Move, youre blocking the TV. Mother: T he wash has to be taken off the line. liana (disappearing, then returning a quarter of an hour later): I took down the laundry. Mother: Did you fold it? liana: Yes.

Territorial Isolation and Physical Deformity Mother: T he sheets have to be changed on the childrens beds today. Get each child his set of sheets, and change the beds. Author: I would like to go and see how she makes the beds. Mother: OK. Also, you can see the new room we fixed up for our oldest child (referring to their oldest son).

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I went with liana. She took three sets of m atching sheets out of the laundry and went to the childrens rooms to change the bedding. Each child had a room of his own, well-kept, carefully painted with colour-co-ordinated walls and closets. Colourful framed posters decorated the walls, and each child had his own bookcase and toys. T he bookcases were designed with special cabinets for several sorts of toys. There were also record-players and radios in the bedrooms. The oldest childs room had a com puter and com puter desk, along with com puter games on a shelf. A large and expensive framed poster of Elvis Presley hung on the wall. liana changed the sheets in the oldest childs room. T hen we went together to the other childrens rooms. T he sisters room was painted pink and white, and even the sheets that liana put on the beds had a design in pink circles on a white background. These are hers liana said. liana opened the closet to put away the laundry she had folded. The clothing in the closet was arranged exceedingly neatly. Author: liana, you folded the wash very well. liana: Yes, I fold the laundry and put it away, but Nim a (her sister) always forgets and throws her clothing on the floor and messes it up; and then I always have to fold it again. (Addressing the author) Wait a m om ent. T he towels have to be changed in the childrens bathroom too. liana put fresh towels in the bathroom . The towels are pink and black m atching the decor of the bathroom . T hen she took a m op and began cleaning the bathroom floor, which was strewn with the childrens underpants and socks. She gathered up the clothing and put it in the hamper. (Addressing the author) T heyll need to have another wash done today; I ve already done two loads. Author: liana, come lets see your room. liana: I ts not here. This is where the childrens rooms are. L ets go downstairs and Ill show you my room. We went downstairs and came to a place which had a laundry room and pantry. N ext to them was a tiny room. We went in. T he room had a bed with a ripped sheet and a wool blanket with no cover. (In many Israeli homes it is customary to use quilt covers over the blankets.) N ext to the bed were two plastic bags. Author: May I sit down? liana: W atch out for my bags. They might break. Author: W hat do you have in the bags?

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M . Weiss liana: Look. (She opened them and took out some empty perfume bottles, broken plates, etc.) It was throw n away. M om put them in the trash, so I took them . Like the childrens toys.

lianas room also had a parrot and a dog in it. Mother (shouting): liana, come quickly. We returned to the kitchen. Mother (addressing the author): Did you see how we fixed up our oldest childs room? (Addressing liana) Make us some coffee and cake. (Addressing the author) Come on. L ets also take a look at the childrens photographs. Look what angelic children I have. W ere simply crazy over the childrens pictures. I began to peruse the photo albums. T he albums included pictures of liana, in her parents arms and together with the other children, up to age one. Thereafter, she simply disappeared from all the pictures. Author: liana was a lovely baby. Mother: Yes. We didnt know that she was like this (pointing at her head, making a circular m otion with her finger, indicating something wrong with her head). They were doing some sort of experiment in the hospital and decided not to tell the parents about the problem in the hospital. So no one told us about her problem. She really was lovely. And you couldnt even tell, looking at her. At that time she lived upstairs, in the childrens room. Life was different then. She had a seat in the kitchen, and we all ate together. She even watched television with us, even though she was only a few m onths old. T hen, all of a sudden, it was as if someone ripped our lives apart. W hen they told us she was like th at, everything changed. M y husband wanted to have her out of the house; for the childrens sake. She very m uch wanted a dog and a parrot. She loves pets. So do the children. But I m compulsive about cleanliness. I didnt really want to have animals in the house. So we decided that shed have pets in her room; on condition that they not come into the house. She takes very good care of them. And the children can also enjoy them . T he children are only allowed to visit her room if they want to play with the parrot or the dog. And I dont have any problems of the dog shedding in the living room, or smelling up the house. T he main thing is that the animals not come into the house ... Things were very different here. We gave her a special place, just far from the children. But yesterday our littlest one was sick, so she (liana) slept in her room. We laid a mattress on the floor and she slept there. I explained to her that if the little one should cry in the night she should get up quickly and make her some tea. She understands when you explain things to her. She was OK. (Addressing liana) Go make some more coffee for our guest.

Territorial Isolation and Physical Deformity liana: I havent finished changing the towels upstairs. Mother: What? Go quickly and finish. Also its time to get supper ready.

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liana began making supper. She set the table, laying out a placemat, and on it a plate, glass, knife and fork, for each m em ber of the family. T hen she made herself some sandwiches and gathered up the scraps and peels into a bag for her pets. liana: Suppers ready, I m going. Mother: Come back home after you feed the pets. liana left and returned several m inutes later. liana: Rover (the dog) is sick. I have to make him soup. Mother: Take your pots and tomorrow, when were not here, make him whatever you like. We want to sit down to eat now, in peace and quiet. Father (entering and greeting me, then turning to the m other): W hats she doing in here again? Mother: She was just about to go to her room to eat. liana: Rover (the dog) is sick and I want to make him some soup. Mother: Do you want there to be trouble here? Ive already explained to you that its not possible today. liana left. Mother (addressing the author): W hen were not hom e she can take her pots and cook as m uch as she wants for her pets. But not now, when the whole family wants to eat. Author: Does liana have special pots? Mother: Yes. T h a ts how it worked out. She also has her own cup. T h a ts how it worked out. I dont rem em ber how it began. N o she has her cup in her own room. H er kitchenware isnt kept in the house; so we dont get things mixed up. But shes allowed to use the kitchen to cook for herself and her pets when were not home; only she has to use her own pots and pans. She had her own sink. You saw. She can do everything there; wash up, do her own laundry, everything. Author: Does she do her own laundry? Mother: Yes, shes used to it. It doesnt go in with the household wash. Look, its also good for her. W hen shes put into an institution shell know how to do things. She knows that in the end shell be put in an institution; that shes only here for the time being. We dont hide anything from her. She understands what shes told.

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M . Weiss liana (entering, pale). I m sorry. I m ust cook something for the dog. H es sick. The children (jumping up for their seats): Rovers sick? W hats wrong with him? We want to see him. M om , let liana make him some soup. Father (addressing liana): Get out of here immediately. Look what a ruckus youve made. You know that youre not allowed to disturb us when were eating. If you irritate us any more well take the dog and give him to the S.P.C.A. I dont want to hear anything about dogs in this house. He lives with you; not in the house.

liana left. Father: Its hard for us to manage with her. She doesnt understand when you tell her something. It took a long time until she understood that shes not supposed to come into the childrens beds on Saturday mornings. We actually had to lock the door. Its hard for us having her. I dont want to get into an argument. She knows that shes not allowed in the kitchen when Im eating. As soon as I leave, she comes in.

C onclusion
I have discussed the tendency to define a deformed child as a non-person elsewhere (Weiss, 1991, ch. 2), and therefore do not discuss this topic here. In this paper I show that the cognitive mapping of a child is related to his territorial seclusion within the home, in a specially-demarcated area which is considered non-hom e by the parents. Researchers and many field-workers regard the placement of a child in an institution as an expression of parental rejection, while their willingness to accomm odate him at home is seen as evidence of acceptance. I tend to accept T u d o rs (1979, p. 205) view that this interpretation is not always valid, since bringing the child home does not necessarily indicate acceptance. Indeed, the findings show that a child may be raised at home and, nevertheless, be exposed to extreme rejection within the home. T he them e of rejection and separation could take a variety of forms, yet the basic pattern was similar. T he parents of Eve, for example, in fact reproduced within the hom e the institution they were not allowed to put her in. Sim ahs parents, forced to take in their daughter for fear of being thrown to jail, built her own prison in the bathroom . liana, like Eve, was given a bed in the service quarters and entered the house as an unpaid servant. T he territorial restriction applied only to their presence in the role of a family m ember. However, even when they were physically present, they were surrounded by imaginary walls and totally ignored. The fact that similar forms of territorial rejection were found among religious and secular Arab and Jewish families occupying different economic positions, contradicts m uch of the literature which attribute parents behaviour to their national or ethnic affiliation. Indeed, the fact that the comm on pattern of behaviour

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was observed to cut across various sociodemographic boundaries attests to its deep-rooted psychological causes. T he difference between my findings and those reported in the literature, which does not link disability to territorial behaviour, derives in part from different research m ethods; whereas existing literature is based mainly on research conducted by means of questionnaires and one-time interviews, I have employed primarily observation of actual behaviour. In my opinion, the linkage between disability and territorial behaviour has significant theoretical implications, for both the study of disability stigmatization and isolation of the labelledand for the study of the social significance attached to private and public territory in the home. Indeed, it is through these pathological examples of non-hom e that the immense significance of the norm al hom e, the home which we all-too-easily tend to take for granted, transpires. T he patterns of territorial separation employed by parents can be seen as practices of space (see De Certeau, 1985) which can be semiotically interpreted, since they constitute an attem pt to impose a specific kind of order through planned m anipulation of the houses topography. T h at attem pt is uninterruptedly executed by the parents, and its order is only theirs. T hrough their acts of territorial dem arcation and allocation, they transform the house into a controlled environm ent where they have an omnivisual power: it is a m odem version of B entham s panopticon. T hus the home can be seen as a microcosm of society, reproducing within it the ghetto (jail, institution, servants corner) designed for the deform ed in the past and often also in the present. These m iniature ghettos, com pared to the whole house, are fragments of discontinuity within its ideal continuum , i.e. the home. They are fragments made of spatial signifiers doom ed to decay and negligence. Thus, handled and shaped by practices of separation, space (the signifying spacethe house) forms itself into anomalies and gaps (or islets, as Bourdieu [1972, p. 215] calls it), while the signifiedthe hom e, is still elusively m aintained. Although this study was not specifically geared towards the issue of practical implications, this subject cannot be escaped. T o sum it up, it seems that the primary implication of this paper is that what is usually considered by the paramedical and social systems as acceptance of the deformed child, that is, letting him /her into the home, may actually assume various forms of child abuse. N o pre-assum ptions concerning the unconditional love of parents, or the so-called parental instinct, can be taken for granted. M ore practically, we need to conduct a periodical surveillance over those accepted children. I further observed parents reactions towards their deformed newborn when confronted, while still in delivery rooms, with having to make up their m ind concerning an operation which their child had to undergo. As natural custodians, the physicians turned to the parents for confirmation; sometimes the parents refused to carry on with the operation, and the child eventually died. This pre-assum ption concerning the natural bond between parents and children, and what I have later come to regard as the m yth of unconditional love parents are supposed to feel for their newborns, also leads, in Israel, to enforcing the parents (even to the extent of using the police for that purpose) to take hom e their rejected, deformed child. The

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childs place, so we like to believe, is at home; though, as we saw, hom e can mean many different things. T he frightening thing is that the medical system and the social services often regard parents external consent to take home their appearanceimpaired child as a sign of acceptance. Apart from periodical inspection carried out by trained social workers, it is im portant that the difficulties of parents are discussed (preferably with a family psychologist) and given proper attention. It is when these things are concealed and silenced, that they spread and become worse. Support groups for the parents may also be a worthwhile idea, though in need of careful testing. In severe cases and where possible we should look for adopting families.

A cknow ledgem ents

I wish to thank M oshe Shokeid and Shlomo D eshen for their helpful comm ents on an earlier draft.
NOTES [1] [2] The research was conducted as part of my PhD dissertation, Deformity and identity: parents perceptions of deformed children (Weiss, 1985, in Hebrew). Israels population comprises a Jewish majority and an Arab minority. It is customary to divide the Jewish population into two main sub-ethnic groups: those of oriental origin, whose parents or they themselves were bom in Moslem or Arab countries, and those of Western origin, whose parents or they themselves were bom in European or other western countries. A further accepted distinction is made between secular, religious and ultraorthodox Jews, with the latter generally living in closed communities in separate neighbourhoods. Despite their geographic proximity, each group has different cultural conceptions, life styles, thought patterns and beliefs (Weller, 1974; Florian & Katz, 1983).

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