Locked In….And Locked Out – Women With Intellectual Disabilities: Coming Out of the Institution
Written by Dr Kelley Johnson. Dr Kelley Johnson is a Research Fellow at the Australian Research Centre in Sex, Health and Society, La Trobe University. This article is based on a four year ethnographic study which is now published as ‘Deinstitutionalising Women: An Ethnographic Study of Institutional Closure’ (1998). This article appeared in the August 2000 edition of HealthSharing Women, the Newsletter of Women’s Health Victoria. WWDA would like to thank Women’s Health Victoria for enabling WWDA to reprint this article. Copyright 2000.
Locked In: To institutional life
I thought how unpleasant it is to be locked out;
and I thought
how it is worse perhaps to be locked in.
(Virginia Woolf 1994)
Virginia Woolf had resources, work and love. She had a voice through her writing to explore publicly the ways in which she experienced being locked out and locked in as a woman. This is the story of 21 women who had none of these things and whose lives were shaped by being women and by having the labels of intellectual disability and challenging behaviour.
The women lived together in a locked unit within a large institution for people with intellectual disabilities. Their ages ranged from 25 to 72 years. They had been in the institution from four to 55 years. And the time they had spent in locked units varied from six months to 30 years. I spent almost two years with this group of women, observing their lives, participating in the life of the unit and talking with them, their families or advocates and staff at the institution. During the time I spent with the women, the institution was closed and I stayed with them throughout the review process that decided if they would live in the community or in another institution.
When I first arrived at the institution, both the staff and their families believed that the women would live within a locked unit for the rest of their lives. Most of their days were spent in a day room with little access to the outside community or to any other part of the institution. Violence was an everyday occurrence in the unit. They had to ask permission from staff for a drink of water. This involved unlocking three doors. There was nothing for them to do in the unit: no books, no magazines and no activities. Their relationships were restricted to the other women living in the unit and to the women staff. Some had visits from family or advocates; others were alone. My field notes reveal some of the stresses of daily life in the unit and also introduces some of the women who lived there.
It is 9.30 in the morning. The sunlight is slanting through the windows in the day room while the dining room remains cool and dim. Four women are down in the dining room. Joyce sits in the lounge area watching the television. Kate, who is blind, sits beside her in an armchair……..Rhonda sits in lotus position on the floor of the dining room. She is humming to herself and swaying from side to side. June has been exiled to the dining room because of a fight with Dora……..When B, a staff member, walks into the dining room (June) rushes to her to show her perpetually sore finger and to say ‘My finger a bit sore.’ With this comment she laughs nervously…….
Inside the day room…….Lena sits primly on the couch, her hands folded in front of her and her feet placed together on the floor. She is dressed carefully in a grey and red skirt and jumper. She watches everyone carefully and has an air of waiting expectantly……for what?
Vera and Ilse, two very small women in their 50’s, come hand in hand to ask me to unlock the doors so that they can ‘go down’ to the staff office. There, they will stand in the cold and chairless passage to escape the other women ‘who might beat us up.’ Jodie sits in an armchair with her white and black bag looped over her arm. She is looking at pictures of make-up and hairstyles in a torn women’s magazine.(1)
The women living in the unit were both locked out and locked in. They were locked out of community and institutional life and out of many of the positions that they may have been expected to have as girls and later as women. At the same time the women were locked in physically and also locked into perceptions and practices by those around them which positioned them as a problem and which allowed them to be constrained and managed.
Locked out: Of normal living
The women in the locked unit challenged many of the stereotypical expectations about women in our society. They also raised questions about what this ‘normality’ means and what happens to women who do not meet gender expectations. In this section I will explore how the women were excluded from these roles.
Locked in/Locked out: As daughters
The modern child has become the focus of innumerable projects that purport to safeguard it from physical, sexual or moral danger, to ensure its ‘normal’ development, to actively promote certain capacities or attributes such as intelligence, educability and emotional stability. (2)
The parents of the women locked in were confronted with a girl child who ‘challenged’ all of these ‘projects’. The diagnosis of intellectual disability differed in time and kind from one family to another but in all cases it was accompanied by professional opinions that indicated that this child ‘would be no good’ and that there was nothing that could be done for her. For example, Kirsten’s mother commented:
….at the Children’s (hospital) once they told me she was retarded I never went back again. He said (the doctor) that there was nothing they could do for her so I thought what’s the good of going and I just didn’t want them to do anything for me. She was mine; she was my responsibility.(3)
So at this point, Kirsten became a ‘responsibility’ and remained so until she became too difficult for her parents to manage. Once the diagnosis was given, parents no longer expected their daughters to pass the developmental milestones prescribed by psychologists, the community and themselves, and they had no other knowledge by which to come to know their daughters.
Oh yes she was toilet trained very young. I could do that. And oh no, she was very very capable. But she didn’t have any other skills. Not really.(4)
But it was not only that these women challenged the prevailing knowledge and expectations about intellectual development, they also challenged the view that children, especially girls, would be ’emotionally stable’, affectionate and obedient.
Parents spoke of a great struggle: to communicate and to attempt to understand what appeared to be unpredictable and seemingly irrational reactions to people and events. Such behaviour was difficult for families to cope with when it was directed to other people in the community, but it was even more distressing when it was directed at other members of the family.
My family gave her so much love but she couldn’t respond to it. You couldn’t go to Kate and put your arms around her She wouldn’t accept it, that sort of thing.(5)
Further, rather than their daughters moving towards increasing independence from their parents, in all cases the families were confronted with a person whose dependence upon them remained the same or actually seemed greater as time went on.
I never went more than a hundred yards from home for more than ten years.(6)
This continuing dependence was one of the key reasons given by families for placing their daughter in an institution. It was usually related also to the inability of another family member, always the mother or a sister, to continue to sustain the level of care that was required either because of additional family responsibilities or because of increasing age.
The consequences for the women and their families of the individual not taking up an expected position as a ‘normal’ daughter were traumatic and life changing. Family views of who, or what, the woman was seemed confused and ambivalent. For example, parents described their daughters as ‘sick’, ‘patients’, ‘children’, ‘insane’. These labels suggest that the only alternative to regarding their adult daughter as a highly dependent child was that of a sick individual or fantasizing that hidden deep inside her was another person.
But I always used to have the belief or the wish that she was tricking us, and one day she was really going to say ‘hey you know I’ve been tricking you all these years; I really can talk.’ And I’ve always lived with that belief and for years and years…..it sort of went away as I got older but yeah you used to hope against hope that she was going to get better because there was no prognosis or anything given to us and no explanation even why…… (7)
The difficulty that parents (and other family members) had in identifying who or what their daughters were, removed them from a position of family member to a position of being ‘other’. So Kate’s mother talked of her ‘daughter’, referring only to her nondisabled child and excluding Kate as a family member. Such exclusion was exemplified physically in the decision to admit the woman to an institution.
Some parents saw this decision in part as a means ‘to safeguard’ her physically, or sexually. Of particular concern to parents was any tendency of their daughter to roam from home: they expressed anxieties that she would be physically or sexually abused in the community or would suffer an accident. However, they also saw her exclusion as necessary for the wellbeing of themselves or of other family members. Such a view privileged the rights of these members over the individual with an intellectual disability. All the families interviewed spoke of their pain and despair of the living conditions present in institutions. Yet they felt they had no other choice.
From the time of their daughter’s admission, her position within the family changed. The institutional staff did not acquaint themselves with a detailed family history. Inge and Faye’s families were advised not to visit them for some months after their admission so that ‘they could settle down’ and family visits occurred at long intervals, for short periods of time and did not occur within the unit.
The families whom I interviewed expressed great ambivalence towards their relative and sometimes towards themselves about her treatment. For example, Kate’s mother visited her daughter each week and rang the institution almost every day. She spoke of her daughter protectively and caringly. She cared for Kate for 28 years with little support and spoke proudly of her 21st birthday party and of her physical attractiveness when she was young. However, she also told me how Kate had attacked her on every visit over a period of ten years, leaving her bruised and upset. And she saw her daughter as responsible for her partner’s death and expressed the wish that she had died at birth.
All families whom I interviewed had loving stories to tell of their relative but also expressed pain and fear at what they saw as her ‘destructiveness’ to the family. And some members of families, for example Una’s sister, believed that they were responsible for the woman’s intellectual disability. The decision to institutionalise their relative provided a point at which these feelings became particularly obvious.
The reactions of families to their relative also affected the women. Sinason (8) argues cogently that at least for some people with intellectual disabilities the hurt and pain felt from the anger and rejection of their parents may have contributed to secondary intellectual disability, to self-hate and anger.(9)(10) My observations suggested at least some of the women in the unit experienced these emotions strongly and were very ambivalent towards their families.
All of those with parents (with the exception of Jane) showed unique affectionate responses to them on visits but these could also shift easily into anger, abuse and in the case of Kate, to physical attack.
For while the women were effectively ‘locked out’ o being ‘normal’ daughters, both they and their families recognised a unique relationship, an inescapable ‘locking in’. Some women made repeated requests to go home years after admission to the institution. All parents spoke with strong emotion of the separation of their daughter from the family and some families had made repeated efforts to live with their daughters during their lives at the institution. For example, Joyce went home for frequent holidays and sometimes in the past Elaine, Vera, Laura and Jane had lived for periods of time with members of their extended families.
The guilt and ambivalence experienced by families in relation to their relative were carried inevitably into the consultations about what should happen to the individual following the closure of the institution. The experiences of families were grounded in the ‘failure of their daughter to conform to the normal-stereotypes’ of girls and children. They knew little of them as adults.
Consequently, the fears about their lack of skills and their sexual vulnerability remained important considerations. In three instances this led families to decide that their daughter should remain in an institution even though evidence from staff and from observation suggested that she was quite able to live in the community. Two of these women, when consulted, indicated that they would like to live in the community: their voices were not heard.
Locked in/Locked out: As women
The income earning opportunities of women with disabilities are severely constrained. So, too, are their opportunities to be nurtured and to nurture, to be lovers and to be loved, to be mothers if they desire. Women with disabilities are less likely than nondisabled women or disabled men to fulfil roles customarily reserved for their respective sexes. Exempted from the ‘male’ productive role and the ‘female’ nurturing one, having the glory of neither, disabled women are arguably doubly oppressed.(11)
The women in the locked unit were not seen as able to take up any of these positions as women. They were not seen by their families or by the people at the institution as employable in any sense. On 15 of their files, past doctors’ assessments indicated that they would not even benefit from education. The most that was expected of the group was that Jane might attend an industrial workshop for two hours a week. But even this was subject to staff views about her psychological state on the day. The rest of the women did not have access to any kind of work on a paid or unpaid basis, inside or outside the unit. Yet, in the past, Vera, Elaine and Jane had held jobs in the outside community for varying lengths of time.
The women could not take up a position as wife or mother or lover. Indeed many of the concerns of family and staff at the institution related to the possibilities of the women becoming pregnant or becoming ‘sexually active’. Three of the women were in the locked unit primarily because of concerns about their sexuality. Two were regarded as sexually vulnerable and the third was labelled as ‘sexually promiscuous’. When I first entered the unit, Jane received visits from her lover. However, soon after, he was banned from visits due to staff anxiety (which had no specific evidence) that he might be HIV positive. Jane was then sent for sexual counselling.
The behaviour of the women breached the stereotypical views of women held in the wider society. So, the key issues for admitting the women to the locked unit, as shown in the files, included: loudness, sexual vulnerability or promiscuousness, aggression, running away, self-injury. All of these characteristics revealed non-passivity on the part of the women. They demonstrated characteristics that are not regarded in our society as womanly.
That they were women was not in doubt. But what kind of women were they? Staff in the unit and their families regarded the gender of the women with ambivalence. Informally within the unit, the women staff formed relationships with them that were complex and confused. My observations suggested that some staff took on a mothering role in relation to the women living in the unit. Sometimes the women staff spoke sadly of the women’s lives comparing them with their own or fantasising about a different kind of life for them: one more in accord with traditional women’s roles. For example, the unit manager expressed regret that Dora had had so little opportunity to be involved in household tasks that she seemed to enjoy. Yet staff saw little possibility of enabling the women to take up such roles.
Informally the individual members of staff related to some of the women in terms of commonly shared ‘women’s’ issues. For example, they encouraged Jane to ‘lose weight’ so that she ‘would look pretty’ and one staff member joined with her in a TV exercise programme. Staff took time and care in doing the women’s hair and applying makeup and frequently complimented them on their appearance.
But staff in the past had played a part in making the women’s bodies ‘unwomanly’. For example, their front teeth were removed, to prevent them from biting. Lena and Faye’s legs were frequently swollen with cellulitis and no effort was made to assist with ungainly gait or with difficulties in communication. While the latter may also have been true for men living in the situation, its effect on the women was to distance them further from the traditional expected image of a woman.
While staff often related warmly to the women as women or as ‘daughters’, they also sought to distance themselves from them as women. For example, the women living in the unit were alone designated as ‘the ladies’. Staff spoke little of their lives to the women and care was taken to maintain physical distances by locking staff room doors and by keeping separate staff mugs for coffee.
Personally I was ambivalent towards the women. I identified strongly with them as women who were oppressed by the system in which they lived and by their past experiences and I felt a great deal of ‘protectiveness’ and affection towards them. I also felt considerable respect for them as survivors of an oppressive system. Such feelings related to their marginality and to their energy and were, I suspect, gender related. However, I did find it difficult to relate to them as peers and I found it easier to talk with staff about common family experiences and to talk of their ‘work’ than to talk with those women who could speak. These responses to the women seemed to be echoed in their relationships with staff and with their families.
Although these women had been locked out of traditional women’s roles, some of them did try to place themselves within this discourse. Joyce and Dora were interested in families and in children. Jodie adopted younger women in the unit and cared for them. Dora changed her clothes frequently in an effort to ‘look nice’, and Lena, Jane and Dora were conscious of their appearance and their looks.
When the institution closed and a consultation was held with the women and their families about their future lives, their positions as adult women became even more problematic. Concerns were expressed at their sexual vulnerability and at possibly inappropriate sexual behaviour that they might show in the community. One woman was rejected for a community placement in part because she was large and ‘looked threatening’. One woman expressed fear and rejection of men. However, she was placed in a house with two men with the closure team members commenting that she would be quite safe as one man was in a wheelchair and the other was blind. Her personal desires were not taken into account. When asked what she would like to do if she lived in the community, one woman commented that she would like to get a job and learn to type. Her wish was regarded with disbelief and the comment was made:
Well I don’t know about typing. Do you like pottery?
Effectively, the women’s desires and wants as adult women were disregarded, ignored or reframed in terms of their disability and challenging behaviour.
Unlocking the doors
As Virginia Woolf commented, all women are to some extent locked in to particular discourses about what it means to be a woman in our community. And to some extent we are all locked out: from living the lives we might desire. However, for the group of women in the locked unit these two phrases had a particular intensity and meaning that are not there for women who do not carry the label intellectual disability and challenging behaviour. These women were subject to knowledge, power and practices which defined them in very narrow ways and which precluded a consideration of them as individuals. This is not to say that the women did not experience problems. They had been labelled as having an intellectual disability; some were unable to care for themselves or to talk to other people. Each individual required varying degrees of support. However, there was an expectation among those caring for them that they were no more than the labels that they had been given. Such a presumption denies these women voices, a history, an identity and the possibility of an inner life. For example, their sexuality was ignored (12) or was reinterpreted as ‘challenging behaviour’. Nor were histories of sexual abuse seen to be relevant to a consideration of their current situations or behaviour. Their histories, which were diverse, were not known or heard.
While the professionals who worked with them were women too, and informally related to individuals in a caring fashion, formally their regard was focused entirely on the issue of the women’s disability.
Virginia Woolf spoke passionately through her writing. These women had no voice. Some could not speak their desires but when they could, they were not heard. And the same can be said for women with intellectual disability in the wider social context. They have not been included in the feminist debates about the position of women in our society.(13) Some have found a voice in anthologies about and with people with intellectual disabilities (14)(15)(16)(17)(18) but there are few books that explicitly raise their issues, their lives or their voices in the general community with one exception.(19) It is as if the disability is the sufficient explanation.
Each of the women in the locked unit had a unique history and experience: a unique story to tell: if it could be heard. It is the diversity of women’s voices that needs to be heard and we also need to hear about the commonalities that we share as women.
1. Johnson K. Deinstitutionalising Women: an ethnographic study of institutional closure. Melbourne: Cambridge University Press, 1998.
2. Rose, N. Governing the soul: the shaping of the private self. London: Routledge, 1990.
3. Johnson, op. cit.
8. Sinason V. Mental Handicap and the human condition: new approaches from the Tavistock. London: Free Association Books, 1992.
10. Sinason V. Hate and learning disability. Issues in psychoanalytical psychotherapy. In Varma V (Ed) How and why children hate. A Study of conscious and unconscious sources. London: Jessica Kingsley, 1993: 186-98.
11. Asch A, Fine M. Beyond pedestals: revisiting the lives of women with disability. In Fine M (Ed). Disruptive voices: the possibilities of feminist research. Ann Arbor: University of Michigan Press, 1992: 139-71.
13. Binstead N. Women with intellectual disabilities: silent in the women’s movement. Paper presented at the Australian Association for the Scientific Study of Intellectual Disability, Melbourne 1995.
14. Atkinson D, Williams F. Know me as I am: an anthology of prose, poetry and art by people with learning difficulties, London: Hodder and Stoughton, 1990.
15. Bogdan R, Taylor S. Inside out: the social meaning of mental retardation. Toronto: Toronto University Press, 1982.
16. Edgerton RB. I’ve seen it all before: lives of older persons with mental retardation in the community. Maryland: Paul H Brookes Publishing, 1991.
17. Howe F. With wings: an anthology of literature by and about women with disabilities. London: Feminist Press, 1993.
18. Taylor SJ, Bogdan R, Lutfiyya ZM. The variety of community experience: qualitative studies of family and community life. Baltimore: Paul H Brookes, 1995.
19. Traustadottir R, Johnson K. (Eds) Women with intellectual disabilities: finding a place in the world. London: Jessica Kingsley, 2000.