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Feminist Success Stories - Célébrons nos réussites féministes

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Karen A. Blackford
, 
Marie-Luce Garceau
, 
Sandra Kirby

Part V: Caring — Partie V : Question de soins et de services

Caring to Overcome Differences, Inequities, and Lifestyle Pressures: When a Parent Has a Disability

Karen A. Blackford

Texte intégral

I am grateful to the children and parents who agreed to allow me to record and interpret their stories. My son Chris Blackford, my mother Freda Sawyer, and York University faculty advisors Gordon Darroch, Françoise Boudreau, Livy Visano, and Penny Stewart provided support. The Ontario Ministry of Health sponsored the research described here, while content and analysis are my own responsibility.

Introducing Transformation into Discussions of Disability

1This article discusses disability and family life, arguing that living with disability can heighten one’s appreciation for and practice of the feminist principles of equity, dailiness, and respect of difference. This article is based on findings from a study of 18 Ontario families in which a parent has multiple sclerosis.

2My personal experience as a mother with a chronic illness initially provided the insight that the rights of people living with disability needs to be addressed. Disablist oppression touches all family members and usually includes stigma, economic hardship, isolation, and inadequate access (Abberley 1987). However, as I interviewed each family member in the study individually, it became clear that while oppression certainly exists, there are also strengths to be gained from living with disability. In organizing the social relations of family life when a parent has a chronic illness like multiple sclerosis, family members often learn to do it differently.

3Details of the study’s method and results are available elsewhere (Blackford 1995). The intent here is to discuss some of the theoretical implications that the study results hold for feminist thinking about the institution of the family and about the practice of caring. I begin with a very brief introduction of how the theorizing and the experience of women with disabilities have enriched the Canadian women’s movement.

Women with Disabilities and Feminism in Canada

4Canadian feminists were forced to recognize the concerns of those fifteen percent of Canadian women who have disabilities when the Disabled Women’s Network (DAWN) formed in 1985. Until that time, the issues of greatest importance to disabled women had been ignored for the most part by the disability movement and by the women’s movement (Israel and Odette 1993). As an awareness of similarity in concerns between women with disabilities and other women grew, both groups benefited. They could articulate a clearer understanding of how the ideal female body image and social expectation of female dependency result in powerlessness and violations of the rights of all women (Mathews 1983; Fine and Asch 1988).

5Since then, the issue of reproductive rights has emerged as one area of contention. The general philosophy of the women’s movement is that a woman has a right to choose when and to whom she gives birth. The position of many disabled girls and women is that their lives are as worthy as other lives. This situation means that abortion on the grounds of potential disability in a foetus presents a problem (Doe and Ladouceur 1993; Saxton 1984). A major concern for disabled women is that they have commonly been denied the opportunity to conceive (Finger 1983). Many could support a woman’s right to choose an abortion so long as abortion policy did not include mandatory prenatal testing or limitations on medical coverage needed for the care of babies with disabilities. Ora Prilleltensky (1997) expresses the ironies clearly. The feminist struggle has been defined only as the woman’s right to prevent or terminate unwanted pregnancy. In contrast, women with disabilities seek the right to have children.

6Women with disabilities have also raised questions about the feminist celebration of embodiment. There is a contrast between the unequivocal celebration of women’s bodies advocated by most feminists and the experience of some women with disabilities whose bodies are often too tired or painful to celebrate. For example, philosopher Susan Wendell (1995) advises that feminist dismissal of objectivity and praise of the subjective fail to recognize the benefits of distancing oneself at times from the here and now. She describes benefits for disabled women in theorizing about some more ideal state or as a means of finding temporary relief from a painful body. Wendell’s ideas prod feminist thinkers to broaden their definitions of women.

7A clarification of this discussion of disability should be added since the term disability will be used in this article to refer mostly to the chronic illness called multiple sclerosis. Multiple sclerosis involves remissions and exacerbations of spastic, painful, and weak muscles; vision loss, mood swings; and fatigue related to lesions in the white myelin covering of the nerves and spinal chord (Roger and Matsumura 1991). This chronic illness tends to affect women of childbearing age. Chronic illnesses such as lupus, multiple sclerosis, and Crohn’s disease have in common their age of onset, unpredictability, and invisibility. I learned at a 1994 Disabled Women’s Network (Ontario) conference on mothering that the maternity experiences of women who have disabilities from birth or childhood and those of women whose physical or mental situation are relatively stable may vary considerably from those of chronically ill women.

8This paper invites reassessment of feminist assumptions about girl’s socialization in the context of the family and about family life generally. I identify how disability of a patent can alter the social relations of caring and can modify the cycle of oppression which family life often constitutes for girls and women. In short, the article studies the potential for feminizing family life in the context of disability.

Women, the Family, and the Social Relations of Caring

9Critics of family policy such as Margaret Eichler, Karen Anderson, and Meg Luxton have questioned the viability and fairness of a nuclear family form for women and girls. The oppression of restrictive ideas about what families should be like, termed “familialism” by Meg Luxton or “familism” by Lesley Bella, has often resulted in women’s being forced to care for themselves, their spouses, their aging parents, and their children (Neysmith 1991; Luxton 1988; Eichler 1988; Bullock 1990).

10Caring is usually performed in the context of personal relationships and has unfortunately been understood to be unidirectional. That is, whether we are referring to ‘caring for’ or ‘caring about,’ it is assumed that it will be mothers who are the actors, naturally both loving and labouring for their children (Swift 1995). According to this view, one is either a caregiver or a recipient of care. This dualistic male view leaves no room for interdependence. When women take on caring roles, they are often seen (and many come to see themselves) as nurturers, rather than as partners in the family. Neglected or overlooked is the reality that women also have needs and deserve support.

11Like other women, women with disabilities are also “forced to care” within a traditionally-organized nuclear family made up of one or two parents and their children. The pressures presented by familialism on mothers with disabilities cannot be appreciated without some consideration of the broader issues associated with disabled mothers.

12Motherhood is an issue of unique magnitude for women with disabilities since disabled women are often oppressed by socially-mandated celibacy (Fine and Ashe 1988), restrictions against adoption (Doe 1997), sterilization (Roeher Institute 1995), and other stringent forms of birth control (Blackford 1993). Because of the widespread prejudice against parenting with a disability, mothering or even fathering with a disability is assumed to be potentially ‘damaging’ for children. In the event of a parent with a disability, family ‘dysfunction’ is presumed to be inevitable. For example, even charitable organizations whose mandate is to advocate for people with disabilities, such as the MS Society of Canada, have only recently come to recognize needs associated with parenting and multiple sclerosis (Blackford 1993; Fraser 1986).

13As a result, in dealing with the traditional expectations of how families should be, mothers with disabilities have had little support or even recognition from the women’s movement; the male-dominated, self-help disability movement; or health-related organizations. They face barriers such as low income’ lone parenting; inadequate access at home, at work, or at their children’s schools; inappropriate medical equipment; and poorly-adapted baby furniture. Only recently have the Independent Living Movement, the Disabled Women’s Network, and the women’s caucus committees within the Council of Canadians with Disabilities and within Disabled People’s International begun to address these concerns.

14This summary provides a background against which to understand the historic and recent barriers and concerns associated with parenting and with disability. Given the obvious oppression women face associated with both familialism and disability, it could easily be assumed that women with disabilities are victims. Ironically, my purpose here is to discuss from a fresh perspective children and parents in families in which a parent has multiple sclerosis. In contrast to this idea of victimization, I focus on opportunities.

15This article complements others in this text on feminist change (Reitsma-Street and Rogerson; Medina and Nason-Clark; Parsons and Goggins) which also note that feminist values of equity, respecting difference, and taking time to care can be hallmarks of everyday living with disability. I argue here that a learned respect for difference, along with equity in the distribution of responsibility and in the practice of taking time for each other, sometimes frees family members from restrictive traditional expectations. Through the intimate experience of caring for and knowing a person with a disability, and through feeling cared-for and understood by a person with a disability, oppression associated with disability prejudice and with familialism is reduced.

16I also argue that although caring responsibilities can be oppressive when they are borne by women alone, caring is an enlivening experience when such responsibilities are shared. Feminists can learn from the lives of mothers with disabilities and from the lives of family members who live with a parent’s disability that while inequities in responsibility are oppressive, caring when supported and shared makes us more human.

Respecting Difference

17Lack of accessible transportation, housing, and employment can be as instructive as name-calling for family members as they learn that a parent with a disability is not respected or included in the community. However, within families in which parents reject the notion that only stereotypical body images and functions are valuable, there are many examples that disability is not a reason for exclusion from everyday life.

18When a parent has a disability, spouses and children care for that individual and learn to appreciate the caring they receive in return. Through such caring practices, all family members gain intimate knowledge of the details and the reality of disability and achieve a closeness with an understanding of the person who has a disability.

19In her consideration of race and representation, Bell Hooks (1992) helps us to understand the importance of this closeness in overcoming stereotypical attitudes: “Stereotypes, however inaccurate, arc one form of representation. Like fictions, they are created to serve as substitutions, standing in for what is real. They are a fantasy, a projection onto the other that makes them less threatening. Stereotypes abound when there is distance. They are an invention, a pretence that one knows, when the steps that would make real knowing possible cannot be taken or are not allowed” (170).

20The importance of knowing and respecting difference through closeness was made evident in the study through contrasts among situations I observed. Children in the study who were ‘protected’ from the ‘burden’ of caring for a disabled parent or sibling appeared to maintain stereotypical expectations of the body. In one such family, a boy ignored his mother in her wheelchair when he encountered her on the street. In a similar family, a daughter wished her father would stop visiting her on parents’ weekend at summer camp and a son derisively imitated his father’s tremor.

21In contrast, children who were permitted to help others overcome impairments and to really get to know a disabled person were remarkable in their acceptance of disability as well as of other characteristics usually seen as ‘different’ from the norm.

22One eleven-year-old girl assists her father when he repairs equipment at home and has learned to operate the lift he needs since his muscle strength is impaired by multiple sclerosis. Now that his employment has been relocated to the home, she appreciates his company at home and respects her Dad’s advice about homework. She also helps her younger brother with bed-making because he has “poor balance” and visits this brother whenever he requires hospitalization for a neurological condition.

23In another family, a sixteen-year-old who accompanies his mother to hospital examinations, helps his mother onto x-ray tables and regularly cooks supper after school states that he does not know that his life would be better if his mother did not have MS.

24Children who came to know and respect a parents with a disability through the intimacy of caring then appeared to extend this respect to other areas usually labelled as ‘different.’ For example, stigma has historically been a problem for children who are adopted, and their origins have often been couched in secrecy. One boy in the study who is frequently sent outside when his mother is tired or not feeling well but is excluded from meal preparation because of his young age and male gender, carries conformity into his social relations about adoption. Knowing that he is adopted and that adoption is ‘different,’ he has denied that he is adopted in classroom discussion.

25However, in another family where disability stereotypes had been cast aside, attitudes toward adoption were open and accepting. For example, Nathan reported that “half the school knows I’m adopted,” and his friends know that his mother has MS “because I tell them.” Nathan tends to get his own snack after school. He teases his mother and makes her laugh on days when her multiple sclerosis causes her to feel depressed, and is careful to assist her when the snow makes walking hazardous. Loving his mother and knowing her and her disability have taken the fear out of ‘difference.’

Equity

26Findings suggest that when a mother or father has a disability such as multiple sclerosis, traditional family expectations of hierarchy and division of labour based on age, bodily condition, and gender are challenged. In a number of families, boys and girls as well as men and women functioned in a relatively egalitarian fashion, with flexibility and pragmatism determining work responsibilities.

27Alain at ten years of age appears initially to hold stereotypical ideas about gender. The greatest praise he has for his father is his father’s company at hockey practices and fishing. He even aspires to be a professional hockey player. However, Alain also expresses pride in the fact that he cooks and does the family laundry since his dad’s MS causes fatigue. According to Alain

Everyone has a fair right. Men clean, you know, same as women. You see my dad cleans. Women do too. You do your equal part. I know a[nother] family, they all do equal work. They all so some work and pitch in. It’s two kids, two parents. Both parents go out to work and make money. Both kids do the house chores, same as their parents.

28Nathan, aged 12, is another example of how contributions to the family cross traditional gender and age lines. He helps with the building of an electronic cellar at home, clears the table after meals, puts out the garbage, vacuums, shovels snow, and occasionally cooks supper.

29In assisting her brother, her father, and her mother, Penny shows that children sometimes care for siblings and for people older than themselves. She negates the mythology that children are helpless recipients of unidirectional caring. In her discussions about the future, Penny expects that her husband will do his share of household chores and childcare. She also plans to include her children in task allocation: “If I have any kids, when they grow, I’ll leave it to them to pick up something that’s around the house.”

Dailiness

30Many family members in the study provided stories which emphasized the importance of taking time for and with each other. In learning to respond spontaneously to the needs of a disabled parent as these needs occurred, the need to respond flexibly to everyone became apparent. Dailiness is the feminist recognition of the spaces and bodies in which we live, and through which we experience both tragedies and joys sometimes simultaneously (Aptheker, 1989; see also Reitsma-Street and Rogerson in this text).

31Brian’s mother uses a scooter. He describes how difficult and painful it is for her to move her body onto an x-ray table or upstairs. His sister comments grimly on the barriers presented by curbs at street corners and by stairs in their local highschool. The children also see humour when their mother and her scooter race past the surprised feces of car drivers in the ‘drive-through’ line-up at a fast-food restaurant. Sandra loves the smell of cookies when her mother gives her a baking lesson. Brian thoroughly enjoys the feelings associated with swim practice. Each is aware of the need to enjoy or help when and as the body demands. As Sandra reports, “If anything happens in the morning, she calls me. The dog’s crying, she calls me... She can’t get out of bed, she calls me, but it’s OK.”

Conclusion

32Three ironies emerge from these considerations. First, since the world is not universally accessible, vacations and even visits to children’s schools must be planned well in advance if the parent has a disability. Careful scheduling and attendance to organization is necessary. The spaces and bodies in life to which Aptheker (1989) refers must also be allowed to catch our attention from moment to moment so that we can respond to each other spontaneously.

33Second, mothers with disabilities are at greater risk than most women to the oppression associated with familialism. Because of inadequate supports and recognition for parenting with a disability, there are often too few available within a nuclear family to fulfill the required tasks (Ridington 1989). Yet, families who live within the context of disability and who put aside stigma and stereotypical ideals about who should care can at least provide freedom to care without the bondage of rigid roles.

34Third, in our legitimate protests against women’s being forced to provide informal care, we sometimes imply a denigration of the value of such caring. Examining families in which a parent has a disability helps us to identify more clearly the sources of our oppression and to recall the very positive and human outcomes that caring which is mutual and sufficiently supported can cause for all parties involved. For both women and vulnerable populations such as families living with disability, there are many serious obstacles to liberation, but these do not include caring per se.

35In summary, feminist family critics have identified the family as a site of oppression for women. They have uncovered three reasons that lie behind this oppression: inflexible patriarchal expectations of what a family should be like (Luxton 1988); an unfair burden on women who are expected to take sole responsibility for domestic caring (Neysmith 1991); and the demands of a capitalist economy (Armstrong and Armstrong 1990; Eichler 1988). Economic pressure shapes family schedules and values and reduces the will and the power of the state to provide support to families.

36I would argue that many families living with disability have “feminized” family life by addressing these concerns. They have moved beyond the notions of what families and family members should be like by respecting characteristics commonly labelled as differences. By sharing responsibilities in a relatively egalitarian fashion, they have altered the practice of assuming that women will do all the family caring. Finally, by taking time for each other when time is needed, they are resisting the demands of the competitive economy and its values.

37These subtle alterations to living family life may be radical. They certainly are pathways toward greater humanness. As families living with disability model for our society some pathways out of familialism, the oppression associated with disablism now needs to be addressed.

Bibliographie

References

Abberley, P. 1987. The Concept of Oppression and the Development of a Social Theory of Disability. Disability, Handicap and Society, 2 (1), pp. 5-19.

Aptheker, B. 1989. Tapestries of Life: Women’s Work, Women’s Consciousness, and the Meaning of Daily Life. Amherst, Massachusetts: University of Massachusetts Press.

Blackford, K.A. 1993. Feminizing the Multiple Sclerosis Society of Canada. Canadian Woman Studies, (13) 4, Summer. pp. 124-131.

Bullock, A. 1990. Community Care: Ideology and Lived Experience. Community Organization and the Canadian State. Eds. R. Ng, G. Walker, and J. Muller. Toronto: Garamond Press.

Eichler, M. 1988. Family Change and Social Policies. Family Matters, pp. 63-86.

Fine, M. and Asch, A. Eds. 1988. Women with Disabilities. Philadelphia: Temple University Press.

Finger, A. 1983. Disability and Reproductive Rights. Off Our Backs, 113 (9): p. 5.

Fraser, R. 1986. Volunteers in Action-A Brief History of the Multiple Sclerosis Society of Canada. Toronto: Multiple Sclerosis Society of Canada.

Hooks, B. 1992. Black Looks. Toronto: Between the Lines.

Luxton, M. 1988. Thinking about the Future. Family Matters. Eds. K. Anderson et al. Scarborough, Nelson Canada, pp. 237-257.

Mathews, G.P. 1983. Voices from the Shadows: Women with Disabilities Speak Out. Toronto: Women’s Press.

Neysmith, S.M. 1991. From Community Care to a Social Model of Caring. Women’s Caring. Eds. C. Baines, P. Evans, and S.M. Neysmith. Toronto: McClelland and Stewart Inc.

Prilleltensky, O. 1997. Women at the Intersection of Physical Disability and Motherhood. Paper presented at the Mothers and Daughters Conference, York Centre for Feminist Research, North York, September.

Rogers, and Matsumura. 1991. A Guide to Pregnancy and Birth for Women with Disabilities. New York: Demos Publications.

Ridington, J. 1989. The Only Parent in the Neighbourhood: Mothering and Women with Disabilities. Vancouver: Disabled Women’s Network.

Rioux, M.H. and Crawford, C. 1994. The Canadian Disability Resource Program: Offsetting Costs of Disability and Assuring Access to Disability-related Supports. An Occasional Paper. L’Institut Roeher Institute, York University, North York, Ontario.

Roeher Institute. 1995. In Harm’s Way. North York, Ontario: Roeher Institute.

Scott, K.J. 1995. Manufacturing’Bad Mothers. Toronto: University of Toronto Press.

Wendell,S. 1993. “Feminism,Disability and Transcendence of the Body.” Canadian Woman Studies, 13 (4), pp. 116-122.

Auteur

Royal Bank Research Chair in Disability Studies, Canadian Centre on Disability Studies, Winnipeg; Adjunct Professor in Sociology, University of Manitoba; Associate Professor on Leave, School of Nursing, Laurentian University, Sudbury, Ontario

© Les Presses de l’Université d’Ottawa | University of Ottawa Press, 1999

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