My Mom Was My Left Arm: The lived experience of ableism for girls with Spina Bifida

Cheryl van Daalen-Smith
Associate Professor, School of Nursing, Faculty of Health, York University, Toronto ON, Canada

PP: 262 - 273

Abstract

In many cultures, people deemed different, deficient or of lesser value are socially marginalized, disempowered, devalued and face innumerable barriers to health and quality of life. Persons deemed disabled are one such group. Through oppression, discrimination, and constant degradation, marginalized groups are denied the basic human right of dignity. For five girls with Spina Bifida, the experience of societal ableism, i.e. the belief that being able bodied is normal, eroded their sense of self worth, impinged upon their human rights, and isolated them in their own degradation - until they came together and spoke.

My Mom Was My Left Arm illuminates the impact of ableism on the health and well-being of girls living with Spina Bifida. Several focus groups with five girls concerning their lives, anger and health yielded compelling reasons for today's contemporary nurse to explicitly practice from a social justice framework. In being deemed other, less than and viewed as their disability, the young women interviewed believed they had never reached their actual life potential. The relationship between health and ableist discrimination as lived by young women with Spina Bifida will be explored. The paper will close with nursing's ethical imperative to advocate for social justice, equity, fairness and dignity.

| More

Keywords

girls, Spina Bifida, anger, ableism, social justice


View references

References

Banks-Wallace J (1998) Emancipatory potential of storytelling in a group. Image: Journal of Nursing Scholarship 30(1): 17-21

Borsa J (1999) Towards a politics of location: Rethinking marginality. In Amin N, Beer F, McPherson K, Medovarski A, Miles A and Rezai-Rashti G Canadian woman studies: An introductory reader. Toronto: Inanna Publications, pp.36-44.

Butterfield P (1990) Thinking upstream: Nurturing a conceptual understanding of the societal context of health behaviour. Advances in Nursing Science 12(2): 1-8.

Canadian Nurses Association (2002) Code of ethics for registered nurses. Ottawa: CNA House.

Carson R (1962) Silent Spring. Cambridge: The Riverside Press.

Chenitz C and Swanson J (1986) From practice to grounded theory: Qualitative research in nursing. Ontario, Canada: Addison Wesley Publishing.

de Beauvoir S (1949) The Second Sex. New York: Albert Knopf Press.

Frye M (1983) The politics of reality: Essays in feminist theory. Trumansburg, New York: The Crossing Press.

Gerrard N and Javed N (1998) The psychology of women. In N Mandell Feminist Issues: Race, class and sexuality. Ontario: Prentice Hall Canada, pp.103-131.

Levine H (1989) The personal is political: Feminism and the helping professions. In Miles A and Finn G Feminism: From pressure to politics. Montreal: Black Rose.

Lincoln YS and Guba EG (1985) Naturalistic inquiry. San Francisco: Sage.

Lorde A (1984) Sister outside: Essays and speeches by Audre Lorde. California: The Crossing Press.

Lowe S (1995) Essay. In Kahlo F The diary of Frida Kahlo: An intimate self-portrait. New York: Abrams, pp.25-32.

Miller JB (1985) The construction of anger in women and men. The Stone Center Works in Progress Paper No 4. Wellesley, MA: Wellesley College.

Olkin R (1997) The human rights of children with disabilities. In G Anderson and M Hill, Children's rights, therapists' responsibilities. New York: Haworth Press, pp.29-42.

Rauscher L and McClintock M (1997) Ableism curriculum design. In Adams M, Bell L and Griffin P, Teaching for diversity and social justice. Routledge: New York, pp.198-199.

Rich A (1979) On lies, secrets and silences. New York: WW Norton

United Nations (1989) Convention on the rights of the child. General Assembly of the United Nations: Geneva, Switzerland.

van Daalen-Smith C (2004) Living as a chameleon: A feminist analysis of young women's lived experience of anger. Unpublished doctoral dissertation, Ontario Institute for Studies in Education of the University of Toronto, Toronto, Ontario, Canada.

World Health Organization (1986) The Ottawa charter for health promotion. Ottawa: Canadian Public Health Association.



Sign Me Up

*Email Address
First Name
Surname

Web Feed

Latest Articles

Special Issues

Indigenous Health Care (2nd edn)
Volume 37/1


Nursing Workforce and Workplaces
Volume 36/1
Summary


Modeling of Clinical Nursing Care
Volume 35/1
Summary


Advances in Contemporary Mental Health Nursing – Second Edition
Volume 34/2
Summary | Contents


Advances in Contemporary Nursing and Gender
Volume 33/2
Summary | Contents


Advances in Contemporary Nurse Education
Volume 32/1-2
Summary | Contents


Advances in Contemporary Nursing: History of Nursing and Midwifery in Australasia
Volume 30/2
Summary | Contents


Advances in Contemporary Transcultural Nursing: Pathways to Cultural Awareness (2nd edn)
Volume 28/1-2
Summary | Contents


Advances in Contemporary Palliative and Supportive Care
Volume 27/1
Summary | Contents


Advances in Contemporary Aged Care: Retirement to End of Life
Volume 26/2
Summary | Contents


Advances in Contemporary General Practice Nursing: Role of the Practice Nurse
Volume 26/1
Summary | Contents


Advances in Contemporary Nurse Recruitment and Retention: Problems and Challenges in Human Capacity Development
Volume 24/2
Summary | Contents


Advances in Contemporary Community and Family Health Care
Volume 23/2
Summary | Contents


Advances in Contemporary Indigenous Health Care (1st edn)
Volume 22/2
Summary | Contents


Advances in Contemporary Nursing and Interpersonal Violence
Volume 21/2
Summary | Contents


Advances in Contemporary Mental Health Nursing (1st edn)
Volume 21/1
Summary | Contents


Advances in Contemporary Child and Family Care
Volume 18/1-2
Summary | Contents


Advances in Contemporary Transcultural Nursing (1st edn)
Volume 15/3
Summary | Contents




Website by Arrowsmith Websites. Business, Government & Corporate Websites, Web Hosting, Domain Names & SEO. Maleny, Sunshine Coast, Australia.