New Knowledge about Motherhood: An Autoethnography on Raising a Disabled Child

By Zibricky, C. Dawn | Journal of Family Studies, April 2014 | Go to article overview

New Knowledge about Motherhood: An Autoethnography on Raising a Disabled Child


Zibricky, C. Dawn, Journal of Family Studies


ABSTRACT This inquiry examines my personal experience of motherhood as it relates to raising a disabled child. Through the methodology of autoethnography, stories and narratives where examined to expose my marginalized position within the realm of motherhood. Two critical theoretical frameworks, motherhood studies and disability studies where used to uncover new knowledge about the culture of motherhood. New themes included intense judgment, predictability, disappointment and the fear of 'letting go'.

Keywords: motherhood, motherhood studies, disability studies, marginalization, autoethnography

Motherhood experience

On a cold November day in Chicago, a well-known child psychologist stated, 'Your son may never come to know you as his mother. Children with autism will usually see you as nothing more than an object.' These were the first words I remember when my son Cameron was diagnosed with autism over 15 years ago. The psychologist continued, 'He will probably never be able to work or own property. It will be a good idea to contact the state's social services department to begin to investigate a waiting list for residential living.'

The authoritative medical institution assumed that having autism meant that Cameron would never know me as his mother nor would he be able to work or live on his own. From this assumption, the psychologist was telling me to place Cameron in residential living clearing him from society. Furthermore, the message was clear that I as a mother could simply exit his young life living motherhood at the door.

Since I became a mother of a disabled child, I have encountered the beliefs created by the authoritative institutions of society including the medical institution, educational system and legal structure of society. These authoritative institutions create knowledge which the dominant culture of society then takes up as truth. To clarify, the dominant culture in the United States (US) has historically been men who are White, middleclass, Christian, heterosexual and able-bodied. For decades, feminist scholars have been uprooting the patriarchal dominant culture's beliefs as they relate to the roles of women in society including how women are cultivated into the culture of motherhood (Badinter, 1980; O'Reilly, 2010; Rich, 1986; Ruddick, 1982). Feminist inquiry has brought to light the struggles of mothers as they navigate a world dominated by men and authoritative institutions that ultimately have defined the roles of women, mothering practices, and motherhood (Butler, 1990; Hays, 1996; Ladd-Taylor & Umansky, 1998; Maushart, 1999).

The issues facing mothers today extend well beyond patriarchal oppression and intersect with other forms of oppression from the dominant culture including race/ethnicity, gender, and class (Stitt & Powell, 2010, p. 9). Recently, new arguments about motherhood have emerged. Single mothers are claiming space and subjectivity regarding their experiences in motherhood (Duquaine-Watson, 2010); lesbian mothers are uncovering the challenges of confronting societal discrimination about family and mothering normativity (Epstein, 2010); the Chicana mothering experience and prejudiced notions of their Chicano sons have been explored (Vasquez, 2010); and mothers raising gay sons or transgender children in a society that values heterosexuality are examined (Pearlman, 2010; Peukert, 2010). However, very little is known about mothers raising disabled children.

The dominant culture of society is able-bodied and values individuals who they believe can contribute as working labor in capitalist society (Finklestein, 1980; Hahn, 1996, 1997; Oliver, 1990, 1991). The authoritative institutions of society including the medical institution, educational system and legal structures define disability leading to the oppression, marginalization and elimination of the disabled. Furthermore, the definitions and knowledge created by these authoritative institutions then lead to the dominant culture acting upon the social construction of who is valued in society (Charlton, 2010). …

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