Academic journal article Women's Studies Journal

Disability Care as Women's Work

Academic journal article Women's Studies Journal

Disability Care as Women's Work

Article excerpt

Abstract

Why is disability care a lifelong role and responsibility for some women? How does disability activism and feminism view the role of disability care? This paper starts with an overview of the limited disability and care data we have in New Zealand, and what can be interpreted from the statistics about the gendering of care. Reference is also made to the new controversial 'Funded Family Care' policy for paying family members for caring for a disabled family member, the recent pay equity win for low-paid aged-care workers, and the 'sleepovers' case. To understand the present and to look into the future it helps to know where we have been, so some illustrative examples of current and historical gendering of disability and care are provided including: past eugenic policies; the mid 20th century struggle by mothers of intellectually disabled children; and mother blaming in autism. This is followed by a consideration of some theoretical approaches in helping to understand the situation from feminist and disability perspectives including addressing issues of ableism and power. The paper concludes with suggestions to address the issues of low status and pay for disability care.

Key words

disability, gender, care, mothering, ableism, eugenics

Introduction

My experience in the disability sector is as a parent, friend, advocate and academic. I got into the area of disability (specifically autism) through mothering. I found that a great deal of ad- vocacy was required for any access to education or community inclusion for my disabled child and became involved at many levels, including on the boards of schools and community or- ganisations. In all these roles the same gendered themes arise. In New Zealand, as in many countries, disability care is overwhelmingly the role and job of women, either unpaid or poorly paid. It is a role that may be life-long, and one that requires ongoing vigilance and responsibil- ity. A more sinister trope sometimes blames women, particularly mothers, for disability, par- ticularly of their own child.

This paper starts with an overview of the limited disability and care data we have in New Zealand, and what can be interpreted from it about the gendering of care. Reference is made to the new and controversial 'Funded Family Care' policy for paying family members for caring for a disabled family member, and the recent pay equity win for aged-care workers. To under- stand the present and to look into the future, it helps to know where we have been, so some illustrative examples of current and historical gendering of disability and care are provided including: past eugenic policies, the mid-20th century struggle by mothers of intellectually disabled children, and mother blaming in autism. This is followed by a consideration of some theoretical approaches in helping to understand the situation from feminist and disability per- spectives, finishing with suggestions to address the issues.

Disability statistics and gender

New Zealand's limited disability statistics reveal gendered differences. The disability sector com- monly refers to one in five or roughly 20% of the population as having a disabling impairment. This is reflected in the title of a long-running Radio New Zealand programme on disability issues called 'One in Five' and data from Census-related disability surveys of 1996 and 2001 (Ministry of Health, 2004). The last Census for which we have disability data was 2006 which reported a 17% prevalence rate. It is possible that disability is underreported or the nature of impairment misunderstood or misinterpreted as Census questions rely largely on self-identification (or car- egivers or family members reporting for those assessed as unable to complete their own forms), and language which confuses impairment and disability - both words which carry cultural and political assumptions. Statistics New Zealand's current definition is: 'a disability is an impair- ment that has a long-term [six months or longer], limiting effect on a person's ability to carry out day-to-day activities' (Statistics New Zealand, 28 June 2013). …

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