research
Disability policy: help or hindrance?
Claudia Malacrida is a Canadian university-based researcher who will be travelling to the UK to interview British mothers with disabilities about their experiences. If you are interested in learning more, or in participating in an interview, please contact her by e-mail at claudia.malacrida@uleth.ca or by telephone at 1-403-388-4839.
Motherhood is a role that is perhaps more difficult to ‘get right’ than any other.
‘Good mothering’ and disability
Common sense, and indeed research evidence, tells us that all mothers are hard pressed to do all that is demanded of them. ‘Good mothering’, which includes everything from providing constant, expert and dedicated care to acting as role models, means that mothers are asked to do it all. And because children are the future, mothers are often judged harshly when they are challenged in providing care, or when their children experience difficulties.
For women with disabilities, performing motherhood is even more challenging than usual. Mothers with disabilities often ‘do motherhood’ while parenting alone, facing underemployment or living in inadequate housing. Ironically, policies and programmes that are put in place to support people with disabilities can often cause mothers extra problems. This disconnection between women's needs and programmes and policies is a central focus of my research.
Canadian study of mothers with disabilities
For the past four years, I have been interviewing mothers with disabilities in Canada, asking them to tell me about their triumphs and challenges. For Canadian mothers, life is something of a tightrope — on the one hand, living up to high standards of ‘good mothering’ can be challenging, while on the other hand, policies, programmes and social situations act as barriers to ‘good mothering’.
My interviews with 43 women who have various disabilities provide some surprising information. For example, while it might be expected that rural settings would provide a tradition of strong social support, the women's stories indicate otherwise. As might be expected, most of the rural women described more barriers than their urban counterparts in terms of accessing medical and governmental supports. In addition, while rural Canadian women did not enjoy the informal community supports one might expect from a traditional setting, they described instead more social isolation and fewer opportunities to engage in public life than did women living in cities. In part, this was because cities offered public transportation, support groups and accessible public spaces, but it was also clear that small town Canada was less inclusive of diversity than urban Canada.
Public policy as a barrier
Canadian mothers provided insight into problems of policies and services, some of which were quite obvious and others that were less expected. Perhaps not surprisingly, many women spoke about how difficult it was to learn about the availability of services. Several women described discovering funding sources and income supports, for example, by chance. Rather than being directed by their workers to appropriate programmes, these women learned about programmes and services through neighbours or friends, or through chance comments made by helping professionals.
Once women did learn about programmes, they faced significant hurdles in obtaining those supports. For example, Assured Income for the Severely Handicapped (AISH), one of the core financial support programmes in the province of Alberta, is designed to serve individuals with chronic disabilities, and its caseload includes many people with cognitive impairments such as brain injuries or learning disabilities. The application form for AISH funding comprises over 200 questions, involves co-ordinating documentation from several different kinds of professionals, and demands complicated financial disclosures. In my study, several women found the AISH application process so intimidating that they had actually decided against pursuing the funding.
Policy difficulties extended beyond lack of access; several women described personal care programmes that would provide services to the woman herself, but that refused similar care to the woman's children. This meant that a home worker would be permitted to provide meals for and dress the mothers, but that she or he could not do the same for the mother's children. Women were also not permitted to hire family members as caregivers, so that ‘getting around’ this limited home care provision was not possible. In the end, much of the home care policy seemed to be built on the assumption that women with disabilities would not be women with children or women with responsibilities to others.
A final concern was that, even when mothers did find services and supports that worked for them as mothers, those programmes often ceased once their children reached 18 years, the age of adulthood in Canada. Thus, even when children were attending school, living at home and dependent on their parents, family supports phased out at the child's 18th birthday.
Several women with mobility problems were living in homes that were not fully accessible, and were facing financial and city planning barriers to achieving full accessibility. Access to public spaces was also a problem, as many schools, parks, play centres and sporting facilities — places where mothers often go to be with and care for their children — are not designed accessibly. For some of the women, this meant not participating fully in their children's lives.
Creative parenting
Despite these many barriers, the women also described positive mothering experiences. Indeed, some of the women saw their disabilities as providing them with advantages as parents, particularly when their children were also disabled. Women who understood the ‘system’ and who had firsthand experience of disability were able not only to be compassionate and knowledgeable care-givers, but they were also fierce advocates for their children's rights.
Other women described overcoming limited access problems by bringing the world inside. A small number of mothers ran informal day cares from their homes, thus providing much-needed social interaction for their children and building up a network of parents who could pitch in to provide the women with transportation and other services. This was something that happened more frequently in urban, subsidised housing centres, where all parents struggled with limited resources, rather than in suburban or rural areas with more social isolation.
These Canadian women were creative and resourceful, and they often accomplished ‘good mothering’ against the odds and in spite of barriers inherent in the very systems designed to support them.