Based on our research, it is apparent that advocacy is widespread—often crossing class and race lines; parental vigilance, with rare exceptions, is almost a requirement if a child is to receive appropriate services. We also underscore that the meaning of educational credentials—and what it means to have LD—has changed due to a number of developments that have greatly enhanced the social acceptance of children with disabilities. Central to this shift in the zeitgeist is the familial expectation of their rights as citizens, including the rights of their children to a “free and appropriate public education,” despite the uneven distribution of services and the complexities of current bureaucracies and educational law. In other words, we argue that parents (and especially mothers) are increasingly engaging in advocacy on behalf of their children—from modest efforts such as fighting for a classroom placement, to deeply engaged actions of those who organize “speak-outs” and demonstrations at City Hall in support of inclusive education. While stratification remains an enduring aspect of American education, advocacy is also increasingly broadly distributed. Indeed, we would suggest that one of the under-recognized legacies passed on from the activist parents is the growing recognition of the necessity of all kinds of parents—and especially mothers—to learn to “work the system” on behalf of their atypical children. Of course, this does not solve the inequalities of the system and the fact that most families are not engaged in these processes on behalf of their children; as we explain below, simply navigating the system can be overwhelming and intimidating.
With nearly every interview, we heard stories about how families have had to reimagine everything from household budgets to school careers, to sibling relations, to models of humanity that take into account life with a difference. We argue that the stories our respondents told us about living with disability—from the moment of birth onward—collectively constitute a “new kinship imaginary” with temporal and social implications. Not only does this new imaginary map an emergent terrain that encompasses a broader range of humanity; it also reframes the implicit norms and expectations of the consequences of reproduction over the life course as the “difference of disability” reverberates through the domestic cycle, changing its rhythms in unanticipated ways.
These reverberations and their impact on cultural imaginaries are thus fundamental to our analysis, bringing us back to kinship, a human system that is resilient, demanding, and—at its best—adaptable. Such “new kinship imaginaries” are widely distributed in ethnographic research on ARTs as well as queer theory and science studies that demonstrate innovations in kin relations to accommodate new technologies of life: radical transformations in intimate relations are normalized in the language and practices of familism. Some of these differences—such as the use of assistive reproductive technologies during a limited period of their domestic cycle for couples with problematic fertility—are more easily absorbed into typical family narratives once a healthy pregnancy is achieved. Other kinds of difference, such as ‘queer kinship’ or the incorporation of disabilities into family life that is our topic, endure in publicly visible ways over the domestic cycle, thus requiring new kinship imaginaries at every level, from family rituals to state bureaucracies. We have been struck in our work that kinship ties are ‘everywhere,’ a diffuse and powerful ‘back story’ to not only a changing kinship imaginary but also a transforming social narrative.
It isn’t just the powerful resignification of kinship between children with disabilities and their parents and other relatives as transformative that we want to note.1 Coming to grips with learning disabilities leads not only to potential activism, but to the changed shape of a life cycle for that child and his/her intimate others, and their domestic cycles as well. When a child’s education is “stretched out” to accommodate difference, so is the time of parenting. When children are excluded from school or must be represented in a battle to access and retain services, so, too, does the domestic unit change to incorporate such struggles and exclusions. When a child’s developmental narrative is rewritten by a relatively late diagnosis, so, too, is the family’s sense of its history refashioned. When family members experience a “dead end” in the search for innovative services or therapies that might enhance the life of their disabled members, some may become inventors, researchers, project-providers. When children grow through adolescence into a trajectory that does not entail the expected reproduction of class and culture, they travel into an unanticipated future, taking their families along with them. It is in this absence of a recognized kinship narrative, we suggest, that families create new kinship imaginaries, and it is to some examples of these to which we now turn.
- Rayna Rapp and Faye Ginsburg, “Enabling Disability: Rewriting Kinship, Reimagining Citizenship,” Public Culture 13.3 (2001): 533-556. [↩]
