Tensions in Disabled Childhoods
Tensions in Disabled Childhoods
Childhood is ruled by developmental "norms."
"Norms" feed professional practice. They govern professional actions in early childhood education, care and intervention services. The parents we talked to were troubled by "norms." They know that learning and development are embodied experiences.
Institutions thrive on documents; human beings thrive on connection.
To be a disabled child is to be continuously documented. But documentation separates "conditions" from whole lives; it fosters disembodied decision-making. The medicalized and normative language used masks the child as an active member of family, community, and programs.
To be a good parent is to produce a normal child.
Regardless of the child, the parents we talked to had learned that to be a good parent is to produce a normal child. Faced with this tremendous responsibility, they can either comply, and gain access to institutional resources, or resist, and be left on the outside. Either way it's hard work.
"The medals represent to me that they are included. That people are happy for [disabled children] and proud of them. And they are proud of themselves."
Hey! Look what I did!
Institutions often use the stories of disabled children to market their services. The "supercrip" narratives of this kind of promotion are challenging- and can be challenged. We discovered resistance in the medals that a disabled child was given for a triathlon. Not as a superhero. Simply as a participant.
Some things are not made to measure.
The clinical trials of medicalized research can reduce individuals to body parts and cognitive functions. The doll in this image was made by hand and gifted to a disabled child who was in hospital. It was lovingly crafted to represent her as a whole human being.
In our language is our belonging.
While language is often a focus of early intervention, it is much more than a developmental domain. Crucial for formal education, language is also about communicating in daily life, passing knowledge between generations, and connecting with each other. As one Elder told us, "language is everything."
Tensions in Disabled Childhoods
This project was developed through a partnership with community, academic, and policy organisations. The partnership spans five geographic areas in Ontario: the County of Wellington, District of Timiskaming, City of Hamilton, City of Toronto, and Constance Lake First Nation.
The research team and partners offer diverse cultural perspectives encompassing rural, remote, and urban communities. In addition, our partners bring service experience from the childcare, early intervention, health, development, and Indigenous service sectors.
"I was ready to take this on full force, but at the same time I was scared and didn't know what to do. I was meeting all these people I had never even heard of before in my whole life-- professionals. And they turn around and tell you that your child doesn't care if you're present or not. That really hurt. So I remember leaving that appointment and just sitting in my van and just crying, crying, crying. Trying to leave the parking lot but I just couldn't."
Through research conducted in five communities across Ontario, Canada (urban, rural, and remote), we map the institutional imprint on families of disabled childhoods, through a project called the Inclusive Early Childhood Service System project (IECSS). The IECSS project uses interviews conducted over a three-year period, from preschool into the school years, with 67 mothers, grandmothers, fathers, and foster parents as they navigate very complex systems of services that constitute evidence of our social response to disability. Kathryn Church notes, workers (in this case family members) "are governed by relations beyond their control" (2016, p. 75). It is in the analysis of these relations that we can uncover the normative approaches our society continues to impose on childhood and on families.
Our research is informed by disability theory and, in that tradition we aim to preserve difference as a value and value what difference can can do (Michalko, 2002). Our research examines institutional responses to childhood disability through the everyday practice of family members. This approach allows us to document how a particular way of understanding human difference is taken up in schools and other institutions that are child focused.
"It is hard as a parent because you have a western view of what the issues are with your child and then you have a traditional perspective on why your children are experiencing these behaviours and health issues and they don't always match up. It is confusing."
Institutional Ethnography (IE) is an empirical study of the everyday in order to expose the ruling power of the institutions in our society (Bisaillon, 2012; Smith, 2005). In this exhibit we present material that is part of a larger study that uses a range of methods to uncover how childhood disability is constructed through early childhood. The focus is on the actions of family members as they engage with early childhood disability and education services. We are particularly focused on the notion of work that arises from Institutional Ethnography- meaning that we are interested in the everyday activities of families as they take time, effort, resources, coordination, and consciousness in order to engage with the work of others (Smith, 2005). This work goes well beyond the professional. In fact, in our study we found that the work of families precludes the work of professionals, and many parents moved from doing this work for their own family to engaging in the work on behalf of others (either paid or as an ethical volunteer practice).
The photos in this exhibit were collected in the third year of the study. We asked parents to show us documents, texts or objects that represented the experience their family had with accessing early years services. We then asked what meaning the object held for the family or for institutions.
"What would happen if you started showing people full pages and descriptions of what your child is not doing? What would happen? If they are scared to hear about allergies when they read all that they will never want to take my child."
Bisaillon, L. (2012). An analytic glossary to social inquiry using institutional and political activist ethnography. International Journal of Qualitative Methods, 11(5), 607-627. doi: 10.1177/160940691201100506.
Church, K. (2016). My dinners with Tara and Nancy: Feminist conversations about teaching for professional practice. In J. Gingras, P. Robinson, J. Waddell, & L.D. Cooper (Eds.), Teaching as scholarship: preparing students for professional practice in community services (pp. 75-87). Waterloo, ON: WLU Press.
Michalko, R. (2002). The difference that disability makes. Philidelphia, PA: Temple University Press.
Smith, D. E. (2005). Institutional ethnography: a sociology for people. Toronto, ON: AltaMira Press.
"Who's going to do all this stuff? I mean maybe some women can manage but I already feel like my daughter is abandoned because of all of this. I don't even have five or ten minutes to spend with her because I am so busy with all this. So much time and effort, everything goes towards this."
Inclusive Early Childhood Service System Project Office
350 Victoria Street- Room KHS 363N
Toronto, ON M5B 2K3
Phone: (416) 979-5263
The IECSS Project is funded through a partnership between the Corporation of the County of Wellington and Ryerson University and Social Sciences and Humanities Research Council (SSHRC) Partnership Development Grant #890-2014-0096.
Graphic design by Creative Users Design.