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Colonialism in Early Education, Care, and Intervention: A Knowledge Synthesis

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  • Toronto Metropolitan University

Abstract and Figures

This knowledge synthesis aims to understand Indigenous experiences of early childhood education, care, family support, intervention, health, and Indigenous services in the context of childhood disability. Each of these institutional contexts has its own underlying professional discourses and worldviews. Knowledge from three sources have been synthesized: (1) interviews with Indigenous families about their experiences of having disabled children, conducted through the Inclusive Early Childhood Service System (IECSS) Project; (2) analysis of the IECSS interviews by the Districtof Temiskaming Elders Council and Indigenous community partners; and (3) the existing body of literature on disability and Indigenous children.This project was conducted in partnership with a mixed team of Indigenous and settler researchers.
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Colonialism in Early Education, Care, and
Intervention: A Knowledge Synthesis
Kathryn Underwood, Nicole Ineese-Nash, and Arlene Haché
Kathryn Underwood is a professor in the School of Early Childhood Studies and the project director for the Inclusive Early Childhood
Service System (IECSS) Project at Ryerson University. Her work focuses on equity and disability issues in early childhood studies, as
well as in education, care, and intervention social policy and practice. Kathryns research uses critical disability theory as a starting
point for understanding how society responds to and constructs childhood through social institutions.
Email: kunderwood@ryerson.ca
Nicole Ineese-Nash is an Indigenous scholar, teacher, and researcher. She holds a master’s degree in early childhood studies from
Ryerson University and is pursuing doctoral studies in social justice education at the University of Toronto. She was formerly a
project coordinator for the IECSS Project, which explores family perspectives of navigating disability support services across Ontario,
including in Nicole’s home community of Constance Lake First Nation. Nicole’s research interests include Indigenous concepts of
child development, disability, traditional governance, and family support. She is passionate about supporting social justice initiatives,
taking a critical lens to colonial social structures that perpetuate harm for particular peoples in society.
Email: nicole.ineesenash@ryerson.ca
Arlene Haché is a program developer with the Keepers of the Circle and liaison for the Council of Wisdom Keepers for the District
of Temiskaming. Ms. Haché founded and was executive director of the not-for-prot Centre for Northern Families for 25 years. e
Centre primarily served First Nations, Inuit, and Métis women and their families through a variety of services, including child care,
family support, and early intervention programs. As a result of her work and leadership in the North, Ms. Haché was awarded the
Order of Canada in 2009 and received the Queen Elizabeth II Diamond Jubilee Medal in 2012. Email: arleneh10@hotmail.com
Early intervention and Indigenous children
Early intervention (EI) is understood to be an important
strategy to ensure optimal development for all children
and is largely delivered in health or therapeutic settings.
Ample research supports the ecacy of EI strategies,
which has resulted in broad advocacy for EI, including
through international human rights law (United Nations,
2006). However, the rehabilitation focus of EI, and the
embedded medical model, have been critiqued because
of the tensions that arise between trying to optimize
development and ensuring that children are valued as
unique individuals (Underwood, Valeo, & Wood, 2012).
EI includes cognitive, social-emotional, communication,
physical, and developmental supports, which are oered
to children who are identied as having (or are at risk
of having) a disability or developmental delay (McCarty
& Romanow, 2009; Underwood, 2012). EI programs
are oered within the home (Dunst, Bruder, & Espe-
Sherwindt, 2014), educational contexts (Barnett, 2011),
healthcare centres (Bagnato et al., 2004), community-
based settings (Hiebert-Murphy, Trute, & Wright, 2011),
and clinical services (Zwaigenbaum et al., 2009). e
delivery of EI services is oen dependent on diagnostic
is knowledge synthesis aims to understand
Indigenous experiences of early childhood
education, care, family support, intervention,
health, and Indigenous services in the context of
childhood disability. Each of these institutional
contexts has its own underlying professional
discourses and worldviews. Knowledge from
three sources have been synthesized: (1)
interviews with Indigenous families about
their experiences of having disabled children,
conducted through the Inclusive Early
Childhood Service System (IECSS) Project; (2)
analysis of the IECSS interviews by the District
of Temiskaming Elders Council and Indigenous
community partners; and (3) the existing body of
literature on disability and Indigenous children.
is project was conducted in partnership
with a mixed team of Indigenous and settler
researchers.
Key words: Indigenous childhoods; childhood
disability; early intervention
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assessments which determine eligibility (Bruder, 2010). Screening procedures for young children have been
critiqued for the assumption of a single trajectory of development that may not be consistent across all families
and cultures (van Widenfelt et al., 2005).
Indigenous children access various supports in non-Indigenous settings, which have underlying pathological
frameworks that are inconsistent with Indigenous worldviews (Chapman, 2012). Research suggests that EI programs
operating from a medical model (i.e., those that treat developmental dierences as resulting from individual
characteristics) are less successful than those incorporating a more holistic view of the various factors involved
in childhood development (Gerlach & Zeidler, 2004; Guralnick, 2011). Institutional intervention for Indigenous
children may reproduce colonial practices that can be harmful to childrens cultural identities and familial
connections (Ball, 2008; Chapman, 2012; Ineese-Nash, Bomberry, Underwood, & Haché, 2017). Understanding
Indigenous perspectives of development and disability is crucial to the provision of culturally appropriate EI
services (Ball, 2008; IECSS Project, 2017b), but has yet to be a prominent focus of disability research.
Indigenous childhoods, disability, and colonialism
Indigenous communities have diverse beliefs and traditions that can support culturally safe EI services for
Indigenous populations (Battiste & Youngblood, 2000; Dei, Hall, & Rosenberg, 2000). Indigenous communities
also share values, such as relationships with each other and with the land (Alfred & Corntassel, 2005). In many
Indigenous communities, children are revered as gis (Greenwood, 2006). Each child brings unique abilities and
strengths to the family and the larger community (Guilfoyle, Saggers, Sims, & Hutchins, 2010). It is the responsibility
of those around the child to nurture and foster each childs gis as they develop (Best Start Resource Centre, 2010).
Indigenous communities value what each individual brings to the collective (Fleer, 2004).
Children’s development from an Indigenous perspective goes beyond mastering skills or attaining developmental
milestones (Greenwood, 2006). e focus instead is on supporting childrens relational identities and experiential
learning (Ball & Pence, 2006; Greenwood & de Leeuw, 2007). Indigenous children accessing disability supports
oen spend time in multiple environments that can be culturally dissonant from their communities (Ball, 2008).
Few early intervention programs are developed specically for Indigenous children (DiGiacomo et al., 2013) and
the lack of integration between cultural services and disability supports can lead to children having to choose
between their Indigenous and disability identities (IECSS Project, 2017a, 2017b).
While statistics on Indigenous identity and disability are not readily available, it is estimated that the rate of
childhood disability among Indigenous children is double that of the general population in Canada (Durst,
2006). Culturally inappropriate assessments may be leading to overrepresentation of Indigenous children in
special education programs and disability services (Fleet & Kitson, 2009; Nguyen, 2011). Colonialism continues
to create social conditions of poverty, environmental risk, and trauma that also are causes of childhood disability
(Czyzewski, 2011; Greenwood, 2005). Further, Indigenous peoples are less likely to seek support from mainstream
institutions, such as medical and intervention services, and oen report receiving inadequate care within these
settings (Allan & Smylie, 2015; DiGiacomo et al., 2013; Woodgate, 2013). e health and well-being of Indigenous
children comes from connection with their land and culture, which is not available in mainstream EI services
(Greenwood & de Leeuw, 2012).
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Method
Family interviews
Interviews with families about their experiences of accessing disability support services for their young children are
the rst data source for our knowledge synthesis. rough the rst phase of the Inclusive Early Childhood Service
System (IECSS) Project we interviewed 67 families, 21 of whom identied as Anishinabek, Haudenosaunee, or
Métis. We met the families once per year over a three-year period (2014–17) across ve communities in Ontario (the
city of Toronto, city of Hamilton, Wellington County, District of Temiskaming, and Constance Lake First Nation).
e IECSS Project is a longitudinal institutional ethnography that aims to understand how the processes and social
relations in institutions act on families and children. rough the project we have identied many contrasting
views of disability that are embedded in early childhood services. In this knowledge synthesis we are interested
in the contrast between institutionally constructed disability discourse and Indigenous views of childhood as
an empirical tool for analysis of ongoing colonization of Indigenous childhoods (Ball, 2012; Greenwood, 2006;
Tremblay et al., 2013).
Elder and community knowledge
e IECSS Project was guided by the District of Temiskaming Elders Council from the outset. Additionally, the
project team consulted with numerous Indigenous-led community agencies throughout the process. is approach
was taken to honour Indigenous ways of analyzing and synthesizing information. ese discussions focused on
understanding the IECSS ndings through the cultural, linguistic, and historic viewpoints of Indigenous peoples.
In February of 2017, the Elders Council, along with the IECSS research team, hosted a meeting of Indigenous
community partners at Native Child and Family Services in Toronto. is gathering was intended to disseminate
the results of the rst year of the project data to the community partners and engage in a dialogue regarding
the ndings, and how these results could impact policy development. Subsequently, policy makers were invited
for a brief discussion of the project and ideas about policy implications. is meeting was audio-recorded
and transcribed. ese discussions, as well as previous community meetings, are considered integral to the
understanding of Indigenous early childhood disability and experiences of accessing interventions within these
communities. Findings from these meetings and additional consultations with the Elders and community partners
were used to develop a video (IECSS Project, 2017a) and a policy brief (IECSS Project, 2017b). ese discussions
are the second data source integrated into this knowledge synthesis project.
Literature search
A systematic literature review was conducted to examine the current state of the academic literature on childhood
disability in Indigenous communities; it forms the third data source. A search of three databases (Proquest, ERIC,
and PubMed) with advanced search capacity was conducted using descriptors of Indigeneity (i.e., Aboriginal, First
Nation, Indigenous, Native, and American Indian), disability (i.e., disability, special needs, exceptionality) and age
(i.e., early childhood) as search criteria. Next, Indigenous-specic academic journals, community agency websites,
and government resources were searched for relevant peer-reviewed and grey literature reports. Resources were
included in the synthesis review based on relevance of the age range (from early childhood to middle school)
and service systems implicated (EI, disability, and health). We did not restrict the review to particular methods,
outcomes, or theoretical positions because we were interested in the overall discourse available, as well as the
knowledge base in the academic literature. e process of identifying relevant studies began with screening titles
and key words within search results (initial search yielded 3210). Abstracts were then reviewed from articles
identied as applicable to the search parameters. Further review of particular articles allowed for the narrowing of
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results to 81. Figure 1 shows a summary of the literature review data sources.
Figure 1. Summary of the literature review process.
Findings
Our three sources of data yielded similar but variable key concepts, which we describe below.
Family interview ndings
We analyzed the IECSS Project interview data through coding the interviews and mapping families’ experiences
as they interact with institutional processes. e results indicate that institutional processes in EI, early childhood
education and care, and Indigenous services are governed by several factors, including families’ worldview and
cultural perspectives; historical factors such as family relations and experiences with institutions including
residential schools and child apprehension; access to Indigenous services, which includes whether these services
are available in a geographic area or if they are oered as part of disability services; geographic accessibility of
disability services, particularly on reserve and in the north; the support of families that was evident throughout
Indigenous experience; and nally, concerns about transition to school, which were connected to distress about
racism, ableism, and understanding of individual characteristics of children by peers and teachers (IECSS Project,
2017a; Ineese-Nash et al., 2007). ese ndings are described in more detail in the next section as part of the
synthesis.
<<insert Figure 1 about here>>
Figure 1. Summary of the literature review process.
Findings
Our three sources of data yielded similar but variable key concepts, which we describe below.
Fa mily interview findings
Search: Academic peer-reviewed journals,
government databases, and agency websites for
Indigenous early childhood disability and
intervention
Articles identified through initial
search
N = 3210
Titles and abstracts read
N = 1334
Full article reviewed
N = 187
Total included in review
N = 81
N = 154
Excluded/irrelevant
N = 1893
Excluded/irrelevant
N = 1147
Excluded/irrelevant
N = 106
sources N = 17
Commented [LP1]:
Note to Jess at TPH: The figure isn ’t
saved as a unified object. Please f ix so that the caption
displays correctly underneath it. Thanks!
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Elder and community knowledge
We have identied four areas of focus from the Elders’ and community partners’ analysis of IECSS ndings:
cultural-linguistic, access to services, institutional processes, and constructs of disability.
Cultural-linguistic. e Elders and community members identied cultural-linguistic concepts and practices as
central to family and childhood experiences. Families spoke about the cultural activities they engage in with their
children, such as smudging, attending powwows, and practicing their traditional language. Many families attend
a variety of programs in Indigenous-specic agencies with the intention that their child will be able to engage
in cultural programming. While parents seek out culturally based early learning and care programs in order for
children to have opportunities to learn in cultural ways, these programs are not oered in all communities. Some
families expressed feeling connected to their culture when accessing culturally specic programs for their children,
even when those programs are not directly focused on teaching parents. A few families engage in ceremonial
practices exclusively within service agencies or programs, which gives these environments meaning beyond a
support service for the children. e cultural identities of participants in the study are diverse and inuence
childrearing practices. For example, some participants with some Indigenous heritage identied more closely with
their European heritage, which impacted the types of services they would seek for their children.
Families in the study have various perspectives of their childrens gis, which in some cases reects a cultural
viewpoint. Children are described as being unique, special, and at times challenging. Families oen describe
children’s behaviours in the home in ways that dier from the perspectives of service providers. at is to say that
certain behaviours or manifestations of disability were not necessarily problematic in the home setting, as families
were able to understand the needs of the child and accommodate them. Elders told us that oen the disagreements
between families and service providers are “cultural misunderstandings” which can lead to the misdiagnosis of
children. Cultural expectations vary depending on the environment, which can be dicult for some children to
navigate. For instance, one child who was diagnosed with three behavioural conditions by a school psychologist
was regarded as a spiritual conduit by his family. Families oen have their own explanations for a child’s behaviour
that are not acknowledged by professionals.
Families also want professional support and some families have strong relationships with service providers. In
most cases, however, culture is not an explicit focus of intervention services, which means that children spend time
in settings that do not provide cultural teachings. One mother said,
Being a mother and a family person, we try to incorporate our cultural beliefs and spiritual values when
raising our children. It is very hard to live in a society where those teachings and values aren’t always
appreciated. My children have had a very strong understanding since a young age about those cultural
values and beliefs. (as cited in Ineese-Nash et al., 2017)
In the current system of services, families are being forced to make decisions between cultural programs and
intervention supports. An Elder shared:
[Parents] just don’t have time. People do not have time to do both, cultural interactions, cultural
learning, and traditional understandings as they raise their children. The priority becomes the physical
needs of the child, and that sometimes overtakes that time in a day to be able to come to an ofce
and spend some time learning about drumming and learning about cultural things. (as cited in IECSS
Project, 2017a)
Diering cultural perspectives make it dicult for families to access the types of support they feel their child needs
while also maintaining traditional and spiritual beliefs. Indigenous partners in the study have told us that many of
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the services that children access are categorized in developmental domains, without a consideration of the spiritual
realm. Dierences in childrens behaviours and displaying of gis are thought to reect the child’s spirit.
Access to services. Accessing disability support services looks dierent depending on where a family lives, their
unique circumstances, and the perspectives they hold. Families living in northern communities face signicantly
more challenges in accessing support services than those living in the south. Northern families (such as those living
in Temiskaming and Constance Lake) have to travel to access services in urban centres. Professionals coming into
northern communities generally serve a large number of families, which limits their capacity to form trusting
relationships with children and their families. Elders tell us that to understand childrens abilities, we need to look
at the values of the family and community, as well as the social conditions in which the child lives.
Perspectives families hold regarding their child, disability, and the service system inuence which types of supports
they will try to access. Indigenous families oen have fewer options, depending on where they live. Some families
identied their child as disabled, while others said they felt this is a label put on their child that does not reect
the child’s gis. While these are not mutually exclusive ideas, families who identify with disability are generally
more likely to seek institutional supports. Getting disability-specic support, for some families, is the rst priority,
with particular focus on medical or clinical services, while other families may feel their child benets more from
culturally based programs. Families also may be forced by child protection or social services to engage with service
providers.
Institutional processes. Family circumstance plays a crucial role in access to EI services for Indigenous children
with disabilities. e manner in which the service system functions puts onus on the family in order for services
to be provided to the child. Families’ ability to engage in the institutional processes of the service system (such as
following up with referrals, lling out paperwork, attending appointments) depends on multiple factors, such as
socioeconomic status, literacy levels, health of the parent, knowledge of the service system, and comfort interacting
with institutions. is means that some families are able to navigate the service system more easily than others,
which can lead to more services for their child. From an institutional ethnography perspective, accessing services
is related to families’ ability to do the work of the institution, but this ability is largely based on the social position
the family holds within that context. In this way, the service system favours particular people, which fosters a social
hierarchy and rearms colonial structures. One Elder said:
As much as we believe that a specialist can diagnose, who is to say that they as a human being have
the responsibility to do so? We as family groups, as family, extended family, aunts, uncles, people that
are with our children, those are the people who truly know what it is that this child is capable of and
have the ability to succeed in. (as cited in IECSS Project, 2017a)
In addition to physically attending specialist appointments, families also need to follow through with the processes
involved with interacting with the service system. Depending on what services are available in a particular region,
there may also be additional processes involved with getting travel funding, as families must oen travel to urban
centres to meet specialists. ese obstacles are compounded when a family has more than one family member
experiencing disability, or they need to access other services that are not available in their community for multiple
family members, which was the case for most families in our study. e more services a family is accessing, the
fewer resources a family may have to devote to engaging in institutional processes related to their childs care.
Construction of disability. Indigenous knowledges tell us that children have their own gis that begin to show
as they grow and interact with others around them. Developmental dierences are seen by communities as
opportunities to learn. In this way, children have gis to share with others in the community, though it is up to
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those around them to listen and watch to help the child realize these gis. One cultural advisor explained:
[Children] they know what they need. But sometimes words cannot come out of their mouth. Sometimes
doing is the best way they know how and they’re showing us physically what needs to be done. […] We
need to give them that ability to be able to walk in a good way in their life and to be able to recognize
their gifts that they do have and as an Anishinaabe person, as a gifted person that came into this world
to be a good teacher to us. (as cited in IECSS Project, 2017a)
Dierences are oen seen as strengths within communities. Having said that, many families in the IECSS Project
want EI services to support their children in progressing with others their age. Our community partners tell us that
dierences should be acknowledged and supported while at the same time meeting the child “where they are at.
Supporting an individual who may face challenges in participating in community life should be done in a manner
that “does less harm” and surrounds the family who are part of the child’s life. Diagnoses that are attributed to
individual pathology may in fact be caused by trauma related to intergenerational impacts of colonization. Other
dierences may be a result of a cultural way of raising children that impacts the timing of particular skills, such
as the age at which a child walks or talks. Ultimately the mainstream approach that focuses on identifying non-
normative development early, and intervening early, may be in conict with the Indigenous value of waiting and
observing the gis that a child oers.
Findings from the literature
Literature on Indigenous early childhood disability is not extensive in comparison to research literature on
childhood disability, particularly clinical studies of specic conditions. However, this review identied a body
of work that focuses on Indigenous childhood disability in the elds of health, early childhood education and
care, and EI services internationally and in Canada. Articles reviewed were predominantly focused on Indigenous
populations in Canada (Ball, 2009; Gerlach, 2008), the United States (Ogata, Sheehey, & Noonan, 2006; Tepper
& Tepper, 2004), New Zealand (Lyons, 2013), and Australia (D’Aprano, Carapetis, & Andrews, 2011; Nelson &
Allison, 2004). Some Indigenous African (Owusu-Ansah & Mji, 2013) and South American perspectives (Bailey
et al., 1999) were also found. e purpose of this review was to synthesize the existing body of academic and
community literature on Indigenous early childhood disability generally; therefore, specic diagnostic categories
were not used in the search criteria. We did not restrict the literature review to research specically by or from
Indigenous scholars.
Despite our search criteria, many articles focused on specic categories of impairment such as speech and language
support (Peltier, 2017), occupational therapy (Gerlach, 2007), behavioural concerns (Chartonas & Bose, 2015),
autism (Mandell et al., 2009), or educational achievement (Faircloth, 2006). ere was also a body of work that
included Indigenous experiences of disability in early childhood generally (DiGiacomo et al., 2013) and in special
education (Hibel, Faircloth, & Farkas, 2008), as well as specic discussion of Indigenous early learning (Greenwood,
2006), service navigation (Green et al., 2016), and health (Kenney & ierry, 2014). e articles reviewed yielded
ve broad areas of information: cultural identity and self-determination; pathologizing of Indigenous children and
families; environmental and prenatal impacts on development; assessment and diagnosis; and social determinants
aecting disability. ese are described below with reference to the ndings from the IECSS Project and the Elders’
and community viewpoints.
Cultural identity and self-determination. e literature suggests that there is an increasing awareness of the role of
culture in the development of intervention services and the diagnosis procedures associated with disability support.
Limited examples of specic disability support services operating from an Indigenous perspective were identied
(Niles, Byers, & Krueger, 2007 is, however, one example). Many articles spoke about the cultural conceptualization
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of disability and its inherent impact on the provision of EI (e.g., DiGiacomo et al., 2013). Cultural identity is
overwhelmingly discussed in the literature as critical to childrens development (Greenwood, de Leeuw, & Fraser,
2007; Joe, 1982; Nichols & Keltner, 2005), and the development of culturally specic EI programs is seen as a
means for Indigenous self-determination (Ball, 2009; Peltier, 2011; Simmons, Novins, & Allen, 2004). Indigenous-
led education programs are discussed as a preventative strategy to mitigate negative outcomes associated with
particular disabilities and poor social conditions (Greenwood, 2006; Niles et al., 2007; Peltier, 2017; Terbasket &
Greenwood, 2007). Many articles spoke to the impact of colonization on Indigenous health (e.g., Greenwood, de
Leeuw, & Fraser, 2007) and the ability of families to navigate the complex system of services for their children (e.g.,
Green et al., 2016). Culturally informed disability support may be one way for Indigenous communities to develop
intervention systems that allow for Indigenous control of development services (Simmons, Novins, & Allen, 2004).
Pathologizing of Indigenous children and families. e pathologizing of Indigenous parents and children is
found throughout the literature. Studies identify parents as being responsible for their child’s disablement (Block,
Balcazar, & Keys, 2001), uninvolved in their development (Hibel et al., 2008), or unequipped to handle the demands
of parenting a child with a disability (Joe, 1982). While research supports the claim that Indigenous children are
at risk of developmental delays and disability, the underlying assumptions about Indigenous parents as the cause
is concerning.
Environmental and prenatal impacts on development. Much of the research on childhood disability in
Indigenous communities is focused on drug and alcohol abuse in pregnancy and its impacts on child development
(Kenney & ierry, 2014) and, to a lesser extent, the impacts of toxic substances from environmental pollutants
(Allan & Smylie, 2015). In addition, a review of research on the prevalence of childhood disability research in
Canada indicates an overrepresentation of studies on fetal alcohol syndrome, with little attention to trauma,
autism spectrum disorder, and cerebral palsy, leading causes of childhood disability in Canada (Di Pietro & Illes,
2014). Our research has resisted examining specic disability categories in order to focus on the institutional
responses to disability. ese institutional practices are oen quite generalized, despite the reliance on diagnosis as
a gatekeeper. e overall pattern of institutional interaction begins in infancy with hospitals and intensive health
care intervention at birth, and then occupational therapies or ongoing health interventions related to specic
biological systems of the body, such as the digestive and pulmonary systems. e general pattern of EI is focused
on individual pathology, with the added pathologizing of families in a system that automatically links Indigenous
women with child protection. Institutional interaction begins with prenatal care, but this creates opportunities for
surveillance by social service agencies, which targets Indigenous women. Culture and family support are rarely
a signicant part of the EI system. While family relations are central to Indigenous child-rearing practices, they
are also central to intervention in families where drug and alcohol addiction are present. Also, intervention at
the socio-political level is necessary in order to ameliorate the conditions that are the cause of some childhood
disability.
Assessment and diagnosis. A number of articles address the diculty of assessing Indigenous children (Halle, et
al. 2011; Niles et al., 2007; Ukrainetz et al., 2000) due to cultural translation (Chartonas & Bose, 2015), diering
perspectives regarding the trajectory of development (Peltier, 2010), and limited interaction with diagnostic
professionals in some regions (Aakhus & Hoover, 1998). Culturally appropriate adaptations of developmental
screening tools are largely regarded as a strategy to mitigate cultural conicts in early childhood assessment and
the disproportionate representation of Indigenous children in special education and child welfare (D’Aprano,
Carapetis, & Andrews, 2011; D’Aprano et al., 2016; Morrier & Gallagher, 2011). Simmons, Novins, and Allen (2004)
specically speak to community-established assessment measures as a model for Indigenous self-determination in
the denition of early childhood disability and provision of intervention services.
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Social determinants aecting disability. e literature identies several social conditions that may aect
Indigenous families’ interactions with disability and early years services. Overwhelmingly the literature focuses
on poverty (Chambers & Burnett, 2017; Skiba et al., 2005), but to a lesser extent it also discusses racism (Block,
Balcazar, & Keys 2001), education levels (Nichols & Keltner, 2005), mental health (Kalyanpur, 1998), and social
capital (DiGiacomo et al., 2013). e experience of early childhood disability is not only about the child, but also the
family and community. e social context in which a child lives has considerable implications for understanding
the impact of disability and the necessity for the right type of intervention.
Discussion
Across the three data sources, culture and language is at the centre of Indigenous understanding. Indigenous
cultures are varied and rich, but as a result of long-term colonialism, there is inequitable access to cultural-linguistic
resources. All of these data sources describe preservation of culture and language as central to children’s resilience.
In disability studies, resilience has also been described as a sociocultural phenomenon rather than an individual
characteristic (Curran & Runswick-Cole, 2013).
Self-determination: Indigenous services
Indigenous communities have been demanding self-determination in all aspects of their lives since the time of the
rst treaties with European and Canadian governments. e literature review showed a focus on the underlying
causes of childhood disability in Indigenous communities, with particular attention to prenatal drug and alcohol
exposure and environmental toxins in communities as causes of childhood impairment. e Elders and community
members raised very sensitive questions about how Indigenous people are pathologized, and expressed that many
Indigenous people have experienced discrimination because of poor understanding in mainstream society about
how addiction and environmental toxins are in fact symptoms of colonialism. Our knowledge synthesis suggests
that EI and early childhood education, care, and family support initiatives are a critical spot for considering the
intersection of childhood disability and Indigenous lives in a respectful way.
Knowledge sharing
While self-determination is consistent with our most prevalent nding that Indigenous culture and language must
be the starting point for any discussion of disability in Indigenous childhoods, we also know that families living in
rural and remote communities in particular have a dicult time accessing disability services. We also know that
even where services are available, they are not accessible when they are not culturally appropriate and put children
and families at risk. Across the three data sources, we found that the organization of services is central to the valuing
of Indigenous cultures, but also in the degree to which children with disabilities are accessing early childhood
education, care, intervention, and family support. In the larger IECSS study, we have found that many policies
that govern general early childhood services make vague references to “inclusion” without explicitly planning for
institutions to actually engage in this practice (IECSS Project, 2016a, 2016b). In the sharing of knowledge, it is
important not to see Indigenous communities as the recipients of research expertise on disability (as is the case in
some of the literature), but as a model of inclusion.
Conclusion
is knowledge synthesis specically examines the institutional interactions that families have in the early years.
While the knowledge synthesis project and the analysis were conducted by a mixed team of Indigenous and settler
researchers, any messages or recommendations should only be implemented in response to the local knowledge of
OCTOBER 2019 30 Vol. 44 No. 4
JOURNAL OF CHILDHOOD STUDIES ARTICLES FROM RESEARCH
specic communities and children. e following key messages were identied through the knowledge synthesis:
1. Indigenous cultural understanding values dierences in child development and recognizes children
as gis. Dierences in children are part of the gis that they hold and that make them gis to their
community. Indigenous culture is at the centre of a worldview that values Indigenous childhood and
family experience.
2. Social policy that takes Indigenous experiences of childhood disability into account must include
Indigenous early childhood education, care, and intervention programs. In order to improve access
and inclusion in early childhood education, care, family support, and intervention services, there
needs to be better funding for and understanding of Indigenous-specic experiences of childhood
disability in both mainstream and Indigenous services.
3. Recognition of the role that institutions play in dening disability as they seek to support optimal
development can help to identify theories of disability that are inherent in childhood disability
processes and the cultural implications of these processes.
Ongoing research on specic disability experiences should integrate clinical studies with cultural knowledge
of Indigenous-specic experiences of childhood disability. While some literature discusses specic childhood
disabilities in Indigenous communities, this literature is largely focused on prenatal and environmental causes
of disability, with little research on the construct of disability in Indigenous communities and the construct of
Indigenous childhoods in mainstream early childhood education, care, family support, and intervention services.
Acknowledgements
is research was supported by the Social Sciences and Humanities Research Council of Canada Knowledge
Synthesis grant #872-2016-0005.
OCTOBER 2019 31 Vol. 44 No. 4
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