With the pretext of the biased views expressed in the media regarding the role of parents of children with disabilities in their education, as well as the whispers that have been circulating for years, I feel it necessary to share some of my opinions, which are supported by the literature. Initially, the notion that “parents of children with disabilities do not accept their child’s disability” arises from a faction of professionals who believe that the interests of children with disabilities are not aligned with those advocated by their parents. This position is also connected to another one, that “professionals in the field of public education should have the right to evaluate children they believe have a disability, without the consent of their parents.” The aforementioned positions demonstrate that individuals and organized groups expressing them verbally or in writing have no clue about the rights of children with disabilities and the role of their families in education. In this manner, they construct the concepts of “good parent,” “good professional practice,” and “well-adjusted child” (Goodley, 2014), where a “good parent” is one who “accepts” their child’s disability and consents to their evaluation, “good professional practice” involves the evaluation, and a “well-adjusted child” is one who is evaluated and receives special education without the consent of their parents.
Initially, when we refer to parents of children with disabilities, we should bear in mind that they are a heterogeneous group of individuals with different identities (e.g., gender, ethnicity, mother tongue, religion, disability, etc.), roles (e.g., parent, single parent, spouse, partner, son/daughter, caregiver), and beliefs. We cannot express generalized judgments about this group so easily. The parents of all children may strive for their children’s well-being, or they may be parents who mistreat them. They may be parents who meticulously explore every detail of legislation and pedagogy to decide what is best for their child, or they may be parents who are not interested or lack the skills to search and expect others to guide them. At the same time, we must keep in mind that raising a child with a disability is the same as raising a child without a disability, but it is also different. The experience of parents of children with disabilities differs from that of parents of children without disabilities, as they are confronted with a system of policies and practices, as well as a culture that excludes instead of including, erects barriers instead of removing them, and considers that school is for some children and not for all (Karagianni & Koutsoklenis, 2023; Symeonidou & Mavrou, 2020; Vlachou & Fyssa, 2016).
In any case, when we refer to parents, we should consider how their identities and roles are linked to their beliefs about their child’s education. For example, if we are discussing with a mother who is a victim of domestic violence, she may understand that her child needs assessment, but if she mentions it to her spouse, she may only trigger a new cycle of violence. In another scenario, if parents have consulted with many professionals (special education teachers, psychologists, doctors, etc.) before the school suggests the need for an assessment, they may disagree for reasons they consider important (e.g., they want to avoid labeling their child, withdrawing from the class for support through special education, etc.) and prefer to support it themselves. There is also the case where assessment may be suggested at the wrong time (e.g., in kindergarten, a child does not sit in his chair for half an hour and therefore assessment is suggested to the parents) and in the wrong way (e.g., threat/warning that if the child is not assessed, they will not receive the support they need). Parents are faced with the “dilemma of difference,” according to which if the “difference” is “officially recognized,” then their child may benefit to some extent (perhaps with reasonable adjustments), but they will be stigmatized, whereas if the “difference” is not “officially recognized,” their child may not fully benefit academically but will not be stigmatized (Graham et al., 2020).
Secondly, parents of children with disabilities have all the rights that parents have. Therefore, it is imperative that they give their consent for anything concerning their child, from whether they will be photographed at school to whether they will be evaluated by a team of specialists. Especially regarding the issue of assessment, the current legislation on inclusion, despite its distortions, has ensured that parents give their consent for the assessment process to begin, are informed in advance about when their child will be evaluated, and have the right to attend evaluation meetings and provide information during the assessment process. This is necessary because parents live with the child, so they have a view of their behaviors at home and in other contexts, as well as their knowledge and skills. Thus, their presence during the assessment ensures that they can explain how the child responds, understand which aspects of their behavior are different outside of assessment conditions, and gives the child a sense of security in a process that requires collaboration with professionals they may not always know beforehand.
Instead of making nihilistic judgments that negatively characterize parents and suggesting evaluations without parental consent, if we truly want to support the children, the requests should be as follows:
- Reduction of the number of children in the classroom
- Co-teaching by two educators (general and special or two general educators)
- Modification of the curricula to allow for differentiated teaching and assessment
- Mandatory differentiation of teaching in the general classroom
- Institutionalization of procedures that comprehensively support children and their families (at home, at school, in therapies they may need)
All of the above require a change in the roles of general and special educators, their training, redistribution of financial resources, and the way services are provided, as well as long-term strategic planning for change.
Concluding, parents of children with disabilities have the same chances as parents of children without disabilities to know their child very well because they live with them every day, or not to observe their child as much as they should. Also, parents of children with disabilities choose how they will handle the educational system and its representatives, depending on their knowledge and experiences. If after evaluation, the educational system proposes a support package (i.e., special education outside the classroom), parents may choose not to proceed with evaluation. Even if they give their consent for evaluation, they may later demand quality education without segregation and full access to the detailed curriculum, but they may still be considered unreasonable because some believe they have not accepted their child.
It’s a vicious cycle that will only cease to exist if we consider that children with disabilities should be supported in school in the best possible way, just like their families.
References
Goodley, D. (2014). Dis/ability studies. Theorising disablism and ableism. London: Routledge.
Graham, L., Medhurst, M., Tancredi, H., Spandagou, I. & Walton, E. (2020). Fundamental concepts of inclusive education. In L. Graham (Ed.). Inclusive education for the 21st century (27-54). London: Routledge.
Ryan, S., & Runswick-Cole, K. (2008). Repositioning mothers: Mothers, disabled children and disability studies. Disability and Society, 23(3), 199–210.
Symeonidou. S. & Mavrou. K. (2020). Problematising disabling discourses on the assessment and placement of learners with disabilities: can interdependence inform an alternative narrative for inclusion?, European Journal of Special Needs Education, 35(1), 70-84.
Vlachou, A. & Fyssa, A. (2016). ‘Inclusion in Practice’: Programme Practices in Mainstream Preschool Classrooms and Associations with Context and Teacher Characteristics. International Journal of Disability, Development and Education, 63(5), 529-544.
University of Cyprus
