Managing the Problem of Dyslexia: A Review of the Ontario Human Rights Commission Report of The Right to Read Inquiry

Prise en charge du problème de la dyslexie : examen du rapport d’enquête de la Commission ontarienne des droits de la personne sur le droit de lire

Christine Caughill
EdD Student, Social Justice Education Department, OISE

christine [dot] caughill [at] mail [dot] utoronto [dot] ca

Abstract

In January 2022 the Ontario Human Rights Commission (OHRC) published the Report of The Right to Read Inquiry (Right to Read) which summarised the findings of a public inquiry into human rights related to reading disabilities and reading instruction in Ontario’s public education system. A public inquiry centred on the human rights of disabled people would appear to be a victory for inclusion and disability rights. From a disability studies approach, the Right to Read report represents the dominant perspective of disability, rooted in biological determinism and the medical model of disability (Goodley, 2001). Right to Read illustrates how the perception of disability as a problem to be solved is so firmly entrenched that it goes unnoticed and unquestioned. For this reason, the report provides an opportunity to examine how disability matters, and what disability means.

Résumé

En janvier 2022, la Commission ontarienne des droits de la personne (CODP) a publié le rapport d’enquête sur le droit de lire (Le droit de lire) qui résumait les conclusions d’une enquête publique sur les droits de la personne liés aux troubles de lecture et à l’enseignement de la lecture dans le système d’éducation publique de l’Ontario. Une enquête publique centrée sur les droits des personnes handicapées apparaitrait comme une victoire pour l’inclusion et les droits des personnes handicapées. Du point de vue des études sur le handicap, le rapport Le droit de lire traduit la perspective dominante du handicap, enracinée dans le déterminisme biologique et le modèle médical du handicap (Goodley, 2001). Le droit de lire présente à quel point la perception du handicap comme problème à résoudre est si fermement ancrée qu’elle passe inaperçue et incontestée. Pour cette raison, le rapport offre l’occasion d’examiner l’importance du handicap et sa signification.

Keywords: dyslexia, reading disability, science of reading, disability studies


Mots clés : Dyslexie, troubles de la lecture, science de la lecture, études sur le handicap



Introduction

In January 2022, the Ontario Human Rights Commission (OHRC) published the Report of The Right to Read Inquiry (Right to Read), which presented the findings of a public inquiry into human rights related to reading disabilities and reading instruction in Ontario’s public education system. The impetus for the inquiry came from increased attention in public discourse and educational policy on reading and dyslexia as part of the broader science of reading (SOR) movement (Worthy, et al., 2021, Cummins, 2022). The influence of SOR has been substantial, leading to legislation mandating instruction in phonics and phonemic awareness in the United States, Australia and the United Kingdom (Worthy, et al., 2021), and positioning SOR as the definitive authority on reading (Gabriel, 2020). In Ontario, Right to Read recommendations have been incorporated into a new Ontario Language Curriculum and led to the introduction of mandatory reading screening for students in Year 2 Kindergarten to Grade 2. According to the report, these changes are necessary because “Ontario is not fulfilling its obligations to meet students’ right to read. . .and is systematically failing students with reading disabilities and many other students.” (Ontario Human Rights Commission, 2022, p. 2). What has gone largely unnoticed and unquestioned during the rise of the SOR movement, of which Right to Read is a manifestation, is the narrative it tells of disability. Central to SOR is the construction of an ideal human to which all students are compared, thereby problematizing and dehumanizing students who do not measure up to this ideal (Beneke et al., 2022, Titchkosky, 2015).

Disability as More than a Problem to be Solved

A public inquiry centred on the human rights of disabled people would appear to be a victory for inclusion and disability rights. From a disability studies approach, Right to Read represents the dominant perspective of disability, rooted in biological determinism and the medical model of disability (Goodley, 2001). The inquiry report provides an opportunity to examine how disability matters and consider a more expansive understanding of what disability means. As Michalko (2022) outlines, drawing on the thinking of Judith Butler, “What matters most of all is that disability matters. This is what brings disability into appearance; this is what materializes it; this is what attributes meaning to disability.” (p. 32). How this materialization and appearance of disability is fashioned influences the way disability is acted upon, treated, and experienced (Michalko, 2022). In Right to Read, the story of disability is told as a problem to be solved, and this story goes unnoticed and unquestioned. Asking critical questions about the recommendations of Right to Read provides an entry point to consider “what disability reveals about human selves, subjectivities, social worlds, and our relationships with others.” (Goodley, 2020, drawing on the thinking of Titchkosky, p. 41).

To examine the story that Right to Read and SOR tells about disability, I will consider the meaning of reading, reading disability and dyslexia as outlined in Right to Read and the larger SOR movement. From there, I will draw on the thinking of Sylvia Wynter and Hunter Knight to consider how the dominant perspective of disability dehumanizes disabled students. Finally, I will look to Kawano’s discussion of dyslexia in Japan as a place to make space for more expansive meanings of disability.

What does “reading” mean in Right to Read?

The Right to Read report opens by laying out its essential components of reading. In this definition “word-reading and spelling are a foundation for being able to read and write and successfully interact with different forms of communication. Everyone wants and needs to be able to read words to function in school and life.” (Ontario Human Rights Commission, 2022, p. 4). Use of the word everyone in this excerpt raises questions about the humanity of those who do not access text via print, do not use alphabetic literacy or communicate in normative means. The main authors of the report, who come from the field of special education (Ontario Human Rights Commission, 2022), presuppose that all humans want to read and write in a very particular way. They do not consider reading and writing as phenomena that have been socially constructed and developed since European colonialism, capitalism, industrialization, and the creation of compulsory schooling (Goodley, 2001, Joldersma, 2018, Smeyers, 2013). For SOR and Right to Read, the story of reading begins and ends with English (or French) alphabetic print. The complexity of literacy and reading is narrowed to one essential element: the decoding of print. To be a reader, one must use sight to recognize and translate sounds that have been transcribed into printed words on a page. Accessing written text using sight is the defining element of reading. Right to Read is silent on the possibility of reading as something that could occur through oral or visual storytelling, listening, via a screen reader, or any broader conceptions of text beyond the medium of print. For Right to Read, possessing the decoding skills to connect letters on a page to sounds of oral language is the necessary condition of reading. Although the report acknowledges that being literate means more than decoding of alphabetic print, the process of understanding the words that are read and the sentences that contain them are described as the essential elements for reading comprehension (Ontario Human Rights Commission, 2022). This definition of reading does the work of setting up the norms of what it means to be a reader.

Conceptions of Disability and Dyslexia in Right to Read Report

Once the definition of reading is established, Right to Read turns its attention to labelling students who do not possess these foundational skills as nonreaders. Those who do not “read'' are framed as a problem to be solved. At the heart of this problem is difficulty with word-level reading. According to the report, “word-level reading difficulties are the most common challenge for students who struggle to learn to read well. Most students who have issues with reading comprehension have word-level reading difficulties.” (Ontario Human Rights Commission, 2022, p. 4). Following this thinking, reading is decoding, and by extension, reading problems are decoding problems. At this point, a label is put forward to describe these problem “nonreading” students. In the report, the term dyslexia is used. While mention is made of reading disability, the report suggests that dyslexia is currently the preferred label:

This report uses both the terms reading disability and dyslexia. Currently, the Ontario education system only uses the term learning disability. . .The term “dyslexia” is also not used in the Ontario education system. However, the American Psychological Association’s Diagnostic or Statistical Manual of Mental Disorders (DSM-5) recognizes dyslexia as an appropriate term for referring to a pattern of learning difficulties characterized by problems with accurate or fluent word recognition, poor decoding, and poor spelling abilities. (Ontario Human Rights Commission, 2022, p. 7)

Dyslexia is highlighted as the preferred label, and is defined in relation to problems with word-level reading and spelling. The framing of these labels and the students they are placed on highlights how the medical model of disability underpins the report. Dyslexia is a settled and categorical concept, a fixed, authoritative entity, ignoring the contested nature of dyslexia (Elliott, J., & Grigorenko, E. L., 2014, Gabriel, 2018) and presuming a reductionist conception of dyslexia derived from psychologists, special educators, neuroscientists, and the International Dyslexia Association (Ontario Human Rights Commission, 2022). Right to Read’s definition is one in which dyslexia is an individual, biologically-based deficit that has been thoroughly explained through science, and the International Dyslexia Association (IDA) is framed as the trusted source of dyslexia information (Gabriel, 2018). This elides any concept of dyslexia as a complex socially-constructed phenomenon. Perspectives on dyslexia that resist simple biological explanations do not exist in Right to Read. The only authority required to define dyslexia is that of science, in particular clinicians, whose expertise goes unquestioned in part because of what Smeyers (2016) describes as the “seductive allure” (p. 41) of neuroscience and a positivist, reductionist, empiricism which values meta-analyses and randomised controlled studies as the only legitimate form of knowledge about reading (Smeyers, 2016) and reading disability. What goes unquestioned at the heart of this perspective is the pathologization of some brains as abnormal (Joldersma, 2016) to which the label of dyslexia is applied.

Guidance for determining the validity of the appropriate label, and who receives this label, is provided by the medical community, in this case, the American Psychological Association. The report states:

Dyslexia is well researched and understood, and there are many helpful dyslexia resources. Some also prefer the term “dyslexia” as it indicates a learning difference, and are concerned about the socially-constructed stigma that may be associated with a “disability” label. Under the Code, people’s preferred self-identification should be respected and recognized. . .Although dyslexia is assumed to be neurobiological in origin, there is evidence that with evidence-based reading instruction, early identification, and early evidence-based reading intervention, at-risk students will not develop a “disability”. If the education system is working as it should, a reading disability can be prevented for almost all students. (Ontario Human Rights Commission, 2022, p. 8)

This excerpt gets to the heart of how disability appears and is understood in Right to Read. In the report, disability has its origins in biology. It is a result of a body that is not acting as it should, and is something to be eliminated or managed. Following this thinking, disabled students must be cured and released of the burden of disability. Preventing disability is the marker of success for the education system. This perspective sees disability as something to be avoided, solved or managed, and the role of education is to eradicate disability.

Dyslexia and Disability in the Medical Model

In writing about dyslexia in Japan, Kawano (2022) discussed how medical science acts as the dominant authority on disability, and the role that education plays in managing dyslexia:

Dyslexia was discussed as a deficit from a medical perspective. Dyslexia was likewise regarded as an issue that must be urgently managed in classrooms. Discussions were held on the possibility of building a school for Japanese children with dyslexia, and this included the sharing of reports on some American schools that provide intensive support. Dyslexia thus sometimes appeared as a school issue to problematize the Japanese education system and classroom environments that fail to adequately educate children with dyslexia." (p. 111)

The way in which Kawano describes the appearance of dyslexia as a biomedical problem that must be managed through schooling is similar to Right to Read’s definition of dyslexia as a neurological condition that should be cured through intervention at school. Without intervention and remediation, Right to Read describes the possible outcomes in this way:

Students with reading disabilities often underachieve academically. They are more likely to drop out of school, less likely to go on to post-secondary education, and tend to take longer to finish programs they enroll in. The effects can continue past their schooling and can have a negative impact on employment, and lead to lower incomes, poverty and homelessness and higher rates of involvement in crime and incarceration. Adults with dyslexia told the inquiry about long-term effects of not learning to read, such as mental health and substance abuse issues and negative impacts on their employment. . .Investment in early reading significantly reduces the social and economic costs of low literacy to the individual, their family and society as whole. (Ontario Human Rights Commission, p. 11)

According to the Report, without intervention based on early reading instruction in decoding and encoding of print, disabled students are a burden to society as a result of “low” literacy. Individuals who struggle with word-reading are a problem to be managed and solved. The complex phenomena of dyslexia and disability are reduced to biological deficits that reside in the individual. The consequences of failure to cure these deficits are framed in relation to productivity, economic output and criminality, as if dyslexia and disability can only be defined as something to be avoided at all cost.

Managing Disability: Sylvia Wynter’s Conception of “Man”

To help illusrate the dehumanizing effects of the dominant narratives of disability in Right to Read, I will draw on the work of Hunter Knight in relation to Sylvia Wynter’s concept of Man as the universal human. According to Knight, Sylvia Wynter’s (2003) conception of Man where “our present ethnoclass (i.e., Western bourgeois) conception of the human, Man, which overrepresents itself as if it were the human itself” (p. 129) creates a binary in which those who do not measure up to the standards of the universal Man are placed in the category of nonhuman. Knight (2019) highlights how:

The overrepresentation of Man as the only “descriptive statement” of what it means to be human, then, shapes ways of knowing as logical and universal and in doing so structures how we think about life, death and the world. These epistemologies of Man that Wynter traces are critical to how we frame the purposes and methods of schooling in that they illustrate how educational thinking is structured by understandings of what it means to be human. (p. 91)

For Knight, Wynter’s idea of universal Man has significant implications for what counts as normal at school. When white, able-bodied, upper-class students are overrepresented as the universal norm, education designed for these students is also considered universal, and those who do not fit into these universalized categories are less than human (Knight, 2019). In this way, the standards of normalcy dehumanize disabled students, and intervention that seeks to end disability is framed as the goal of education.

Connecting Right to Read and the Literacy Myth

The narrative of disability and literacy outlined in Right to Read can also be considered through Harvey Graff’s (2017) theory of the “literacy myth” (p. 39). According to Graff (2017), the literacy myth occurs when “literacy is represented as an unqualified good, a marker of progress, and a metaphorical light making clear the pathway to progress and happiness. In contrast, the opposing value of “illiteracy,” is associated with ignorance, incompetence, and darkness. (p. 39). This view of literacy is often combined with what Graff (2017) describes as discourse centred on a sense of general decline in literacy at a societal level, and calls for a return to the “basics” of education:

If literacy has declined, it is because schools have strayed from teaching the fundamentals of reading, arithmetic, and other subjects defined, indistinctly, as ‘the basics’ . . .The myth of decline, then, is an expression of an ideology in which a particular form of literacy is seen to represent a world that is at once stable, ordered, and free of dramatic social change. (Graff, 2017, pp. 39-40)

This yearning for a stable world of the past, could be extended to include a world without the instability and disorder of disability. By extension, this world could also be that of Wynter’s universal “Man”, in which those who do not possess the narrow set of skills that are defined as literacy are then deemed to be less than human.

Enacting the Literacy Myth: Solving the Problem of Disability

In the Right to Read report, reading and writing using alphabetic systems are taken for granted as an absolute good. Perspectives on reading as something more than decoding print are dismissed as unscientific (OHRC, 2022). Interventions to solve the problem of dyslexia, and therefore erase disability, are positioned as the solution to widespread systemic inequity caused by racism, colonialism, and other forms of oppression. “The OHRC’s position is that making sure all children are taught the necessary skills to read words fluently and accurately furthers and does not detract from equity, anti-racism and anti-oppression.” (Ontario Human RIghts Commission, 2022, p. 5). SOR and Right to Read argue that solving the problem of disability and disabled students, will also lead to more equitable education for every student. In making this claim, the Right to Read report is enacting the ideology of the literacy myth, and Wynter’s idea of the overrepresentation of Man, and its knowledge systems as universal. In this way, the Right to Read report has at its heart a troubling conception of disability, one that is based on the elimination of disability as the solution to the problems of societal inequality.

Making Space for Disability as More

How then can disability studies shed light on how educators can move beyond the dehumanizing, pathologizing perspective at the heart of Right to Read? How might educators imagine humanity beyond the overrepresentation of able-bodied, Western Man as the universal human? Surely there must be more to disability than a problem to be solved or something to be demonised, feared and remediated? To consider a future in which disability matters beyond a problem to be solved, and the overrepresentation of Western systems of knowledge, Kawano’s account of dyslexia in Japan offers a place of possibility. In her description of a dyslexia event in Japan, she describes the biologically-based deficit framing of dyslexia, but also makes space for other meanings. She does this by providing a powerful example of what Hartblay (2020) calls an approach that centres disability expertise:

This approach relies on renouncing an individualizing, pathologizing, medical notion of disability—disability as an undesirable individual characteristic—in favor of a relational concept of disability as a category enacted in social relations. . .disability expertise is the particular knowledge that disabled people develop about unorthodox configurations of agency, cultural norms, and relationships between selves, bodyminds, and the designed world. It is an acquired virtuosity in negotiating the meaning that emerges when disability appears in social relations. (p. S33-S34)

Kawano’s account of the Asia-Pacific Dyslexia Festival outlined how participants expressed themselves in ways that highlighted their expertise outside of reading and writing. While the event included messaging that centred the dominant perspective of dyslexia and disability, "participants with dyslexia went further and associated dyslexia with a preference for an alternative mode of creation, one that brings to the fore their agency, ingenuity, and productivity." (Kawano, p. 112). In highlighting the agency, creativity, and expertise of the disabled subject, Kawano provides an example of what is missing from Right to Read report. Kawano (2022) observes that while:

dyslexia did not appear with terms such as disability rights and social justice during the Dyslexia Festival, what may seem to be a politically neutral account of personal challenges and dreams reveals a critical commentary on reading and writing as dominant methods of valued creation in contemporary Japan. (Kawano, p. 113)

In contrast, a critical examination of reading beyond the dominant perspective of science is absent in Right to Read. Instead those who do not fit into Right to Read’s narrow category of what it means to be a reader are considered solely in relation to what they lack.

Conclusion

Kawano points to how we might create space to ask critical questions about how disability matters and provide opportunities to move beyond the dominant conception of disability and literacy as something to be managed. In this space, disability appears as expression of humanness, or as Goodley (2020) writes:

Disability acts as a mirror to humanness: to reflect back interdependence and mutuality as necessary human characteristics that sadly often get lost in a contemporary society that attaches far too much significance to individual achievement, isolated self-sufficiency, and economic gain. Disability frames human vulnerability and in so doing reaffirms, what it means to be human. (p. 46)

Through my examination of the Right to Read report I have attempted to question the dominant narrative about dyslexia and disability, and begin a discussion that makes space for alternate meanings. My hope is that this can provide an opening to question the power of science and medicine as the definitive perspectives on dyslexia and disability.

References