Disrupting the Dyslexia Norm

By Deborah Lynam

Emerging as important rally cries from our robust dyslexia advocacy community, campaigns such as #saydyslexia and #untileveryonecanread focus on disrupting the norm in U.S. schools. They serve to shine a light on the all too often unquestioned “normal” within the classroom. In demanding that schools acknowledge and support students with dyslexia, these calls to action seek to dismantle the status quo. The norm in many educational settings is to focus on the limitations of students with dyslexia while failing to cultivate their strengths or to provide the necessary support for early identification, interventions, and accommodations. They also call for a critical evaluation of popular instructional approaches that appear to work fine for a small percentage of children but are leaving many children with dyslexia to struggle. As advocates, we keep the spotlight on dyslexia. Our efforts ask for a re-norming of classroom instruction to include the literacy needs of reading-disabled students. Often, however, this advocacy is applied through another kind of normative lens—a universal identity of dyslexia. This norm is one that has been shaped by U.S. special education policy regulations and the experiences primarily of White, middle-to-upper class families like my own.

The Dyslexia Norm

Thinking more critically about how the “dyslexia” label itself becomes normalized, (i.e., the ways it is assigned to certain students experiencing reading difficulties yet denied to others) could strengthen our overall advocacy community and actually expand our collective ability to disrupt the norm. Representations of children with dyslexia in both popular culture and the education domain prove themselves to be complex sites of negotiation for both the children themselves and the adults and systems that share responsibilities for their intervention and care. There is a dynamic relationship between the real-life child experiencing difficulty learning to read and the conceptualization of dyslexia as an inherent or biologically based reading disability. This relationship deserves a more critical analysis as it is not as universal as our hashtag rallying calls would suggest. Advocacy efforts that push to pathologize dyslexia as solely a biological disability, as easily distinguishable from other factors that contribute to reading struggles, may actually be obscuring the many ways our current policy, research, and practice are creating artificial categories of difference that privilege some children and marginalize others. As advocates, we do understand the ways in which socioeconomic status, race, and linguistic background intersect in the lives of children experiencing reading difficulty, but these understandings aren’t always directly accounted for in our advocacy agendas, policy discussions, and translations to practice. This inconsistency or, at times, lack of consideration for the ways in which various sociodemographic factors differently impact children’s opportunities to learn to read, presents many challenges to our work in terms of literacy equity.

While strategic campaigns, such as #SayDyslexia, have helped to galvanize and mobilize an effective dyslexia movement, it is worth thinking more deeply about how a dyslexia norm carries some limitations in education policy and practice. For example, dyslexia may not offer a flexible or responsive enough umbrella across general and special education settings to support all children in need of reading support and intervention. Many claim dyslexia to mean the genetic underpinnings of a specific kind of reading difficulty, and this claim fits well within the framework of current U.S. special education policy. However, it is well established in the research literature that environmental and economic factors also play a large contributing role in achievement. Despite these ambiguities around the causes of reading difficulty, the category of specific learning disability (SLD) in the U.S. Individuals with Disabilities Education Act (IDEA) has essentially constructed a privileged category of reading difficulty. Knowing that IDEA goes on to state that learning problems primarily resulting from other factors, such as environmental, cultural, or economic disadvantage, do not qualify as specific learning disabilities should raise significant concern within our advocacy community.

Considering the Intersections

Dyslexia, under the category of SLD, has become a sorting mechanism tied to restrictive special education funding streams, state policies and protocols, and potentially biased professional judgment calls and/or IQ discrepancies. It’s highly problematic that federal special education policy establishes disability status for a select group of children with reading difficulties, affording this group a guarantee to a free appropriate public education (FAPE), while denying this same guarantee of appropriateness and procedural safeguards to other children with similar reading struggles. If we are committed to ideals like #untileveryonecanread, then we must ask tough questions about why the system is built in such a way that children from well-resourced, White, English-speaking families seem to more readily acquire the dyslexia diagnosis and these IDEA protections; while children from different racial, ethnic, or socioeconomic backgrounds are seeing their same reading difficulties reduced to sociodemographic variables deemed outside these same protections.

Since we know that reading difficulties result from a range of both genetic and environmental factors, we should be sure that our advocacy goals are comprehensive enough to account for these intersections between disability and other sociodemographic factors. Can we envision an inclusive advocacy platform that actively seeks to disrupt the idea of a universal dyslexia norm—one that doesn’t seek to stridently differentiate between students with dyslexia and other struggling readers? Can we frame, as central tenets of our dyslexia advocacy, calls for things like more critical interdisciplinary reading research, access to culturally and linguistically responsive assessment and diagnostic tools, teacher training aligned to both the science of reading and culturally responsive pedagogy, funding for bilingual programs, campaigns to recruit and retain more teachers of color, and FAPE guarantees that extend to general education initiatives, such as response-to-intervention and multi-tiered system of supports? This type of reflexivity could be an important component of our work moving forward—listening, learning, and thinking critically about these collective equity issues that may stretch and even disrupt our old ways of heralding literacy as a social justice issue for all.

Deborah Lynam is currently pursuing a graduate degree in Childhood Studies at Rutgers University-Camden. She serves on multiple boards focused on improving children’s literacy outcomes: the National Center on Improving Literacy’s Family Engagement Advisory Board, the International   Multisensory Structured Language Education Council’s Board of Directors, and the board of The Reading League NJ. She is also a founding parent member of Decoding Dyslexia-NJ.