Reframing Disability

In the previous section, we highlighted how disability has been constructed in the United States as a deficit, thus positioning anyone with a disability as inferior, and how it has been used to further marginalize and oppress certain groups of people. Next, we present different models of disability and important perspectives and concepts to consider when working to reframe disability to better shape our collaboration with families.

Models of Disability

Conceptual models are representations, often abstract, of something such as a physical object or social phenomena. They are meant to aid in understanding social phenomena. Above, disability is explained as a social construct. So, models of disability then would be abstract representations meant to aid in understanding disability as a social phenomena. Each model represents a different understanding of disability. There are an ever-growing number of models of disability. However, here we will focus on two opposing and common models in hopes of illustrating the different approaches to disability and how the approaches shape practice. “The medical model and social models of disability… are two ways of understanding disability within traditions dominant in Western science and philosophy. At the center of the divide between these models lies the contested concept of normalcy.” (Baglieri and Lalvani, 2020)

The Social Model vs. The Medical Model of Disability

The medical model of disability approaches disability as an inherently individual problem or deficit within someone. Because of this view, disability is something that should be thus identified or diagnosed and then treated accordingly, with the goal of either overcoming or mitigating the “symptoms” or impacts of the disability for the person and for society.

The social model of disability distinguishes disability from impairment. Impairment is a difference (mental, physical, etc.) within an individual, and disability is a societal problem or barrier due to inaccessible environments and structures. Taking this approach, barriers in the environment and social structures and systems should be identified and altered or removed in order to address disability and increase access for all.

According to Baglieri and Lalvani (2020), the center of the debate between these two opposing models of disability is the concept of normalcy. In the medical model of disability, disability is positioned as inferior to some other marker which in this case is normalcy. The medical model assumes a neutral normal and then positions disability as a deficit in relation to that. The social model rethinks what normal is and views disability as diversity, as part of the natural variance in human existence. The medical model of disability is the traditional view of disability, and the dominant approach in US systems and structures. In order to qualify for disability services whether that is inside or outside of the US public school system, individuals must be diagnosed or labeled, which then prompts a determination of qualifications and services. To rethink disability through the social model then goes against much of what parents have been taught and socialized to accept.

Reframing disability as diversity, in the social model of disability, works to push against the view and the systems which have marginalized and oppressed not only people with disabilities, but other minority groups as well. To come from the social model of disability means to recognize that the problem of disability is the societal and environmental barriers that are in place that limit individuals with disabilities and their families. In the next section, we will look at different phenomena that are important to examine when reframing disability in our approach to collaborating with families with children with disabilities.

Parental Involvement

Differing levels of parental involvement are required for navigating disability support services whether in school or out. For example, the Individuals with Disabilities Act (IDEA) requires parental/guardian consent and involvement. (Rosetti et al., 2017). Family involvement and advocacy can mean all the difference for a child’s trajectory within the special education/general education system (Fish, 2010). We will use the special education system within public K-12 schools to illustrate barriers families may come up against when navigating systems designed for individuals with disabilities. However, these barriers will apply in almost any context. When examining disability and the experiences of children with disabilities and their families within the K-12 public education system through a social model lens, we see numerous potential barriers.

Navigating and advocating within the K-12 system, first and foremost, requires knowledge of the system.  It requires knowledge of the laws that govern the system children are being served by, the ways in which different labels come with different likely trajectories for students both inside and outside of the K-12 system, the people to get involved in any given situation, and the ways in which to communicate to increase the likelihood of a favorable outcome for their child. For example, going back to the notion of over-representation, not only in special education but in certain labels that will more likely lead to segregation, the knowledge of this phenomena and how to push back, may fall under the category of cultural capital.

Another potential barrier that impacts the ability of families to collaborate is the time commitment for their jobs. Students served under the IDEA all have an Individualized Education Plan (IEP) which requires family involvement. However, IEP meetings are often held either during the school day or right before or after school. It is a privilege to have a job and/or life structure  that is either flexible enough to work around any meeting time or that offers enough time-off to be able to take some for the numerous meetings families are invited to or required to attend for their children. Families who don’t have this flexibility or ability are then either left out of important decision-making or are forced to make difficult decisions that may impact their ability to keep up with the commitments that allow them to support their family.

Biased Assessments

Assessments are often used to categorize, label, and place students in terms of special education. Dudley-Marling and Gurn (2010) explain that one of the most powerful tools of modern society is the concept of normality and go on to describe the Bell curve or normal curve as something that has been used to legitimize it. “In the context of schooling, the ideology of the normal curve affects school placement, grading, college admission, educational policy and research, and the everyday language of teachers.” (Dudley-Marling & Gurn, 2010, p. 2) They go on to explain that measuring students up against this concept of normality impacts many facets of education for individual students (2010).

The ideology of the normal curve does harm to individuals with disabilities and their families. But it isn’t just individuals who are at risk of being marginalized and pathologized by the concept of “normal.” Normal curve thinking has been used to rationalize the marginalization of whole groups of people, perpetuating historic injustices. (Dudley-Marling & Gurn, 2010, pp. 5-6)

Assessments are designed to implement this idea of the bell-shaped or “normal curve,” but as Dudle-Marling and Gurn (2010) describe, the curve is designed in such a way that it promotes white superiority and thus works to marginalize minority groups. So assessments created largely by and for white people are then what is being used to decide what students do and do not qualify for, what labels they receive, and what options are available to them within and beyond K-12.

Language Debate

Another important point of consideration when reframing disability is language. A debate in the disability community is whether to use person-first or identity-first language. In an effort to recognize and center the human before the label, person-first language has long been promoted throughout the disability field as best practice. For example, person-first language would dictate best practice would be using phrases such as a person with a disability, or a student who has autism. More recently, there has been push back by the disability community, who want to claim disability as an identity and thus prefer to be referred to in identity-first language. So, rather than be called  a student with autism, some prefer to be referred to as an autistic student. It is the difference between saying “I have autism” and “I am autistic.” In saying “I have autism,” the person is saying that autism is something they have but not necessarily who they are. In saying, “I am autistic,” the person is claiming autistic as an identity that describes who they are.

Table 5.1: Person and Identity First Language