Literature, Life-Writing, and Identity

Conceptualizing Disability

Within the last decade, a new academic field of study has emerged within the social sciences to reflect the need to speak to the issues surrounding disabled persons as persons with similar concerns as other marginalized groups.  This field, called Disability Studies, seeks to explore the nature, meaning, and consequences of disability as a social construct. This is in contrast to a medical view of disability which seeks to treat and cure the condition.  Disability Studies serves to continue to broaden access and civil rights to those differently-abled individuals. Sensitizing my students to a range of physical and mental individual differences and the stereotypes experienced by these persons can serve as a bridge towards a greater awareness of the human condition. As Tobin Siebers, in his article from Disability in Theory, stated:

“They do not want to feel dominated by people on whom they depend for help, and want to be able to imagine themselves in the world without feeling ashamed.” (Siebers 2001)

There are four key overarching goals regarding identity this curricular unit will achieve informed by current understandings of persons with disabilities:

1. Bring awareness to the kinds of attitudes and perceptions which marginalize disabled individuals.
2. Show students how to support and interact with students experiencing a physical disability or neurodiversity, such as those on the autism spectrum.
3. Embrace classroom inclusion as a model of social justice.
4. Recognize that disability is a significant human experience that occurs in every society, family, and most every life.

Attitudes and Perceptions

Step into any elementary school across America, and you will notice signs, posters, and policies hanging against bullying.  Children receive lessons, participate in assemblies, counselling services, and more in an effort to combat the demoralizing effects of bullying.  Central to that topic is the notion of “sameness” or someone being threatened or excluded due to their looks, speech, or other behaviors which reside outside of the collective norms.  In teaching about the topic of personal and collective identity, we can move to an inclusive model that moves deeper into our understanding on the treatment and respect for differences.

Anyone in a position of power, as in a student/teacher relationship, must be able to understand the student’s particular situation in light of that student’s self-identity vs. an expected societal one.  Exposing my students to consider communications and reactions due to social constructs and various views of “the norm” helps strengthen their self-awareness when interacting with the world-at-large.  Hilde Lindemann Nelson, in her book Damaged Identities, Narrative Repair, argues that a person’s identity acts as a lever to either deny or allow a set of choices among our society’s moral expectations.²  Our current national leadership in government is enacting legislation with little regard and respect for any special needs students might bring to the classroom. Not only are marginalized groups being damaged by policy changes, they face a barrage of verbal abuse through statements and judgments broadcast almost daily via social media. The American cultural climate is such that these positions are working to further marginalize groups to seek solace within themselves.  If we cannot look to our leadership to model respect for differences, where can we turn? In this way, identity and the connection to agency become muddied when an authority group in an abusive power system propagates morally degrading identities.

Lindemann Nelson also offers a source of healing for damaged identities in what she considers as “narrative repair”. As humanities teachers, we have the special opportunity to bring text, image, and media to our students to help repair and prevent damage to identity.  Lindemann Nelson brings to light the concept of Counterstory:  sharing narratives which are counter to harmful ones serves to change the perceptions and attitudes which prevail in harmful ways. A similar concept of countersory has been developed in Critical Race Theory, changing the identity narrative and the communication surrounding those derogatory stereotypes.³

My personal definition of identity is as follows: “Identity is the way you see yourself interacting with the world at any given place and time.” While beginning research in the area of Disability Studies, I came across this perspective from Rose Garland-Thomson in an online article in The Emory Report, “Ability and disability are not so much a matter of the capabilities and limitations of bodies, but more about what we expect from a body at a particular moment and place.”  She goes on to note that “Disability is a culturally fabricated narrative of the body, similar to the fictions of race and gender.”⁴ 

Support and Interaction

For persons with disabilities, the desire to be viewed as “normal” becomes the roadblock for their achieving that status.  To ignore the physical signs and symptoms that a particular individual is facing is not respecting their differences; rather, it simply becomes dismissive.  Students need to know that in order to support that individual on their terms, understanding of their specific needs can be necessary. While addressing those needs, it is important to examine the common myths and stereotypes surrounding disabled individuals, and to dispel the fear that may be present among children (and adults) from interactions with those persons. Scholars have studied the roles this classification system poses to either view of persons with disabilities. If we focus only on the disability, we limit opportunities for those persons and stigmatize them.  Whereas, if we ignore the disability (like colorblindness) we oppress them. The current and evolving view seeks to mend any divisions to create a more fluid definition of disability to include a similar and different view of disability in developing our culture of disability.⁵

It is estimated that 650 million people are living with a disability. The social model of disability espouses that disability is fluid based upon the situation at any given time.  This lies in contrast to the medical model of disability, which assigns a definition of impairment.  While important and necessary for proper medical treatment, this standpoint has permeated our culture in that we view the disabled as people to be “fixed”.

In 2010, the state of New Jersey banned the use of the term “retarded”, suggesting that some legislators believe the words or phrases people speak reflect values.  Now, however, with the current political climate, we find the need to help students sort and understand how derogatory these terms are to identity.

Students can and should be taught a people-first language; a semantic approach that describes what a person has rather than what a person is.  Therefore, the title of person comes before the tile of disability, or the label. The following chart shows some examples of this type of communication change.

While not exhaustive, this chart gives educators the idea of current best practices in their communication with and about persons with disabilities. There are many on-line sources available to assist in teaching this disability etiquette.

Classroom Inclusion as Social Justice

Any teacher will tell you that addressing the needs of individual students within their unique developmental capacities at any time is indeed a challenge. Consider learning styles, maturity level, reading level, and you already have a full palate of conditions to consider.  When adding a student’s limitations due to disabilities, many of us have often wondered if inclusion is the best choice for them (and the remaining mainstream students) academically. Every child in most democratic societies is at present legally entitled to a free, public education. However, the legislative focus on right to access has not provided clear direction for achieving academic outcomes in educational settings.⁶ With inclusion, there is a constant push and pull between the “regular” classroom teacher’s responsibilities and the special education teacher’s. Often, we are left feeling as though we are not doing enough for our special needs students, and we realize, as other scholars have noted, that exposure does not equal experience.

These factors play a role in the classroom culture when students with disabilities are included. How the students treat each other or vie for teacher attention creates another dynamic which complicates individual or collective identity. The field of Disability Studies serves to change cultural practices of schooling that marginalize and exclude not only on the basis of disability, but also on race, class, gender, ethnicity, nationality, sexuality, and religion.  Taken from this viewpoint, we begin to see inclusion as a dominant force in a democratic society, and actively take steps to make learning happen for all regardless of our given job descriptions and roles.

“…discussions often fail to recognize that the space of the regular classroom, far from neutral, is constructed for a nondisabled, neurotypical, white, male, middle-class "norm" that neither reflects nor accommodates the wide range of diverse learners within it, regardless of whether these learners have been diagnosed with a disability. A Disability Studies in Education perspective sees the educational environment, not students with disabilities, as the "problem" and calls for a Universal Design for Learning approach to education, or the design of instructional materials and activities that allows the learning goals to be achievable by individuals with wide differences in their abilities and backgrounds.” (Doolittle-Wilson 2017)

This intersection between race, class, gender, religion, and disability, as mentioned above, brings another layer of significance to our public schools and speaks to the very nature of democracy. We have the privilege and power to educate every student that enters our doors. We do not refuse anyone the right to an education, but the environment in which we serve them can limit any student’s access if we do not consider, respect, and empower the individual learner’s needs. Universal Design for Learning, or UDI, is a set of principles for curriculum development that gives all individuals equal opportunities to learn. Using the Universal Design for Learning approach, we can move to greater access for all marginalized groups. The UDL principles serve to guide lesson construction and delivery so that educators keep access at the forefront of their planning.

Disability as More Common than Uncommon

On average, any two individuals share greater than 99.5% of their DNA sequences.⁷ It is an amazing statistic, when pondering the small variations which cause such huge cultural distinctions and societal barriers. We may superficially state the phrase, ‘We are more alike than different,’ but put to statistical data analysis when we consider the half percent of genetic variation between humans, we are left with nothing more than awe. And yet, upon meeting an individual for the first time, we naturally scan their being for similarities and differences. We cannot help that our identity is tied to our appearance. In her book Staring: How We Look, Rosemarie Garland Thomson takes a deep dive into the aspect of those lengthy looks we give to other humans.⁸ In essence, even though chemically our bodies may be very much alike, the outward genetic expression of that slight difference causes us to fear those unlike ourselves. We can help this by noting that something as simple as wearing glasses (corrective lenses) can be categorized as a physical impairment, or disability.  In those terms, we begin to see those differences more in light of the idea that a disability merely impairs our function and interactions at certain moments in time.