“I Wish I Had Down Syndrome:” On Disability, Agency, and Classification

By Daniel Jones

“I wish I had Down syndrome.” These words were spoken by a student in a functional skills special education (SPED) classroom that I work in during the day. The student was speaking with another student who has Down syndrome (DS). Like many graduate students, I work multiple jobs while being in school. Claims of the disconnected ivory tower sometimes seem lost on me. In multiple instances, my research on the role of classification in society (regarding discourses of nature, religion, human-being, etc.) and my experiences in the workplace shape one another.

My experiences in the SPED classroom often engage my experiences with the critical study of religion and society. I have found that one helps me think through the other. The above quote was affectionately spoken by a student with cognitive and physical disabilities (without DS) to another student who has DS.

Down syndrome is a genetic composition wherein the 21st of (typically) 23 chromosomes in the nucleus of a cell has a full or partial copy, and about one in seven hundred babies are born with it. Down syndrome affects physical and cognitive functions and development. Individuals with Down syndrome are all unique in ability, though certain commonalities are present. You can find this information and more on the website for the National Down Syndrome Society, here.

“Disability” is a term that encompasses diverse physical and neurological conditions: it is much like the term “religion” in that it operates to gather diverse phenomena under an umbrella term. Both terms are conceptually shaped by factors such as media, politics, and economics. Rhetorics of both have been used for enabling and oppressing bodies that differ from what society constructs as “the norm” or “natural.” Often, actions, events, and people classified as “religious,” are imbued with an assumption of difference, something wholly separate from other social and/or biological processes. This is found in the imagination of both the scholar and lay person alike. I find similarities here with how the role of individuals with disability classifications are treated.

Through observation and analysis of how individuals with disabilities shape and are shaped by society, I have found it helpful to think through questions of identity and agency with the same approach as utilized in religious studies. Turning my focus to disability (and DS) as a classification, an identity, the work of Jean-François Bayart has shaped my thinking: what if disability is not an explanatory category, but a category to be explained?

In response to this experience, I wanted to better understand how concepts and terms like “disabled” and Down syndrome function to position students within their social context(s). The classroom comprises a specific site of knowledge built on shared experiences and relationships. By gathering individuals who hold classifications of disability together, a specific ecology of identifying possibilities and value discourses becomes possible (Autism spectrum disorder, Angelman’s, Down syndrome, etc.).

A parallel may be drawn between the desire expressed to have Down syndrome and the neurological and physical impairment often endured by pro football players and/or wounded soldiers. In the latter, injuries endured are seen as heroic and/or admirable due to the association to American football or war. In this particular situation, the student viewed Down syndrome with similar admiration.

At times, the language of “disability” can mask ability and agency in shaping social processes and symbolic structures. This is a testament to the hegemony of a classification system that can unwittingly erase material differences for bodies that do not conform to social norms, thus, blinding us to the agency and abilities of different bodies. Having DS may not have the same symbolic capital, or the same cultural resource of value in society at large, as it does between the students in the classroom. Whether we are formally analyzing as scholars or engaging in casual interactions with one another, we are continuously using frames of reference that are not universally shared. The language we use to organize our experiences matter, and thus has consequence. Our categories can lead our thinking in ways that hide the very common activities of people deemed uncommon.

 

Daniel Jones is a graduate student in Religious Studies at Missouri State University. His research analyzes discourses on nature, religion, and human-being.

Photo credit: Image of differently abled artist with his art from Colombo Center for Special Education was taken by Buwaneka Saranga via Flickr (CC BY 2.0)

 

3 Replies to ““I Wish I Had Down Syndrome:” On Disability, Agency, and Classification”

  1. As the mother of a son with Down syndrome (and a religious studies scholar), I have often thought in this cultural, historical moment, “I wish my son was on the spectrum.” There is so much more interest in funding research for ASD and the political and social capital of the parents of kids on the spectrum seems much stronger to me. I have never heard of my son’s peers express a wish to “have DS,” but that might be because he has never been in an environment that emphasizes the diagnosis. What you see and hear in the classroom is, of course, different from what I experience as a parent. Great observations, I’m interested to hear more about the connections that you draw on classifications.

    1. Amy, thank you. I agree, individuals with ASD (as well as ASD as a discourse) do get treated differently. I think that has to do with a few factors. The intersection of 1) the ability ranges that ASD and DS uniquely influence with 2) the roles that society produces through structured concepts of “the norm,” and able to contribute to the imagined possibilities of being a “contribution to society.” This is largely shaped by media, art, and intellectual discourse. In my experience, there is much more talk about professions with people who have ASD. Individuals with DS seem to be surrounded by talk of what they can’t do, as opposed to what they can do. Individuals with ASD areally also surrounded with talk of DISability, instead of ability; though, I think less so. I want to communicate that I do not mean to trivialize the very real challenges that certain bodies present, or to place one as more so than the other. Rather, I think that how we talk about these respective classifications has real consequence. I hope that I communicated that well. Thoughts?

  2. BTW, tonight’s episode of Switched at Birth, of Freeform, had a fascinating representation of individuals with DS and agency.

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