This boy actually has arthrogryposis, a distal genetic type
The long version of the significance of this portrait. Written by Sarita Knull. Do not copy without permission from author.
The Audacity of a Silenced Voice
INTRODUCTION
Modern disability studies and theories have been critical to carving out social spaces for people with disabilities within dominant western societies. According to Tom Siebers, disability theories’ ability to move mainstream societies is due to disability studies definition of disability “not as an individual defect but as the product of social injustice, one that requires not the cure or elimination of the defective person but significant changes in the social and built environment” (3). The formulation of disability theories around specific conditions such as Down syndrome, autism, dyslexia, and blindness encourages the people affected by them to move out of systematic silencing to participate in mainstream society’s discourse and alter the rhetoric about them. Conversely, people affected by conditions such as arthrogryposis multiplex congenita (AMC) that do not have specific disability theories applied to their conditions are still fighting their way into mainstream society’s awareness and the dominant discourse. The silencing of people living with AMC has been a multifaceted, rhetorical construct of dominant western cultures; however, the resistance to the silencing is beginning to be realized as the AMC community redefines itself through spoken and unspoken rhetoric.
A PRELUDE TO THE SILENCE
Most people, including doctors and other medical care providers, have never heard of the rare condition (not a disease) arthrogryposis multiplex congenita or even arthrogryposis; however, according to ¬¬¬¬¬¬E.C. Gordon’s article “Arthrogryposis Multiplex Congenita, AD 1159,” it has been around for centuries. Simplistically interpreted, AMC can be recognized by the presence of two or more fixed or stiff joints at birth (Staheli et al. 2). AMC itself is typically non-painful and non-progressive, and people affected by it typically have average to above average intelligence (Staheli et al. 20). One person out of every three thousand people is born with a genetic or non-genetic form of AMC. The most common form, amyoplasia, is non-genetic and affects approximately one-third of people with AMC (1 in 10,000); another one-third of people born with AMC die shortly after birth due to having a lethal genetic form of the condition (Hall, “New Developments”).
The silence of the AMC community can, in many ways, be attributed to dominant cultures establishing themselves as rhetor (the entity determining and sending the message) and people with disabilities such as AMC as the audience in the rhetoric of disability studies. Rhetoric is “the relation of language and power at particular moment (including who may speak, who may listen or who will agree to listen, and what can be said)” (Glenn, 1). Much of the rhetoric has been what Glenn has termed a rhetoric of silence (2). More specifically applied to people living with AMC, a rhetoric of silence is the relationship of unspoken (and implied) messages/language to power at a given moment that is used to forbid, allow, or share in the participation of discourse between people affected by AMC and mainstream society.
Historically, dominant cultures have used rhetoric (spoken and unspoken words) to control and systemically silence people with AMC. For several centuries, part of the silencing process was the refusal to acknowledge the existence of a unifying condition, thereby forbidding people with AMC from having an identity, a “collective meaning necessarily internalized by individuals for the purpose of social action” (qtd. in Siebers 15). The effect of mainstream society’s deliberate exclusion was the inability of people with AMC to gain equal rights for, as Charlton states, “One can not imagine what does not exist” (1060), and what does not exist in the world of disabilities is further minoritized and forbidden to participate in the conversation.
AMC began to be medicalized as a unique disability in1841, though arthrogryposis multiplex congenita was not coined until 1923 (Banker et al. 319). Under the medical model of disability, defined as the perception of “disability as an individual defect lodged in the person, a defect that must be cured or eliminated if the person is to achieve full capacity as a human being” (Siebers 3), the dynamics of people with AMC operating within the rhetorical sphere shifted. Rather than systematically silencing people with AMC by denying them a communal identity, dominant society assigned them an identity that inherently perpetuates the ideology that people with AMC are somehow less able and less fit to be included in mainstream society.
In resistance to the multiple implications of being silenced by the medical model, people living with AMC are beginning to rhetorically push back through an embodied model. This embodied model recognizes a valid point of the medical model, that bodies marked by AMC move and respond to various stimuli differently than average bodies, and it adheres to principles of the social model, which argues that the concept of AMC as a disability is the product of “disabling environments [that] produce disabilities in bodies” (Siebers 25).
RESPONSE
Gaining an identity has been perhaps the greatest struggle for the community of people living with AMC. Yet as difficult as it has been for community to gain a unifying unifying identity, their struggle for full participation in the mainstream society has just begun. The community has operated under rhetoric of the medical model too long, and they cannot fully integrate into mainstream society until they have wholly embraced an embodied model of disability down to the words that they use to describe themselves. As I stated above, the silencing of people living with AMC has been a multifaceted, rhetorical construct of dominant western cultures; however, the resistance to the silencing is beginning to be realized as the AMC community redefines itself through spoken and unspoken rhetoric.
STRUGGLING FOR RHETORSHIP
From the Medieval Ages to the middle of the 17th century, people with AMC were visible, but also invisible as human beings in the roles of court jesters (a.k.a. court fools) and freak shows; though they spoke, they were rhetorically silenced by dominant society’s excluding what they said and not giving validation to their words. However, in 1642 we see the first documented resistance of people with AMC in response to being rhetorically silenced by mainstream society. Based on the timeline provided in Maurianne Adam’s “Perspectives on Historical Treatment of People with Disabilities,” we know that in the 1600s, people with disabilities were typically homeless and forced to beg due to having been ejected from poor shelters. People with AMC shared in this reality.
According to medical AMC experts, Jusepe de Ribera’s 1642 painting, The Clubfoot (renamed in 1870 but originally The Dwarf), is of a boy affected with AMC (Staheli et al. 1). The flexion of the boy’s wrists indicates that he has a distal, genetic form of AMC. In the boy’s left hand is a piece of paper bearing the words, “Dam hi elimo sinam propter amorem dei,” which, according to Ramachandran and Aronson’s article “Diagnosis of Art,” means “Give me alms, for the love of God.” This particular painting is significant in its portrayal of people affected by AMC, and the boy can be considered the predecessor of the AMC awareness and rights movement.
The boy’s presence in the painting resists the rhetorical silencing enacted upon him and other people with disabilities by the dominant culture. Seventeenth-century, mainstream society refused to acknowledge his humanity and physical presence (and, therefore, their responsibility) as a way of denying his participation in the discourse concerning his basic rights to shelter and food. The dominant society attempted to silence him by firstly incorrectly identifying his disability as physical “deficiency” in height, secondly as merely an issue of clubbed feet, and finally by physically impoverishing and excluding him from a discourse in which only wealthy males were allowed to participate.
Nevertheless, the boy reinvents himself in another manner so he can involve himself in the rhetoric of his era. He chooses “silence as a strategic choice” (Glenn, 13) rather than try to engage his audience in a spoken conversation that mainstream society refuses to hear because, as Adam’s points out in her timeline, society in general believes him to be “a sinner, genetically defective, inferior.” In that moment, he becomes the rhetor in the rhetoric of silence.
The boy, with his ragged clothes, crutch, flexed wrists, and clubbed feet, is standing tall and looking, engaging our eyes with his eyes and dimpled smile. He anticipates the common reaction of the dominant culture, and seizes the moment to silently argue for the “normalcy” of people with AMC. Garland-Tomson explains the dominant society’s reaction stating, “The visibly disabled body intrudes on our visual landscape and compels our attention, often obscuring the personhood of its bearer” (187). However, in the moment our eyes look at the eyes of the boy in the painting, his smile and returned gaze invites us to see him through the lens of the social model which argues that “disability is socially constructed” (Charlton 132) and that “disabling bodies produce disability in bodies and require interventions at the level of social justice” (Siebers 25).
By allowing Ribera to paint him in a way that was so profound that dominant western cultures deem his image to be worthy of the Louvre, the boy momentarily grasps the role of rhetor. He silently, persuasively, and purposefully (rhetorically) up-ends social mores forbidding people to see him as a charming person. The boy challenges the dominant discourse, asking his audience if he is really any less dignified and less “normal” than the rest of mainstream society.
Regardless of his silent eloquence, the boy’s decisive moment of resistance to systematic silencing was and is lost on most of his audience. His individual, defiant stance against the “degradation of paternalism” (Charlton 713) continued to be silenced – ignored – by dominant societies because his disability (and by the dominant society’s standards, he) lacked an identity. Possession of an identity has always been considered necessary for one to be allowed to participate in mainstream society’s rhetorical discourse. As Seibers states, “Identities are means of inserting persons into the social world” (55). Consequently, for people with AMC to be able to assert themselves as rhetors, advocating for the recognition of their right to participate in dominant societies, they need an identity.
Even now, as a high profile member of the AMC community, the boy in Ribera’s painting remains excluded from and silenced in dominant western society’s discourse because dominant society continues to deny his identity as a person with AMC. The fact that the boy is recognized as The Clubfoot rather than The Boy with Arthrogryposis perpetuates the silencing of the AMC community as a whole. Without the appropriate identification, the boy can not be seen in the context of the collective lived experiences of people with AMC, and his message concerning his and other people with AMC’s right to occupy mainstream social spaces is systematically silenced as well. However, as mainstream society becomes increasingly aware of AMC and people with AMC, the boy in Ribera’s painting will join the community of people with AMC in using rhetoric to create a social space within dominant society, and he may claim his proper identity.
Because AMC is not class related, the rise of the middle class allowed middle-class parents of children with AMC to seek medical attention for them. People marked by AMC began gaining the attention of the medical community in the 1840s as parents searched for a medical explanation to interpret and situate their children within their dominant cultures. Orthopedic and genetic specialists, searching for a way they could more easily identify them, medicalized people with AMC within the medical model as they observed commonalities in the bodies of babies and children experiencing AMC. The community of people with AMC’s acquisition of a medicalized identity has been a Janus. Under the medical model, the dynamics of how dominant cultures rhetorically silenced people with AMC and how people with AMC could resist that silencing and integrate into mainstream society shifted once again.
Siebers states, “Bodies are linguistic effects driven, first by the order of representation itself and, second, by the entire array of social ideologies dependent on this order” (55). This statement has held very true for people with AMC. In identifying people with AMC, “hard science” has become the front for the dehumanizing silent rhetoric insidiously inherent in medicalized, Aristotilian terms such as “crooked,” “deficient,” “deformed,” “abnormal,” “malformed,” and “defective” (Aristotle ¬¬506, 1856, 1864, 1944, 2047; Staheli et al. 3). The ideologies perpetuated by the language used to define AMC as a condition silence the AMC community through implying that people affected by AMC are some how less deserving of equality within mainstream society than an average-bodied person. These ideologies have produced negative and silencing legal, psychological, and social effects on the community of people living with AMC.
The rhetoric inherent in the medical model specific to people with AMC has historically provided dominant western culture with a legal basis for its refusal to include people with AMC into mainstream society. This physical and rhetorical silencing has never been so apparent as when the Ugly Laws (as we have come to know them), though never a part of federal laws, were internationally enacted in various cities, states, provinces and counties. They forbade the public presence of people with disabilities, and shared common language that defined people with disabilities as “Any person who is diseased, maimed, mutilated, or in any way deformed so as to be an unsightly, or disgusting object, or an improper person” (Schweik 1806). As explicitly shown in a picture taken in a survey of people who lost their jobs and were excluded from the public sphere by the Ugly Laws (the man is incorrectly identified as “the cripple”), people affected by AMC were by no means exempted from the degradation of those laws (Schweik 173). The descriptors such as “diseased” and “deformed” that are used to identify people marked by AMC were also descriptors specifically used to physically silence and ban people with disabilities from the public sphere. Refusal to adhere to those ordinances could result in incarceration or institutionalization. The Ugly Laws also made it difficult for people with AMC to rally together to protest their inhumane treatment thereby silencing their voice as well.
Psychologically, the medical model of AMC has been brutal in rhetorically silencing people with AMC. For example, the book, Arthrogryposis: a Text Atlas, is the only complete body of work concerning AMC, and is the defining reference guide for medical providers as well as individuals and families living with AMC, yet its objectification and definitions of the bodies of people with AMC are depressing. The words frequently used from beginning to end to describe AMC’s mark on the body include “disease” (though they say it is not one), “abnormalities,” “failure,” “defect,” “malformed,” “disorder,” and “dislocated” (in the wrong place) (Staheli et al. 3). All of the listed words speak of loss, being an incomplete human, and/or an incorrectly formed human. The text fails to acknowledge that there are numerous variations in the body’s structure and that people marked by AMC exhibit a small portion of that variation. The pictures used to show how AMC affects and marks the body participate in the rhetorical silencing. In the book, people’s faces are either fogged or blacked out. If an image depicts a teenager or an adult with AMC, the individuals are posed as if they are having prison photos taken. Most of the pictures reinforce language that tells people they are diseased outcasts, isolated from the rest of society, and they perpetuate a sense of hopeless abandonment.
The medical community’s persistent association of the people with AMC with an image of incompleteness and defectiveness is problematic; it contributes to ordinarily brilliant people with AMC’s “psychological internalization” of these negative identities and people affected by AMC may “ come to believe they are less than normal, less capable than others” (Charlton 375). If people with AMC view themselves as somehow “less,” their efforts for self-actualization becomes repressed and they are eventually silenced. The superimposition of such negative names onto people who were already negotiating the world in a non-standard way further marginalizes a group already on the fringes of society.
However after a few false starts, people living AMC have begun to appropriate their diagnosis of AMC to systemically push back and resist the rhetorical silencing that has been superimposed on them for centuries. In 2005, AMCsupport.org, emerged to form a virtual community on an international stage of people living with AMC. The group, inspired by a optimistic mother of girl with AMC, began to serve as a social contrast to the medical model of AMC that had existed for the past century. Created and solely inspired by the rhetoric of written words, AMCsupport.org altered the way in which the medical community controls the rhetorical silences that had previously been imbedded in living with AMC. Instead of individuals and families being given conflicting information about the impacts of living with AMC from doctors and medical journals, forums were created to enable an easy exchange information about adaptive equipment, therapies, which doctors to attend, medical advances with impacts on AMC, negotiating teaching children independence, and perhaps most importantly to share in the daily lives of families living with AMC. The conversations are not limited to one-on-one exchanges of information, though people can connect through private messaging. Through rhetoric, families living with AMC used the virtual world to carve a social space for themselves in mainstream societies that systematically silenced them. Conversations between adults and teenagers with AMC, and parents and therapists of people affected by AMC became a choice. Consequently, silence and talking about AMC is now a matter of choice.
The social model formed by AMCsupport.org incorporates Charlton’s thesis, “Nothing about us without us” (75). The adults affected by AMC are some of the parents’ greatest resources. They remind over-indulgent parents, “AMC is not a roadblock…It’s just a different path” (Kaman); when they need to listen to what their children are telling them; and that while children with AMC are young, the parents must maintain their roles as advocates. A few years ago (and, occasionally now), AMC experts viewed the parents of children with AMC as an impediment. What could a parent know about what medical procedures and therapies to try and not to try? However now, many experts are beginning to recognize and appreciate the advantages of well-informed and researched parents being in control of their children’s medical procedures and treatment strategies. They are learning to value the insights and experiences of adults who were the medical community’s guinea pigs. People living with AMC are wrestling the control of their destiny out of the hands of others.
Creating spaces for people living with AMC has not remained in the virtual world. The virtual world has helped reduce the geographic isolation of people with AMC, and translated itself into the physical world. Since the creation of AMCsupport.org, there have been annual conventions hosting hundreds of individuals and families living with AMC as well as smaller, regional social gatherings. Because, so far, the annual conventions have yet to be hosted in the same state twice, the presence of over a hundred individuals who are obviously physically marked by AMC, each in a unique way, creates what Garland-Tomson refers to as “visual activism,” on a large scale (2206). Each time several families of people affected converge on a new place in both large and small groups, they “normalize” the sight of bodies marked by AMC and construct a social model for mainstream society to understand what it means to live with it. As they move about negotiating the ebb and flow of day-to day life, they are showing mainstream society that they are first and foremost people. AMC does not define their character (aside from building determination).
WHAT I KNOW
People with AMC, like so many others living in the world of disabilities, have been systematically, physically, and vocally silenced for centuries because of the negative perceptions of people whose bodies do not fit mainstream society’s frame of reference. However, due to the advocacy of the disability rights movement as a whole and due to people with AMC’s refusal to hide their bodies in shame, individuals in mainstream society are now being forced, through visual activism, to change their frame of reference.
INFERENCES
At this point in time, there is not a lot of information available about AMC itself or about AMC’s relationship to disability theory. Much remains to be researched concerning AMC and its affects on the body. Also, more research needs to be done on the stories and discourse of adults with AMC and the parents of children affected by AMC. For so long, people with AMC have been objectified under the medical model; doctors (as the “medical experts”) have not listened to what people with AMC and their parents have told them about their own bodies. As people with AMC become more assertive in propagating their self-image, the view of the medical world about them will change. Part of this shift will include the insistence that the medical world not refer to their bodies in negative ways, and not use negative images to portray people with AMC as isolated “creatures.”
IMPLICATIONS
I am sensitive to the fact that my understanding of what it means to be affected by AMC is acquired through my secondary role of living with it. I cannot speak for everyone in the AMC community. Nevertheless, we, the community of people living with AMC are participating in creating what Nussbaum calls the “social contract doctrine” between us and mainstream society (218-21). That is to say, in private and in public spheres, we are perpetually engaged in a verbal and silent power struggle with mainstream society about how we are perceived and received. While the parents of children with AMC are now insisting on participating in deciding their children’s medical treatment plans, adults with AMC need to participate in the medical dialogue about AMC. Furthermore, we need to study disability theory in relation to our children’s individual education plans so that they can receive truly, appropriate education, with out the dehumanizing elements incorporated in the medical model. They deserve a social space within in the dominant discourse.
Works Cited
Adams, Maurianne, Lea Anne Bell, and Pat Griffin. “Appendix 14C: Perspectives on the Historical Treatment of People with Disabilities.” Teaching for Diversity and Social Justice. 2nd ed. New York: Routledge, 2007. N pag. Historical People. Web. 30 June 2007.
Aristotle. Generation of Animals. Trans. A. L. Peck. Cambridge: Harvard UP, 1943. Kindle Store. Web. 1 July 2010.
Charlton, James I. Nothing About Us Without Us. Berkley: U of California P, 1998. Kindle Store. Web. 6 July 2010
Garland-Thomson, Rosemarie. Staring: How We Look. Oxford: Oxford UP, 2009. Kindle Store. Web. 6 July 2010.
Gordon, E.C. “Arthrogryposis Mulitplex Congenita, A.D. 1156.” PubMed. National Center for Biotechnology Information. Jan. 1996. Web. 7 July 2010.
Hall, Judith G. “New Developments in Arthrogryposis (Multiple Congenital Contractures).” 4th Annual AMC Convention. Sheraton Society Hill Hotel, Philadelphia. 17 July 2009.
Johnson, Mary. “Sticks and Stones: the Language of Disability.” Disabled, the Media and the Information Age. Ed. Jack Adolf Nelson. Westport: Greenwood P, 1994. 25-44. Google Books. Web. 29 June 2010.
Kaman. Online posting. AMCsupport.org. N.p., 2010. Web. 21 Jul. 2010.
Nussbaum, Martha C. Frontiers of Justice: Disability, Nationality, Species Membership. Cambridge: Belknap P-Harvard UP, 2006. Kindle Store. Web. 6 July 2010.
Ramachandran, Manoj, Jeffrey K. Aronson. “The Diagnosis of Art: Arthrogryposis and Ribera’s The Clubfoot.” PubMed. National Center for Biotechnology Information. June 2006. Web. 7 July 2010.
Ribera, Jusepe de. The Clubfoot. 1652. Oil on canvas. Musée du Louvre, Paris. Web. 7 July 2010.
Schweik, Susan M. The Ugly Laws: Disability in Public. New York: New York UP, 2009. Kindle Store. Web. 6 July 2010.
Siebers, Tobin. Disability Theory. Ann Arbor: U of Michigan P, 2008. Print.
Staheli, Lynn T., Judith G. Hall, Kenneth M. Jaffe, and Diane O. Poholke, eds. Arthrogryposis: a Text Atlas. New York: Cambridge UP, 1998. Global HELP. “Global HELP.” Web. 24 June 2009.
Last edited by theknulls@gci.net on Mon Sep 27, 2010 7:06 pm, edited 2 times in total.
Luca went to open gym gymnastics this morning and loved the ladybug stamp he got on his foot so he was showing that to the camera. We also enjoyed another sunny day here in Seattle! Yay for Spring! We are loving the sunshine!
