May 3, 2015
Crip like me: A narrative critique analysis of the disability experience
“If one got to thinking that it can only be out of something like writing—or the pharmakon—that the strange difference between inside and outside can spring … one would then have to bend into strange contortions what could no longer even simply be called logic or discourse.”
— Jacques Derrida, Plato’s Pharmacy
In the modern U.S. era of nearly ubiquitous technology, weblogs and other digital channels are increasingly becoming ready-made publishing platforms for anyone with an Internet connection, fundamentally changing not just how information is shared but who can share it. These advances have opened the doors for those in historically marginalized groups to share their experiences through strikingly candid and persuasive personal narratives, such as the life chronicled by Marc Stecker in Wheelchair Kamikaze. This is especially true for members of the disability community, who, as scholar Simi Linton points out, “have had few opportunities to be active in society … (as) various social and political forces often undermine the capacity for self-determination” (25).
But technology alone isn’t responsible for ushering in the wave of disabled bloggers, writers, artists, and scholars. A slow paradigm shift has been in effect since the mid-twentieth century, when the disability rights movement began taking shape and gave the community a collective consciousness, political agency, and a voice. Its counterpart, disability studies, has emerged as a way to examine disability through cultural, historical, and political lenses. It touches upon many themes, from our notions of individualism and equality to the values and beliefs of a society.
The narrow way that disability has been represented and depicted in mainstream culture is a far cry from how disability rights activists would like to represent themselves — those perspectives are part of a new, still-evolving narrative. The “nothing about us without us” movement gained more prominence in the 1990s with the passage of the Americans with Disabilities Act, which prohibited discrimination on the basis of disability. Encouraged by the law, activists have been chipping away at what could be called the cruel bigotry of lowered expectations ever since.
Stecker is one of the more outspoken voices in the disability rights movement. Diagnosed with primary progressive multiple sclerosis in 2003, Stecker began a journey that many of the roughly 50 million people considered disabled in the United States will find familiar, one that involves the medicalization of disability and the pathologizing of difference. I will being using a specific definition of disability in this essay, one provided by longtime advocate and historian Paul K. Longmore, who described it as “an elastic social category shaped and reshaped by cultural values societal arrangements, public policies and professional practices” (38). While disability encompasses a broad spectrum of medical conditions with diverse effects on appearance and functioning, the impairment itself should not be construed as the definition of disability (Longmore 42). I also find value in the universality of Rosemarie Garland-Thomson’s description of disability as “the most human of experiences, touching every family and—if we live long enough—touching us all” (336).
Stecker’s particular disease, multiple sclerosis (MS), is a chronic, often-disabling condition of the central nervous system that happens when the immune system attacks the myelin sheath that surrounds nerve fibers, leading to symptoms ranging from fatigue and numbness to paralysis and blindness. There is no cure for the nearly 2.3 million people living with it around the world, and those with the primary progressive form of it have little in the way of treatments or disease-modifying therapies.
In Stecker’s case, MS has in a few short years forced him to leave his job as a video producer for a major music industry company and begin using a wheelchair to get around New York City. He shares his experiences through his weblog (blog for short), Wheelchair Kamikaze, which he began in 2009. As of April 2015, he has written more than 300 posts, and his blog has garnered more than 1.7 million visits. His audience, as I will explain, is primarily others living with MS who engage in an ongoing dialogue with him. As Stecker puts it:
As sympathetic and well meaning as our healthy friends and family may be, they simply can't understand the emotional and physical toll taken by MS, and the Web provides the opportunity to reach out and “talk” to other MS patients. I've found that this has made all the difference in making daily life with MS bearable. (“MS on the Internet”)
It is in this online discourse community that people with MS feel most comfortable sharing their experiences, trading secrets, and confessing their fears. Similar communities can be found for other illnesses and diseases, from cancer to infertility. Disability discourse is moving, albeit in fits and starts, from a medical one to a minority one. Stecker’s narrative is compelling precisely because he has been an agent in that shift. As Longmore points out, Stecker has risked “telling the truth” of his own experiences as an insider living with a disability but still holding an outsider status in the world, particularly in the medical community (232). Stecker reminds his readers, in post after post, that questions of power and agency must always be addressed. “No patient should be satisfied with the MS status quo,” he writes (“Glimmers of Hope”).
Stecker writes for several reasons: to inform, complain, capture life, persuade, explore the dark areas of his disease, entertain, establish communal identity, and tell a story. Mostly, and most importantly, he is writing to advocate for change, crafting an ongoing public moral argument about how people with disabilities, and those with multiple sclerosis in particular, should be defined and treated, by society at large and what he would call the medical industrial complex.
By examining Stecker’s blog through the lenses of disability rights and Walter Fisher’s narrative criticism, we can offer a theory that suggests the narrative paradigm can reclaim the social model of disability for its own, while the prevalent medical model is a classic example of the rational world paradigm. The two can and do co-exist, yet the power dynamics are such that the medical model has persisted, leaving the authority to define identities and roles in the hands of the nondisabled.
Additionally, the disability narrative doesn’t exactly jibe with America’s dominant cultural narrative, which prizes independence and the Horatio Alger spirit of can-do-it-ness. The “supercrip” conceit has its roots in this mythology and holds fast to the notion that a disability can be overcome. Joseph P. Shapiro says the idea of the inspirational disabled person, which is deeply moving to most nondisabled Americans, is widely regarded as oppressive by most disabled ones (16). In fact, this overcoming rhetoric is nothing more than wish fulfillment from the nondisabled who fear ever becoming the other (Linton 18).
What disability rights advocates like Stecker are challenging, then, are institutionalized prejudice and discrimination that are the byproducts of a medical model, which shapes health care, social services, education, private charity, public policy, and culture (Longmore 218). By framing his own disability-related agenda, Stecker is one of many who seek to empower disabled persons through knowledge and communal identity, creating a new social model of disability.
The terministic screen Stecker uses to frame his narrative is that of the advocate, an outsider to the medical field with insider knowledge that only comes with having MS. He’s not a doctor or researcher by degree or career, but Stecker’s first-hand experience with the disease has given him a unique perspective, while his background as a visual storyteller has given him the tools to communicate persuasively. Stecker’s narrative amounts to what Jacqueline Rhodes considers one of the parameters of techné: “the importance of lived experience to the formation of an ethical stance” (Alexander 207). In his blog, Stecker is sharing a narrative as an alternative view, providing the substance of good reasons for a public moral argument, and creating an unending conversation with other persons with MS, who could be consider the Other.
Jay Timothy Dolmage would likely say that Stecker is utilizing mētis, the rhetorical concept of cunning and adaptive intelligence in a world of chance and change (5). It is a way, Dolmage says, that we can begin to recognize the embodied nature of disabled communication and “the oblique ... forms of knowledge these positions have always allowed” (159).
Walter Fisher’s "Narration as a Human Communication Paradigm”
Fisher said, “the meaning and significance of life in all of its social dimensions require the recognition of its narrative structure” (267). In fact, Fisher suggests homo narrans is a continuation of Kenneth Burke’s definition of the man as a symbol-making and symbol-using animal (270). For Fisher, the narrative impulse is ingrained in us as part of the natural process of socialization, yet for most of the modern era, disabled persons have not been afforded such an opportunity to own, much less share, their experiences.
In the United States, institutionalization and segregated settings for disabled children and adults were fairly standard until the mid-twentieth century, severely limiting their participation in mainstream society. In 1972, the first independent living center in the country opened up in Berkeley, California, giving disabled people autonomy and freedom (Linton 68). This coincided with the disability rights movement, which gave those groups a sense of agency. Now, technology has further democratized society. As Jonathan Alexander asserts, “the internet and the emergence of ... composing and publishing tools have given us a nearly unprecedented capacity to represent ourselves, our interests, our communities, and our investments—personal, political, and otherwise” (188).
The medical model assumes that the underlying physiological conditions were the primary obstacles to the social integration of disabled people, not stigmatization stemming from lack of understanding of the disabled experience. The problematic reality is that disability, when only seen as pathology, “is ‘owned’ and controlled by the doctor or scientist” and is therefore no longer a personal experience, according to Dolmage (37). The disabled person is objectified, becoming a scientific artifact to be prodded and exploited by an outsider, whether as Subject A in medical journals, human-interest stories that focus on the disease instead of the person, or the deficient or evil characters in popular culture.
The rational world paradigm aligns with the medical model in several ways, the primary ones being that people are essentially rational and that the world is a set of logical problems that can be solved through rational analysis. According to the medical model, disability is seen as a deficiency or deviance to be cured (Dolmage 37). Keeping with this line of argument, then, the medical model advances the agenda of professional interest groups and those standing to profit from disability. It forces the disabled person in the diminished role of patient/consumer and dependent object of charity, someone who isn’t a complete person until he is healed.
In contrast, the narrative paradigm employs other perspectives to give new dimensions to disability. If we are storytellers at our core, then Wheelchair Kamikaze stands as a prime example of narrative rationality: it is descriptive and it offers an account, an understanding, of any instance of human choice and action. Linton explains that the “cultural narrative of the disabled community incorporates a fair share of adversity and struggle but it is also, and significantly, an account of a world negotiated from the vantage point of the atypical” (5). This world is less about the actual physiological constraints of individual disabled people and more about navigating the institutions, physical locations, and social spaces built for those considered the norm. The current social model of disability helps to identify these barriers; the narrative paradigm can help to reframe the screen through which most of society sees disabled people.
Following in the steps of the sister movements of gender, race, and queer theories, the scholarly tasks are then to uncover the history of disabled people, raise awareness, and forge a new social identity (Longmore 146). Applying Fisher’s concept of good reasons to these tasks, we can see how the communicative expressions of social reality, which are ruled by matters of history, biography, culture, and character, are critical components of this newly declared identity. In other words, how Stecker constructs his narrative is key in order for his audience to disavow the medical model of disability and embrace a new social model. He need not provide “self-evident propositions, demonstrations, and proofs” to support his argument but sustain a conversation with his audience (Fisher 268). It is identification, not deliberation, that matters.
For the narrative paradigm to be effective as a rational argument, consubstantiation must exist between the writer and audience. The writer must have established an ethos, which bolsters the narrative fidelity, and meet the demands of narrative probability. Traditional rationality, Fisher asserts, implies a hierarchal system in which some people are qualified to judge and lead — the medical community in this case — while others — disabled patients — are to follow (273). The narrative paradigm, while not denying the traditional hierarchy, suggests that individuals can create and adopt “new stories that better account for their lives or the mystery of life itself” (Fisher 274). Through their experiences, members of the disabled minority have embraced markedly different values from their majority nondisabled counterparts. It is self-determination, not self-sufficiency they uphold, and interdependence over independence (Longmore 222). Similarly, as Fisher asserts, the narrative paradigm is “a ground for resolving the dualisms of modernism: fact-value, intellect-imagination, reason-emotion” (274).
These symbolic actions of words and/or deeds, Fisher says, have a sequence and meaning for those who live, create, or interpret them (266). As moral constructs, these narratives are meant to not only connect those in particular communities but also provide a foundation for the public moral argument, determining what “ought to be.” One can begin to see how imperative the disabled perspective is to the disability rights movement, because absent that narrative, experts in the medical field are calling the shots for treatments, policy, and ultimately, self-determination and identity. That has historically led to ostracism, institutionalization, sterilization, and in the case of Nazi Germany, mass involuntary euthanasia. If humans are storytellers, and stories are moral, and moral action affirms life, then upholding such narratives truly becomes a matter of life and death for the disabled community.
If we are to follow Fisher’s theory, then some stories rise above as being better than others, more coherent, and more true to the way people and the world are, in fact and in value (274). Stecker’s blog, Wheelchair Kamikaze, has succeeded at being one of those narratives, even as he strikes a stance that challenges the dominant medical model and pushes back against the idea of the supercrip popularized in the media and even in some disease nonprofits.
As Fisher points out, “any story … not only says something about the world, it also implies an audience, persons who conceive of themselves in very specific ways” (279). In Stecker’s case, his audience is almost exclusively made up of people with multiple sclerosis. He began his online narrative in several online forums about MS and was encouraged by those in the web support groups to begin writing in earnest. Thus the blog was conceived, and the name selected because of Stecker’s motorized driving habits.
Disability shapes our available means of persuasion, but for an audience eager for a leader and a voice, Stecker is particularly effective at forging an insider identity by affirming his cohorts’ self-conceptions:
Unlike the friend, lover, caregiver, or stranger who most likely has only ever lived in the land of the healthy, those of us with chronic illness have straddled two worlds. We the sick can remember a time when we were part of the healthy world, even if it now often seems like something of a place of wonder, and sometimes one of intense frustration. (“Parallel Universes”)
While not every disabled person has the exact same journey, with fewer than 15 percent of disabled Americans being born with their disabilities, there is a universal experience that Stecker is speaking to, creating what Burke called consubstantiation. Dolmage points out that the “experience of the limits of embodiment is universal, even while this experience is never identical” and that the disabled experience allows for a more real perspective precisely because of its unstable nature (141). This idea goes along with what Donna Haraway calls solidarity, situated knowledges that create webs of connection (Dolmage 141). Stecker describes it this way:
Like members of a secret society, we share hidden knowledge, from the indignities suffered courtesy the often maddening world of modern medicine, to the daily struggles of just doing things that not so long ago were no struggle at all. … More often than not we laugh in spite of and at this insidious disease, defiant in the face of our shared adversity. We celebrate each other's victories, and mourn each other's losses, comrades in arms for the fight of our lives. (“It Takes One to Know One”).
Stecker, without ever calling it such, spends a great deal of his blog challenging the rational world paradigm of the medical model. Take, for instance, this rallying cry, variations thereof that exist in several posts:
Okay, my fellow MSers, are you sick of sitting on the sidelines like powerless spectators observing a do or die contest that will determine your very own fate, waiting anxiously for neurologists, researchers, and pharmaceutical companies to ride to the rescue? Are you, like me, sick and tired of being sick and tired, weary of having very little ability to do anything about the situation except listen to the same old same old, held hostage by a status quo that offers more questions than answers? (“iConquer MS”)
In several posts, Stecker takes “big pharma” to task for what he calls the medical research model, which has become “so corrupted by the corrosive influence of big money that it’s completely lost sight of its primary objective: finding ways to eradicate diseases, not fancy new formulas for turning them into cash cows” (“How Are you?”).
Stecker’s argument holds weight because of the sustained nature of his narrative, which has chronicled the cost (financial, physical, and emotional) of the myriad treatments he has undergone since his diagnosis. Those treatments provided no cure, no delaying of the ravages of MS. This conundrum resonates with his many members of his audience, who doubtless have faced those same predicaments. His real-time blog is a recounting, in Fisher’s terms, regarding how he constructs a meaningful life-world and relates truths about the human condition (270).
But, just as Fisher asserted that the narrative paradigm doesn’t replace the rational world paradigm, Stecker isn’t pushing for his narrative to completely dominate, insisting that “for now, it is imperative that patients as much as possible use their heads, and, armed with accurate information, work in tandem with their physicians to best beat back the beast that is MS” (“Patient Taking Tecfidera Develops PML”). He cautions that the doctor-patient relationship should not be a dictatorship, but a partnership.
Stecker offers a compromise of sorts in his narrative, insisting that “vigorous and innovative research is urgently required, as is a shift away from much of the current thinking about the disease, which has proven hugely profitable to Big Pharma, but of little value when it comes to eradicating MS (“Progressive MS: A Deep Mystery”). The logic of good reasons, one could insist, would see that the narrative of new perspectives has more value to this audience than the current paradigm, the medical-research model.
He is not so anti-establishment that he writes off medical treatment entirely: “Unlike some other MS advocates, who label all of the available mainstream disease modifying drugs nothing more than snake oil, I recognize their value in improving the quality of life of many of the patients taking them” (“Greed Trumps Common Sense”) Stecker, like others with the mystery that is MS, which has no known cause, is acutely aware that being your own best advocate and gaining expertise is critical when it comes to getting the best care. That’s why he weaves informational packets throughout his narrative, including research roundups curated from other sites, news of novel and controversial disease-modifying therapies, and links to other voices. These serve to bolster his credibility as a resource for the MS community and add to his ethos, which is furthered supported by his inclusion external content such as the Everyday Health site with Dr. Sanjay Gupta (“The ‘Wheelchair Kamikaze’ conquers”).
Stecker writes with the clarity and authority that comes from years of being his own best advocate. His story holds together because it is well told and believable, meeting the bar for narrative probability. While he does have skin in the game, Stecker isn’t just writing for himself. He is writing to connect and affect change.
Wheelchair Kamikaze, as the name implies, sees the world from waist-high. Stecker captures the literal meaning of that through his wheelchair-mounted camera, taking photos and shooting video that is emblematic of his experience of zipping through New York City, throwing caution to the wind. This type of dissoi logoi, as Dolmage describes it, refuses to accept the normate ordering of the world, insisting that the disability perspective is the stronger one (130). Yet in one video in particular, as Stecker takes his viewers on a quest to find an Audrey Hepburn statue, he is providing a subtext of a city that isn’t kind to the disabled — the dangerous lack of curb cuts, the indifferent construction workers and drivers, the rude pedestrians. His video reinforces the narrative probability of his story – we have through the lens of the camera actual evidence of his experience through his deeds.
Stecker, like many disability advocates, bristles at the notion of the supercrip, that disabled person who triumphs over adversity. As Longmore describes it, that image has remained the preferred, even required, mode of self-presentation, involving an “implicit bargain in which the non-handicapped majority extended provisional and partial tolerance” of disabled individuals as long as they “demonstrated continuous cheerful striving toward normalization” (48). Even the National MS Society, the largest nonprofit devoted to MS research, treatment, and support, falls victim to this myth, celebrating those advocates who embrace a decidedly sunnier outlook. As Stecker explains, though, the reality is much more nuanced:
When all is said and done we soldier on, not because of an infusion of incredible bravery or superhuman courage, but simply because there is little else we can do. Each dawn brings with it a choice, to collapse under the weight of the disease or to once again muster up the strength to make it through one more day. To the healthy it may seem that choosing the latter is somehow extraordinary, but when actually faced with that decision, choosing to collapse is decidedly unappealing. (“Shock and Awe”)
Linton says that “writers are needed who can demonstrate that success in terms of disability is more than a personal triumph over physical adversity; it is a life that consciously reckons with the social forces that oppress and control” (113). If these social forces that Linton refers to are examples of the rational world paradigm reinforced through the medical model of disability, then Stecker, through his ongoing narrative, is showing that a new interpretation of disability is not only possible, it’s happening.
Stecker is someone who, through his storytelling, can give the MS community a narrative paradigm that resonates with meaning. The privileged arguments of the rational world paradigm need the balance of an alternative view, which can provide insights most valued by the disabled. This sharing of experience creates knowledge, and that “epistemic authority provides a good reason for encouraging disabled people to speak … and for nondisabled people to listen when they do” (Wasserman et al).
For any significant social change to take place, Linton argues, voices such as Stecker’s will need to be admitted into the canon (113). By analyzing Stecker’s blog through Fisher’s narrative criticism, I hoped to establish the importance of such a paradigm in the disability rights movement. What has become evident, I think, is that Stecker has emerged as a key storyteller for the disabled community. As he reminds his audience:
By concentrating on what we have rather than what we've lost, on those who have shown us kindness rather than those who have been harsh, on this very moment rather than an irretrievable past or an unpredictable future, we can shape a reality that transcends the parallel universes of the healthy and the ill and find a place of self fulfilling satisfaction, where a diminished body needn't dictate a diminished existence. (“Parallel Universes”)
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 I would add to that Mikhail Bakhtin’s theory of utterances to that because we have always been and will always be involved in a shared dialogue. It is interesting to note that Bakhtin was diagnosed with osteomyelitis as a child. The degenerative bone disease ultimately led to the amputation of his right leg at the groin when he was an adult, which others have suggested led to his concepts about the grotesque and the idea of the Other (Bell 88).