Stigma and Hiding Disability

[caption id="attachment_264960" align="alignleft" width="495"] President Franklin Delano Roosevelt's wheelchair[/caption] When the memorial to President Franklin Delano Roosevelt (FDR) in Washington was completed in 1997, it featured rooms dedicated to each of his four terms as president. 1 The memorial was designed to portray FDR “as most people saw him, with only a hint of his disability.” 2 The designers “considered that if FDR did not show his disability to the public in his life, the memorial shouldn’t either.” 2 In 2001, in response to changing views of disability and with the support of most of his grandchildren, a fifth room was added to the memorial that includes a statue of FDR seated in the wheelchair he designed. 2 The statue is “set away from a nearby wall to ensure total access,” making the chair and his disability prominent. 2 While FDR’s disability was widely known, the extent of his impairment was not, due to his choices about what to disclose and the coordinated efforts of those around him. Among the hundreds of thousands of photographs of FDR, only four show him in a wheelchair, and only two of the 35,000 in the Presidential Library depict him in that way. 2,3 Additionally, “No newsreels show him being lifted, carried, or pushed in his chair. Among the thousands of political cartoons and caricatures of FDR, not one shows the man as physically impaired….” 3 A photo of FDR fishing from a small boat is the only known photo in which his KAFOs can be clearly seen. 3 The portrayal of FDR’s disability in the memorial reflects changes in the way disability has been viewed in our society. It also provides an opportunity to consider how individuals with impairments consider these perceptions when making decisions about how to navigate social situations. A “Splendid Deception” Hugh Gallagher’s 1985 biography of FDR describes in detail efforts to minimize exposure of his disability and the reasons for them. According to Gallagher, “Roosevelt dominated his times from a wheelchair; yet he was simply not perceived as being in any major sense disabled. This was not by accident. It was the result of a careful strategy of the President. The strategy served to minimize the extent of his handicap, to make it unnoticed when possible and palatable when it was noticed. The strategy was eminently successful…this was FDR’s splendid deception.” 3 Deception of this sort was an understandable response to extremely negative perceptions of disability during a time when physical impairments were considered shameful. Laws passed in many cities during the 19th century made it illegal for individuals with visible disability to be seen in public. In part, these ordinances, now known as “Ugly Laws,” were intended to reduce begging on streets, a common practice for those with disability and limited employment options. 4 The wording of an 1867 San Francisco law highlights the stark differences between the attitudes toward physical impairment then and now: “Any person, who is diseased, maimed, mutilated, or deformed in any way, so as to be an unsightly or disgusting object…shall not…expose himself or herself to public view.” 5 These laws remained on the books well into the 20th century, with the last recorded arrest for violation occurring in 1974. 4 With laws such as these reflecting a deep societal aversion to disability, it is understandable that FDR would prioritize concealing his disability as much as possible. When asked by his physical therapist what he hoped to achieve from therapy he responded, “I’ll walk without crutches…. I’ll walk into a room without scaring everybody half to death. I’ll stand easily enough in front of people so that they’ll forget I’m a cripple.” 3 Today, we may take openness, acceptance, and even promotion of disability for granted, but despite significant changes in attitudes and legal policy, individuals with impairments are not afforded this privilege. They must make difficult decisions related to their identity and the transparency of their condition. Stigma Sociologist Ervin Goffman’s 1963 seminal collection of essays, Stigma: Notes on the Management of Spoiled Identity, continues to inform understanding about how individuals manage the perception of their differences. Goffman defined stigma as “an attribute that is deeply discrediting” and “an undesirable differentness from what we anticipated.” 6 The stigmatized person is “reduced in our minds from a whole and usual person to a tainted, discounted one.” 6 Despite differences in the visibility of their disability and expectations in different contexts, individuals with physical impairments must manage the perceptions of others in every social interaction. Disability not only affects our view of who they are as individuals, but also our expectations for what social and vocational roles they can fill. According to Goffman, “we believe that a person with a stigma is not quite human. On this assumption we exercise varieties of discrimination, through which we effectively…reduce his life chances…. We tend to impute a wide range of imperfections based on the original one.” 6 Individuals with a disability can employ various strategies to keep others from having to deal with their differentness and to minimize the negative consequences of it, including hiding or disguising the impairment as much as possible. According to Goffman, acceptance of stigmatized individuals by “normals” depends on the latter group “not being pressed past the point at with they can easily extend acceptance.” 6 “Good adjustment” by stigmatized individuals “means that the unfairness and pain of having to carry a stigma will never be presented to them; it means that normals will not have to admit to themselves how limited their tactfulness and tolerance is…. The stigmatized individual is asked to act so as to imply neither that his burden is heavy nor that bearing it has made him different from us; at the same time he must keep himself at that remove from us which assures our painlessly being able to confirm this belief about him. Put differently, he is advised to reciprocate naturally with an acceptance of himself and us, an acceptance of him that we have not quite extended to him in the first place. A phantom acceptance thus allowed to provide the base for a phantom normalcy .” 6 This understanding of the social consequences of disability sheds light on FDR’s decisions regarding his physical impairment. According to Gallagher, “In a very real way a great nation…does not wish to think of its leader as impaired. Roosevelt was undeniably and obviously a crippled man…. Crippled or not, the nation wanted this man…as its leader. So an agreement was struck: The existence of FDR’s handicap would simply be denied by all. The people would pretend that their leaders was not crippled, and their leader would do all that he could not to let them see that he was.” 3 Components of Stigma Not all differences are noticeable or important in all situations or to the same extent in different ones. In describing stigma as several interrelated components (Figure 1), Link and Phelan pointed out that “there is a social selection of human differences when it comes to identifying differences that will matter socially.” 8 Describing stigma as an attribute, condition, or mark places the emphasis on the stigmatized person, while the term “label” acknowledges that stigmatization is identified and chosen as part of social processes. 8 Our words reflect deeper attitudes, and according to Link and Phelan, “terms like ‘attribute,’ ‘condition,’ or ‘mark’ imply that the designation has validity. In contrast the word ‘label’ leaves the validity of the designation an open question….” 8 The attitude of others rather than the stigmatizing difference itself is what determines how individuals with difference are perceived. Quickly identifying differences that we believe matter and making assumptions about the traits and capabilities of individuals with those differences “provide people with a means of making shorthand decisions that free them to attend to other matters.” 8 However, the cost of this convenience is often the reinforcement of negative attitudes and inaccurate beliefs that the broader society or patients themselves may have. [caption id="attachment_264959" align="alignright" width="500"] Figure 1[/caption] A Vicious Circle It is easy to view individual difference as the beginning of the stigma process. However, negative attitudes toward difference in general and specific differences in particular often exist prior to our interaction with individuals who have those differences. These attitudes and assumptions then influence our views of specific individuals. Link and Phelan explained that “once differences are identified and labeled, they are typically taken for granted as being just the way things are—there are black people and white people, blind people and sighted people, people who are handicapped and people who are not. The taken-for-granted nature of these categorizations is one of the reasons that designations like these carry such weight….” 8 Additionally, “substantial oversimplification is required to create groups.” 8 Stereotyping and separation between us and them can occur without requiring us to make a conscious decision to stigmatize others. These preconceptions can then influence our experience in social interactions, causing us to see the evidence of discrediting traits we’re expecting. To stigmatized individuals, these attitudes are a part of their social identity, and something they must consider during interactions in which we engage more blithely. Passing and Covering Given its serious implications and impact on life chances, stigmatized individuals often carefully control the information about and visibility of their disability. Concealment of their disability may allow them to “pass” as nondisabled. Goffman pointed out that “since the physical equipment employed to mitigate the ‘primary’ impairment of some handicaps understandably becomes a stigma symbol, there will be a desire to reject using it.” 6 (It is likely that this affects adherence in O&P more than most of us realize.) To this end, the Secret Service carefully planned FDR’s excursions from the White House. “The President was never lifted in public.... He was never seen in public seated in a wheelchair.” 3 Transfers to and from a vehicle were performed in private or behind screens. Ramps were built to elevate his vehicle and allow him to speak from it. FDR could walk for short distances with a significant amount of assistance, but it required extreme effort on his part. FDR developed a “technique for walking…for the sake of appearance. It was not in any sense a practical means of locomotion…. It would have been much more sensible to use crutches…. Crutches, however, are a universal symbol of the cripple. They arouse fear, revulsion, and pity….” 3 Goffman distinguished between visibility and obtrusiveness. 6 When passing is not possible, individuals may choose to cover their disability, making it less prominent. “Persons who are ready to admit possession of a stigma…may nonetheless make a great effort to keep the stigma from looming large…to make it easier for himself and the others to withdraw covert attention from the stigma.” 6 FDR went to great lengths to reduce the visibility of his orthoses, including having his pants cut long to allow more coverage of them while seated and painting them black so they were harder to detect. 3 His upbeat repartee—a strategy refined during therapy sessions—allowed him to mask the effort of walking and provided a distraction for his audience. 3 Clinical Applications We refer to our patients as BKs or paraplegics because that label efficiently categorizes them according to the relevant services we provide. We give less thought to how that convenient oversimplification limits our understanding of more nuanced aspects of their capabilities. Person-first language reminds us that our focus is on them as individuals, not on their impairments. Despite acknowledgement for decades of the importance of this change in terminology, traditional wording is still prevalent in clinical and scholarly publications. Individuals with disability are free, of course, to choose any way of referring to themselves and their impairments. For clinicians and researchers, committing the added time, focus, and ink required by person-first language can serve as a reminder of the importance of affirming each patient’s dignity and autonomy. Some assumptions about the consequences of physical impairments based on experience and published reports are appropriately part of clinical decision-making and may allow us to more accurately anticipate a patient’s needs. For example, we can often accurately predict that independent ambulation is unlikely given the extent of paralysis or injury at a specific spinal level, even without a thorough evaluation of the patient. We can often anticipate more realistic functional outcomes than can patients with no prior exposure to or experience with their disability. However, variability in physical capabilities, disease progression, patient motivation, environmental factors, and many other important elements of each patient’s experience must be understood and carefully considered. Awareness of and transparency regarding our assumptions and the sources of our professional opinions allows us to consider the typical capabilities of individuals with a particular disability and evaluate them responsibly to determine how their abilities may differ from our expectations. Passing and covering are not pathological responses to stigma—they are strategies we all adopt to some degree. We and our patients have the same range of options when navigating the social implications of characteristics considered unfavorable, and their choices are ones we might make if we found ourselves in a similar situation. Goffman concluded that “stigma involves not so much a set of concrete individuals who can be separated into two piles, the stigmatized and the normal, as a pervasive two-role social process in which every individual participates in both roles, at least in some connections and in some phases of life. The normal and the stigmatized are not persons but rather perspectives.” 6 Awareness of our perceptions and assumptions and interacting with sensitivity and grace can create relationships that are mutually affirming, and clinical interactions that honor the dignity of those we work with. John T. Brinkmann, MA, CPO/L, FAAOP(D), is an associate professor at Northwestern University Prosthetics-Orthotics Center. He has over 30 years of experience in patient care and education. References https://www.nps.gov/frde/learn/historyculture/aboutfrde.htm https://www.nps.gov/articles/000/prologue.htm Gallagher, H. G. 1985. FDR’s Splendid Deception: The Moving Story of Roosevelt’s Massive Disability—and the Intense Efforts to Conceal It from the Public . New York: Dodd, Mead. https://www.nationalgeographic.com/history/article/history-of-ugly-laws-america-disability https://books.google.ca/books?id=yJYz_wheFEIC&pg=PA579#v=onepage&q&f=false Goffman, E. 2009. Stigma: Notes on the Management of Spoiled Identity . Simon and Schuster. Weiss, M. G., J. Ramakrishna, and D. Somma. 2006. Health-related stigma: Rethinking concepts and interventions. Psychology, Health & Medicine 11(3):277-87. Link, B. G., and J. C. Phelan. 2001. Conceptualizing stigma. Annual Review of Sociology 27(1):363-85.

Stigma and Hiding Disability

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