In the Kingdom of the Sick: A Social History of Chronic Illness in America

by Laurie Edwards

  “There’s not a similar awareness of the challenges facing sick people, nor a sense that people with chronic illness should be able—that positive action should be taken to encourage them—to participate in society,” Cross says. When he was an undergraduate, his college had a scholarship program for disabled students. Funds were limited to supplying education-specific resources. For example, a blind student could use the money for an optical scanner, or a deaf student could hire someone to transcribe lectures. Though these services are important and useful, the scholarship program didn’t address the needs of patients who might be disabled by chronic illness in the same way.

  When a person has a physical disability that requires the use of a wheelchair, cane, or other assistive device, he or she benefits from basic rules and hard-fought parameters that have been put in place as accommodations. This does not always happen as it should, but from college disability services to employment programs, we are more equipped to handle the needs of people with physical handicaps. However, the invisibility of many chronic illnesses muddles these basic ideas of what able-bodied looks like: a patient might not “look sick” if he or she has a congenital heart disease or advanced rheumatoid arthritis, but he or she could have needs very similar to those of the person with a more obvious physical problem.

  With visible disability, noticeable symptoms are both cause for comment and discrimination as well as the “evidence” through which individuals can access resources and accommodations. With invisible illness, the very same lack of obvious symptoms that allows us discretion over when to disclose illness can lead to further isolation or alienation. As a college writing instructor, I’ve seen firsthand how challenging it can be to help students with chronic illnesses (as well as mental health issues) because the procedures simply aren’t always in place to support them the way they are for physical disabilities. Also, if students don’t opt to disclose their illnesses to me and don’t otherwise look sick, I often don’t know there is a problem until the student has missed several classes and is behind and overwhelmed—which jeopardizes his or her health situation further.

  “There is a gray area between the disabled and the chronically ill. It is a different conceptual category,” says Dr. Joe Wright, a resident in a Boston teaching hospital who has researched the early HIV/AIDS movement and patient advocacy extensively, and who regularly treats patients with chronic disease. “It’s the nature of a changing condition versus a stable condition; chronic illness is not like disability in the sense that sometimes it’s stable-disabling, sometimes relapsing-remitting, sometimes progressive … if you’re talking to people with ALS [amylotrophic lateral sclerosis] who are progressively, relentlessly disabled, it has got to be different than living with stable spinal cord injury or relapsing-remitting multiple sclerosis,” he says.

  Furthering complicating the scenario, for some patients, the stigma of the word disabled itself prevents them from claiming ownership of the term, even if it might accurately describe their experiences. In her work helping professionals with chronic illness stay employed, Rosalind Joffe knows how important the language we choose to describe our symptoms is. While terms like “disability” or “illness” have varying meanings and associations for different people, Joffe says the most important thing to focus on is how that definition fits into a person’s self-concept: is it a positive or negative force?

  “Language evokes meaning,” she says. She doesn’t like to use the term “disability,” in fact, preferring the term “debilitating,” which often more accurately depicts the status and implications of her clients’ chronic health conditions.

  When clients use certain language or terms, she asks them what those words means to them, and how it feels when they are applied to themselves.

  “Sometimes you have to really own these terms,” she says, focusing on the intent behind using particular terms over others. Is her client trying to speak to a boss and communicate needs? Is it a discussion about necessary accommodations in the workplace? That is when these distinctions extend beyond self-concept into the pragmatic, when the internal associations of language have repercussions in the external world.

  For Aviva Brandt, applying this language to her own life remains challenging.

  “‘Disability’ has a negative connotation because it focuses on the things we cannot do that ‘normal’ or ‘healthy’ people can. And I’m hesitant to use it, despite the fact that my illness gives me many limitations, because my health problems seem so minor compared to the ‘truly’ disabled, like a quadriplegic,” Brandt says. “There’s a … sense of shame for me (and for many others, I think) about admitting a disability. I just applied for SSDI, and it was depressing and a little embarrassing to do so. I’m depressed about it because I prefer to live in denial that this is going to be a long-lasting or permanent condition. And I’m embarrassed because even though rationally I know SSDI is an insurance policy that I paid into since I got my first job at age fourteen, it feels like asking for a handout. Like it’s trying to go on welfare.”

  Like many other patients, Brandt finds herself caught between the physical needs of her illnesses and the stereotypes and stigmas that surround notions of who is “normal” and who is not. Even when we know deep down that normal is always a relative term, many of us have days when we want nothing more than to just look or feel normal, to pass through the day in the presence of the healthy and go undetected—a visitor’s pass into the kingdom of the well, if you will. We want people to understand, but in order to understand they need to be able to “see” illness in a meaningful way—and that type of vulnerability is extremely difficult.

  In Stigma: Notes on the Management of Spoiled Identity, sociologist Erving Goffman explores the perception of self and social identity. He describes three different kinds of stigma: that which comes from physical deformities and abnormalities; that which comes from differences in individual character, passions, beliefs and lifestyle, or mental/intellectual differences; and that which comes from race, nation, and religion.4 Stigma divides us into those who Goffman calls “normals” and those who are are not “normals,” and often it is the perception of the stigmatized individual as an outsider that makes the difference.

  Though attitudes about lifestyle, sexual orientation, and physical and mental disabilities have shifted greatly since Goffman penned his 1963 treatise, it is clear how these various types of stigma influence the modern-day experience of living with illness. True, we have come a long way since the carnivalesque sideshow oddities and outcasts depicted in Tod Browning’s 1932 movie Freaks or in cautionary tales like The Elephant Man, but still stereotypes remain. People living with disabilities and obvious physical problems are acutely aware of how the able-bodied world encounters them, just as people who are morbidly obese know when people are staring at them, whispering, or making callous remarks. However, since many chronic illnesses are invisible, patients not only perceive differences between themselves and the healthy but must also navigate what it is like to fall short of perceived expectations because of their limitations. From the healthy-looking heart patient who gets grief for using a handicapped parking placard to the hard-working employee whose performance is lagging due to an acute flare of an autoimmune disease no one knows she has, invisibility affords many opportunities for alienation.

  It is easy to brush off these permutations as merely quibbling over words, but from a quality-of-life standpoint, they matter.

  Like Aviva Brandt, Duncan Cross has grappled many times with whether or not his disease makes him disabled—and what the implications of that classification are personally and culturally. “Plenty of chronically ill people refuse to think of themselves as ‘disabled,’” he says, since doing so might be construed as giving up. “This is an unfortunate tendency: first because it reinforces the stigma against people who do view themselves as disabled, which is just an ugly thing to do in any case; but second, and more perniciously, it creates an expectation that we should conform to the norms
for healthy persons.”

  “To tell somebody with active Crohn’s or lupus or even diabetes that they’re expected to behave like someone without that disease is absurd and cruel,” Cross says. “And we do it simply because we’re afraid of the stigma associated with the label ‘disabled.’ I was, at least for a time, guilty of this myself … I only really got over it in 2003, when I had a massive flare that fully incapacitated me for several months. At that point, I couldn’t pretend I was anything other than disabled.”

  Yet for all the differences in visibility and even philosophy, disability and illness are inextricably intertwined. For example, once Cross was comfortable identifying himself as disabled, he could start seeing some of the benefits that membership to this community offered someone with chronic illness. Namely, he could tap into what he sees as a deep tradition of activism and identity.

  “In a strange way, it helped me feel like a part of something,” he says. Before he was willing to call himself disabled, he was stuck as a “normal” person on the outside and someone grappling with incapacitating physical problems on the inside. As what he calls a very marginalized normal person, he couldn’t identify with normal people’s lives, even though he was supposedly “normal” himself.

  “Now I am a very mainstream marginalized person, and I feel a lot of solidarity with people who are also disabled (whether they self-identify as such or not). Whatever the stigma of being disabled, this is a better way to think of myself than aspiring to unobtainable normalcy,” he says. Rather than serving as a sign of giving up, claiming disability gave him the freedom to carve out a life characterized by more realistic expectations, a situation in which he could find success.

  “For me, personally, and maybe for others, I think the [disability rights] movement also provided a vocabulary that I can use to talk about the place of chronically ill people in society,” he says.

  The fact that people with chronic illness are having more conversations about workplace accommodations, or are more vocal and active in disease outreach and advocacy, or have a working vocabulary to discuss their needs and challenges is due in no small way to the obstacles people with disabilities cleared, and to the disability rights activism of the 1970s. At the same time the doctor-patient relationship underwent significant changes, traditional views on gender, equality, and diversity were also thrown asunder. Under common goals for respect, access to employment, and the ability to lead productive lives free from stigma, the disability rights movement unified itself in ways the chronic illness community has yet to do, even decades later. The legacy of those gains, though, has a very real presence in the daily lives of millions of us.

  The Civil and Disability Rights Movements (1960s–1970s)

  “People with chronic illness are now among the living, we can talk about it,” says Cynthia Toussaint, whose complex regional pain syndrome (CRPS) and intense chronic pain classify her as both chronically ill and disabled.

  “I notice it more because I am disabled … clearly we have come a long way; there are more accommodations than ever before,” she says. With decades of health struggles to draw on, she feels that people with chronic illness, disabilities, and pain are more a part of mainstream society. As an actor, in addition to being the founder of For Grace, a nonprofit organization geared toward helping women in pain, she sees the breakthroughs, such as more plentiful roles for wheelchair-bound actors, as well as the ongoing challenges we still face when it comes to gender and pain.

  “People with chronic illness were let out of the closet by the movement in the sixties and seventies … all this empowerment has certainly helped. We deserve dignity and respect and that movement has given us that,” she says.

  The disability rights movement Toussaint and Cross both speak to yielded small, incremental gains in the nineteenth and twentieth centuries and emerged in the 1970s as a cross-disability rights activism. This modern movement operated (and continues to operate) on the principles that “people with disabilities are human beings with inalienable rights and that these rights can only be secured through collective political action.”5 These principles parallel those of the civil rights movement and women’s health revolution that surfaced during the 1960s. In fact, the Civil Rights Act of 1964, the critical piece of legislation that banned discrimination based on race in public accommodations and employment and in federally assisted programs, would serve as the model for the disability rights movement.

  Social movement spillover, which Samantha King defines in Pink Ribbons, Inc. as “when new movements grow from the foundations of existing movements and borrow from their strengths and strategies,”6 figures prominently in the dramatic shift in patient activism in the early 1980s, but it also speaks to the social turmoil and social progress of the 1960s and ’70s. The idea that minorities should have access to the same opportunities and privileges as whites, and should be given the appropriate resources to help this happen, would translate when it came to evaluating the ability of people with disabilities and illness to lead productive lives in mainstream society.

  For patients, an important step in the civil rights movement was Title VI of the Civil Rights Act of 1964, which prohibited discrimination on the basis of race, color, and nation of origin from federally funded programs. This paved the way for desegregation of hospitals, just as it did for schools and other welfare agencies receiving federal funding. In a commentary piece in the Journal of the National Medical Association in 1965, then assistant secretary of the U.S. Department of Health, Education, and Welfare James Quigley asserted that segregation is but one form of discrimination when it comes to the access and delivery of health services. He wrote, “Restricting the staff privileges of Negro physicians to treating Negro patients, avoiding the promotion of Negro nurses to positions in which they would supervise white nurses, assigning rooms on the basis of racial rather than medical considerations—these and other practices which are all too widespread in all parts of the country, constitute discrimination just as separate entrances and wards and the denial of services to Negroes constitute segregation.”7 He urged his colleagues to understand that compliance must be in both the spirit and the letter of the law, and painted a comprehensive picture of what true compliance would look like in a health care setting (emphasis is his): all patients assigned to rooms regardless of race, color, or national origin; all physicians given consideration for staff privileges; all facilities, such as operating rooms, waiting rooms, cafeterias, and lounges, available to all; and all training programs for professional development available to all staff.8

  The civil rights and disability rights movements, though governed by different goals and objectives, share the common quest for dignity and respect that still characterizes many of the battles we see in health care today. More specifically, the move toward desegregating hospitals meant improved access to ongoing care for patients with chronic diseases. Remember that the gains in life-sustaining technology and ICUs in the 1950s and ’60s resulted in more people starting to live longer with and “die longer” from degenerative diseases. For minority patients, the incidences of type 2 diabetes, high blood pressure, and infant mortality were alarming, and in response, civil rights activists set up neighborhood health clinics to start to address these health crises. These local clinics of the 1960s and ’70s sprang up to address immediate needs, but they also spread an important message, one that is particularly prescient in light of current debates over health care reform: health is a right, not a privilege.

  A major yet unrealized goal of the desegregation agenda was a push for universal health care.9 The desegregation of hospitals did not happen instantly or seamlessly, but this move was a crucial turning point in the motion toward equal and appropriate access for all, something we still struggle with almost five decades later as the gap between rich and poor widens, and as minority populations still live with disproportionate rates of many chronic diseases.

  Disability rights activists had secured several gains prior to the civil rights m
ovements—schools and colleges for the blind and deaf, wheelchair patents and development, the founding in 1921 of the American Foundation for the Blind, the Social Security Act of 1935, which gave federal assistance to blind people and disabled children, and many more. They did so in response to a long-standing prejudice against disability. For example, the 1912 publication of Henry Herbert Goddard’s book The Kallikak Family: A Study of the Heredity of Feeble-Mindedness, which tied disability to immorality and claimed both were genetic, further propelled the burgeoning eugenics movement. Such propaganda and hysteria gave way to massive abuses of human rights, from forced sterilization of people with mental disabilities to institutionalization.10

  What the civil rights movement gave disability rights activists was a frame for their protests, one that resonated with American society at the time, a society very much in upheaval and attuned to sweeping changes in human rights. The frame borrowed from the civil rights movement “included the notion that places should be accessible to all groups; the notion that all citizens should be able to exercise their political power through the voting booth; the notion that discrimination in hiring, promotion, or firing was not acceptable; and the notion that separate facilities were inherently unequal.”11 Shouldn’t people with disabilities expect the same rights?

  By 1970, an estimated 10 percent of the population identified themselves as being disabled, but politically, they weren’t organized in a visible, active group, and the social barriers they faced, despite specific disabilities, were still significant.12 A precursor to the heyday of disability rights were the Social Security Amendments of 1956, which created the Social Security Disability Insurance (SSDI) program for disabled workers between the ages of fifty and sixty-four. In 1958, benefits were extended to the dependents of disabled workers. Another key goal was the pushback against rote institutionalization of developmentally disabled individuals. In 1963, President John F. Kennedy’s address to Congress that called for a reduction in the number of mentally disabled people living in institutions and for improved measures to help them function in society was considered by many activists to be a de facto call for deinstitutionalization and for an increase in community services. When Cynthia Toussaint talks about marginalization and being “among the living,” the roots of her observations stem from the push to bring people with severe disabilities back from (often inhumane) institutions into society’s fold.