When Aviva Brandt, a forty-three-year old former Associated Press reporter, suddenly became ill in July 2007, she expected to either feel better quickly or receive a diagnosis for an ongoing problem. What started out as pneumonia, chest pain, and a hospitalization rapidly turned into ongoing, debilitating pain and fatigue, frequent infections, and other immune and autoimmune complications. More than four years later, she has undergone numerous tests and consulted with specialists in rheumatology and neurology and still has not received a final diagnosis that accounts for her extreme fatigue, diffuse pain, and various neurological symptoms.
“Healthy people don’t understand how a person can be sick for months and years and have doctors still not know what’s wrong with her. Some people get a funny look in their eye, like they think it must all be in my head because otherwise wouldn’t I have a diagnosis by now? Medical science is so advanced, with all this technology and such, so how come good doctors can’t figure out what’s wrong with me?” Brandt asks.
She desperately wants a specific diagnosis, a URL she can pull up and recognize herself in. Beyond the intellectual disappointment of not getting an answer, more pragmatic questions plague her: Would her current medication regimen differ if she knew what was wrong? What else could she be doing to improve her health and quality of life? Will her lack of a specific diagnosis hamper her ability to receive much-needed Social Security Disability Insurance benefits? And of course, there is the niggling frustration of how to answer the inevitable question directed at her from friends, family, and just about everyone she comes into contact with:
So, what’s wrong with you, anyway?
Brandt’s concerns reveal just how powerful—and, at times, dangerous—labels and categories are when it comes to living with symptoms. Some patients also take issue with the “illness” moniker itself, preferring the more benign “condition.”
Dr. Sarah Whitman, the psychiatrist who specializes in treating people with chronic pain, finds such semantic distinctions critical.
“In my work, I don’t use the term chronic pain patient, but insist on patient with chronic pain. It’s a small difference in phrasing, but one that reflects what you see first—the disease or the person,” she says. It’s a sentiment that stretches across diagnostic boundaries. The term PWD, person with diabetes, is a common one in the diabetes online community, rather than the term “diabetic,” as in “He is a diabetic.” A person has diabetes; a person is not diabetes.
When I posed the distinction between illness, disease, and condition to patients with diverse health problems on my blog and in interview questions, responses ran the gamut: Some patients preferred to use “illness” because it was less scientific-sounding and clinical than “disease.” On the other hand, other patients saw value in using the word “disease” since it conferred a type of validity and justification for their chronic pain that other words could not. For example, people living with migraine disease confront the claims their constant pain is “just a headache,” much the way patients with chronic fatigue syndrome are told they are “just tired.” (The rest of us get headaches and feel tired, so is what makes these complaints different simply a question of fortitude?) When I’m speaking about my health, I tend to describe PCD as a rare genetic disease, one that is somewhat similar to cystic fibrosis. The use of the word “disease” hasn’t been a conscious one, but in retrospect I do see how the word offers some built-in credibility I didn’t have when I was incorrectly diagnosed with “atypical asthma.” Since practically no one has ever heard of PCD—including health care professionals, who, even if they have heard the term in passing, don’t know much about how it works or how it is managed—I find the aspect of defining one disease by comparing it to another more interesting. Cystic fibrosis isn’t nearly as common as, say, heart disease, diabetes, asthma, or arthritis, but it is more common and much more recognized by the general public than PCD is, so I leverage that familiarity.
“I tend to use ‘illness’ more than ‘condition’ or ‘disease,’” Brandt says. “To me, ‘condition’ refers to something I live with that doesn’t have much impact on my daily life. I have many allergies and asthma, but because they’re almost entirely under control, I consider them a condition I have. No big deal. Sure, there’s places, animals, and foods I need to avoid, but I’ve been living with that my entire life and it’s second nature to the point that it’s essentially something I deal with subconsciously.”
I feel the same way about my thyroid condition: I take a daily pill, I check my thyroid hormones regularly through blood work, and beyond that, I don’t give it too much thought. My medication controls the symptoms, and as long as I adjust my dosage when needed, it has very little bearing on the activities of my daily life. Naturally, the diseases that do incapacitate me and have regular, direct influence on my quality of life, my productivity, and my relationships are the ones I focus on; there is nothing as primal and immediate as the act of drawing breath.
Aviva Brandt also emphasizes the quality-of-life aspect in her perspectives on illness and her semantic choices. “My mystery illness, on the other hand, affects every single part of my life. I can’t forget it or ignore it. It affects my entire family, especially my young daughter, who went from being home with mommy all the time to full-time daycare at age two and a half when I suddenly got too sick to take care of her on my own at home,” she says. “I like the word ‘disease,’ and will probably use it if and when I finally get a diagnosis. But to me, the word implies that you know what you have. It’s a scientific word in some ways. And since I’m in limbo-land, it doesn’t feel like I have the right to use it yet.”
Patients don’t want to be reduced to a laundry list of symptoms or a disease label, yet science matters, and the words we choose to describe and categorize illness have enormous reach. A label can bestow many things: a medical billing code for insurance purposes; a course of treatment or medication; entrée to a particular community of like patients; validation for physical symptoms. On the other hand, the lack of a label or classification radiates complexity outward, too, from personal doubts and skepticism to difficulty securing necessary benefits or work accommodations. Ambiguity is often the enemy of patients.
The relationship between illness and disability is equally complicated. Not everyone with a physical disability has a chronic illness, and not everyone with a chronic illness is considered disabled by his or her symptoms; but there is a lot of crossover. Writer Susan Wendell makes a useful distinction between the “healthy disabled” and the “unhealthy disabled.” The healthy disabled are those whose physical symptoms and limitations are fairly stable and predictable. She writes, “They may be people who were born with disabilities … or were disabled by accidents or illnesses later in life, but they regard themselves as healthy, not sick, they do not expect to die any sooner than any other healthy person their age, and they do not need or seek much more medical attention than other healthy people.”1 Population in this group is in flux, since some conditions do progress and, as Wendell notes, some people with relatively stable disabilities have other health conditions; but in general they are “healthy.”
When I think of Aviva Brandt’s ongoing medical and testing odyssey and the experiences of patients with diseases as diverse as multiple sclerosis to arthritis and many others, it is clear Wendell is onto something. People with chronic illness may not reside permanently in the land of the “unhealthy disabled,” but many of us spend enough time there that we know this much: we do not fully belong in the world of the healthy, either. While people living with disabilities may not spend as much time actively “sick” as people with some chronic illnesses do, marginalization is often all too familiar.
“The metaphor that I keep returning to is ‘curb cuts’; if you’re an able-bodied person navigating a city sidewalk, you probably don’t notice curb cuts, but if you’re in a wheelchair they make all the difference in the world,” observes Duncan Cross (not his real name), a thirty-something patient with Crohn’s disease, an autoimmune disease that affects the bowel and gastrointestinal tract. “Lots of places used to build sidewalk curbs with total disregard for that fact, because they had no awareness of the wheelchair user’s experience. Finally, folks in wheelchairs were able to get the message through—those three inches of concrete might as well be Hadrian’s Wall, from their perspective. And most places started building their sidewalks differently as a result,” he says.
With chronic illness, the solutions, like the symptoms, are not that concrete. As Wendell writes, “Many of us with chronic illnesses are not obviously disabled; to be recognized as disabled, we have to remind people frequently of our needs and limitations. That in itself can be a source of alienation from other people with disabilities, because it requires repeatedly calling attention to our impairments.”2 She’s right: if you’re part of a community that has fought for decades to gain footing in personal and professional realms, as the disability rights community has, then the experience of deliberately naming problems and (necessarily) demanding recognition and accommodations for them could run contrary to those goals. The unpredictability of symptoms and their severity that sets chronic illness apart from certain physical disabilities can also make for “unreliable activists,” individuals who might be able to run workshops or attend policy meetings one day and be bedridden the very next.3
“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.
“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 movements—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.
In what is considered the first true piece of federal disability rights legislation, the Architectural Barriers Act of 1968 was passed, stating that all federally constructed buildings must be accessible to people with physical disabilities.13 By now, the parallels to the civil rights movement are obvious: regardless of race, national origin, color, or physical or mental disability, each individual has a rightful place as a productive member of society. Here we begin to see the “curb cuts” becoming a mandate, a literal physical entry point for people who previously had been forced to linger on the sidelines of society.
Proponents of disability rights began to realize the true power of the courts to bring about change. By 1971, court cases and legislative amendments focused on deinstitutionalization and on bringing those with impairments beyond blindness into workshop systems and improving employment options. More court battles in the early 1970s gave advocates fodder to push for the Education for All Handicapped Children Act of 1975 and solidified the courts as a meaningful avenue through which to enact changes in disability rights. Throughout the early 1970s, disability groups, independent-living centers, legal coalitions, and associations grew in strength and purpose, filing lawsuits, calling for change, and exposing appalling conditions of those living in institutions.
Each successful step added momentum and confidence to their platform, but frustration with the lag in implementing these key victories reached a crescendo. The benchmark legislation of the modern-day disability rights movement was the Rehabilitation Act of 1973 and its Section 504. Section 504 prohibited programs that receive federal funds from discriminating against otherwise qualified individuals who happened to be handicapped.14 It also opened employment and educational opportunities on an unprecedented level for people with disabilities, ultimately paving the way for the seminal Americans with Disabilities Act of 1990. Disability rights activists saw the power of the legislation and through grassroots mobilizations made its passage a priority.
As groundbreaking as the Rehabilitation Act and Section 504 were, they were also time-consuming and expensive to enact, which gave institutions the time and excuses to delay adopting these policies. In 1977, mass demonstrations pushed for the implementation of the Rehabilitation Act and Section 504, which had been passed into law four years earlier. By this point in history, Americans were used to seeing protests: protests over voting rights and against segregation, against the Vietnam War, or for women’s rights, for example. Never before, though, had groups of disabled citizens banded together in mass sit-ins and protests with such force. Sit-ins were coordinated in cities across the country, but the sit-in staged at the offices of the U.S. Department of Health, Education, and Welfare in San Francisco lasted weeks, with more than one hundred disabled protesters occupying the building until their demands were met.15 The victory was, of course, an emotional triumph for the protesters, but it translated into so much more. What are considered “central disability rights concepts” (such as reasonable modification, reasonable accommodation, and undue burden) became the foundation for future federal laws involving disability and employment, and stem from the events of 1977.16
Barbara Kivowitz wasn’t a patient with chronic pain when she lived through the disability rights protests in the 1970s, but she appreciated the changes they wrought from a professional perspective. Working in the corporate world in the 1980s and ’90s, she witnessed an evolution in understanding of disability and in considering employees as workers, not as people with disabilities.
“There was just a much greater appreciation of looking at people’s competencies … and a commitment to making accommodations where needed,” she says. “The disability rights movement had a huge impact over the course of decades. There was unification, there was not differentiation between blindness, paralysis, [etc.],” she adds.
“My perspectives are [from working] in Boston and San Francisco so they are a bit biased, but what I see at least in those areas now is that people are much more conscious and much more cautious about issues of discrimination. People who have more complicated requirements may not be hired as quickly as someone who doesn’t, but that is very much a behind-the-scenes factor,” she says.
This last statement points to a reality Kivowitz now experiences in her own daily life: her chronic pain is an invisible condition with significant influence on her ability to work when it flares. As an independent consultant, she has the flexibility now to stop working when her health demands it, but she knows from her corporate experience that this flexibility is hard to come by for many.
The unification she saw through the lens of the workplace is actually the most striking aspect of the disability rights movement: the abandonment of impairment-specific agendas for more universal gains.
Previously, specific disability groups focused on equally specific goals and entitlements, rather than trying to change the terms through which society viewed all people with disabilities. The American Coalition of Citizens with Disabilities was founded in 1975 and became the “preeminent national, cross-disability rights organization of the 1970s,” uniting disability groups who represented a broad spectrum of disabilities.17
“People with disabilities finally recognized the power in unity,” Dr. Joe Wright says. When disability rights activists staged a massive sit-in in San Francisco, lobbied Congress persuasively, and brought their plight square in the faces of those who would be content to ignore them, they ushered in a new era of a more unified, more militant movement. For those living with chronic illness and looking for more societal support and accommodation, this angle of the disability rights movement is the most resonant.
“If there were people lying down in the streets in front of Congress it would be different,” he says, reflecting on the comparison between the fight in 1977 for the implementation of Section 504 of the Rehabilitation Act of 1973 and the lack of such powerful demonstrations from the illness community during our most recent push for health care reform in 2010.
The disability rights movement’s suspension of disease-specific goals in favor of broader needs is what differentiates it from chronic illness activism. “The political task of organizing around chronic illness, when there are people in so many situations and you have so many prognoses, is difficult,” Dr. Wright adds. “I think there are even narrower categories you could conceivably organize around—pain, autoimmune disease, increasingly expensive biologicals. I have some sense that people with chronic illness need to organize but when I sit down and try to say, what is the agenda … it is not easy,” he says. These divisions exist within disease communities too, not just among them: while some advocates push for a cure, others focus on making sure patients already living with a particular disease have the resources they need for quality-of-life purposes. In different circumstances and with disparate diagnoses, we will see this same division of focus and labor factor prominently in present-day experiences of illness.
Dr. Wright’s assessment actually points to a much larger question for all of us affected by chronic illness: Is such mobilization even possible?
If the civil rights movement gave those fighting for disability rights a frame of dignity, respect, and equality, then the disability rights movement gave people with chronic illness a framework through which they could begin to address their particular needs and challenges. This frame applies to concrete matters of accommodations in the public sphere, but it applies to the more abstract, too. Suffering and isolation are a profound part of the human condition, and of all the commonalities illness and disability share, this is the most powerful. Susan Wendell writes, “Solidarity between people with chronic illnesses and people with other disabilities depends on acknowledging the existence of the suffering that justice cannot eliminate. It also depends on acknowledging that illness is not only suffering.”18 And she’s right: living with chronic illnesses or disabilities means different ways of living, and, as she considers it, different ways of being.19
The Americans with Disabilities Act, signed into law in 1990, is the most comprehensive piece of disability rights legislation that exists to date. Its scope for the first time brought “full legal citizenship to Americans with disabilities.” Under its auspices, local, state, and federal governments and their programs must be fully accessible, businesses with more than fifteen employees must make reasonable accommodations for disabled workers, and public places such as shops and restaurants must make reasonable modifications to provide access to people with disabilities.20 When people with chronic illness sit down and talk to their employers to discuss ways to accommodate their particular symptoms and needs, it is the ADA that covers them and gives employers a set of legally defined parameters with which to avoid discrimination in the workplace. It is a piece of the legacy of the disability rights movement from decades earlier that has a tangible impact on people with chronic illness. However, just as legislation was but one part of the larger social adaptation toward people with disabilities back then, shifts in attitudes and associations are still needed to bridge the chronic-illness gap.
Some of the fundamental differences between chronic illness and disability remain obstacles. When the ADA was first written, disability was envisioned as a constant. A person’s blindness, deafness, or mobility problems didn’t fluctuate the way the symptoms of chronic illness do. As such, the ADA primarily accommodates obvious permanent impairments, rather than allowing for the fact that pain or fatigue may prevent a person from being able to perform certain tasks for periods of time, as is often the case with chronic illness. Rosalind Joffe takes a stance on this issue that she acknowledges some professional disease organizations and advocates view as an unpopular.
“I think you can’t wave that ADA flag successfully. [It is] too hard to prove you have a case,” Joffe says. Although employees should try to get what they think they deserve, issues of disclosure and accommodations are much more challenging when the problem isn’t as black and white as permanent disability is. Still, what the disability rights movement and the ADA did do was at least open up the conversation, and given the complexities of chronic illness in the workplace, Joffe sees that as an important step.
The fact that more people are developing chronic illness (remember, nearly half the population lives with at least one chronic condition already) has made a dramatic difference in the lives of people with physical disabilities. The more these patients spread awareness, share their stories, and acknowledge the challenges that still remain, the more likely it is that some of these hurdles will dissipate.
“The stereotype of the pallid shut-in will give way to a broad panorama of styles and approaches,” observes Duncan Cross. “We’re going to have to learn to treat illness as yet another aspect of the wonderful and multifarious variation on the human theme, instead of as simply a problem needing a cure. Again, that’s not to say that we shouldn’t find cures and use them when we can—but we should not treat incurable people as unsolvable problems,” he says.
Perhaps that sentiment above all others is the legacy of the disability rights movement for patients with chronic illness, regardless of diagnosis, labels, or employment. Even if we don’t get cures, even if no miracle medication changes our situations enormously, even if we stay in Aviva Brandt’s “limbo-land” permanently, we still deserve and should expect solutions to make our lives as productive as possible. The disability rights activism of the 1960s and ’70s inevitably allowed patients with chronic illness to voice this. These activists’ momentum also helped propel another movement with enormous influence on the lives of present-day patients: the women’s health movement.