In the Kingdom of the Sick: A Social History of Chronic Illness in America
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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?
Disability Rights in a Modern Context
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
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.
Chapter 4
The Women’s Health Movement and Patient Empowerment
Alicia Cornwell is a twenty-eight-year-old woman living with Crohn’s disease, the same painful and often serious autoimmune disease of the colon and gastrointestinal tract that Duncan Cross has. When she first began her diagnostic journey, she was a middle-school student with stomach pains. She underwent a variety of tests, from endoscopies to barium-swallow X-rays, hopeful that each step would bring her closer to an answer and to some relief. While the tests and consultation initiated her into the world of patient-hood, they also signaled the start of an unfortunate but all too common cycle: dealing with the dismissal of her persistent symptoms. She was told she had reflux disease, but when her problems continued, so too did the tension. As the years went on, dismissal took on a more problematic bent, as physical symptoms were attributed to emotional problems.
“At that time, my parents and I were told that my symptoms were caused by stress. I heard this for years, right up until I was diagnosed with Crohn’s [as an adult]. In fact, I had heard it so often, that until last year I was convinced I was making myself sick because I could not control my life, or, even worse, that I was making up symptoms for attention,” she says.
This story line evokes outdated images of emotionally wrought, fragile women attended to with smelling salts and placed in darkened rooms that are ingrained in historical attitudes toward female patients—hysterical patients. The term “hysteria” originates from the Greek root hystera (which means womb), and it was once believed that hysteria was caused by the womb wandering through the body. Victorian-era doctors attributed hysteria to an imbalance between sexual organs and the brain. “Problems that we today regard as associated with hormonal fluctuations, such as PMS irritability and postpartum depression, were also prominent in the diagnosis of hysteria,” notes Paula Kamen.1 The context for this Victorian-era belief reaches back much farther in history; as we know, medieval perceptions of women painted them as weak, inferior versions of men, and their monthly cycles and hormonal fluctuations were catalogued as evidence that they were mere leaky vessels, inferior to men in ways both physical and emotional. Unfortunately, this association between female hormones and character assignations is one that follows women well past medieval or even premodern times.
The term “hysterical illness” often calls to my mind the narrator in Charlotte Perkins Gilman’s “The Yellow Wallpaper,” published in 1892. In the emblematic feminist short story, the female narrator’s husband, a physician, barricades his wife in an attic bedroom, hoping that cutting her off from the outside world and from any mental or physical stimulation will cure her of postpartum depression, or “nervous illness,” the catchall phrase that is as disparaging as it is inaccurate.
“John is practical in the extreme. He has no patience with faith, an intense horror of superstition, and he scoffs openly at any talk of things not to be felt and seen and put down in figures,” the narrator says of her husband. She further queries, “If a physician of high standing, and one’s own husband, assures friends and relatives that there is really nothing the matter with one but temporary nervous depression—a slight hysterical tendency—what is one to do?”2
In line with the plight of women throughout much of the nineteenth and twentieth centuries, the narrator is physically and financially dependent on her husband. She knows that her forced seclusion only makes her obsess over her feelings more, but she cannot escape. She is trapped by the circumstances dictated by her social milieu and, accordingly, trapped by the prevailing attitudes and (mis)understanding of mental illness and gender. For example, because early-twentieth-century physicians saw mental illness as hysteria, little time or attention was given to actual treatments, save the surgical removal of reproductive organs altogether.3 Although “The Yellow Wallpaper” is a commentary on attitudes toward mental illness, its inherent points about the way female patients’ needs are valued or undervalued resonate in conversations surrounding women and chronic illness.
For Alicia Cornwell, the doubt about her symptoms chipped away at her confidence, which, combined with her age—and the accompanying assumption that young people are not supposed to be sick—exacerbated the underlying problems even more. By the time she entered college, which is when she had what she now knows was her first true Crohn’s flare, she was also exp
eriencing a worsening of her reflux disease.
“Whenever I saw the university health center doctors about esophageal pain and the newer abdominal pain, they tended to focus on the reflux. I always felt timid around doctors (particularly men, which they often were), and my fears about my ‘made-up’ symptoms caused me a lot of anxiety when I needed to get checked out. Usually I minimized my pain because I didn’t want to be perceived as whiny and weak. The fact that I minimized my pain made it even easier for doctors to routinely dismiss it,” she says.
When she was referred to her third gastroenterologist for her first colonoscopy at age twenty-one, he told Cornwell that he noticed redness and inflammation but nothing that was cause for concern. He shifted blame for her symptoms to her lifestyle, not just her constitution. He told her that as a vegetarian she should eat better, and that she needed to keep her stress levels under better control, telling her that young women like her “often develop nervous stomachs and irritable bowel syndrome because of their stress.”
Cornwell’s frustration and indignation are familiar to me. So many times in college when I was admitted to the hospital, unable to breathe through my choking phlegm and narrow airways, my physicians queried if perhaps I wasn’t just a little stressed out. I was a young college student who sounded even younger than I looked (I still sound that young), and maybe I just needed to learn to handle the pressures of work, school, and internships better. (No matter that I’d been balancing the demands of student life and illness since I entered kindergarten.) If they couldn’t explain why I always caught so many infections, why all the steroids they pumped into me didn’t control my lungs, then the causes couldn’t be physical, right?